New Phases......

Well yesterday how little man Kye had a clinic visit. These visits involve getting up around 5 am to drive 3 hours through relentless traffic to Sydney. It’s a long day for us all and totally exhausting for Kye.

It’s always daunting each time we visit, as parents of Duchenne children will totally understand – there is fear and trepidation…. We hope beyond all hope that our child has not progressed since the last visit; but we know ourselves that in day to day life we have seen the changes, changes to how our child is running, walking, climbing, doing everyday tasks like getting dressed etc. We know there have been changes however, we hope beyond hope to hear the words he is doing well.

Kye got his first set of Night Splints this visit, and he was not at all happy about it. For a start the hospital is full of toys in every waiting area of the Children’s Hospital, Kye loves these toys and when it comes time to actually be fitted for these splints he does not want to leave those toys – this is a struggle, even taking a toy into the room was not enough to stop the hysterics and tears.

Kye cried his little heart out, screamed, kicked. We were totally heartbroken to see our little man in such despair. These new Splints are another stepping stone in our journey, he needs to wear every night when he sleeps – and here my husband and I are watching this little man so desperate to take them off, to never put them on ever again.

The Physio tells us that Kye’s muscles are starting to really tighten up, his movement in his hips is becoming more limited….. not news you want to hear, and then you hear people saying oh just strengthen his muscles…. Really! How do you propose to restore the dystrophin in my son’s body, many people have no clue about this disease, there is no regeneration or rebuilding of muscles in those who have Duchenne, your theory does not work, I get that you are ignorant to the disease – perhaps you could educate yourself (just a thought).

So Kye has to wear these things on his legs every night, they look extremely uncomfortable, and distress him so much. Last night he wore them for an hour or so, the fight to get them on him was horrible. The kicking & Screaming, crying and heartbreak was overwhelming, tears fell freely not just Kye, but mum and dad too! My husband Mark was amazingly calm, he laid on the bed with our little brave boy held him, assuring Kye that it was okay, and that his new astronaut boots were awesome.

It’s such a hard journey at times with things that have to be “normal” parts of life for Duchenne families. Everyday people take life for granted, be grateful if your child can climb up into bed and sleep comfortably all night. some kids out there are not so lucky. But you know what we will persevere and take these new challenges head on! We won’t let this thing beat us, we don’t let Duchenne Define our son’s life…..

It’s so easy to question these hard tasks on the Duchenne Journey, to question are we doing the right thing… Answer, is there is no right answer, we do what we thing is best, what seems right for our child at the time. Everyone’s circumstances are different, what’s right for one – isn’t necessarily right for everyone.

We know these Night Splints are a necessary part of Kye’s life, they will help him, even with the discomfort and struggle they will help. As much as we would love to just take them off him and discard them – we can’t. Seeing your young child in such distress is so gut-wrenching. Let’s hope that by normalizing these new things, we can overcome the struggle (I know we can), it’s just a matter of time and these splints will be ok and accepted – and we will be ready for the next new thing on our Duchenne Journey.

Love & Peace to you all, if you are not educated on Duchenne make it your goal to get educated.