Two and a half weeks ago we visited Dr G. It’s been a strange few weeks, on his advice we were to start Kade immediately on a no processed foods, sugar free diet and give him some supplements just as a starting point. Bloods were discussed and are now arranged to be drawn a week on Tuesday. To hear someone say to my son they 100% believe what is wrong with him is physical and in no way mental was like music to my ears. Finally someone who believes, that we can work with!
Thankfully I am a dab hand at diet changes as my younger son had allergies as a small baby and I eat a plant based diet, so label reading is second nature. I cleared out all the foods that were not appropriate and began from scratch. Bread machine purchased, butchers, fishmongers and locally sourced eggs and veg I was ready. I made one big mistake by buying homemade jam, completely forgetting it contained sugar. When I finally realised my mistake this was when the new diet really showed it’s benefit. Five days of no anger and frustration.
This is huge for us, a small piece in a huge puzzle, a step in the right direction.
He has had joint pain and fatigue but not as often and not as severe. There is something happening. To an outsider they may not realise it but when you live day in day out with your child you notice these small subtle changes. Like coming down the stairs and announcing they are hungry and would like to make something to eat. Even if it is at 1130pm and you are desperately tired and ready for bed. You defrost those sausages as they grate cheese and chop onions, praying they do not cut the end of their finger off, because this is progress. This is a change, it is a flicker of light. The child who had stopped coming down stairs now reappears like magic. Making jokes and preparing food like he did before his treatment was spaced out and every thing turned to shit.
It will be five weeks on Monday since Kade last received ivig. I notice his head tic sometimes, I know he clears his throat a lot , I know he says his skin on his hands feels funny like tissue paper about to rip, I know he moves his joints because he says they feel uncomfortable, I know he is still incredibly tired, I know his gait is still awkward when walking, I know he cannot yet run, but he is eating and eating well, and is calmer and happier.
I am not going to lie, I am apprehensive of what may happen in the weeks to come. I know Kade can make it to five weeks post ivig with no huge issues. The next few weeks ahead are daunting but we have plans. What lies beneath will be found and addressed. My son will make a full recovery.
Moments like this are rare and when you get them you grab hold and do not let go. It is proof that something physical causes Kade’s symptoms, it is as clear to me as my own reflection in a mirror.
The last six months have taken a huge toll on my son, I am full of admiration for him, I am proud of his determination and courage. From the age of almost 12 he has experienced chronic pain, physical disabilities, mental anguish, he has listened to people disregard his situation as being a mental problem. He has carried on, he has never given up. He has received treatment and dealt with the side effects alone. He has won so many battles, at the tender age of only 14 he is truly the most exceptional person I have ever known.
I think of the future and it will be bright for him. I dream of the day we go back to St Andrews and he runs towards the waves with his brother. It has been over two years since my son ran, the day he regains the ability to run again will be the day I will know my son has recovered.
I know my son you see, I know how he was, how he should be and I know how he will be.