Being a parent to a medically complex child is never easy. There are so many things you have to figure out and remember. I’ve said it before, and I’ll say it again: one of the most valuable things you can do in life is build your tribe. I am very fortunate to have an amazing family that provides a great deal of support in our lives. Although I am so grateful and appreciative of them every day, they are not the ones I want to focus on today.
Today, I want to shine a light on the people who were not born or married into our support system. I want to focus on the people we’ve “picked up” along the way of our journey through life.
We have been attending therapies at Associates in Pediatric Therapy since my son was six-months-old. Starting therapy there was the start to a journey I didn’t even know we were on. For five and a half years, we have seen therapists and watched my son accomplish so many wonderful things. He sees physical therapy, occupational therapy, speech therapy, and a therapy my husband has coined “special therapy.”
These therapists have become like family to us, and I don’t just mean the four assigned to his sessions, but rather every single one we’ve met along the way. As my son sits in the waiting room or makes his way walking down the hall with his gait trainer nosily peeking in the rooms to say hi, he is always met with smiling faces and cheers. They have taken the time to celebrate him and his accomplishments. They give my son the motivation to take steps, literally and figuratively.
One of the hardest battles I’ve faced was accepting that my son needed a feeding tube; I fought it with everything I had. The days before getting it placed were filled with tears trying to fight and reason with my child about eating. Foods he would eat were few and far between. His weight crept up at a snail’s pace (to be generous). At a young age, a gastroenterologist was recommended. The commonly used local practice is GI for Kids where we began seeing Kelly, a CPNP.
GI appointments were (and still a little bit are) hard for me as they are when all my feelings of failure over my son’s weight come to a head, but Kelly has never once made me feel like I had failed. Instead, she has supported me through every decision I have made for my son. She has never rushed me to make big moves. She has been honest without being pushy. I’ve been able to make hard decisions knowing I had her support and the knowledge she gave me. Although we see Kelly regularly, for now, we are maintaining and no new big decisions have to be made at the moment. I hope it stays that way. I just jinxed myself, didn’t I?
We recently have found special specialties. I know that sounds redundant, but we recently have been to Cincinnati to visit a clinic that specializes in my son’s specific diagnosis. This means the providers he sees there have advanced knowledge on his diagnosis and can offer more insight into treatment. Is it fun driving out of state for doctors? No, of course not. Do we try to make it fun? Why yes, yes we do! I will go to the end of the earth to find the best care for my son even if that means taking the time to drive.
We’ve been incredibly fortunate with the medical team we’ve assembled for my son, though that journey hasn’t come without a few less-than-great experiences along the way.
It’s already heavy walking into medical offices that aren’t “standard” for kids, but when a provider adds insult to injury, it can leave you feeling even more broken. Believe me, I’ve been there. To that experience I say: things get better. There are other medical providers who will love your child and care for them the way that fits THEM. Take that appointment and find something you can learn from it. I’ll always remember the day I walked into a provider’s office with my son, feeling nervous and afraid of confrontation. My son was delayed, and I was doing my best, but I left that appointment feeling defeated and overwhelmed with guilt for not speaking up for him. Afterwards, I sat in the parking lot, heartbroken, and promised myself I’d never let that happen again. From that moment on, I vowed to become the advocate my son needs and deserves.
This world is hard enough on its own. We beat ourselves up for not doing enough, doing too much, making the wrong decisions — the list is endless. It’s easy to shut people out or hesitate to accept help. But I urge you: find a team you can trust. Surround yourself with medical professionals who truly care about your child. The right team can lift an enormous burden off your shoulders. They have the knowledge, the tools, and most importantly, the heart to help — if you let them.
Hi Angela,
Thank you for such an important and vulnerable post! I work for a nonprofit called Blind Early Services TN, based in Nashville, that serves families of young children who are blind or have vision loss, and your story echoes a lot of what we hear from our families, many of whom have a medically complex child. I would love to connect and talk more!