That’s right, my little miracle girl will be 3 next week! And truly I cannot believe it. I know all parents say that; I know all parents feel the shock of how fast time goes when it comes to watching their children grow; but birthdays hit different for parents in the medical world. 3 years ago I was thrilled to become a mom, the only thing I’ve ever wanted to be, and dreamed of all the things I would do with my little girl. But life didn’t go as planned. Instead of celebrating Madison’s first monthly milestone at home, we spent it in the hospital wondering if she would even make it there. And when you don’t know if your new baby will even live a month, I can’t begin to describe what it feels like to make it three years later.
Birthdays for kids with rare disease are truly incredible milestones because we are not promised a normal life expectancy. We live with the very real fear, every single day, of not knowing whether something will happen to our child that they just won’t be able to fight. (Which is why it’s really killing us that half of y’all think wearing a mask during a global pandemic is an infringement on your rights, but I won’t get into that here.) I have watched Madison fight every illness she’s encountered, and thank God every time we make it over that hump and know she’ll be okay. But I can’t help but think about all of the “what if’s” each time it happens. What if, this is the cold that will take her? What if, this is the illness that is too strong for her to fight? What if, she starts seizing uncontrollably, or won’t be able to be weaned from the oxygen, or her sodium reaches such a dangerous level that we won’t be able to bring it back down? When healthy children catch a cold, parents enjoy extra snuggles at home and wait for it to pass, but when kids like Madison catch a cold it becomes a life or death situation. There are no quick trips to the pediatrician or extra cuddles. It’s a trip to the ER, IV sticks, and ventilator support.
But here we are, three years of multiple hospital stays later, ready to celebrate all of the fight Madison has within her! Madison’s first year of life was about survival. Last year was about finding balance. This year I can say happily say was about growth. By now we know what our routine is. We know how life with a medically complex child works. We know her cues better than we did the year before. We know what’s normal and not for her. We know what triggers her (most of the time). We know what she likes. We know how far we can push her. We know what situations she will tolerate and which ones she won’t. We’ve become more equipped and informed, which has allowed us to focus on her growth.
One of the best things that has happened is that we’ve gotten a greater handle on her seizures, which has allowed her to perform better in therapy. (This is something I don’t even like to say out loud because I know all too well that her seizures can get worse again at any time, but for right now she’s doing the best she has in her three years of life in regards to seizures which has been a huge blessing.) She’s become a little more consistent with her sleep/wake cycle, although we definitely still struggle with it. She finally got her stander and her wheelchair which are helping her to play and see the world in new positions. She’s now very expressive, wiggles around nonstop, has really become engaged with playing with switch toys, and physically has gotten so much taller and thinner; she’s no longer a baby but a full grown toddler! We’ve still had a lot of scary days, but we’ve really seen her grow and change this past year.
And then came the COVID-19 pandemic. A situation so unideal for a medically complex family which definitely put a damper on some activities we had planned for miss Maddie. We had two vacations booked that had to be cancelled and she’s unfortunately been missing out on in person therapy for 5 months now! She graduates out of Early Intervention this month and was due to start school in the fall, but now all of that is on hold which has been super stressful and just unfortunate. We don’t want to expose her to germs, but we also don’t want her to regress because of lack of crucial therapy. We’re sort of stuck in limbo trying to navigate what will be the best balance for her. But for now, mom & dad will just serve as therapists too!
Despite the difficult situation the world has been in however, we were still lucky enough to make some wonderful memories with her this last year. She visited Newport with her bff Lizzie. She was a flower girl for the second time in her aunt and uncles wedding. She traveled to Kennebunkport Maine for a fall family getaway. And probably our most exciting news of all, we found out she would finally become a big sister (and a big cousin)!
All in all this has probably been Madison’s best year, and I can only pray that it’s a sign that each year to come will continue to get better! While I’m not gonna lie, I’m slightly terrified about how I’ll handle having another baby, I’m equally as excited to see Madison with a sibling. I think it will be so incredibly beneficial for her and her growth, so I can’t wait to see how this next year pans out. I hope it’s filled with less health issues and more happy memories. I hope she continues to defy the odds and grow. I hope this year is as bright as she is!
So happy almost third birthday to the girl that changed my life! You have taught me more in these last three years than the previous 30 combined. You are inspiring, and brave, and beautiful, and while I wish every single day that life had been better to you, I will always be so grateful that you fought hard enough to stay here with us. Each day with you is a milestone; a miracle; and I pray we have a million more together. I’m so proud of you for how far you have come and I love you more than you could ever possibly understand. Here’s to year 4 my little big girl! Keep shining!
