As many of you know our life with a medically complex/fragile child is filled to the brim with "I don't know". This "I don't know" life was again the only answer we received with results from our recent sleep study. The ENT doctor called me on Friday and I was so hoping for an actual answer to her snoring and possible sleep apnea but all I got was "I don't know". For ENT purposes the study was inconclusive. She said it showed one episode of obstructive sleep apnea and that Madilyn does enter all stages of sleep but during the study most were too brief to really tell her anything that she needed to know. She went on to explain how some people think that tonsil and adenoid removal is considered routine thanks to most insurance regulations but with Madilyn it would be anything but. The risks are way to high for her to remove them without conclusive evidence that it will help her. We would be there for weeks due to the risk of hemorrhage and the fact that we live so far away. The risk of the surgery shutting down her GI tract is way to high as is the risk of it causing a critical sugar crash that could leave her comatose or in organ failure. The "I don't know" options given are a steroid nasal spray to see if that helps and if after a month there is no improvement we will be referred to the sleep clinic doctors and put through a boat load more testing to see if they can figure anything out. The positives are other than that one episode her oxygen levels remained steady and good throughout our night of little sleep. I can live with that.
I got stuck on the "I don't know" for about 2.3 seconds. Then I came to the quick reality of "I don't know" is okay. It's better than the definitive negative answers we could have received. I don't know exactly where in this journey "I don't know" became so acceptable,but it has and here's why. We started out with "you will never go home with a baby, she's so little, so sick and has so many genetic issues she'll never survive".....that turned into "she'll be lucky to live to 8 months old"....and when we gained custody of her at 11 months old it turned into "if she's alive in 3 months call and schedule another appointment". I have become oddly familiar with life flights crews and oddly comfortable screaming at doctor's to stop writing my child off because of what her diagnosis looks like on paper. I have become so in tune with my "mommy instincts" that doctor's no longer question when I am telling them something is wrong, they just trust me and try to figure it out. I have screamed at an ER doctor to do something because my child was dying in my arms in the only place that could save her life.
I have been looked at and whispered about among doctor's and therapists when they questioned if Madilyn knew her name or knew who I was... Madilyn proved them wrong. I have been told countless times "that's impossible, she shouldn't be alive much less able to do that"...it's okay, because I don't know how she does it either but she does.
It's actually kind of crazy to hear that your child has defied all odds and hundreds of years of genetic research just by being alive. They are thrilled and amazed that she's actually thriving. Endochrine was so thrilled at this last appointment with her growth. The doctor said "I don't know how you did it but she's growing....it's amazing". We hear quite often "I don't know how you do it"..my response is "I don't know how we couldn't". Madilyn had my heart from the moment my daughter said she was pregnant. When we found out that she had a severe case of Dandy-Walker Syndrome the prognosis was not good. My family can vouch for the fact that I completely trusted my gut when I defied doctor's by preparing to take her home when they said she never would, they all thought I was crazy. It's funny now, three and half years later because my response was "I don't know....how to make you understand what I feel but she'll come home".....that infamous and recurring "I don't know"..
Someone asked the other day about life expectancy for Madilyn and if she's "getting better". I don't know how a child with multiple genetic rare diseases ever gets "better", there's never ending risk in our life, there's always something going on with her but I told her " I don't know, but she's here and she's happy and we'll take it". We live every single day in the moment because we know that it can change in the blink of an eye. We take nothing for granted.
Madilyn is an absolute blessing in our lives. She has taught me more in her short life than I ever could have imagined, and for that I am thankful. I've had countless doctors and therapists ask how we do it and my typical response is that "we just love her". I'm not super mom and I have zero super powers, I'm not special, I'm just a mom that loves her child unconditionally.
On our recent trip to Milwaukee for appointments our GI doctor very sadly told us he's moving to Texas to be closer to his family. Madilyn was his very first official patient out of med school. We love him and have a boat load of gratitude for him for trusting us, listening to us and not being afraid to think outside the box when it came to Madilyn's care, we wish him well but are very sad to see him go. Right at the end of our appointment he was holding Madilyn playing with her. It was in this moment that I received the hugest compliment I think I will ever receive in my life. He was looking at her with the biggest smile and you could tell he took pride in all that he has done for us. He said that someday he will see us again when Madilyn is famous and advocating for other children like her, he said that he has all the confidence in the world that she will do great things with her life. He thanked me for letting him share in our life and trusting him to be her doctor....He then looked at me and said "I don't know how you did it but you have loved her to absolute perfection".......this moment taught me to love the "I don't know"...
