Answers Aren’t Always Enough

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 have no adequate words to caption what I saw in this scene this morning. It was so symbolic, and so unknown, and so frightening, and so beautiful, just like life.

Gratitude and Grief

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.

God’s Mercy

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.

Onward.

I Am Listening.

Today has been hard. So hard.

Not for any reason, besides the obvious.

No specific “triggers.”

Just waking up to reality is a trigger.

I know that I have so much more work to do.

A lifetime of work.

Then I read this morning’s devotion.

I smiled through my tears.

So many signs.

So many messages.

More confirmation.

I am listening.

But I am still learning.

I am grieving.

But I am still grateful.

…I am listening.

An Awakening of the Season

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.

Kindness.

Appreciation.

Humanity.

Humility.

Refocus.

Respect.

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.

Acceptance.

Do all of it before a tragedy, an unseasonable death, forces your awakening.

My Favorite Time of Year

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.

Navigating Through the Darkness While Continuing to Spread Light

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.