A quarter of a century. How did we get here, my sweet, complex child?
So many memories of great times, good times, not so good times and horrific times swirl in my head. Living with and loving a medically complex child is a whirlwind of a life. On those quiet days that some would call boring, we call calm and peaceful. We breathe through it while we can. Then the intense times, the staring at the unknown times, the hold your breath in hope that this is just a blip in the crazy ride, she’ll get better, she’ll get through this, she’ll survive times.
We should be marking this day with a huge event, we would have in the past. Today is a quiet day of celebration. A year of hardships, loss, and worry. And yet she persists. So thankful for another year.
Those years have been years of research, of questions, of few answers and the stubbornness that has kept me going and you alive. Your stubbornness has kept us all on our toes to find the right things to make your life a happy one. It has not been easy. Not by a long shot. We celebrate the good times and celebrate the ability to keep moving on in this crazy life we live.
This 25th year has not been an easy one on anyone in our family. Divorce visited our family, not uncommon unfortunately in the special needs world. Our divorce is unique, just like Sophie. Ask those who helped us through this fire, we continue to make it work, just work differently as a family divided. Holidays once so full of family are now handled differently, with respect and attempted balance for all of our hearts. We are still learning to live this separated, but united in some fronts life. Divorce in the midst of a medically complex child just adds an additional layer of complex. It’s what we do when we keep the focus on the kids and their well being.
Our home is filled with love and stacks. Stacks of EOBs, bills, and doctor reports. Stacks of videos, DVDs, books and music discs. Stacks of medical supplies. Stacks of the inevitable laundry.
I started writing this blog this morning, the day you, Sophie, turn 25. Why am I struggling to put into words all the love and worry and gratefulness this journey with you has been? Technically, you’re not 25 until 11:58pm tonight. So I stare at the monitor and hope the words come to me. She shares her birthday with her Grandfather on the Prunty side. He is struggling health-wise, as is Sophie in her own unique way.
Her recent hospitalization with pneumonia revealed disheartening news. We’ve kept it close to our hearts as the holidays are not the time for sharing troubling news. But we’ve faced crappy news before and pushed through. We will again. That’s what we do.
Another pneumonia bout and hospitalization revealed that her heart and lungs are now affected. A part of her rare disorder, HSAN type2? Not that we know of or anticipated. I remember when she was a preemie at Rush hospital and I’d call in the middle of the night to hear her LOUD cries and think “her lungs are not bad, she’s the loudest in the ward!” It appears she now has pulmonary hypertension. And further tests show that she has connective tissue disease and auto-immune issues.
These last 2, while never fully diagnosed, has always been suspect due to her disorder. Not uncommon in the world of dysautonomia. But it throws her newest specialist, a pulmonologist into a tizzy. She’s just now learning that our unique child is more unique than most. She’s learning to “think outside of the box.” That’s what working with Sophie is all about. Usual protocol is reduction of fluids, medications with side effects (don’t they all??) that are scary to the person with dysautonomia. We are in the midst of further evaluation. This new doctor places her in the heart failure category. Digesting this new information I ask the hard questions. The ones no one wants to ask and no one wants to answer. 5 years if treated and successful. 2 years if not treated.
We’ve faced these odds before. It hurts to hear, but we’ve been in this place a few times before. It gives us some perspective and how to make this 25 year old’s life a quality life. What does it tell us? Another diagnosis. Another prognosis. A prognosis is just a guess. She’s proved time and again to not count her out. She’s survived beyond anyone’s projections so far.
One of the ways we calm her when she needs to be still is by counting. We count to her age when doing therapy. She thrives in that repetition that has helped her learn and stretch and grow both mentally and physically.
She’s happy, that is what counts.
It’s all about the Quality, not the Quantity. We’ll be leaning hard on the Quality bit in the next year or two or ten.
Will she make it to her Golden Birthday in 2021? It’s an admirable goal.
She’s in charge.