'Your son might have Duchenne, we'll tell you in 6 weeks for certain'
This is a weird one... I remember sitting writing the words below through unending tears, shaking, hardly able to see the screen but knowing how important it would be for my future self to write these things down, knowing that I would need to re-read them so many times over my lifetime. Knowing that these words would be the first hand account of the biggest changing point in our lives.
In the following 2 years, we have become experts in Samson's condition. We have adapted, grown, had incredibly dark times which I really do not know how we have come back out into the light. We have had the best front-room discos ever and the snuggliest cuddles you can imagine. We have gone from a family of 4, to a handful of 5, but through this all, the Duchenne has remained.
So, let's rewind...(please remember, the thoughts below were my kneejerk reactions which I have copied unadulterated into the space below. I wanted to share the rawness of the diary entry. As you can imagine I wasn't as positive about it all as I am now, so excuse any negativity...... )
(Directly taken from my diary)
20th October 2015
Samson is 3, Leo is 6
Yesterday we found out that Samson has Muscular Dystrophy. We have to wait until November to find out if it is Duchenne. This is the most common version in little boys. It’s the difference between living to your 30s-50s at most, or living into your 20s. I went to sleep hoping it was going to end in the morning, but have woken today with it fresh in my stomach, it’s not going to end.
Its terribly terribly sad. Dad is broken, he feels paralysed as he can’t do anything. Lex has been amazing, its sinking in but he is the absolutely best person ever to have around on our team. He knows what to do, how to be positive, talk through it, behave normally, push Samson while he can be pushed and we’ve made plans for the future. We are lucky to be able to afford our house on one salary. We can have lex at home caring if we need to do that. We can ask for help. There is no cure. Its not going to go away and neither are we.
I texted the girls today to ask for their patience and support. I am going to need them now more than ever. I am not afraid to ask for help and love, we’re really going to need it.
Lex came home and we had a hug, he was in pieces, it was hitting him. The news is like oil on water, its not sinking in. Waves of nausea and tears come. I have had diahorea, don’t want to eat but know I need to.
I just googled some information about Duchenne’s it is so likely that I can’t believe it could be anything else. Wheelchair by 12, breathing problems, heart giving out, arrhythmia, ending in death at the latest 30s, no later. He has so little time if it is Duchenne.
We’re fine with the practicalities… different car, changing the house to suit Sams, wet room in bathroom etc. It’s the finality of the end result I can’t get my head around. 30s. That’s the equivalent of Lex and I now. It’s the thought that he won’t get married, or have children, or have his own grandkids, or do everything we imagined he would. Or maybe he will, I really don’t know! The uncertainty and despair is like its someone else. I wish I could take it away from him. I wish it could be me. Why can’t it be me?
Whatever the prognosis in November, we’re going through what no family should ever have to go through.
22nd October 2105
Day 3 and I woke up hoping it was over. Samson had had an unsettled night, up at 11.18 (lex and I went to bed at 9.30) and I brought him through to our room. I’m never going to deny him sleeping in our bed. Ever.
Yesterday, Lex said he could see improvement in Samson’s walking, he’s doing well etc. I wrongly cut him down by telling him they said that between 3-4 you can get false hope as they develop. He was cross and walked away. I shouldn’t have told him.
Spoke to Helen today, told her the thought of ending it to escape the pain had crossed my mind briefly, but I had swiftly got rid of it. The whole family is going to need me more than ever. Lex and I yesterday watched Leo play football and had a long chat. He’d just told his mum, who was shaking and devastated. I told lex my thoughts and we laughed, he also said that if I am not a carrier he agrees with me, we should have more children. He agreed with my thoughts about surrounding ourselves with love and a bigger family. Having something like this happen makes you reorganise your rational thoughts and throw caution to the wind. Who cares we’re never going to be rich, we are loaded with love.
Helen, Klaire, Nicole, Pete, Mum, Dad, Hayley, Lucy, Amy, Melissa, Tracy, Jolene, Kirsty. All friends who are solid and I trust to be there for us to help support us.
Its just heartbreaking, looking at Samson and Leo, knowing his fate, that his life will be most likely mainly in a wheelchair. That he will be and feel different. If he has Duchenne, his little life will be cut short by the most horrible disease, which has no cure. It is really the very worst thing to have ever happened, ever.
Dad said, it’s the saddest news he has heard ever.
I really can’t see a positive at the moment. I am sure we will have some positives in the future. WE’re already appreciating the kids more, ditching the cleaning and housework to be with them. This is surely a good thing.
Fast forward 2 years 6 months
I am so so glad I wrote these thoughts down. I am glad I can look back and feel the journey I have made since that dreadful time. The Forever Friendships I have forged, the inspiring and brilliant young people living with Duchenne that I have had the absolute pleasure of meeting, the ups and downs of life.
If you are going through this right now, please know that it will get better, you will feel the darkness shift (it will always be there, just not so blinding). You will become an expert in this condition, you will fight battles you never knew existed, you will advocate in a way you never thought possible, you will find that power, deep within that will get you up in the morning and put that smile on your face. And when that smile is there - let is shine out into the world, because, the world is a very beautiful place.