Well, my babygirl is about to turn TWO! TWO! I just can’t believe it. Her birthday comes with such a whirlwind of emotions. When you see your infant almost lose their life, when you live in a hospital room, when you’re forced as brand new parents to have “the” talk about what could happen when you pull a breathing tube, you become faced with the reality that your baby may not ever celebrate a birthday. And yet, here we are, two very hard years later, celebrating all of the strength, perseverance, and love Maddie girl has shown us all in the last two years of her life. She is truly a miracle and inspires me every single day.
When I was pregnant with Madison and dreamed of everything we would do together, I certainly thought we would be celebrating some different milestones come her 2nd birthday. But life had other plans for her and the mere fact that she is here is the greatest milestone we could ever celebrate. One I won’t ever take for granted.
Entering the special needs community I have unfortunately seen more children than I’d like to admit lose their battle, whatever that battle may be. I’ve seen parents mourn for their babies who should still be here. And each loss hits so hard, because as a special needs parent you know deep down that that could be you and your baby at any minute. It’s a terrifying situation to be in. And one most special needs parents face everyday.
A lot of children with conditions like Madison don’t live normal life expectancies. And hearing things like that from doctors is something hard to shake. There are miracles, and children defy the odds everyday, but there are certainly things we’ve been told that I can’t just wipe from my memory, as much as I hope they won’t be true for us. For me, a birthday brings out a lot of these worries about Madison’s future. I’m happy we made it another year, but sad things are still so hard. I’m sad she’s getting older. I’m excited to celebrate her and all of her hard work, but worried about what her future holds. And even though her birth was a positive experience for me, it serves somewhat as a countdown to 11 days later when everything was taken from us and life changed dramatically. I’m looking forward to celebrating another year with her but I’m equally overwhelmed and anxious.
Madison’s first year on earth was harder than I could ever put into words. To be honest, that entire year was simply about survival. Forget being thrown into parenthood, which is hard enough in itself, being thrown into a medically complex situation was so completely overwhelming, and most days, still is. But we made it. And by her first birthday I knew more about hospitals, medications, bloodwork, specialists, therapy, vitals, you name it, than I ever thought I would have. By Madison’s first birthday I can’t tell you how many times I had been asked by medical professionals if I worked in the medical field because of how natural these things came to me. But it wasn’t natural. It wasn’t being strong. It was survival. I had to help my baby. I had to fight for her. I had to make sure I was doing all I could to give her the best possible chance at a good quality of life. And so I learned everything I could about her diagnoses. About therapy. About specialists. About what questions to ask. And it was worth it, because we made it.
This year however, even though I think we’ll always be in a bit of survival mode, was more about balance. Figuring out just how to balance all of Madison’s medical needs with also still living a “normal” life. Figuring out how to juggle therapy and appointments with walks in the park and play dates. Figuring out how to read Madison & know when she needs a day off or extra snuggles. And while we will always have our rough days (or weeks, or even sometimes months), again, we made it. While there are many days I wake up wondering how we’re going to keep going, here we are. The day before her second birthday! Still alive. Still fighting. Still moving forward. And definitely in more of a groove if I do say so myself!
This year Madison started ABM therapy, physical therapy, vision therapy, and speech therapy with a new team, all of which have been positive experiences for her. She went to the beach and boardwalk. She traveled to Vermont and hiked up mountains. She ate small amounts of table food for the first time. She flew on her first plane to Florida. She went on her first long road trip and vacationed in South Carolina. She was a flower girl in her Uncle’s wedding. She’s adjusted to a much better sleep/wake cycle. She was started on the growth hormone. She’s become more vocal. She’s gotten much stronger. She walked a few steps in her walker. She’s come off medications. She became a medical marijuana patient and started a new CBD that has done wonders for her clarity and development. Her seizures have greatly improved. She went to her first Mets game and visited a sunflower farm. She played with her first switch adapted toy. She traveled to New Hampshire for a wedding. When I really think about it, she quite honestly, did a lot! And most importantly she did these things far more connected and alert than she was last year! We did all of these wonderful things while still balancing multiple therapy sessions a week, specialist appointments, and of course the occasional hospital stay. We did it all!
I can’t say this year was easy. I don’t think life for us ever will be. And I will always wish this world was better to her. I will never understand why she didn’t deserve more. Why everything was stolen after just 10 healthy days. But I’m so proud of Madison for never giving up. She is truly my hero.
So here’s to you my little Maddie Claire bear. On the day before your 2nd birthday. I hope more than anything that this is your year! I hope year 3 is all about FUN. I hope it’s about GROWTH and HEALING. And I hope it’s about HAPPINESS. Keep on fighting. Keep on blossoming. Keep on lighting up our lives and inspiring everyone around you. I love you. Happy (almost) 2nd birthday!