The Hardest Thing About Being Part of the Special Needs Parenting Community

As special needs parents, our first instinct when we receive the news can be to seek out other special needs parents. We need advice and support, even if there’s no diagnosis or the diagnosis is different. My son Jaxson has Kabuki syndrome, for which there is no cure. There are only four other Kabuki families in our state, and the closest is over an hour away. On top of that, we didn’t get a diagnosis for Jax until he was 2 and a half. So I spent a lot of time researching and looking for support in as many places as I could.

The special needs community is a huge family. It doesn’t matter the diagnosis or what the issues are, when we meet each other there is an instant kinship. It’s a fabulous community! We support each other, listen to each other, give advice when asked, share donation pages and say prayers constantly for everyone. With that also comes a lot of grief, though. Not grief as in giving each other a hard time, but grief over hospitalizations, surgeries, regressions and the loss of children. It may not be our child suffering, but we feel it as if it was because that’s how much we care.

And I think this is the hardest part about being a special needs parent: not feeling guilty when your child is healthy and happy, and you know there are families out there who are not so lucky.

We’ve spent Jaxson’s entire life in and out of the hospital: 12 surgeries with more to come, therapy appointments, imaging on vital organs, specialist appointments and various studies. But Jax is here with us, something I cherish every single day. I cherish my time with my other son Jeffrey as well. He doesn’t have a diagnosis, but that doesn’t mean nothing can happen to him. So we put all of our focus on family and spending as much time together and doing things together as we can. Why? Because you just never know what’s going to happen on any given day.

I have too many friends who have lost children, or who have spent days watching their child be ravaged by a disease, or their body has shut down and there’s nothing anyone can do. I’ve seen friends have to call in palliative care and hospice, those who use nurses and aides on a regular basis, and here I am, able to manage without help. Sure, Jax has had his setbacks and terrifying moments, but he’s here. And he’s about as healthy as he gets.

It is extremely difficult not to feel guilt when I look at my son and celebrate everything he’s gone through and overcome just to be here. There are many parents who would wish for the same, only they weren’t given the chance.

No one likes to compare their child to other children, because they are all so vastly different. They all write their own book, and no matter what the diagnosis is, no two kids with the same diagnosis may face the same problems. We use the diagnosis to compare problems, see where things are the same and what works for others with the same issue, but it’s never comparing situations. And when there’s no diagnosis, it can feel like you have no one to relate to. But one thing remains constant about the special needs community: We are strong, and we will never give up.

I cry and feel my heart break with each loss, each regression, each setback. I smile and have a full heart with every milestone overcome, every discharge from the hospital, every first step and first word, and every time another parent is proud I feel that pride with them. I know I am not alone.

The hardships that come with raising a special needs child are many, and being part of such a tight-knit group can be both heartbreaking and rewarding. But I can promise you this, not one of us would change a thing. Our kids are perfect, and any sadness or grief that comes with our challenges is something we accept and embrace. No one wants to see a child suffer, but when they do, there’s always an open ear and a shoulder ready and waiting.

This story was inspired by Grayson’s Story. Grayson has no diagnosis and has lots of ups and downs. We love Grayson and his family!

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