I am overjoyed today to introduce you to my cousin’s wife Jenny. Jenny and her family have been through incredible hardship, and have emerged strong, loving, and resilient. She’s sharing her story in today’s post, and I am incredibly grateful for it:
My husband Tom and I met almost 15 years ago. We had an instant chemistry and quickly developed a wonderful friendship. It only took us 10 more years to finally figure out we were meant to be together and from there it didn’t take long. We were soon married and before we blinked an eye we were expecting our first baby. It all seemed like a magical story you would see on the big screen.
Not far into my pregnancy, our precious girl who we named Scarlet began to show abnormalities. She didn’t move much, her hands were always in fists, no one could ever quite count all of her toes, and her kidneys were very large and filled with fluid. Weekly ultrasounds became my new routine up until my scheduled induction. After over 24 hours in labor, she arrived. Tom remembers how she never cried as the team behind the curtain worked on her. I remember holding her long enough for one quick picture before the whisked her off to the neonatal intensive care unit where she would live for the first 31 days of her life.
In Scarlet’s first year, one symptom after another began to appear. Kidney disease, sleep apnea, epilepsy, an inability to swallow without sucking milk into her airway, tone issues, and challenges with sleeping regulation. We had grocery list of specialists including 3 geneticists yet still we did not have a diagnosis.
At close to one year old, we went to a new neurologist who quickly informed us that our silent feisty warrior, Scarlet, had a neurodegenerative disease. Since her birth, MRI’s indicated she had lost a significant amount of brain mass. Finally at 3 years old we got our diagnosis of Schinzel Giedion Syndrome and our neurologist was proven correct.
As first time parents I can’t explain the grief we experienced. Every milestone missed, every function lost, every time she was overlooked, every hospitalization and there were lots, the devastation of learning the average lifespan for her diagnosis was 2, and the sheer isolation of having no one that understood this pain. We still had our baby girl but we grieved the loss of everything we had dreamed for our child over and over again.
Somehow we did find a new normal. We got nursing assistance, ramped up our team of physicians with only the best, and eventually we had a consistent solid routine for Scarlet and we began trucking along. As we began to gain some control back in our lives we were better able to enjoy the small victories and Tom and I watched our confidence grow.
Before long, Tom and I were ready to plan for another child. We met with a genetic counselor to plan for testing and to our surprise, they were not as concerned about Scarlet’s syndrome but were highly concerned about the disease my husband had as a child, retinoblastoma or eye cancer. Tom lost his left eye to the disease at just 8 weeks old. Sure enough, via an amniocentesis, we were given the heart breaking news that our next child was positive for the retinoblastoma gene.
When Scarlet was 2 and a half years old our son Fritz was delivered via cesarean at 37 weeks with two tumors already present in his left eye. By day 5 he had undergone a spinal tap, MRI, placement of a central IV line into his chest, and his first round of systemic chemo. It felt like starting all over. There was so much more to learn and manage. The search to discover a new normal began again.
It came. Our new normal appeared one day. We were busy and stressed and tired but we were having normal days and a flow that worked. It felt a bit like a miracle. So we figured, why not see what another baby might bring to this family because apparently we like a challenge.
When I became pregnant we knew the plan well. I set up appointments with the genetic counselors and had testing done as soon as I could. Waiting for those results was grueling. I felt like this baby was a girl and I prayed in my head all day every day until the results came, “healthy baby girl, healthy baby girl, healthy baby girl.” And that is exactly what we got.
Clementine was born a little over a year ago and she is the healthiest happiest spunky little overachiever I could have imagined. So much of my heart healed with her birth. I had finally had my “typical” new baby experience and it was incredible.
Life now is much different than I could have ever expected. It just goes to show you, no matter how much you plan and prepare, this plan is not in our hands.
Scarlet is now approaching 6 years old. She has beaten the odds her entire life and shocked every physician she has ever encountered. We have almost lost her a number of times and have had to make incredibly difficult decisions regarding her health, including creating a DNR for our child. We have held strong to our beliefs in compassionate care and quality of life above all for Scarlet. This has allowed us to keep her home, surrounded by her loving family, as much as possible and she is thriving.
Our sweet funny little Fritz has continued to have sedated exams on a monthly basis and various treatments to both eyes for persistent tumors for his entire 3 years of life. A little over a year ago we ran out of treatment options at home in Minnesota and began traveling to NY to see one of the leading retinoblastoma experts in the world. Fritz has experienced a number of miraculous treatments since this chapter began.
Unfortunately, he has also experienced a number of reoccurrences. This July, treatment in NY started up again for his most recent reoccurrence. Each exam, which can be monthly or weekly at this point, determines when we must return for the next treatment and what type it will be. Despite this rigorous routine full of unknowns, our fighter keeps surprising us with his spirit. He has a drive for life that won’t slow down, sometimes even to sleep.
I look back at how far we have come and the road that led us to where we are today and I am overwhelmed by emotions. We have fought for this family so hard that we haven’t taken many moments to reflect on what this journey has taught us. From the extreme highs to the extreme lows, each child has been an incredible blessing and those little people have become the lens through which we now see the world. We now understand what it means to truly love another unconditionally because of them.
Tom and I have stared down the greatest fears a parent can encounter and through those trials our relationship has only grown stronger. We have seen each other at our weakest and learned to love and trust each other more from those moments.
Perhaps the biggest lessons we learned came from facing Scarlet’s mortality. Unexpectedly, we discovered how to live each day, not like it is our last, but like we will all live forever. Because the moments that make life worth living are not in the special occasions but in the everyday moments that are special.
As you can imagine, medical bills are a daily part of Jenny and Tom’s lives. If you feel led to bless their family financially, please visit their GoFundMe page here. Above all, please keep Tom, Jenny, and their precious children in your prayers.
All I can say is, “Wow”. We have been so fortunate.
We take so many things for granted. This family is simply amazing and such an example for all of us!