When You Live in Limbo Hoping for a Diagnosis for Your Child

Until we had Brody, I lived in a disability-free bubble. I admittedly didn’t spend much time thinking about disabilities, and I certainly didn’t know that 6,000 children are born in the U.K. every year with a condition that is likely to remain unknown. Fast-forward four years and I am only too aware of this.

Today, we had a long awaited follow-up appointment (rescheduled three times until I complained) with one of Brody’s pediatricians. I left — yet again — deflated with no answers and no hint of a plan or diagnosis. My mom said to me as we left, “I don’t really know what you expected him to say.” Maybe I didn’t expect, but I certainly hoped, as I do at every appointment, that he would have a plan in place to find out why Brody is — as he put it — “significantly delayed.” As much as I know they have no answers, it doesn’t mean that I don’t hope they will try to find one. I leave every one of these appointments feeling like I’ve been hit by a ton of bricks all over again. It’s like everyone expects you to shrug off living in limbo. It doesn’t get easier. Maybe one day it will.

Not every SWAN (syndrome without a name) is the same — we all have our own unique stories to tell because our children are unique. For some it was obvious from the very start that their child had a condition, and for others — like me — it wasn’t.

Brody was born on Friday, January 13, 2012. For about I’d say 10 months, I was unaware that he was developing differently. It really began with weaning and textures (and endless vomit). I’d then spend another 10 months or so battling my thoughts as family, friends and health professionals told me that he was “just slow.” He was my first child and I didn’t know any different. Maybe they were right? Then one day, Brody had six seizures. He was 22 months old.

From that day, health professionals started to take notice, and so began our global developmental delay journey and endless appointments and tests — pediatric, occupational therapy, physiotherapy, dietician, ENT, educational psychologist, orthoptics, orthotics, MRI, EEGs, TAC meetings, yadda, yadda, yadda!

So, what does global developmental delay (GDD) mean? I admittedly think to myself, “Isn’t it self-explanatory?” when people ask — but clearly it’s not. This is mainly because delay for many means can or may catch up. I doubt I’m alone in clinging to this notion when I first heard the term associated with my beautiful boy. Now my expectations have shifted somewhat. Sure, I would love for life to be easier for him. And let me tell you he is amazing and takes everything in his stride, despite not having it easy (usually with a big smile on his face). I would love for him to talk. Communication might be taken for granted by parents tired of hearing “why?” “no” and “are we nearly there yet?” It makes my heart ache when my nonverbal child is unwell and can’t tell me what’s wrong. It is just awful. Life is a constant guessing game.

The truth is global development delay can often mean “we don’t know.” No diagnosis. It can vary in the degree of involvement. It can leave parents with endless unanswered questions. Will my child ever talk? Will he ever be able to ride a bike or jump on a trampoline? Will he always live at home with us or will he be able to care for himself as he gets older? Fear of the unknown is something many of us SWAN parents likely have in common. Let’s face it — it’s petrifying to not even know whether or not your child has a life-limiting syndrome.

Brody has a lot of conditions common in GDD kids — he is nonverbal, has hypermobility, hypotonia, epilepsy and sensory processing issues. Thanks to Google, I am also aware that these are common in other syndromes. However, Brody ticks boxes associated with a lot of things — but never every box. At the tender age of 4, I’ve diagnosed him myself a thousand times already.

There is the Deciphering Developmental Disorders (DDD) study of course, which I feel is our only hope of a diagnosis. Yet parents wait years for an answer and many still don’t get one. Honestly, some days I don’t know if I want a genetic answer — which will still probably leave us without a prognosis! It would give us a reason though.

Frustratingly for many, no diagnosis can mean a lack of support from professionals and an absence of understanding from friends and strangers. I feel it’s easier when you can name a disability. People can be a lot more accepting of a name than they might be of an unknown. There is also the isolation factor — not having a group you can fit into. Where’s the common ground?

If you’re in the same boat as me, I am with you on the hard days, and trust me, I know it’s not easy. I know, like any parent of a child with disabilities, that some days you are exhausted by the worry — a constant weight on your mind. Some days you can take things on the chin, other days you hold back the tears until you get in the car/close the front door/put your head on the pillow at night. I’ve sat in those meetings where professionals talk about your child without emotion and you feel like you could just crumble there and then.

Our kids are so precious, so important and so loved. Our mission in life is to ensure that we can help them and give them the support they need to reach their full potential, whatever that may be. Most importantly of course, we want them to be happy. Love carries you through the hard days, weeks — life. Like any parent, you do your best.

Brody has taught us so much. Pure unconditional love. To smile, laugh and appreciate the simple things in life — things that so many might take for granted. We try to focus on what he can do — which is lots — and not what he struggles with. Some days that is easier than others, naturally. I recently read that “grieving the losses is not compatible with celebrating the triumphs.” How true it that?

Our son is the perfect little boy, and he is awesome. Diagnosis or no diagnosis, we will fight to ensure he has everything he needs, whilst hopefully keeping that beautiful smile on his face.

SWAN U.K. is a charity that offers support and advice to families with children who have undiagnosed genetic conditions. Learn more about them and Undiagnosed Children’s Day here.

Follow this journey on Brody, Me & GDD.

The Mighty is asking the following: Describe your experience of not quite fitting under one specific diagnosis or a label your community identifies with. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.