FAILURE TO THRIVE - it’s one of the first diagnoses that a parent of a child with special needs might receive. In the medical world it simply means decelerated or arrested physical growth, typically associated with abnormal growth or development, but to all of us it means just what it says - my child is failing to thrive.

Failure: ‘Lack of success’

Thrive: ‘To prosper or flourish’

As a parent of a child with special needs, you may hear it often. You’ll hear it at their pediatrician appointments, you’ll hear it noted in morning rounds during hospital stays, and it will forever live in their chart when you go through their online medical history.

Front and center: ‘failure to thrive’.

If you think about what you want for your child, whether they’re typical or not, “thriving” probably sums up the one singular thing you want for them. You want them to be happy, you want them to succeed, you want them to make friends, be included, and just enjoy life - you want them to… THRIVE.

I remember first hearing Hattie’s diagnosis of failure to thrive which came almost immediately after she was born. Now, again, this simply meant she was smaller than average and had some catching up to do, but hearing those words felt like a complete punch to the gut. Almost seven years later, it still appears on her list of diagnoses - but what would I consider Hattie to be doing? I’d say she’s thriving. She’s happy, she’s healthy, her seizures are managed, she’s following her own growth curve, she can communicate to us through her eye-gaze talker, and she can light up the room with just a smile.

While advocacy, equipment, and taking the right steps in terms of therapy, medication, etc. are all important, we’ve decided to really take a step back (or forward) the past couple years and focus on Hattie’s happiness. This has meant things like pulling her out of a special needs school and surrounding her with typical peers, saying ‘no’ to some therapies and appointments so she’s not being poked and prodded all week, and even deciding to make living near a Childrens hospital NOT a priority and moving out somewhere where our family can breathe and just be together.

It’s so easy to get inundated with doing all the therapies, all the doctors appointments, all the equipment, all the at-home stretching/diets/extended therapy/standers/feed training/home adaptations. Often as parents we will ask ourselves, “Are we doing enough?” We want Hattie to have the opportunity to walk one day. We would love for her to eat and feed herself without needing a g-tube. We want her to be able to communicate with us and others, and, yes - we would love for her to be able to go potty on the toilet one day. But most of all - we want her to be happy, healthy, and we want her to know that she is loved more than she could ever fathom. Because of these priorities, we’ve learned that it’s ok to take a breather sometimes. It’s ok to take a break. And while we’ve been in this new season of life with our girls, we’ve truly thrived.

If you’re familiar with our family’s journey, then you’re also aware that we brought our youngest daughter, Neela, home from India in Summer 2022. While she is cognitively typical (and brilliant, by the way), she does have a physical disability called arthrogryposis multiplex congenita, a condition involving muscle and joint contractures as well as clubbed hands and feet. She just conquered her first visit to the operating room last week, getting surgery on her legs and feet.

Whether you just found out your child’s diagnosis or you’ve been parenting a child with special needs for a while, I hope you find comfort in knowing that you’re not doing this alone, it’s ok to take a break, celebrate the “inchstones”, and know that your child and your FAMILY can thrive no matter the diagnosis that’s written on a piece of paper.

It’s been a while since we’ve posted a blog here and for that, we apologize. The goal of this blog originally was to keep everyone apprised of Hattie’s journey and while it still is, it has pivoted into being more of an informational resource for families receiving a 1q43q44 chromosomal deletion syndrome diagnosis for their child. If you Google “1q43q44”, not much comes up… there are some published research papers, some disheartening info of ‘worst case scenario’ outcomes, etc, but a picture of little Hattie and “Life With Hattie” is right there in the midst of all the noise and for that, we are grateful. If your child has just received a diagnosis, please feel free to reach out to one of us on Instagram or leave a comment on the blog. We are still along for the ride on our own journey and have a lot to learn. We hope we can help encourage you to embrace this new life - whatever that may look like for your family.

-Abby and David Heasley