SUZANNE’S STORY

My name is Suzanne, I’m 51 and I live in Coventry West Midlands. We are very lucky to have country lanes close by as we love doing long walks and yoga. My son, Hudson, has a diagnosis of cerebral palsy. He has hypotonia and is hypermobile. But this diagnosis is just to tick a box for funding, forms, etc. Cerebral palsy is such a massive umbrella term for any kind of  neuromuscular disorder. Hudson is enrolled in three genetic investigations. We still have not heard from them yet and have been enrolled in the studies for over five years, I think.

He’s my only child, so I don’t really know any better. But he’s definitely taught me patience and to appreciate those ‘inchstones’ instead of milestones in his development. I’ve learned to appreciate his uniqueness and not really care about what people think. I’ve learned to fight for things that Hudson needs.

Suzanne's son Hudson
Suzanne’s son Hudson

 EARLY YEARS

I definitely struggled when he was very young. I felt really overwhelmed and was depressed by everything (doctor appointments, medical tests, physio, occupational therapy, speech and language therapy). But then I read an article about ‘recurring grief’ relating to special needs parents. This made complete sense to me and that felt like a weight lifted from my shoulders. I’ve been able to handle the grief that comes at me (because it definitely feels like a punch in the stomach!) and know that I’ll come out the other side. My husband has been able to deal with Hudson’s challenges differently. He’s much more accepting and laid back. He always says that there’s always someone else in a worse situation than you. He definitely grounds me at times. But it is also strange for him because he has three neurotypical children, so comparing them to Hudson must mess with his headspace at times.

POSITIVES AND CHALLENGES

It’s the slow development and how nearly every day feels like Groundhog Day. I feel like time is linear in design. I don’t like to think at all in the distant future because that terrifies me. That’s why the sense of time has gone askew for me. I am so so proud of Hudson’s determination and perseverance. I hope that I’ve taught him not to give up and to literally pick himself off the floor to keep going! This past summer, Hudson walked independently! It was such a special moment and we celebrated that day! He’s definitely improving on his walking but in his own ‘inchstones’. I am proud that I’ve been more forceful in getting what Hudson needs. I’m not a confrontational person, but have learned to shout more to get what’s needed for him.

SUPPORT

It’s a time to remember that there’s hope. That Hudson does have a ‘diagnosis’, but knows that a different diagnosis may be out there in the genetic testing world. There may be treatments or therapies that he could receive, if he had another diagnosis. If he had a rare disease, it would also be a way to connect with other families that are extremely similar to Hudson. That support network of families would be such an invaluable resource. And how amazing that we are in this time that doctors can examine our genetic makeup so closely! Humans are amazing and complicated creatures and genetics is discovering new things all of the time.

Support groups are so helpful. I’m a part of SWAN UK, a parent support group in Coventry, and various groups on Facebook. But the most helpful group that I’m a part of is a group of mums that all have special needs kids. They just get it. And we all have gone out for drinks to chat, to moan and to set the world to rights!

TO SHARE YOUR EXPERIENCES OF LIVING WITH A RARE CONDITION PLEASE EMAIL [email protected].

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