I haven’t written for a while. Not for the entire 111 days of Norah’s life dates. Not yet in the remaining days of the, now, most difficult month of our lives.
The outreach we received during Norah’s birthday, and again during the days surrounding her “deathday” was incredible. We’re beyond grateful for all of your love, compassion, and ongoing prayers. (I tried to reply to everyone who reached out – if I missed anyone, I’m sorry!)
I’ve spent this season, Norah’s season, very secluded (not just physically). It’s almost like I self-quarantined my mind and my heart for protection and healing.
A lot has transpired for me.
A lot of brokenness. A lot of healing.
A lot of guidance. (~From Norah, from God, from Mother Nature, from the Universe, from my new self.)
I hope to write again soon.
Until then, I’ll continue listening. And praying for peace… for the entire world.
Shortly after Norah’s death, an older, wiser cousin (once removed) sent me a message that said,
“Look to those strong (generations of) women who poured their strength into you.”
The message fills me up. His words have followed me, and even carried me a bit, as my thoughts around them have evolved several times on this journey of child loss.
As Norah’s 2nd birthday was approaching we faced some new challenges. During that time, I began wearing my maternal grandmother’s original wedding band and my paternal grandmother’s medal of the Blessed Mother. The very first day I wore the jewelry I realized I felt different; safe, protected, a sense of peace that I hadn’t felt in a long time, and a different level of connection.
I couldn’t figure out, at first, what exactly I was experiencing. But after a few days, I realized that these feelings are the strength and the love that both of my grandmothers freely gave to me for the 24 and 37 years I shared with them.
At that moment I remembered, again, the words that my cousin had said to me.
I knew I had to continue to be the example that our two living daughters need, in order to provide them with the strength and love that has been passed down from many generations.
The experience has led me to embrace these 111 days, and go on a journey of intentional focus, greater strength, inner peace, restored hope, and renewed health.
They’ve let me know that their struggles and experiences with child loss have prepared me for what I must endure during this lifetime.
They’ve provided me with reassurance that they walk in Heaven with Norah, and can still remain by my side. They’re my connection to our girl and I’m certain that they’re providing her with the same strength and love that they gave to me.
Who better, besides God, could I have chosen for this role in my daughter’s eternal life?
This year, during the month of February ~Norah’s birth month~ we’re hoping to honor her life and keep memories alive by creating something extremely special for our family. We will be building a memorial rock garden in our yard and we would be honored if all of you could help create it.
Those interested in participating:
1. Must be age 0-111 to participate
2. Find a small river rock
3. Use acrylic paint to paint something that reminds you of Norah (acrylic won’t wash off and paint pens may be easiest).
4. Write your name and location somewhere on the rock.
5. If you’d like, send a photo of you with your memorial rock. Tag us and #norahslight
6. Deliver to us or mail the rock to us (our very kind post office lady has given permission to have them mailed to the address below).
7. Reach out to us privately if you need cost of supplies and/or shipping costs covered.
8. Feel free to share this post.
Thank you all for your continued love and support. We’re grateful for the strong and faithful army that walks beside us.
Avery’s Garden is a non-profit organization in memory of a sweet little boy, Avery, who was taken from this Earth too soon. His parents are dedicated to raising funds to help other bereaved parents through their journey of loss. To achieve this, they create beautiful, personalized works of art in memory of the beloved children who have died.
Recently, I decided to “unpack” Norah’s belongings and place them in a cupboard next to my bed until I can find a more suitable location. Within this cupboard is her entire life. The only physical items we have left of her.
The last, unwashed pjs she wore the night before she died, spit up included. (Left)
The romper she was wearing when she died – cut off of her by the heroic first responders, and salvaged from hospital biohazard by a dear friend. (Right)
Bottles that stored the milk that nourished her sweet body.
A blanket made by her Nana.
A baptism gown purchased by her Bia.
A nightlight given by her Godmother.
A cross that hung in her room – with prayers for blessings and protection.
A jewelry box with her birthstone – Amethyst 💜
An unused beach towel with her name.
Shoes to match with her sisters – that she never grew in to.
A Christmas outfit that she never wore.
A wet diaper.
Her tiny socks.
The tragically beautiful pall that covered her tiny, lifeless body in the casket – smelling of formaldehyde, no matter how many times I wash it.
I feel guilty for holding on to all of this when I know there are babies in need. But I can’t let it go. It’s all that I have left.
Time has exhausted me.
Tears have burned my skin.
Platitudes and dismissive jargons have worn me down.
Before I was forced onto the front lines of the biggest battle of my life, I didn’t fully understand the depths of grief. I had no idea about the ancillary challenges that would arise.
One of my greatest challenges has been focus and concentration. My personality-type requires me to be on my game in order to thrive. I require organization, order, and accomplishment in order to feel content. My job requires focus and attention to detail in order to succeed, yet there have been days that I can’t even remember names, or something that someone told me just a short time ago. It’s not because I don’t care, but because the “Rolodex” that existed in my brain has been shaken and disorganized, and many things have been lost.
However, through a lot of therapy and prayer and meditation and mental work, and grace (still working on this one) I’ve discovered some things that have helped me:
Essential oils: diffusing peppermint oil during my work day can increase my focus and concentration tremendously. I also love lemon and frankincense for this.
Breathing techniques – “smell the hot chocolate, blow out the candle.” This is a technique that I use with Addy and Sydney during their challenging and difficult times. Slow, intentional inhalation through the nose, fill the lungs, slow, intentional exhalation through the mouth. Just 10 seconds can do wonders.
Tapping – our brains can trick us into thinking dark thoughts, especially during times of struggle. By taking the index finger of one hand and tapping on the pinky-side of the other hand (we call it the “hi-YAH” area of the hand), you can trick the part of your brain (the amygdala) that’s responsible for stress responses. The amygdala hijacks the frontal lobe and forces a fight or flight response, which leads to panic, anxiety, fear, traumatic memories, invasive thoughts, etc. Regaining control of this area can help return rational and calming thoughts.
Meditative sitting – (along with the breathing techniques mentioned above) – we recently dug out the original Wii Fit to teach and challenge our girls to some old school Mario Kart. Haha! Turns out there are some useful balance games that I didn’t pay much attention to before. “Lotus Focus” is a new favorite of mine. Even just 1-2 minutes (good posture, eyes closed) can change your day.
Music – I’m a music lover. I relate to lyrics and feel rhythm. I could narrate the timeline of my life with songs from many genres. I’ve discovered the need to play music all day, during my workday, to help with focus and concentration, and to be able to multi-task and remain productive. This is one of my favorites: https://m.youtube.com/watch?v=EwCXTa1ZKNU
I’m setting my intentions today for hope, love, light, and rest to be bestowed upon those struggling with grief, anxiety, depression, PTSD, hopelessness, loneliness, and any other challenges you may be facing.
As a dear friend recently said to me when I needed to hear it most: Keep going.
The pain experienced in this second year of grief is deep, unexplainable. It’s no longer like the acute pain – the screaming, the audible weeping, the nightmares, the constant panic attacks. It’s now the yearning, the missing, the crying in silence, the reality, the isolation, the forever. I love the toddler years so much and man, am I missing my (would-be) toddler right now.
I’ve also been down and out physically, due to a foot injury last fall. I’ve gone through multiple doctors, multiple treatments, thousands of dollars, and still feeling so unhealthy due to lack of movement and constant pain.
Yesterday, I had foot surgery. I had been so nervous in the weeks leading up to it. I’ve feared that there was no fix for this. I was worried I’d live in more pain than I already do. I was stressing over my activity and ability to get healthy again. I was so uncertain going in to this, but knew I had run out of options.
As I was being wheeled back to the OR suite, we passed a nurses station with a huge dry erase board, filled with many hand-written medical notes. Right in the center of the board was a hand-drawn “bubble” with the phrase “Code 111” written inside. At that moment I smiled and a tear ran down my face. I felt instant calmness and relief. I knew that Norah, my toddler, was right by my side.
I’m happy to say that I’m already pain-free. I know things will improve for me soon and my health will return. Here’s to 2020, with my little “Code 111” standing by.
I have heard this phrase many times. I never truly understood what it meant. I mean, I knew the definition – but I never felt it.
Until Norah died.
But here I am… finding what serves me (us, as a family). Shedding what doesn’t.
Our surroundings did not serve us.
Our lifestyle was too hectic.
Hank’s career was peeling away his soul, layer after layer; it was affecting his health; leaving too many gaps in the non-monetary needs of our family.
Each and everyday I thank Norah for enlightening me. For enlightening us. For continuing to work with us. Her gifts are vast. Her light shines so bright. She has saved us in so many ways. It’s a hard concept for me to grasp sometimes – that our daughter’s death saved our lives, especially when there was a time when it seemed totally opposite. But now I realize that it is her life, on Earth and in Heaven, that’s saving our lives.
I’m proud of her. I’m in awe of her work. I’m blown away by the strength and power of a tiny human. Our tiny human. I’m grateful. Grieving, yet grateful.
I now sit atop of a mountain, closer to God and Spirit and nature…. and Norah. I’m wiggling in and figuring out how to recognize and utilize the things that serve us.
We still cry.
We still ache.
We still struggle.
We still long for the one who is forever (physically) missing.
But, we have plans again.
We have visions again.
We have hope again.
My hope is to do whatever it takes to continue to help my family. To help others. To help myself.
The age-old phrase that we, as humans, often say in an attempt to comfort ourselves as we’re offering “comfort” to others who are grieving. It turns out, for a grieveing mother, this phrase is not at all comforting. But there’s another side to it. A deeper side.
I believe that even the most broken things can change over time, but no, not ALL wounds fully heal.
I’ve found hope, however, in discovering something different that can occur over time – if we work hard and use time to do something specific – to discover, to ponder, to soul-search, to live within a deeper realm. So for me, “time” has given me the gift of enlightenment.
I’m only at the beginning of this journey, with Norah and God right by my side. For me, pushing away the connection with my daughter, leaving memories behind, and losing my faith would have taken me to my breaking point. If I had turned my back, I’m certain that my life would have ended. But I wanted something bigger. I have too much goodness surrounding me, even in the most extreme darkness. I saw my other two girls and knew there was so much ahead of us – so much more light ahead; my hope deepened. I felt God’s presence more than I ever had in my life; my faith deepened. I looked into my husband’s deeply aching eyes and knew we had to change how we were “using” time; my love deepened.
We’re now in the process of beginning a new life, and what we consider an adventure of a lifetime. We’re moving from the fast-paced “city/suburbs” life with insane schedules and limited quality time together, to the mountains where we feel closest to God and to Norah. Where we will have so much quality time, so many new hobbies, so much healing work on our land (both physical and spiritual), and opportunities in nature that will continue to enlighten us throughout our remaining days on this Earth.
No, we have not hit the lottery – in fact it’s quite the opposite. We’re giving up half of our income simply for time and togetherness; to sit in our grief and to deeepen ourselves; to find hope in the stars and a love we didn’t know existed.
I can assure you that money means nothing. It’s useless when your dinner table has someone missing, when your heart and soul are not full, and when your spirit is not enlightened.
We will soon be able to fully embrace each other and the new life we’ve been gifted, in nature, closest to God and to Norah. We’ll soon be able to see the sun shining… in a different light.
Reliving “the space between” (Norah’s life and death) proved harder than I had anticipated. Although, I tend to not anticipate much of anything anymore, because nothing is predictable. Nothing.
I’ve been “quiet” during these days because I had nothing to say, nothing to convey, nothing to openly sort through. I was simply “sitting” and “listening” and “learning.”
Admittedly, there were weeks early on in the “space between,” that I experienced the lowest of lows. There were times I wasn’t sure if I wanted to keep going. Times in which I cried out to God, and to the universe, and to anyone who would listen, that this life was so damn unfair. But Norah interceded. She gave me clarity and showed me the beauty that was still in front of me, even that of her life, and her death. She encouraged me to keep going.
I suddenly realized, as we closed this chapter last Saturday afternoon at 2:39pm, and as we were preparing for the funeral of my Nanny, who was deeply connected to Norah, the experiences we’ve had in this space between were Norah’s gifts of love and light:
The ability to slow down
Truly listening, even in silence; especially in silence
Through a lot of pain and a lot of tears, a lot of grinding into the depths of my soul, I survived. Because of the way she presents herself to us. Because of the way she has made intercessions for her family, especially her sisters (thank you, Norah), and many others. The way she has strengthened her Momma and Daddy’s marriage. The way she has restored faith for so many here on this Earth. The way she has shown us the important things in life. I know now that I’ll continue to survive, because of the gifts of love and light that Norah gives to this world.
2633 hours and 39 minutes is all we had with her here on Earth.
2633 hours and 39 minutes that we’re so grateful for.
2633 hours and 39 minutes that has led us into a lifetime of love and light.
Norah’s presence is stronger than ever.
Click the link below to hear a very special song in our journey.
I have been receiving many messages about my blog, so I wanted to share a bit on how this work unfolded and what it has done for me. In previous posts I mentioned that journaling and blogging are therapeutic for me – it helps me remember, reflect, and reorganize my brain and my life.
My writings are organic. They usually begin with a photo or a memory that comes to me in a dream or a thought that crosses my mind during the day – one that I can’t always articulate or release otherwise. None of it is planned. I usually end up with a title at the end, after seeing where the writing journey takes me. There are often gaps in time because I only write when I’m given the information that my brain and my heart need to “download” that day. I believe the information, or the calling to write, is given to me by Norah and by God; sometimes by nature, sometimes by the universe, and sometimes simply by memories of events that inflict a visceral reaction, needing to be released.
Thank you for continuing to read.
April 15, 2018 – Addy’s First Holy Communion and Norah’s Baptism: a day that will forever hold a special place in my mind and in my heart.
I was a little apprehensive to have Norah baptized that soon, due to the timing – the end of flu season and her being just seven weeks old. (I am very attentive when it comes to all of my girls’ health, but for “some reason” I was extra-vigilant with Norah’s.) But I had an overwhelming feeling that this was the right time.
Being that many of our closest family members live out of state, we decided that it would also be most convenient for those we love to share in the sacraments of both Addy and Norah. Father Tony graciously agreed to make this work, so we made the decision to move forward with the plan. We relied on good hand washing and the strong immunity that she and I had been building in her body for almost two months.
Recent reflections of that day have brought so much light to the darkness:
• The altar was still decorated in celebration of Easter, as the Easter season lasts SEVEN additional WEEKS, into Pentecost.
• Norah was not baptized from the usual baptismal font, where both Addy and Sydney were baptized, but instead from the font leading to the altar, which was filled with holy water from the Easter Vigil.
• We were able to enjoy the experience of having so many of our closest family and friends present to meet Norah and to experience the light and love from our three daughters, referred to by Uncle Jack as “The Northern Sisters,” all together.
• Our last photo as a family of five was captured on this day.
• The beginning of the last half of Norah’s beautiful life here on Earth began, as she was blessed at her first (of two) sacrament. Her second and last sacrament was by a wonderful Priest sent to us in the emergency department, to pray over her and perform (an infant version of what I consider) her “last rites,” as she laid dead on a hospital gurney.
I’ve always been a very spiritual person; faithful to God and the beliefs I was presented with at a young age. But Norah’s life and death has brought my faith to a new level. It has become the foundation in my reflection and for my survival as a bereaved mother.
I’ve recently been reflecting on the symbols of baptism, specifically The Baptism Light, for which a special candle is used on the day of baptism to represent moving from death to life in Christ.
One Year Later
April 15, 2019 – Notre Dame Cathedral is (mostly) destroyed by fire.
I try not to become overly affected by news anymore, because I simply do not have the strength for extra emotions or the capacity for negative feelings beyond what I experience in times of deep grief. But some things still lay heavy on my heart.
For obvious reasons, crimes or accidents that involve children affect me heavily. The massacre at the Tree of Life Synagogue devoured my attention for days, for weeks actually, because it was so close to home, I also have very close friends who are Jewish. The lives of good and faithful people were tragically stolen due to antisemitism.
Yesterday, the fire at the Notre Dame Cathedral affected me more than I expected, but I could not pinpoint why. Perhaps the loss of a landmark that holds hundreds of years of history? The religious and cultural connection? The people of Paris, and around the world, who are directly affected by the loss?
Then, today, I woke to see magnificent images among the devastating damage. I was enlightened by remarkable news – news of miraculous light and perfect timing, both of which remind me of Norah and her life here on Earth and in Heaven.
• “The cathedral’s golden altar cross was seen standing as officials surveyed the charred structure. Votive candles lit prior to the blaze — each one symbolizing a prayer — still flickered undisturbed in the cathedral,” CNN reported.
• According to Doreen Carvajal The New York Times, “Instead, in a miracle of timing, the sculptures of the Twelve Apostles and four New Testament evangelists escaped a fiery end when they were plucked by cranes and removed just days before the blaze in Paris on Monday.“
Sculptures of the Twelve Apostles and four New Testament evangelists were removed for restoration just days before the Notre-Dame cathedral in Paris caught fire on Monday. Credit Credit Georges Gobet/Agence France-Presse — Getty Images
• “Notre Dame was destroyed but the soul of France was not,” Michel Aupetit, archbishop of Paris, told RMC radio.
I’ve been even more enlightened now by something a dear friend, and one of my greatest supporters, sent to me recently during some of my darkest of times: “The light shines in the darkness, and the darkness has not overcome it.” John 1:5
Through all of this reflection, the significance of the date, Holy Week, the incredible photos of our three loves, the fire at the Notre Dame Cathedral, and the light surrounding me, I’ve been reminded that though my family’s hearts often feel destroyed, our souls remain intact. We’re still grieving but now growing, and will continue to shine the light of Norah’s life until we’re no longer able to do so.
I’ll forever dedicate this song to Norah. I sing it to her daily.
I’ve been “camped out” for almost 7 weeks now, reliving every moment of Norah’s time here with us.
There’s been a lot of reflection, a lot of meditation, a lot of prayers, a lot of tears, a lot of smiles, a lot of fears, a lot of hugs, and a lot of pain for the four of us.
THIS is the space between Norah’s incredible birth and her tragic death. This short space was her entire life. This time is filled with the most beautiful memories, meshed with the deepest, most painful physical and emotional pain; so deep that I couldn’t have begun to understand the depths of it prior to experiencing it firsthand.
There have been haunting moments filled with the deepest darkness – moments I did not anticipate happening again; moments that almost destroyed me. There have also been moments of renewed light that I haven’t been able to experience in quite a while. Joy and gratitude is felt so much deeper now.
However, I continue to live a life constantly questioning myself and others, lacking confidence in my mothering skills, losing my zest for life and laughter, still trying to get to know the “new me,” feeling like a failure because I couldn’t keep all of my children alive. Grieving. It’s an ongoing struggle knowing that we’re not at all spared from losing our other two children just because we’ve already lost one – dark thoughts are prevalent when you experience the darkest times. Yet through all of this I’m learning to laugh again, I’ve experienced joyful events, and I’m beginning to see growth within my mind and within my soul.
It’s all so confusing.
It’s all so terrifying.
It’s all so exhausting.
It’s all so enlightening.
Recently, of course, a lot of memories have been resurfacing. So many beautiful photos have been reminding me of what we had, and of what we lost. They’ve forced me to revisit the time when I was privileged with giving my all to all three of the beautiful girls who grew inside of me and who are a part of us. I was nurturing everyone in every possible way I knew how.
I was gifted with a book, an amazing book, at the retreat I attended last year:
You Are the Mother of All Mothers: A Message of Hope for the Grieving Heart by Angela Miller
This book has given me so much hope and comfort, on both my darkest and brightest days. It’s been a much needed reminder, in this space between, of my mantra: “Love is all I’m capable of.”
Addy was sent home from school yesterday, due to sudden illness. Typically, (aka: in my “previous” life, before losing a child and then experiencing the significant scare of potentially losing another one), I’d stay vigilant but would let my kids rest at home and keep them comfortable while their bodies did the job to fight off an illness. But now, I’m a bit hyper-vigilant (traumatized), and I closely follow my intuition and my fears, when I feel that tug in my mind and in my gut.
Thank God for Children’s Hospital of Pittsburgh!
Upon initial assessment in the ED, Addy’s vital signs were not good, which caused the suspicion of septic shock. Because of her unresolved clot, there was concern that a bacterial infection could have formed around her heart.
After several tests, all of which were negative except for one, it was determined that this event was totally caused by Influenza A (which is what she tested positive for). I’m grateful for the doctors and nurses who were very much on top of things.
I’m not quite sure why “things” keep being “thrown” before us. I understand that it’s life. And life can suck. But it has felt very intense lately.
All I can come up with is that these things are “strength-builders.” Constant reminders that we aren’t spared, even though we’ve experienced the greatest loss. I’m not sure why we were chosen or why these things keep happening. But I’ll tell you for certain that it’s continuing to make me a better, more spiritually connected person.
A Note of Love and Light
Exactly one hour before I received the call to pick up Addy, a very important support person in my life sent a text… she had been driving behind a school bus – Bus #111.
The angel number. Norah’s number.
I smiled big and thanked her for sharing this with me. I love seeing signs from our girl, even through those close to us. I didn’t consider something deeper that may have been trying to catch my attention.
Then later, as Addy was being taken back to a room in the ED, a little girl named Norah was called in right behind us.
I’m certain that Addy and Norah have been chosen to serve each other in some capacity beyond what we’re able to fully comprehend. Their very special bond continues, and it’s been amazing to witness, – in both life and in death. 💛 👼🏼
(Disclaimer: lots of photos… documentation of my life, my love, my pain, my joy.)
Raising children after losing one is one of the hardest parts of this life-long grief journey.
I mourn for our Norah. I mourn for my self… for the person I was before. But an unforeseen piece in all of this is mourning for the childhood innocence and bliss that was stolen from Addy and Sydney.
Addy and Sydney are old enough to fully understand the magnitude of Norah’s life, and therefore the magnitude of her death. During Norah’s 111 days here on Earth, they hugged her, they kissed her, they held her, they fed her, they played with her, they comforted her, they made her laugh, they rocked her, they sang to her, they told her stories (from their books and from their minds).
They knew her.
They loved her.
They know her.
They love her.
They prayed for her life, and then they witnessed the horror of her death (and the sounds and sights that occurred after). I thank God everyday that they were not the ones to find her, as they often would go into her room to wake her when it was time.
These two girls now have new depth. They have developed a new level of maturity, different types of fear, and a difficult understanding of life and death that, as parents, is so difficult to witness happening while they’re still so young. But for those of us who have been dealt this hand, it’s unavoidable. It’s a lot of work, but boy are they working hard. They’re becoming stronger, more empathetic, more connected, and more faithful humans.
I’m so grateful to have them, so happy to see their progress, so proud of who they are, and so excited to see who they’ll become.
I keep going for them, because of them. The strength that is so often mentioned to me is not mine, but theirs. They are the reason I so quickly sought the help that I knew I would need to survive this. They are the reason I am not afraid to show my deep pain, because it also shows my deep love. They are the reason I’m able to “see” the road ahead, even when it’s not at all visible. They are the reason I hold on to hope. I have to… for them.
Olive (the cat who is nothing like a cat) became extremely connected to me during my pregnancy with Norah. She was the first pet Norah was introduced to when we arrived home from the hospital. Norah and Olive were infatuated with each other from day one.
Olive often laid near Norah, as if to keep watch. I looked forward to the toddler+feline shenanigans that would occur… that should be occurring now.
After Norah died, Olive, who never leaves my side (she even sits in the shower with me!), avoided me for two weeks. She would run when I approached her or leave a room when I entered. I’d often find her hiding, for hours at a time, under Norah’s crib (where she had never gone before because we didn’t allow her in the nursery). While hiding is very “cat-like” it’s not at all something that Olive has ever done. She’s a social cat; always out and about, running to the door when the doorbell rings.
Over the last several months, we’ve noticed that sometimes Olive seems to contain Norah’s spirit. She will often curl up with her paw on her face, the same way Norah loved to sleep. She will occasionally approach me with a deep, loving stare, and rub her paw on my cheek. Those times are always so incredible.
This week has been one of my toughest, thus far – an earthquake-like transition, a tornado of emotions, a very painful and difficult time.
I’m trying to get to know the stranger living inside of me; trying to be patient and accepting of my new self; trying to learn to like someone within, that I don’t actually care for and don’t understand, but can never escape.
It’s a frightening and lonely journey; it goes so much deeper than death. It’s indescribable, really. There are no breaks from this. It doesn’t leave my mind or my heart. It feels as though I’ll never breath the same air again.
Yet during all of this, when she should sense the pain and perhaps want to hide again, this cat has been totally in tune to my needs. Always “checking” on me. Always following me when I’m here alone, and laying in the doorway of my office/Norah’s nursery, as if to keep watch over me now. Tonight was simply a quiet cuddle, as she fell fast asleep with her paw on my hand, as if to say words that have been presented to me before during meditation and in my dreams, “It’s OK Momma. I’m right here.”
As we approached Norah’s birth month, we entered with hesitation, reservation, and ongoing grief. Afterall, this is our first time “celebrating,” or facing, or enduring, the birthday of our deceased daughter. When I stop and sit in that concept it makes my chest ache and burn. It’s all still so confusing. How did this happen to us? We are good parents. We provide the best care and the most love for our children. How are we surviving this life? How are we pushing forward, when it feels like time has stopped? All of those repetitive thoughts are haunting. I suspect they’ll last a while… forever, perhaps.
Then, last week, in “perfect Norah timing” we received the documented, final pathology results of our Littlest Love’s brain. Our sweet girl had significant brain damage and had suffered several small strokes, both of which occur during a hypoxic-ischemic event in utero. The results also correlate with the pathology of the placenta, which showed severe aging and malperfusion, or poor blood flow, and a possible impending hemorrhage. None of which were detectable (I had my last ultrasound just 10 days prior to her birth), or preventable (this pregnancy was the healthiest of my three), or fixable (that part really sucks!).
My instincts and my worries, from even before we found out I was pregnant, were correct. My nightmares about her having a brain issue were actually a premonition. She had been giving me all of the signs long ago, but didn’t exhibit symptoms based on these findings. She “told” me that our time was limited, I just had no idea that it meant her life would be so very short. Afterall, our time is limited with all of our children, as they all grow so quickly. We fully embrace the growth of Addy and Sydney now – it means they’re alive.
Norah is a true miracle in so many ways. She lived a very short, but very full and healthy life, when she shouldn’t have even made it out of the hospital or achieved any milestones. She would have had a rapid health decline, and a fatal prognosis, had she lived past her 111 days. While her life was short, we know that she was spared from suffering.
None of this lightens the grief, but it does absolve me from constantly questioning my mothering abilities. She has given me more confirmation of love and instincts, of the overwhelming maternal bond I had with her, and of the comfort and care we provided her with, as well as all of the incredible things she gave to us. However, answers leading to why a child died just aren’t enough to repair the life-long aching in the missing piece of her parents’ hearts.
*Note: Norah’s remains are now at Seattle Children’s Hospital, undergoing intense and focused research to help eliminate SIDS for good. We continue to hope and pray that others will be spared from that monster.
If you or anyone you know is interested in learning more about SIDS research, just as we were, please visit the Aaron Matthew SIDS Research Guild of Seattle Children’s Hospital at http://www.givetostopsids.org
This organization has also partnered with Cribs for Kids, where we are part of an amazing bereaved parents group.
I’ve learned, once again, the things I hope and pray for aren’t always presented the way I’m expecting. You’d think I’d understand by now that I don’t always get to choose the path or call the shots, but damn, how life and God and Mother Nature and the universe continue to surprise me.
My hope for 2019 was some relief from my deep grief, with focus on gratitude. I had journaled about it just a few days before Addy was admitted to the hospital on January 4th. Little did I know that my “relief” in grief would come through a shift in my focus during a 12-day hospitalization, for the very serious illness of our Biggest Love; and the moment that shook us to our absolute core (again) – when doctors sat us down on January 10th and told us they suspected that she had a fatal illness in her vessels, caused by the clot that had formed in her jugular vein secondary to the size of the infected lymph node in her neck. (Note: She DOES NOT have that fatal illness! – there’s that focus towards gratitude!!!)
We were faced with hours of dread, and fear, and pain, and, literally, physical illness over the possibility of losing another child; of losing Addy. My faith and my sanity were tested; both of which didn’t seem to exist during those hours, because I was so confused and shaken (again). Once again, I heard myself loudly weeping and begging to be woken from yet another nightmare. I cried out asking why this was happening to us again?! What had we done to deserve this?? I was avoiding going in to her room, for fear of her seeing me in that condition; making up every lame excuse possible as to why I wasn’t in there with her. My daughter needed me, I needed her, and yet here we were. Again.
But even through some of the worst moments of our lives that day, Norah was there to shine her light on this frightening situation, again (hello, gratitude!), as she had been showing her presence the entire time – (in one bright star outside of Addy’s hospital room window when she was first admitted, in a random streak of a rainbow that showed up over the river the morning of her first surgery, in the brightest rays of sunshine very early in the morning when I stepped into the sunroom area outside of Addy’s room, for coffee and prayer and meditation, in the tiny “baby feather” that “randomly” floated down from Addy’s hospital room ceiling).
I believe that Norah and God must have had a plan to really grab our attention this time, though…
After Addy’s diagnostic CT scan to determine whether she had the fatal illness, we were placed in a holding area of the radiology department. I was certain that we were being held there while doctors quickly read the scan to determine the need for an emergency surgery – this was all something I had devised in my own head. I guess that’s just an unfortunate part of PTSD. After waiting for a few minutes (that felt like a few hours) an elderly woman walked over to our bay and said, “Is your name Addison?” Addy confirmed. She kindly spoke again and said, “My name is Nora and I’m going to take you back upstairs to your room.”
What?! Could this be happening?? At that moment I was shaken back into reality and my faith was instantly restored. I began to cry and told Nora our story. She said she felt as though God put her there with us.
Before leaving Addy’s room, Nora asked if she could hug me. As we hugged, she whispered into my ear, “God is with her, she’s going to be ok.” At that moment I felt so much peace and hope. Thank you, Nora!
Thank you, Norah!!
As hours unfolded and prayer chains had linked around the entire world while we waited for answers, Addy’s frightening physical symptoms mysteriously – no, miraculously – disappeared. Everyone stood at her bedside, confused and surprised, wondering what had happened.
But I knew what had happened.
Final results of the CT were given to us. Negative!! She was going to be OK.
God had answered prayers. We believe that a miracle had occurred right in front of our eyes. We would wake up joyful and relieved the next morning, 1/11 (111 – Norah’s days here on Earth, her number, the “angel number”). My deep, intense connection with my Littlest Love, and all of my loves, was confirmed AGAIN, as was my faith in God.
Norah was there to see Addy through hurdles, as the doctors and nurses provided the care, as Hank was her coach and cheerleader, as I was her advocate, and as God led the way for all of us.
I am so grateful to have experienced something so rare and so beautiful, even through the grief of losing Norah and during the fear of losing Addy.
However, I am now also facing the aftermath of being spared from losing a child, only to wake up again and again to the reality of having already lost one.
Good things can happen, really good things, even during bad times.
This life is a constant battle between gratitude and grief.
We made it through the holidays. Thanksgiving brought some much needed laughter. Christmas reminded us of the joy we’ve been blessed with. Addy and Sydney were amazing in keeping me going, and they didn’t even realize it. We incorporated Norah into our days in so many beautiful ways. What strong and amazing daughters we have – all 3 of them.
However, the New Year has come with a lot of anxiety and a few steps back in my progress. I have feared leaving 2018 since around the time of Norah’s death, as 2018 was HER year; the only year in which she lived. And the year in which she died. I’ve been praying hard for God’s mercy and for some relief from the deep, dark struggles I’ve been facing, as grief comes in waves and this one came crashing down upon me.
Then today happened, and God showed His mercy. It was not in the way I expected, but clearly MY expectations in life are not always the plan. It sucks. A lot. So much. More than I can put in to words. (Did I mention it SUCKS?)
But, oh how we’re grateful for second chances and God’s mercy.
Tonight, I’m sitting here writing this next to Addy’s hospital bed, (as she sleeps comfortably and our adrenaline slows down), feeling an amazing amount of relief; feeling God’s mercy and Norah’s love and light surrounding us.
You see, today Addy had a major health scare. It all began with symptoms of a muscle strain earlier this week, and then progressed into fever, neck swelling and pain that Motrin was no longer helping, limited range of motion in her neck, nausea and vomiting when she woke up this morning… I feared she had meningitis so to the ER we went.
I knew something was of major concern when we were first escorted to the Critical Care section of the ER and two doctors and two nurses walked in before we could even sit down. I was reassured when they ruled out meningitis. Next up, a strep test (since she was exposed to me, who had strep last week.) Negative. Ok moving on to a neck ultrasound. And this is where things went haywire for all of us. A “consolidated” area was found in her neck, compressing her left internal jugular vein.
Some whispering and a lot of medical jargon began.
I felt like I was going to pass out.
Body language and verbal language I understood from my days as a provider.
A whirlwind of events.
My head was spinning. My heart aching more than before (didn’t know THAT was possible). My head throbbing. My stomach sick.
We waited for about 2 hours (or was it 2 days?) for all test results to come back. High white blood cells (infection – ok I can handle that), low sodium (dehydration – totally fixable, ok tell me more!), and then the news that I’ll forever be grateful for. The CT scan showed that the “consolidation” is NOT a mass. NOT a tumor! Thank you, God!!!!
Addy has an abscess within a lymph node along with cellulitis in the soft tissue of her neck. The swelling is causing compression on the jugular vein, but because she’s healthy the other jugular is compensating for blood flow until the swelling resolves.
Believe me when I tell you I could have kissed and hugged and danced with the doctors when we received this news. (Perhaps I’ll do that at some point during our stay here… “Code whacky mom, room 633.” Hey, I’ve been called worse.)
So, we’re camped out here at Children’s Hospital of Pittsburgh until Monday, as she receives IV antibiotics and the close watch of an amazing team of nurses, and a top-notch ENT and Surgical team. Everyone is hopeful that surgical intervention will not be necessary, but if it is we know that it’s just a small blip in this “adventure” (is that what “they” call this?).
Regardless, we’re grateful for positive news, for parental intuition, for access to a fantastic hospital, for the extraordinary health care providers who were assigned to us today, for an amazing pediatrician who showed up in her ER room and had the docs calling his cell phone with updates, (this medical team cared for me, too, with empathy, and tissues, and water, and gentleness, and whatever I needed during my bit of an emotional breakdown – ok, I actually cried a few thousand more tears), a Resident physician who had the wherewithal to suggest the ultrasound (I gave him kudos in person and will write a letter to his bosses to give him more kudos), our amazing school community, all of our prayer warriors who had prayer chains going and candles lit and healing vibes sent our way, the most amazing bosses and co-workers anyone could ask for, an incredibly supportive group of family and friends, my husband – my rock/the best daddy in the world, and GOD’S MERCY.
Yesterday marked five months since Norah’s sudden and unexpected death.
I didn’t cry.
To be honest, although I was very aware of the approaching date, I wasn’t “aware” of yesterday until a few hours in to my day, when I realized I hadn’t cried. Realizations like that cause a vision – like one in a movie – of moving really fast through a noisy, bright tunnel. A blue tunnel. Always blue. I’ve learned that these “visions” occur for me when my brain and my heart catch up with one another and attempt to realign on this journey together.
I sat in my thoughts, in my grief, silently and without tears. Ironically, it felt good to sit in a painful place (where I have no choice to leave) but without the pain of outward mourning.
I looked out my office window to see ice falling from the sky; snow was in the forecast. Winter is my favorite season so I wasn’t upset by this, but I was surprised. While this type weather is not uncommon here, it’s unseasonable. Like death. Not uncommon, but always unseasonable. My thoughts stopped there and I resumed my day. Norah felt so close.
This morning, as I drove the girls to school, we talked about how much we all love winter. How they’d make snow angels and watch a Christmas movie and snuggle with us this weekend; how this would have been Norah’s first time seeing snow.
Then we came upon this:
I have been on this road countless times, multiple times a day, but today it looked different. The road was empty, but so beautiful. The snow surrounding it looked almost as if it was protecting the path, sheltering it from anything else that could come in from the sides. I was very aware of the curve in the distance, as it appeared almost intimidating today. But I felt a sense of unexpected peace. So much so, that I stopped the car in its tracks to take this picture, and to sit for a few seconds in the beauty.
Peace. Peace that Winter came early. A new understanding of why I have always loved this season so much, why all four of us love this season- it’s the season when Norah was born; early.
Was God always preparing us for this season? To allow us to find beauty in the cold? To find peace in the desolate roads? To find comfort in the surrounding snow? To feel soothed by the barren trees? To approach the curves ahead with faith and grace? To find Norah?
Winter is her season. She’s the only one in our household who was born in the winter, the rest of us were born in the summer; the beginning, the middle, and the end of summer, to be exact. And while our births open and close the season of Norah’s death, her birth opens and closes a season of peace, light, induced warmth, comfort, gratitude, family, and love.
I’ve been awakened to understand that life is like that fast, loud, blue tunnel. Everyone is flying through it, not taking time to let their brain and their heart realign, and enjoy the peace found in a “season” of awakening.
But when you’re faced with that scary curve, one you’ve never even thought about before, you’ll be shaken in to an awakening so powerful that you’ll likely never be able to go back.
There is a journey amongst all of us; a deeper meaning. A time to slow down.
Sitting in our life – wherever it may be.
Really listening – to yourself and to others.
Letting go of the small stuff.
Embracing what’s right in front of you.
Do all of it before a tragedy, an unseasonable death, forces your awakening.
When we first found out I was pregnant with Norah, I remember telling Hank that the second half of my pregnancy would go by so fast, as it would occur during my favorite time of year – Fall and Winter, holidays and happiness – and then she’d be here! I remember imagining the return of my favorite time of year, as a complete family of five, with Hank and our three daughters.
Soon after Norah was born, the girls decided they wanted a Halloween theme for all three of them; they were going to dress up as Alvin and the Chipmunks; Addy as sophisticated Simon, Sydney as ornery Alvin, and Norah as cute, little Theodore.
I washed the “Baby’s First Thanksgiving” turkey bib along with all of the other baby clothes, so that it would be ready for our traditional Thanksgiving/Christmas weekend with my parents and family. How awesome it would be to go around the table saying what we’re thankful for this year.
I had the red and white hat that Addy and Sydney wore, ready for 6 month photos. We would gift my parents with another canvas photo that would fill the fourth and final empty spot on their “grandchildren” wall.
I had visions of Christmas cards, full of love and life, in their coordinating Christmas outfits which were purchased the month before Norah was born, because I just couldn’t pass them up.
I imagined attending the school’s holiday Christmas program, while Addy and Sydney participated in singing, and Hank and I sat in the church pew with Norah as a bouncing 10 month old; giggly and wiggly as she looked for her big sisters on stage.
We’d attend “Breakfast with Santa” at church and get to experience all three of them sitting on Santa’s lap, before anyone was too old to want to do this.
I’d sneak out of the house in the wee hours of the morning, leaving Hank with all three girls, so I could stand in line to purchase the hard-to-find-hottest-toys of the year. I had “number three” budgeted in to my Christmas savings plan.
This year we’d have another little person to add to the traditional “Guerke Christmas-morning on the stairs photo,” which has been a tradition for generations.
She’d try turkey and mashed potatoes for the first time. She’d be in awe of twinkling lights and tinsel; I can imagine how her beautiful steel blue eyes would twinkle along with them. She’d make our hearts burst as we all watched in love and amazement, as she crawled into everyones laps, and tried to eat wrapping paper, and drooled all over her Christmas pjs.
We’d ring in the New Year as a tired but oh-so-complete and joyful family of five, ready to welcome new beginnings and plan a first birthday party.
We’d bundle up all three of them and play outside in the snow, until cheeks were red and the warmth of our house was calling.
And now, here we are. I held my breath and my tears, as we purchased Halloween costumes. I now have the bib and the hat packed away in a “memory box.” I hid the Christmas outfits, hoping that Addy and Sydney would forget about them. We don’t have the canvas photo for my parents, because Norah never made it to 6 months old. Our arms will be empty at the holiday Christmas program and I have no idea what the hottest toys of the year are. I’ll miss Breakfast with Santa this year, because I’m attending a bereaved mothers healing retreat. I removed “number three” from my budget and a symbolic bear that holds her remains will sit in the traditional family photo. We now have to look for her spirit in the twinkling of beautiful Christmas lights. The New Year will be painful, as it will feel like we’re leaving her behind in the only year she lived in.
There will be no first birthday. Or any birthdays.
The anxiety of my favorite time of year is heavier now than the joy I used to experience. I haven’t taken a deep breath in weeks. I’m trying my hardest to maintain joy and happiness for Addy and Sydney, as my chest aches from heartbreak and my eyes constantly sting from tears.
For when one of your greatest loves is missing, your favorite time of year will never be the same; nor will any time.
The past couple of weeks have been as difficult as the first few. We’re learning that this type of grief doesn’t follow the “normal” pattern of stages. The stages of a grieving parent are like a revolving door and each day it’s a surprise as to which one we’ll wake up in; many times we’re in multiple stages all at once. We’re only holding on to each other and our faith at this point.
We’re often unable to answer questions because we don’t know how to. So forgive us for the one line lies that we sometimes respond with, when asked how we’re doing, because we’re too exhausted to tell you the truth.
We’re finding that time does not heal, but actually pulls us further away from when Norah was here with us; further into the reality of her being gone.
We are beginning to discover that in this tragedy a multitude of things happen, while so much stops happening. Some people stay, some people go, some people enter. The world keeps spinning even after ours has stopped.
Nothing is for sure. Nothing makes sense. The next minute could be the end, yet we have to keep navigating through the darkness.
One thing that’s for certain is the love we have for our children. We will care for them and love them with our entire being, regardless of where they are.
For our daughters here on Earth, we vow to continue to give them opportunities for a lifetime of respect, love, happiness, and success. For our daughter in Heaven, we vow to continue to shine her light and spread her magnificence throughout the world, since she no longer has the opportunity to do that for herself.
Thanks to all who continue to stand by us as we embark on this new journey through life.
October 4, 2018… a day I’ve been dreading for weeks.
Initially, I began dreading it when I looked at the calendar back in August (when I was finally able to look ahead again) because today I have a dentist appointment.
This dread isn’t because I don’t like going to the dentist. In fact, I love going to the dentist. But my last dental cleaning was six months ago, which means it included Norah.
I can’t remember much these days, due to the short term memory loss associated with traumatic grief and PTSD, but I remember that day. She was adorable, as always. The staff doted on her and happily congratulated me. They allowed her to lay on my chest during the appointment; she always did best when she was close to me. The dentist was thrilled with the condition of my gums for being newly postpartum – no pregnancy gingivitis. I remember walking out of there feeling relieved that we made it through an appointment without a feeding; she was still eating every 60-90 minutes and I wasn’t comfortable or coordinated enough yet to nurse her in public. She was such a good baby. And that day she remained content, just lying on my chest during the visit. We went home and snuggled on the couch for a few hours, as we always did during our alone time together, while I was still off of work. Thank you, God.
I haven’t been back to the dentist since she died. They don’t know. I’ll likely have to answer questions. They’ll likely regret having asked me.
“How’s the baby?” or “Where is the baby today?” Or the worst question of all, for which I have no idea how to answer and no energy to try, “How are you?”
(“She’s dead.” “She’s in Heaven.” “I’m… surviving.”)
I’ve sat in this anxiety for a while now, in order to get through it – from a mental health standpoint, that’s what I’ve learned you have to do to eventually make these feelings tolerable, and no longer visceral. My therapist describes it as learning to ride a bike – you fall at first, and again, and again, but eventually you stop falling and you begin to learn to pedal and control the riding with just some wobbly movements. After some time, you ride without wobbling. You always know there is potential to wobble or to fall, but you’re (mostly) able to control the ride.
I have spent so much time forcing myself to feel every ounce of the pain. (I want to get “better”; I want to do this work successfully.) I worked really hard to move my way through the pain and fears, but I still felt heavily unsettled. I dug deep into my brain, trying to find an association, a trigger, with dental visits, or teeth (teething maybe?), or something else that could directly cause me to mourn so heavily.
Then it occurred to me.
I looked at my calendar and counted. I counted over and over again to understand what I was seeing. There it was. Something I had never even thought about (I’m finding those “somethings” happen a lot when your kid is dead.) Today, Thursday, October 4, 2018, marks the day that Norah has been dead for as long as she was alive. Norah lived for 111 days and now she’s been in Heaven for 111 days. And my heart continues to break, all over again, as this song keeps playing in my head: https://m.youtube.com/watch?v=kPBzTxZQG5Q
I love you, Norah.
I can not wait to be with you again.
*Coincidentally, or maybe not, 111 is known as the angel number.*
One of my ongoing therapy assignments is to find at least five minutes of joy each day. At first, I had to be easy on myself and just be willing to accept oneminute of joy, because sometimes that’s all that was possible. That sounds ridiculous, right? I have an amazing life and a beautiful family right in front of me. But any grieving parent will know that when one of your greatest loves is missing from your troop, it’s very difficult to overcome the emptiness and sadness, even when happiness and hope is present.
I’ve wanted so badly to “ace” this assignment every remaining day of my life. I’ve wanted to continue with my happy marriage and be able to give our other two girls as much fulfillment as possible, especially during their childhood. I wasn’t sure how or when it would happen, but I’d make it happen. I had to make it happen.
As of late, I began realizing that my prayers were being answered, even when things seemed dark. Yes, I still cry every single day, multiple times a day, and sometimes for hours at a time, but my days are still filled with joy. A lot of joy. I’m noticing that good days are finally becoming greater, in both quantity and duration.
This past Labor Day weekend I was able to intensely push through some deep darkness, and even destroyed some of the demons that have haunted my mind. Through my tears and heartache, I smiled. I even laughed! I found it ironic that this holiday weekend is specifically set aside to honor hard workers and offer a day of rest. Here I am doing the hardest work of my life, and was able to find some peace, some “rest.”
Then, on Monday, something even more amazing happened, as the four of us sat outside at our campsite during breakfast. As we ate and talked, a beautiful monarch butterfly joined us. “She” kept taking flight through our favorite place and was circling around all of us. At that moment, I was reminded that while Norah is physically missing, she’s still with us and we’ll always be a family of five.
A little while later, the butterfly followed us down the hill, around the bend, and down the camp road to the pool. Hank and the girls went directly into the pool area, but I stuck around and watched her, as she put on a beautiful show for me. She got close and circled my head, as if to clear my mind and send me a message of love and hope. She even let me get close enough to her to speak out loud and say hi, as I took a few photos.
I know for sure that Norah was right there with us this past weekend, providing us with joy and allowing me to see all that’s beautiful again.
According to James Van Praagh, author of Growing Up In Heaven, there are two types of grieving parents: “those who use their child’s death as an opportunity for growth, and those who remain completely and utterly destroyed.”
I’ve made the choice to use Norah’s life as an opportunity for my own personal growth, instead of allowing her death to destroy me. I’ll continue to give love and light to those around me, in honor of our amazing girl, because my love for her will always remain bigger than anything in its way.
I wake with a jolt. Startled by the beginning of yet another day. The reality hits me hard and causes me to lose my breath each morning, the second I open my eyes. Seventy-six times so far, I’ve woken up like this, with the knowledge that it will never end. Forcing myself into life because I have to get through another day with such pain and sorrow, which is sadly experienced even along side the joys of my amazing girls here on Earth.
It’s still dark outside but I can’t sleep anymore. I raise myself out of my bed in one quick movement, almost ghost-like. I run directly to Norah’s room. I sit in her rocking chair and stare at her empty crib. I rock. I feel. I hurt. I cry out. My body begins to burn once again, with the continued yearning to feed her.
I feel nauseous.
I cry harder.
I embrace the pink kitty sleeper she wore, before her bath, just hours before her death. I smell her sweet scent through her spit up stains. This smell is the only physical sign of her life that I have left. I’ll never, ever wash this piece of clothing.
I weep. Loudly.
My chest burns harder. My stomach aches more. My eyes pour out tears, faster than ever.
The ache in my heart has returned. I’m thankful for the 18 days that I didn’t feel it, but it’s back. And it worries me. I wonder what type of physical changes are occurring in my heart. How has the blood flow changed? How have my vessels been affected? Why do I have to worry about these things now? Why do I have to know the number of days that I didn’t feel like I was going to have a heart attack? Why do I have to feel it again?
The good news, I still no longer feel the guilt, because love is all I’m capable of.
I’m having a really hard time hearing that I’m strong. That I’m brave. That time will heal. That my marriage can survive this. That my other kids need me. That I’m a warrior. My previous thoughts of “one day at a time,” one moment at a time,” “sixty more seconds,” are now just another trigger for my anger and my fears.
My mind can’t comprehend how people can wonder why I’m not “better” from all of the therapy I’m seeking. I’m saddened for those who are looking through the fence, asking how I am, and waiting for me to tell them that I’m all better. I feel so bad that I can’t give them that relief, but only those who have experienced this know that this trauma does not get better. This is not a virus or a wound, or even the type of loss that can heal over time. It’s the loss of my child. My baby. My healthy girl. My best surprise, who was ripped from my arms for no reason at all.
I keep reliving the day of Norah’s birth. I have vivid images of walking into the hospital before the sun was up, with our suitcases and her diaper bag; smiles on our faces, our hearts beating a little faster than usual. I have visions of me rolling on a birthing ball, experiencing each contraction fully and ferociously, and anxiously awaiting each exam to hear how things were progressing. Enduring each push, and soaking in each cheer of encouragement that my amazing husband gave to me, as he held my hand and gazed into my eyes while I pushed our baby into the world. I have visions of holding her and feeding her and learning all about every inch of her, as I cried tears of joy and tears of fear, from my hospital bed in the quietness of the night. I have visions of my girls meeting their baby sister for the first time – their faces, their eyes, their full hearts showing on the outside. I have visions of being pushed in the wheelchair to the lobby, as my husband went to get the car, and having countless people (even new parents) stopping to tell me how beautiful she was. I found it almost odd, yet so heartwarming. I was so proud and so thankful. We were like celebrities. Now I know why. I know that their eyes were drawn to her, to experience seeing a living angel. I just had no idea that an angel is what I was holding in my lap, and embracing in my heart.
I also have nightmarish, dark, haunting visions: of walking in to see my sweet baby dead in her crib; not being able to save her; being led to the trauma room where her tiny 12 1/2 pound body laid on a gigantic, cold, white bed, with tubes and IV lines, discolored from death, bruised from probable broken ribs, because so many amazing people were trying their hardest to bring her back; the ride home, with Hank and me in the backseat – staring out the window in complete shock; coming home with empty arms and having to tell her sisters that they will never see their baby sister again here on this Earth while telling them she was not sick, but her body had just stopped working; knowing that our tiny love’s skull and chest had to be cut open in order to have her precious organs removed to find out what happened, only to have no answers yet, except that she was “perfect and healthy”; looking at her lying in a box not much bigger than a dresser drawer, lifeless and cold, without blood or breath; smelling the decay of her flesh from within that coffin when I should be smelling the sweet scent of my baby in my arms, finding out that there are other medical tests which should be done on our other children to ensure that they won’t also experience a sudden death; feeling thankful for the doctor who went out of his way to find out these things, and give us the wonderful news that their results were normal; having your eight year old ask if the people at the funeral home threw her baby sister’s body in the garbage can after we left; having your five year old worry about who is changing her diaper in heaven; watching your husband withdraw and weep and express how lonely he is, and not have a clue on how to help him.
You see, I’m not strong or brave, I simply have no other choice. Taking one day at a time means I have to wake up like this approximately 17,000 more times, eventually with my other kids out of the house and me living as an elderly grieving mother, alone, after my husband is gone too.
We now have to fight so hard every single day for each other, for us, even when we’re out of energy, because we don’t want to be part of the 90% of couples who divorce after the death of their child.
I have to give my all to the girls when I’m out of all of my energy to give. Not being able to answer their questions, because I don’t even have answers for myself. Some days it takes everything in me to simply brush their hair or unpack their backpacks. I drive them around to therapy sessions, saddened that this is their life; that this is part of what is scheduled into their after school activities.
I’m frustrated with myself and my lack of ability to function normally. I had to return to the store nine times because I couldn’t follow a simple list of the school supplies they needed this year. Nine times.
I’m exhausted from grieving. I’m angry that this is the cross we have to bear. I’m in pain, physical and mental pain. I’m unable to give others any type of support.
I’m unable to care about other things in life, like the flow of school traffic or the planning of some future holiday event. I don’t care about those things because you know why? Because my child is gone. She is dead. So all I have the ability to do is just go with the flow and adjust to trivial shifts in life, and participate when I can, and stay home when I can’t, and just continue to feel thankful for another beat of our hearts and another breath from our lungs.
I need my Norah. I need my old life back. I need me. However, I keep reminding myself that those things are impossible and I’ll never fully heal. But I will continue to rely on God and faith, as I dig deeper within my soul to get through yet another day.
(I dedicate this to all grieving mothers AND fathers. This was shared with me today by a friend, a former NICU co-worker, a mother of four beautiful girls, a very important member of my “village.”
The words are the most accurate I’ve read thus far and they’ve touched me deeply. They made me feel less alone on this battleground. My hope is that within these words you’ll feel a little less alone, too. ~Adrienne)
~ I am a mother. I am a bereaved mother. My child died, and this is my reluctant path. It is not a path of my choice, but it is a path I must walk mindfully and with intention. It is a journey through the darkest night of my soul and it will take time to wind through the places that scare me.
Every cell in my body aches and longs to be with my beloved child. On days when grief is loud, I may be impatient, distracted, frustrated, and unfocused. I may get angry more easily, or I may seem hopeless. I will shed many, many, many tears. I won’t smile as often as my old self. Smiling hurts now. Most everything hurts some days, even breathing.
But please, just sit beside me.
Do not offer a cure.
Or a pill, or a word, or a potion.
Witness my suffering and don’t turn away from me.
Please be gentle with me.
And I will try to be gentle with me too.
I will not ever “get over” my child’s death so please don’t urge me down that path.
Even on days when grief is quiescent, when it isn’t standing loudly in the foreground, even on days when I am even able to smile again, the pain is just beneath the surface.
There are days when I still feel paralyzed. My chest feels the sinking weight of my child’s absence and, sometimes, I feel as if I will explode from the grief.
Losing my child affects me in so many ways: as a woman, a mother, a human being. It affects every aspect of me: spiritually, physically, mentally, and emotionally. There are days when I barely recognize myself in the mirror anymore.
Grief is as personal to me as my fingerprint. Don’t tell me how I should or shouldn’t be grieving or that I should or shouldn’t “feel better by now.” Don’t tell me what’s right or wrong. I’m doing it my way, in my time. If I am to survive this, I must do what is best for me.
My understanding of life will change and a different meaning of life will slowly evolve. What I knew to be true or absolute or real or fair about the world has been challenged so I’m finding my way, moment-to-moment in this new place. Things that once seemed important to me are barely thoughts any longer. I notice life’s suffering more- hungry children, the homeless and the destitute, a mother’s harsh voice toward her young child- or an elderly person struggling with the door. There are so many things about the world which I now struggle to understand: Why do children die? There are some questions, I’ve learned, which are simply unanswerable.
So please don’t tell me that “God has a plan” for me. This, my friend, is between me and my God. Those platitudes slip far too easily from the mouths of those who tuck their own child into a safe, warm bed at night: Can you begin to imagine your own child, flesh of your flesh, lying lifeless in a casket, when “goodbye” means you’ll never see them on this Earth again? Grieving mothers- and fathers- and grandparents- and siblings won’t wake up one day with everything ’okay’ and life back to normal. I have a new normal now.
As time passes, I may gain gifts, and treasures, and insights but anything gained was too high a cost when compared to what was lost. Perhaps, one day, when I am very, very old, I will say that time has truly helped to heal my broken heart. But always remember that not a second of any minute of any hour of any day passes when I am not aware of the presence of my child’s absence, no matter how many years lurk over my shoulder.
So this year, on Mother’s Day, don’t forget that I have another one, another child, whose absence, like the sky, is spread over everything as C.S. Lewis said.
Don’t forget to say, “How are you really feeling this Mother’s Day?” Don’t forget that even if I have living children, my heart still aches for the one who is not here —for I am never quite complete without my child.
My child may have died; but my love – and my motherhood – never will. ~
~Today is the 15th. The past two months have been filled with crushing chest pain, random and violent, exorcist-like vomiting that can wake me from sleep, screaming, sobbing, days spent in bed, very dark thoughts due to the guilt and the tragedy of losing Norah. Disgusting things that I can’t believe I’ve had to experience. Things that robbed me of the joy that was all around me and the memory of her amazing little life, that has proven to be bigger than anyone could have imagined.~
Last week, while trying to work through these thoughts and experiences, my therapist told me that I was in no way to blame (many others, including police, a detective, several doctors, a distinguished Medical Examiner, a priest, a nun, my husband, my mother, my friends, my family, have told me this countless times. But a Mother’s mind and soul will do some powerful and irrational things when mourning for a child, especially when there is no cause).
She told me that I’m a wonderful mother whose baby died, and the two can go hand in hand.
This concept resonated with me.
I’d be the first to express those thoughts to other grieving moms, but I couldn’t do that for myself.
However, at that moment, I was finally able to speak the truth and know wholeheartedly that I did everything in my power to nurture, nourish, advocate for, comfort, and love my sweet girl, every second of the 111 days we had together. I grew this baby inside of my body. I fed her from my body. I sacrificed everything for her. We gave each other a lifetime of love in a very short amount of time. That’s pretty remarkable.
By the end of my session, my therapist had given me an assignment to discover a mantra; one that I could use when I’m beginning to spiral. I was on a mission.
That day, I broke down and shared my deep, dark pain and guilty feelings with a friend. She replied so kindly, and reaffirmed all she knew about me, and my love and care for my children. She then, unknowingly, presented me with my mantra, as she said to me, “Love is all you’re capable of.”
Love is all I’m capable of.
Love is all I’m capable of.
Love is all I’m capable of.
Love is all I’m capable of.
So simple. So powerful. So true.
That day continued to unfold with blessings right before my eyes. I was invited to attend a Healing Mass with someone who I believe was put into my life for a very specific reason. (She shares the joy of children who are the same ages as mine. She and I met last year and were pregnant again, at the same time. She reached out to me after Norah died, and shared words, some of which were God’s words, that I’ll never forget. She paused her very busy life to help me plan Norah’s funeral mass and directly contacted our Priest to ensure that everything went just as we had requested. Both of our youngest were baby girls. Both of their names begin with an N. Both of them are now living together, as soul sisters, in Heaven.)
I knew this mass was exactly what I needed. I couldn’t believe I hadn’t thought of it before! But I was barely able to form a sentence sometimes, let alone a thought. My friend, and God, did that for me.
She and her Mom picked me up the very next evening. This was the first time I had met her mother but I felt an instant bond, a comfort, in her presence. I was with the people whom I needed to be with.
We walked in to St. Paul’s Cathedral. The magnificence of that church hit me. We sat in the middle of the church, row 130. I was exactly where I needed to be.
During the homily, one of the fifty-some priests from around the world spoke about forgiveness and healing from his own personal experiences. I learned that healing can not begin until you have achieved forgiveness. I began racking my brain, trying to figure out who I needed to forgive. It is extremely rare that I have run-ins with others. I don’t hold grudges. I move on, even it means removing myself from a bad situation. But I forgive. Long ago, I even forgave for others, those who had wronged some of my friends and family. There was no one out there whom I needed to forgive. Why was I being blocked from beginning this journey into grief and healing?
I yearned to grieve for Norah in the most normal way possible. I yearned to not be overtaken by the demons that were flooding my brain and gripping my heart. The demons that were blocking me from so much joy that was still surrounding me. I was more confused than ever. I continued to pray.
At the end of the mass, the priests positioned themselves in areas around the church for people to talk to, confess to, cry to, pray with, receive a blessing from, whatever was needed. I told my friend and her mom that I’d meet them by the door later on.
I walked around, looking for the priest who had spoken about forgiveness. I needed more info. I needed his prayers. But I could not find him. I walked aimlessly for a few more minutes, staring at each man and deciding which would be the right line for me to stand in. Suddenly, I caught sight of someone in the back corner. He was a very tall, very strong-looking older priest. I stood and watched for a few minutes as he was leaning over a couple, praying and blessing them. They appeared to have a deep need, and he was helping them. Something about him reminded me of my late Grandfather. This was the line I needed to stand in.
As I stood in line, I began to feel a deeper, overwhelming pressure in my chest. I wasn’t sure if it was grief or anxiety or God beginning to work on my heart. Whatever it was made me weep, out loud, without any control. My tears were literally forming a small puddle on the floor in front of my feet. I kept looking down as they fell. I kept trying to catch my breath. From behind me, a very kind lady, a stranger, placed her hand lightly on my back and said, “It’s going to be OK. You’re going to be OK.” (I’ve found that “OK” has so many meanings now. But I’ve yearned to be as OK as a grieving mother can be. I want to be OK for my other two girls and for my husband. I want to be OK for my friends and my family. I want to be OK… for me.) I needed to hear those words for the umpteenth time. I couldn’t even reply to her. I just looked deeply into her eyes and hope she sensed my gratitude. I wish I knew who that lady was.
It was my turn. The priest asked for my intentions and how he could pray for me. My voice cracked. I trembled and sobbed, as I handed him Norah’s prayer card and told him our story. He placed his hand on the side of my face – it covered me from my hair to my jaw line – and he let out a huge, empathetic sigh and “awww” – to me showing the greatest empathy as he acknowledged the greatest loss. He then looked me directly in the eyes and said, “You’ve done nothing wrong. You’ve given love. You must forgive YOURSELF.”
If it was appropriate to say “Ohhemmgee” in church and right there in front of a priest, I would have. A light bulb came on. It was ME I needed to forgive in order to heal!
He prayed over me for several minutes, he blessed me with oils, he held Norah’s prayer card to his heart. I kept saying my mantra. I felt my knees tremble and I felt air rush into my lungs for the first time in weeks. I could breath. He told me the Holy Spirit was working now.
He asked if he could keep Norah’s prayer card. I exhaled a huge breath and said, “Yes.”
A little while later, I saw him talking to another priest, and holding Norah’s prayer card for both of them to see. It appeared that he was telling him about her, about me. They were praying for us, and I believe they’ve continued to pray.
Since that evening, I’ve felt an ongoing sense of peace. Five, almost six, whole days have passed and I’ve continued to feel different. Of course, I still experience unfathomable pain and tears from missing my sweet, perfect angel (I know that will last forever) but I no longer feel guilt or self-blame or self-hatred.
I’ve forgiven myself because I know that love is all I’m capable of.
I hope these experiences can help someone else get through the darkest of times. Bereaved parents are the only ones who can truly understand the magnitude of this loss. Burying your child is unnatural. It’s not on the “timeline” of life. It’s not a normal process that occurs with aging. It’s your greatest love, taken away from you. It’s learning to live with empty arms and a piece of your heart gone forever.
But I’m holding on to hope, now, that what I’ve experienced will be lasting. I’m ready to continue with the difficult work that I’m faced with on this journey of grief, in faith and in therapy, as I remember and honor our Norah.
I’d like to invite you to attend a healing mass. It’s OK to go in lost, skeptical, scared. God accepts all. You just need an open heart.
If you’ve contemplated the need for therapy, please reconsider and seek the help that you need. Our brains are not equipped to independently handle the toughest of tough situations we’re sometimes faced with. There is no shame in seeking what is needed to open up your life to something greater; to have an awareness of your needs and the needs of others; to focus on rebuilding your strength and becoming a warrior. If you needed open heart surgery, would you consult a cardiac surgeon? If you had cancer, would you be willing to undergo chemotherapy or radiation treatment? Why not accept the gift of mental healthcare, when faced with life’s most difficult paths?
My head is currently just a cluster of thoughts and visions. I’ve spent the last 24 hours in bed, nearly immobile, crying non-stop, and having the nightmarish visions (the ones I have feared since June 15th) hit me hard while I tried to sleep.
I’ve never felt more alone in my entire life, even with so many caring people surrounding me.
But I’ve continued, today, to write my thoughts… trying to get them out of my mind, so I can actually readmy own words; so I can remind myself and share the magnitude of the love I feel for my children, even if it means being submerged in the pain of losing one.
Throughout this dark journey, I’ve had unrealistic thoughts like, “I’d give up years of my own life to get Norah back” or “I wish there was a way to buy Norah back.”
I yearn to watch her grow and smile. I yearn to feel happiness again within my soul, as I watch all three of our girls thrive in their individual stages.
I want to be able to hold and hug and hear ALL of my kids, not just 2/3 of them!
I see babies who were born after Norah, who are beginning to surpass her eternal age of 3 months and 22 days. I see them reaching milestones that we don’t get to experience with her. That concept continues to confuse me.
I hate that I couldn’t protect her from this monster who shows no signs, gives no warning, and leaves no answers.
I couldn’t help her.
I couldn’t save her.
“Mom guilt” has an entirely new meaning for me now. It’s crushing. Paralyzing. And no one can help me or make it better.
I wish I could undo this nightmare. I wish my family could go back to being untouched by this type of horrific death and never ending grief. I wish I could have my family of five piled under one roof again… happy and crazy, rolling through life.
I miss that life.
I’d give anything just to have those simple times again.
There is a woman who sits in her dead baby’s bedroom, rocking in her baby’s rocking chair, smelling her baby’s sweet “dirty” clothes, and crying out to God, “help me!”
She is the one who has to force a fake smile through her constant tears, to give her other children some sense of comfort and hope, even though they see the horror that’s in her eyes. She is the one who has to force her arms around her husband, while she’s weeping uncontrollably and needs held up, but still needs to help hold him up.
She is a previously independent, organized, “roll with the punches,” laid back, but feisty person, who loved a good party and a good laugh, and a good glass of red wine. She was good at planning and juggling, and keeping many plates spinning, while maintaining a good marriage, a full time job, and having three kids in tow.
She went missing the same day her baby died – the baby that gave her the greatest surprise of her life and filled the yearning she had deep inside; the baby that sealed her heart and made her feel like life was exactly where it needed to be. She truly loved that life.
She has been cheated, stolen from. She had the most precious gift ripped right out from under her. She is now lost. She hurts like hell. She feels like this is all such a waste. And, she is sorry.
Unfortunately for me, and for all of you, I am “she.”
I bet you’re so glad you aren’t me.
You should be.
I would be.
I can remember thinking that to myself when I would hear of terrible tragedies that struck other families. I wasn’t being cold or heartless, I was simply feeling thankful that I wasn’t suffering that pain that many others had to endure. I didn’t want to imagine it. Just like you, and like so many have accurately said to us, I couldn’t imagine. Now I know how unimaginable that pain truly is. Be grateful that you can’t feel it.
Because of the pain and the ongoing fog of grief I’m now living in, I realize that I’m not the most supportive person to have around anymore. Suddenly, as of 2:39pm on June 15, 2018, everything was ripped away from me. I was no longer that friend who remembered birthdays, or life events, or the one who offered advice, or an ear, or a shoulder, or sent a message saying that I’m praying for you, or sent positive vibes about your sister’s mother-in-law’s doctor appointment.
You see, I used to do all of that.
I used to remember the things that were important to all of you, and I took them on as my own to help bring joy and ease pain. It was natural for me; besides motherhood, it was part of what defined me.
So, my family and friends, I’m sorry. I’m sorry if I don’t answer calls or texts or messages for hours or days or ever. I’m sorry if I don’t want to get together in a public place or at your home, it’s truly because I can’t. I’m sorry if I forget your birthday or your important day, it doesn’t mean I don’t care. I’m sorry if I seem short or if I snap at you about something seemingly simple. I’m sorry if I can’t answer your questions about how I am, or if I give an answer that you weren’t prepared to hear. I’m sorry if I’m unable to make decisions. I’m sorry if I am completely incapable of making plans unless something is put right in front of me, and I’m sorry if sometimes I can’t keep the plans that I made.
Not only am I mourning and grieving for my daughter, but I’m now doing the same for my “self”; not for myself, but for my self.
The closest thing I imagine relating this to (and to those who have experienced this, please forgive me if this isn’t at all accurate) is someone living with amnesia… not remembering the life they had before, but having the same people and the same scenarios still surrounding them. The difference here is that I doremember the life I had before, and there’s not a damn thing I can do to get that old life back. It’s actual torture.
I’m living in catastrophic, unimaginable pain, plus I’m in a dark fog, and stuck inside of a funnel cloud that I can’t escape from.
I’m working hard on a journey to form the scars that will allow me to continue on with life. I’m also trying to be there for my husband, and for our daughters, as they do the same.
Our happy little home has a lot of cracks and tears and emptiness within it now. But it still holds a lot of love, so just please “keep showing up.”
(Many have asked what they can do for us…. If you have just a few more minutes, check out the article from the link posted below. It describes exactly what we need from the village that surrounds us.)
Hank and I returned to camp for the first time in 2 months. The last time we were here was Memorial Day weekend, the weekend that we celebrated Sydney’s birthday and (ironically) comforted her and reassured her when she came into our room sobbing because of a nightmare she had. A nightmare that Norah died…
I was terrified to come here, for fear of unsettled feelings within my place of peace. But I knew I had to face it, and I prayed for God to give me what I needed.
When we walked in, the familiar place had a calming sadness hovering within. Silence, emptiness; so different than any other time we’ve walked in. There sat her bouncy chair, her diapers, her empty bassinet. We sobbed. We hugged. We held each other as we faced another first, and remembered another last.
After getting things up and running again we sat in our favorite rocking chairs on the deck, in silence. Suddenly, something hit me. For the first time in 42 days, I was experiencing life without crushing chest pain. I was able to breath deeply again. For 24 hours, I was able to really see the moon, and feel the fire, and bask in the sun, and smile. Thank you, God!
Unfortunately, that temporary peace was just that, temporary. I thought I was prepared for that. I wasn’t. Sometime in the middle of the night, after about 24 hours of God and Mother Nature providing me with peace, my excruciating pain, heavy guilt, weeping, and vomiting returned.
But for 24 glorious hours, I was able to smile and feel something other than soul crushing heartache. For this I’m thankful.
Six weeks have passed since Norah was on this Earth, and in our arms. Of course we know she’s in Heaven, but she’s supposed to be here with us. This is wrong. Everything has gone wrong. I’m stuck in a tornado of catastrophic sadness and fear.
This morning as I drove to an appointment, alone and in silence, with only the noise of the radio that I couldn’t even hear, I felt my (now baseline) chest pain beginning to increase. I knew what was coming… crushing anxiety, blinding tears, horrific sorrow, overwhelming grief. I looked at the clock… it was 9:11, a trigger time for me because I had to dial 911 the day my sweet girl died. I began to cry out. Uncontrollable tears streamed down my face. I wept.
Suddenly, I could feel Norah’s strong presence and my emptiness rushing in all at the same time. I kept thinking the continuous, helpless thought of how badly I want her back. I looked into my rearview mirror at her empty car seat.
“Why did this happen to us?! Why is this our life?!”
All of this happened within 30 seconds, when suddenly, Train’s “Calling All Angels” began playing on the radio. The song I’ve loved since the passing of my grandmother. The song we heard live, just 6 days before Norah died. The song that was so beautifully sung with acoustic guitar, by our dear friend at Norah’s funeral.
She was there… in my heart and in my soul, as my body cried out… calling all angels.
I’ve hit rock bottom. My brain is like a cobweb. I’m dizzy. I see floaters. I catch myself staring at nothing for uncertain amounts of time. I can’t watch TV. Sometimes I can’t even form a sentence or comprehend the inherent thought that goes behind a simple task, like packing a bag or paying a bill. It’s like I’m in a catatonic state at times. I feel stuck in quicksand, with no energy or will to escape.
I’m physically, mentally, and emotionally drained.
I’ve learned that studies show brain changes during this type of grief, after losing a child. If a CT scan of my brain were done, it would appear that I’ve had a concussion. This explains many of my symptoms, all due to what’s described as traumatic grief.
I was also recently diagnosed with PTSD and I experienced my first panic attack. I’m triggered by sights and sounds and occurrences that send my mind racing, until it comes to a jolting stop, then I weep uncontrollably until nothing is left.
I’m unable to work.
I’ll soon be beginning intensive therapy most days of the week for multiple hours each day.
I’ve lost myself. The strong, independent, (mostly) confident self that took years to become.
My amazing doula told me that THIS is known as “The Grit” and I’m now deep inside of it. But it’s necessary for my future. It’s “normal” for this terribly abnormal thing I’m experiencing. And I’ll get through it. I have to get through it. My future self, my future as a wife, my future as a Mom… Addy, Sydney, and Norah’s Mom, requires me to get through it.
A very close and dear friend, Norah’s Godmother, put my current suffering into perfect words. She said, “The pain is so thick you can’t even move it to one side or the other to see an opening. I only have my faith to lean on and God has never failed me.”
God has never failed me, either. Because of my faith, I know that out of this grit will come light. It may take many years to get there, but I’ll get there. I have to. I have no other choice.
To those around me who are watching this happen, please continue to be patient with me, as you have. I’m a different person now…. a devastated Mom, with a form of brain damage, along with a broken heart and a shattered soul.
We see you, all of you, on the other side of the fence. We know you can see us, too. Thank you for looking. Thank you for stopping by. Thank you for holding our hands through the tight, painful openings. Thank you for taking the time to feel saddened by the pain that we experience.
We’re sorry for your pain, too. We know it’s impossible for you to feel what we’re feeling, and we’re so very thankful for that. Your support is amazing. Your words are so kind, and even when they unexpectedly sting, we know they are well-meaning. We love you all.
None of us on this side of the fence want to be here. We’re trapped in the grips of a nightmare that we can’t wake up from. We feel like we’re being suffocated 24 hours a day, 7 days a week. We are literally unable to catch our breath at times, as our chests ache with a physical, deep, substernal pain. A different kind of pain than we’ve ever experienced. We’ve learned that these symptoms are due to a condition called “Broken Heart Syndrome,” which has literally killed people, due to stress-induced cardiomyopathy that sometimes occurs. So, when we say our hearts hurt, that we have physical chest pain, and that we can’t breathe, we mean it.
We are haunted. Haunted with the whys, and the what ifs, and the (irrational?) blame. We constantly wonder “were we good enough” people and parents and humans. We search for answers as to why this happened. Emotional answers and, in our case, scientific answers. Answers that no one can give us, not even the best and brightest scientists and medical professionals. We now live with demons, haunting demons that try to take over our minds, when we are too weak to forsake them. Some of us are also haunted by the physical images we faced when we were thrown to the other side of this disgusting fence.
We wonder if we are the ones who have died and are now living in Hell, because this life and these feelings are consistent with an unbearable pain and torture that lasts for eternity.
We know that nothing that occurs in our lives from now on will ever be as painful as what we have experienced. We know that no words will fix this because we have not only lost a child, we have lost a part of our selves.
Yet on top of all of this, we still ache for all of you, on the other side of the fence, because we know your hearts hurt too; for us and for our losses. We know you feel like there’s nothing you can do for us to make us feel better. There isn’t. But that’s ok. You just being there, saying nothing, looking over, reaching out, reminding us that we’re not alone, even though we’re permanently on the other side of the fence, is enough. For you, those on the other side of the fence, are the ones who are able to give us a brief moment of peace or laughter or a simple distraction. We are so thankful for those moments. We never want them to end.
We run towards the sunshine that sometimes peeks through the darkness. We all pile in and relish in that moment because we never know when it’ll be taken away. We live in constant fear of what the next emotion will be or how we’ll handle the next requirement of life. We walk around aimlessly with blank eyes and a fake smile, just to try to maintain some normalcy for our loved ones, mostly the children who are on this side of the fence with us.
But please know that we are so happy for you, there on the other side of the fence, and we pray that you’ll always stay there. We see you running and laughing and playing and working and sincerely smiling and enjoying life. We see you functioning. We remember what that was like. We yearn for that time.
We hope those things will return for us too. We know, however, they’ll never feel the same, because someone will always be missing.
Just like you, we had a different perspective of all of this when we were on the other side of the fence. But take our word that life will never be the same. There will be no “new normal” because what we are experiencing is far from normal. Time will not heal us, because there is no healing in this loss. We’re living a trauma that never goes away. We will have wounds until the day we, too, die. We will just eventually learn to live with scars. Very abnormal scars.
We know this process is on our own time. And honestly, we’re too weak and exhausted to try to control it. So when you remind us that we can mourn or grieve for as long as we need, believe me, we will. We have no control over any of this. We’re scared. On the other side of the fence.
(Losing a child makes you anticipate things you never knew could totally bring you to your knees and plan for situations you had never thought about before. Things like: driving down a road for the first time since she died, seeing emails with the date of June 15th, running out of the bottle of shampoo that was used before she died, filling up the gas tank for the first time since she died, anticipating walking through doors in places she had gone to with me, seeing someone for the first time, without her in my arms. The list could go on and on.)
But I didn’t truly anticipate exactly how I would experience the pain of today.
I work from home. My co-workers are amazing and beyond supportive, but they are all over the country, and across the world.
Norah had not yet started daycare, so SHE was my in-person work buddy. We had a routine. We listened to sounds and songs. We had conversations. We had each other.
But today, even with the tremendous amount of support from so many who knew it was my first day back, and those who were checking in on me in general, I was very much alone.
Upon returning from dropping off Addy and Sydney, I looked in my rear view mirror (as I did every morning when we’d pull back in to the driveway but never even realized I had done it) to see the nauseating vision of her empty car seat. I got out of the car with my coffee cup and keys in one hand, but no Norah in the other. I went into the house and closed the garage door without being able to worry about her being startled by the noise (she was never startled, but I was just always cautious and protective of her). I went upstairs and sat down at my computer… in silence.
No swing music.
No giggles as she looked up to see the momma and baby rhinoceros that hung from her swing.
No gummy smile or high pitched squeel or kicking legs when I asked what she was giggling at.
No baby on my lap during my morning meeting.
No bottle making.
No baby wrap wearing.
No diaper changing.
No 10:15 am nap.
I wept. And wept. And wept.
The sound of silence was deafening.
The weight in my empty arms was overwhelming.
The stinging in my eyes was painful.
…Then, I looked up and saw the most magnificent image – a bunch of small circles of light were surrounding me, shining from the ceiling and cascading down the walls. Almost like a reflection, but there was nothing to reflect from. I walked around moving things to try to figure it out. There was no solution. It didn’t make sense; yet it made all the sense in the world. In my world. My tears began to flow even harder.
At some point a while later, I suddenly realized that I was no longer crying, but actually focusing on sorting through some emails. Effortlessly. At that moment of realization I looked up… and the reflections were gone.
I did not shed another tear throughout the rest of my work day. I even had a few laughs with co-workers.
When our girls were babies, I let them “choose” their lullaby. I would play a variety of music until a song came on that seemed to relax them. It took several days to find the right song, but once discovered, that song became their lullaby.
Addy – Elton John’s “Tiny Dancer”
Sydney – John Lennon’s “Imagine”
Norah’s took a little longer than usual to figure out, as most things with her did. Although she was so laid back and happy, she always made me become a detective. She was deep.
She wasn’t soothed by my normal playlist that covered several decades and genres.
I kept trying.
Then one night I remembered a CD we had purchased 9 years ago, when I was pregnant with Addy. A lullaby CD by Jewel. I downloaded the entire playlist and played each song for her, sang to her, as we rocked through the night. She was unfazed, unsettled. Until we got to song #13. The song titled “Angel Standing By”…
I used sing this song to her day and night, but now I realize that it was actually her connecting me to this song, as she was singing it to me; especially on a day like today. We’ve somehow survived an entire month without Norah, but we know that our angel is standing by.
Early mornings are usually my time of clarity and awakening, so to speak. Today was different. Today I woke up feeling like I was stuck in a cobweb. Nothing to say (that’s rare, just ask my husband, or my boss haha!). Then I realized, today is Friday. Friday is usually everyone’s favorite day of the week; it used to be mine. But not anymore. It’s been four weeks, and at this exact moment four weeks ago (11:45am), I laid our sweet Norah down for her final nap here on Earth.
Everything is heavy. But we’ve also survived four whole weeks. It’s a day of pain and yet a milestone for us now. A new kind of milestone.
We miss you every moment of everyday, sweet baby girl. Sweet “Nor Nor” our little “Boo Boo.”
We’ve all heard stories about people having experiences with angels on Earth. I’m a believer, but had never truly had the experience.
On June 16, 2018, we met someone who I am certain was put in place as our angel on Earth.
Her name is Emily.
As we sat in the trauma room, on June 15th, in shock, weeping over our precious, lifeless girl, a kind social worker, who had been with us earlier, entered our room again with tears streaming down her face. She apologized for what she was about to ask us, but began explaining that she needed a few pieces of information, one being our choice of a funeral home.
My God, here we are giving information on a location for our baby girl’s dead body to be cared for and prepared for the next phase of this nightmare. What the hell is happening here?!
My initial thought was “close to home” – so I blurted out the name of a funeral home that is right down the street from our house. I wanted minimal time in the car and minimal effort in doing anything – somehow in that moment, I thought geography would alleviate a burden. Hank nodded in agreement. (At this point, I’m not sure he was even able to speak, nor did he care where we would endure what was to come in the following days. I totally understood.)
A short time later, after answering a few more grueling but necessary questions, I had a vision of me driving Addy and Sydney to school each day, knowing I’d be passing that funeral home. “Wait, I need to change the funeral home!” I explained the reason to Hank and he wholeheartedly shared in my concern. We chose a different location, one that I could always avoid, if necessary.
Later that afternoon, I received a call from the newly chosen funeral home. On the other end of the phone was a kind, gentle voice, offering her condolences and asking to schedule a time to meet the very next day. I remember hearing her but not connecting what was really happening. I was so confused on what we were experiencing that her voice almost sounded far away, echoing, like we were talking through a cave. I focused on the logistics, answered her questions, chose a time, and we hung up.
The hours leading up to our 1:00pm meeting the next day, were brutal. I felt anxiety like I had never felt before.
Hank and I drove to the funeral home in silence, holding hands tightly, with tears streaming down our faces. We stumbled out of his truck, confused and nauseous, and walked through the heavy double doors towards a person, a stranger, entrusted to care for the body of our sweet Norah.
At that very moment, I looked into the tearful eyes of an angel.
She introduced herself as Emily. She embraced us, as if she was Norah’s caregiver, or teacher, or friend. (I believe she was all of those.) As she hugged me, I instantly felt my body melt into hers and some unexpected sense of relief took over.
Norah’s Godparents, “Uncle Dave and Aunt Victoria” joined us for this “event” to help support us and hold us up, as we answered the hardest questions of our lives. Emily embraced them, as well, and offered her heartfelt condolences.
The five of us sat in a quiet office for almost three hours, talking, planning, crying, breathing, and even laughing at one point. Emily was meticulous in fulfilling each and every one of our wishes, wishes we didn’t even know we had.
When it was time for us to leave, I remember asking Emily if she was scheduled to work on the dates/times we had chosen for Norah’s viewing and funeral. Her reply was, “it doesn’t matter, I will be here.”
A few days later, when it was time to begin the funeral viewings, Emily was at the door, again with arms wide open, to lead Hank and me into the room in which our precious Norah lay. As we walked in, I could not believe my eyes. She had set this place up in a way that felt as close to “home” as I could have imagined. Everything in that room had Norah’s life “written” all over it.
She gently placed each of the items we gave to her. She had Norah’s nightlight/sound machine playing the lullaby that put her to sleep each night. Her husband took two videos I had sent to her, and streamed them to play continuously, on a large screen for all to see. Emily did everything and more to honor Norah’s life, and to make our family as comfortable as possible.
As our girls entered the funeral home, she instantly connected with them, gave them a special message from God (with our permission), and shared a bond that I have no explanation for.
She checked on us multiple times a day, to ensure us that she was caring for our baby and leaving her nightlight/music on for her at night, after we all left the funeral home. She transformed prayer cards into something perfect to remember Norah by, quotes from one of our favorite books, “On the Night You Were Born”.
She refused to let Norah’s casket be carried by a hearse, but instead sat in the back seat of a car and held our baby, and her casket, on her lap.
She blew kisses to us as that car pulled away from the church, after the funeral, as our sweet girl laid on her lap.
She gifted us with Norah’s favorite angel bear (given to her exactly 2 months before her death, on her Baptism day), transformed into something that could hold her remains, so we could keep her close forever.
I told Emily’s boss that Norah will never experience Christmas morning, or a birthday, or the first day of school, or a prom, or graduation, or her wedding day. But Emily made it so that Norah’s funeral was big enough and personal enough to fulfill those many missed events in one “celebration” of her life.
Emily is truly our angel on Earth.
(I no longer feel the need to avoid the funeral home. Afterall, it is where we released one angel to Heaven and gained another here on Earth.)
At some point during the days leading up to Norah’s funeral, I spoke these words to Uncle Jack. I didn’t realize it until he mentioned them during Norah’s eulogy. He then led the entire church in singing “This Little Light of Mine” which is what inspired the title of this blog.
I knew her name meant light because of a “name meaning” print in her room. But I didn’t really know.
We are seeing her light in so many incredible ways. She’s shining, just as she did during her short time here on Earth. I believe this is her way of saying “I’m gonna let it shine.”
Officer “L” was first on the scene. I remember seeing him running up our stairs and I instantly knew we were in the presence of a hero. Not only did he do everything in his power to attempt to resuscitate Norah, but he comforted me, literally held me, as I broke down knowing that our baby girl was no longer with us. After Hank and I left in the second ambulance, while my mom was left at our house with Addy and Sydney, Officer “L” sat and held them, when their Daddy couldn’t be there to offer comfort. This man is a true hero, not only for putting his life on the line everyday for our community, but because he has compassion and a heart that truly cares about others.
Detective “S” was on the scene before we left for the hospital. He was so professional and yet so kind. It was obvious that, while needing to do a difficult job, he had empathy for what we were experiencing. We met up with him again for interviewing, in the hospital room where our sweet girl was pronounced dead. He did his job meticulously but also showed his “human” side and offered his condolences as we sat there weeping over Norah’s lifeless body.
Penn Hills Police Department is so lucky to have these men on their force. Our community is so lucky to have them fighting for our safety. Our family is so lucky to have had these guys on scene for the absolute worst day of our lives. We’re grateful for all police officers, but right now we’re extra thankful for these two men.
For some reason, on Thursday night (June 14th) I decided to wake my littlest love and keep her up past her bedtime. I had been at a meeting at the school and I missed her a lot. I needed to see her.
She and I played in our bed, kissed, chewed on chubby cheeks, rubbed soft hands, tickled, cooed, giggled, loved on each other. Thank you God for that moment… our very last night together.
Note: I hadnt even realized this until so many people pointed it out to me, as this clip played at the funeral home: at 0:32 it seems as though Norah had something big to say to me; at 0:41 her eyes were pulled away towards something I couldn’t see. I even asked her what she was looking at, at which point she looks back and me and smiles. We will cherish this video for the rest of our lives.
The days after Norah’s death are a blur. There were so many people in and out of our house at all hours of the day and night. I hated the reason but I loved the company.
Everyone knows that I enjoy planning and hosting and cooking and comforting. It’s what I do. It’s what I’m good at. This time, everyone around us had to plan and host and cook and comfort us. We had to let them. Our house was raw and wide open, just like our hearts.
We were experiencing the deepest type of pain. Indescribable pain. And yet, we were numb. Is this shock? Is this denial? Yes. Yes.
Norah was dead. Norah is dead.
Over the next few days we shed more tears than we had in our entire life. Probably more than several people put together could shed in a lifetime.
We planned our daughter’s funeral. We looked at her dead body in a casket. We watched the casket close knowing we’d never see her again for as long as we were on this Earth. We sobbed. We mourned. We held each other.
TGIF! The day began with Hank leaving early in the morning for an appointment. Today was his vasectomy. We were content. Our three girls filled us, expanded us, and completed us. We knew that three kids was the perfect number and this was the best decision for our family.
While he was at his appointment, I got all three girls up and moving. After breakfast, Norah and I dropped Addy and Sydney off at their summer gymnastics camp and then returned home for me to begin my work day. I was anticipating my mom’s arrival in the early afternoon. She was coming to pick up all three girls for the weekend, as we had a wedding to attend.
Soon after we were home, I realized that Norah was extra clingy. Not fussy, just wanting held. I “wore” her while I worked during the morning hours. She had 2 more bottles than usual. She just wanted to eat and to be held. It made sense to me… she was about to enter a “leap” and was likely approaching her 4 month growth spurt. I knew all of my babies so well. But I knew this one differently. I could anticipate her needs and always solved the mysteries of the needs I had never experienced. I loved holding her. I loved how she would become so calm in my arms. I loved how she was still like a part of me. I loved when she was close to me. She was… different.
Hank arrived home from his appointment. I helped get him situated and comfortable and told him to relax for the next 24 hours.
I broke for an early “lunch break” to give Norah a quick bath and get her to sleep before I had to pick up Addy and Sydney from gymnastics camp. As I bathed Norah, I yelled out excitedly to Hank, “We’ve reached another milestone! She didn’t cry during her bath… she loved it!” Bath time for Norah was typically stressful, as she’d cry through the entire thing, until I wrapped her in a warm towel and picked her up. Today was different, though. She just relaxed and gazed into my eyes during the entire bath. It was so great!
After several attempts, I was finally able to lay Norah down in her crib for a nap. She hadn’t napped all morning because she was clinging to me. I told Hank she was fighting sleep a bit and may fuss for a minute or two, but she would be fine and she just needed to snuggle into her crib and sleep. I grabbed my keys, made sure he had the video monitor, and told him to stay put in his recliner. I had to pick up the girls from gymnastics camp but I’d be back in 30 minutes.
A few minutes after I left, I sent Hank a text to check on Norah. He said she fussed for a bit but was now sound asleep. Fantastic! She’ll get a quick nap in before my mom arrives.
The girls and I arrived home a short time later. Norah was asleep. Hank was resting. The girls ate lunch. I resumed working.
Around 1:35pm my mom arrived. She was helping the girls gather their bags while I finished a few work things and then made a bottle. “I’ll wake her and feed her so you don’t have to stop on the drive home.” My Mom and the girls went outside on the porch to play while I fed Norah.
I went upstairs to wake her at approximately 1:50pm.
The second I opened her bedroom door I knew something was bad. Really, really bad.
I could see her pale head. I took one step across the room to her crib and frantically picked her up. She was limp. Her lips were blue. My baby looked dead. My baby was dead.
I remember screaming for help (in a way that others said can’t even be described as a scream). My mom heard me from outside. Neighbors heard me from inside their homes. I did a few chest compressions and threw her at my mom, who was now upstairs with me, then called 911 (1:52pm) while she performed CPR. Hank and the girls cried out and held each other.
I could see the look of fear and helplessness on Hank’s face. For a split second, I remember us being frantic, yet frozen, with our eyes locked on each other’s. We shared a bond as grieving parents, before we even knew it. We were now connected in that moment, for life.
I continued to scream out to God and to Hank. I feared that Addy and Sydney would see the horror that was occurring in our upstairs hallway. My mom performed CPR as she prayed loudly to St. Jude, Worker of Miracles.
Somebody, anybody, just please help my baby!
I think I heard sirens. I hoped that I did. Thank God!
The first responder was a police officer who was right around the corner helping a dog off of the road. At some point he grabbed Norah and took over performing CPR. I was screaming and crouched in a corner. Still yelling out for God to save her. Somebody please save her. Multiple police officers began arriving, along with a detective, and several EMS personnel.
They attempted to get me outside. I kept running back in the house.
I remember seeing the first officer on the scene running out of the house with Norah on his arm, while still doing chest compressions. She had a little bit of color but my sweet baby was limp. I knew she was gone. I just knew. My fears had come true. How was this happening to us?!
We arrived at the hospital after what seemed like hours, but really it only took a few short minutes. We were asked to wait in the waiting area until someone took us back to the trauma room, where multiple teams of heroes were working on our baby. I was screaming for them to do everything she needed. I was wailing and praying out loud. I was begging everyone who passed us to pray, too. A sweet older lady was sobbing and praying with me. A complete stranger was devastated over what was happening to our sweet baby girl.
We were escorted to a family waiting area for a brief moment, where I told Hank I knew she was dead. I knew by how we were being gated off into different areas, and by the things people were saying to us. We were met by one of the EMS personnel who had been at our house, as well as a physician, and two social workers. The doctor said they were doing everything possible for Norah and warned us that her color may look different. The medic warned us that her room was very crowded, as everyone was there working on her, and that she had a breathing tube and many IVs.
I remember turning the corner of the ER to see a hallway filled with many people (probably 10-15) outside of a room. I knew that was her room. Within her room was another 10-15 people. There were two women holding each other up in a corner, crying. Several people were performing life saving measures on our sweet girl. Some were just standing there in silence. The pediatrician who was performing chest compressions on Norah had tears flowing from his eyes. Our sweet baby was lying there lifeless, intubated, with multiple IVs in her body, including two in her shins to allow medication to go directly into her bones. This type of access occurs in critical situations when intravenous access is not possible.
I felt myself instantly become nauseous and everything went dark for a second. I screamed. I asked to sit down. I fell to the floor. At some point during this time a doctor told us that they had not been able to restart her heart and it was time to stop. I knew. It was over.
Norah’s life was over. She was gone. She was dead. Her time of death “14:39” or 2:39pm. It seemed as though an eternity had passed since I found her, when actually our lives changed forever in just 49 minutes. Our entire world was now upside down. We went from living a good life to a living hell. I kept yelling for Hank to wake me up. I kept saying, “what are we going to do?”
Adding a baby to our household was both incredible and terrifying all at the same time. We had some big adjustments to make at first, mostly just typical normal stressors of family life, with a few bumps in the road. But nothing we didn’t overcome and tackle quickly. Afterall, we’re strong! Our marriage is strong! Our kids are strong!
We got into a great routine and things were pretty smooth sailing. We loved being a family of five. Norah was sleeping through the night. She was so laid back and “verbal” and such a pleasant baby. Addy and Sydney were thriving as biggest and middlest. Hank and I were doing pretty great juggling work and home and family and fun. Every single day I would send Hank a text at work, or verbalize to him once he arrived at home, that Norah was the greatest thing that could have happened to our family. Addy had filled our hearts, Sydney had expanded our hearts, and Norah had completed our hearts. I was so content and felt totally complete. WE were complete.
However, my fears and concerns, that occurred prior to pregnancy, continued. Everyone assured me that she was fine, doctors assured me that she was healthy. She was healthy. Yet I still kept thinking something was wrong or that something would happen to my sweet baby Norah. Maybe it’s just hormones. Maybe I’m crazy. Maybe.
Spring and early summer were busy. On March 17th, we celebrated our 8th anniversary. We felt so thankful and lucky. Next was Easter weekend (where many family members met Norah for the first time), followed by Norah’s Baptism/Addy’s First Holy Communion weekend (where more family members met Norah for the first time), another start to camping season, Mother’s Day, end of the school year, Sydney’s birthday, Addy’s birthday.
My OB called to share some incredible news with us. All test results were NORMAL. We were the soon-to-be parents of yet another healthy baby GIRL! Hank told me he prayed for another girl. We were all thrilled!
Due to my “advanced maternal age” (diagnosis: “Supervision of elderly multigravida, first trimester” to be exact!) my OB recommended that I undergo a non-invasive genetic screening test. The test advertises some key benefits:
Peace of mind
Preparing for a baby’s special needs if a genetic problem is found.
Helping to make decisions about how best to care for your pregnancy.
I had been stressing over the health and well-being of a third child, long before I was even pregnant. I was worried that we were “pushing the limits” after having two other perfectly healthy girls. We knew that we (I) needed this test.
This test also allowed us to know the baby’s gender. My heart told me “it’s a girl!” For some reason, choosing a girl name this time was easy for us. We would name her something strong, something Celtic. We would name her Norah Claire.
Addy & Sydney had prayed for a baby brother or sister for an entire year now. Daily prayers asking God to “put a baby in Mommy’s belly.” Laughing at me when I said it wasn’t going to happen. (Funny how kids have a way of connecting directly with God.) I asked that they begin to pray for us to win the Mega Millions; little did we know, we were already rich beyond belief.
After the initial shock wore off, mostly due to our “advancing age” and trying to figure out how we would juggle being outnumbered, we rejoiced. We knew this was meant to be. It was the luck of the Irish! Our littlest love was due on St. Patrick’s Day 2018, which also happened to be our 8th anniversary.
And so our journey began, as we embraced our new life, as a family of 5…