What I've Learned Since My Son's Cerebral Palsy Diagnosis That Others Need to Know
We need to talk about cerebral palsy (CP). Why? Because it’s National Cerebral Palsy Awareness Day (CPAD) today and, with one in 323 children identified as living with CP, it is the most common movement disorder of childhood. Chances are you already know somebody with CP — a family member, a friend, somebody at your child’s school. And if you don’t, chances are you probably will one day. So it’s important. For our family and for yours.
I don’t have cerebral palsy. My son does. But he has only just turned 3 years old; he’s barely more than a baby. So perhaps I am not the most qualified to talk about this condition — except, of course, as a mother to a young child with CP; I have plenty of experience with that. I know from speaking with other mothers and fathers who have lived through these first couple of years that our family’s experience is really not unique. And that makes me feel less lonely, but it’s also really rather sad knowing so many families have experienced the same heartbreak, fears and uncertainties as we have, and that so many families will continue to experience this tortuous early rollercoaster before coming to the realization that “Everything will be OK.” Because it will. Let’s just get that out there straight away. Everything will be OK. If only I had known…
This is only our family’s second CPAD that we have celebrated, out of the four that our son Seb has lived through since he developed cerebral palsy, we believe, during the final trimester of a difficult twin pregnancy. We missed Seb’s first one when our boys were just one month old, and we were in a blissfully ignorant, sleep-deprived newborn haze. We also missed Seb’s second, by which time we realized something was going on and were frantically searching for answers, a diagnosis, or preferably a simple explanation. I hoped Seb just had glue ear and that might be why he couldn’t yet balance, why he couldn’t yet sit. I realize that may sound ridiculous now. As far as I know, they have yet to invent the We-Don’t-Know-Yet-What-Is-Happening-With-Our-Child-But-Surely-It-Can’t-Be-Too-Serious Awareness Day. Perhaps they should.
Finally, after much pushing GPs, health visitors and physios, our son was diagnosed with cerebral palsy spastic diplegia at 15 months old. His MRI at 18 months old confirmed periventricular leukomalacia, a type of brain damage associated with CP. We were both relieved to have an answer, but also horrified at what the answer was and what it might mean for our young family. We grieved. We mourned for Seb’s physical future, and all we had planned for our family. The long walks searching for the perfect spot on a vast beach, watching our boys play football together out of the kitchen window, watching them walk to school on their first day holding hands. We were scared. All we wanted to do was to fast forward to the future, see that everything was going to be OK, and come back to the present to start enjoying it, to start living it again. In those early days and months, I wish more than anything I had known that “Everything will be OK.” If only I had known I would have saved myself so much torment, so many tears.
We have been fortunate though, so very, very fortunate. Our son had the mild side of moderate spastic diplegia with no serious additional CP-associated symptoms. This type of CP is the most amenable (but not exclusively amenable) type of CP to benefit from a surgical procedure called selective dorsal rhizotomy (SDR), a complex spinal neurosurgical procedure that permanently reduces or eliminates spasticity to the legs. Just one month after Seb’s second birthday, we celebrated our first CPAD since our son’s diagnosis knowing that this surgery could change his life and give him the opportunity to become a fully independent and mobile adult. We were already almost six months into a fundraising campaign to pay for this procedure with a doctor in Missouri. We had already raised the money needed for the surgery and were fundraising for his ongoing rehabilitation costs. We were in a very fortunate place. It really hadn’t taken too long after all to realize that everything was going to be OK.
Seb had SDR five months ago in October last year. It was a complete success. He no longer has spasticity in his legs. He no longer has spastic diplegia. He does of course still have cerebral palsy, there is no cure yet for CP. And that’s OK. Cerebral palsy is not a disease, it is not an illness, it is not life-threatening, it is non-progressive (although spasticity can cause secondary deformity over time). It is really not the worst thing in the world. Perhaps I’m not qualified to say this, but even if our child had been more severely affected, even if he had not been suitable for SDR, even if he never walked at all, we now know that it would have all been OK. He would still have had the opportunity to be happy, to be loved and be loving, to have hopes and dreams, to achieve and be successful. We know this because of the people we have met along the way who are doing just that. Not despite their debilitating condition, but because of it.
And this is why we are OK with cerebral palsy staying in our lives. We are glad the spasticity has gone, because it would have damaged our son’s legs, caused him pain and prevented the opportunities for mobility that he now has. But we are happy with CP living within our son and alongside us.
In many ways CP has made our lives better, richer, fuller. Our entire perspective on the world around us has changed. We understand others differently, we are more tolerant, more generous, more patient. We aren’t heroes, we are just a normal family trying to replace the “why us” with something more positive. Yes, of course, there has been a significant impact on our family: There have been immense financial and emotional pressures, my career has been put on hold to fundraise and care for our sons, and some friendships have wilted as a result. But these negatives have been replaced by a constant stream of mini-celebrations, of moments that make your heart flutter when you see your child achieve something so simple but so incredibly difficult, which has taken months of hard work. Like standing by himself and bending down almost to the ground to pick up a marble and straightening back up without falling. Like choosing to sit with his legs straight out in front of him. Our entire family has taken on a new understanding of the words determination and perseverance. Our son’s twin brother learnt patience and generosity before he was even 2 years old. He will grow up with a level of compassion and tolerance that might have been harder to teach him with a more “normal” life.
Without cerebral palsy, we wouldn’t have the incredible memories we made during our year of fundraising. My husband and I trained for the London Marathon for six months and completed it tied together three-legged (to represent the spasticity in Seb’s legs) in a time of 4 hours and 25 minutes, earning a Guinness World Record. We simply would never have done that if it wasn’t for CP. Our friends and family took on similar incredible feats, and we know our son inspired them every step of the way. More importantly though, we wouldn’t have made the friendships that we now value so much. People who helped us fundraise, people following the same path as us, people simply doing their best to try and keep us sane. More than anything the depth of our friendships has changed since our son’s diagnosis. We may have far less time for our friends now (sorry), but we know their worth and hopefully they know ours. Even if our son had not been eligible for SDR, our friends and our family have shown us that we would have had the support we needed for everything to be OK.
Cerebral palsy is here to stay, with no cure on the horizon and limited treatment options, we need to learn to live with it, we need to understand it and understand those who are closest to it. It is not going away. It is a brain injury caused around the time of birth so it cannot be screened for. The risk factors associated with this injury likely aren’t going to be eliminated even with a lifetime of medical progress. If we can’t eliminate it, we need to learn from it. And every single child you will ever meet with CP can show you what true determination and perseverance really are. It is up to us, as parents, as friends, as a community, to ensure that those qualities are allowed to flourish and fulfill potential.
Our son was fortunate. SDR enabled him to stand by himself just one month after surgery and take his very first independent steps after just two months. He can walk now (just about, if only for a few steps), and one day he will run. He will run. But even if this future was simply never to be his, we would have found a way to make his life as rich and fulfilling as he and his brother have made ours.
Follow this journey on Seb’s Legs.
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