Fast forward to today and it still hurts. It really doesn't get easier. At least, not right now. We force ourselves to have happy days because we have no choice. We have to make every day the best day ever for Sam. And for us. We have bad days too, more than we used to prior to January 11, but it's a slow process. There's still a lot of crying in the shower or while driving alone. Duchenne consumes our daily lives. I can now honestly say that when I'm explaining DMD to people, I can get through without crying. There might be a little bit of eye watering, but I no longer make people extremely uncomfortable by sitting down and sobbing on them. I think my hardest moments, as someone who is now a DMD parent (the worst club in the world), is that no one understands. Our parents don't understand. Our siblings don't understand. Our friends don't understand. Feeling like we've been dumped on a deserted island comes with the territory, I suppose.
Other hard moments come and go when friends or even acquaintances tell me "I've been praying for Sam". I love that people we hardly know take time out of everything that is important to them to pray for us. But some days a prayer isn't enough. Some days I don't want to hear that - I want you to find someone to save my son. Obviously it's not rational. The reality is having hope and prayer is the only thing that anyone can do. It's all we, as his parents can do. Trust me, no one has prayed harder than I for some kind of mistake or to just let me take Sam's place in all of this. At this point in this process, faith and prayer only goes so far with me. If I can't touch it or see it, it's not going to help us today.
Some challenges we've faced in talking about DMD is that people think we're talking about MS. Or that people immediately dismiss this like Sam has the flu or something. This is a very real, horrible disease and there is nothing that anyone can suggest to make it go away. Explaining to people that there is no cure seems baffling to them. Nick and I read an article several months back about a dad whose son has Duchenne. He wrote these words like he was looking right at us: "having a son with DMD is like watching him drown and not jumping in to save him". Our son is drowning and there's nothing we can do. That is exactly what this is. Recently, we met a couple whose daughter has diabetes. And I was jealous! I can take diabetes over this any day. As horrible as what I'm about to write sounds, wishing Sam had cancer crosses our minds frequently, too. At least then we could fight, it would be awful, but he'd have a chance.
Nick and I are seeing a grief counselor. She is really helpful. She has listened to us cry, and get mad, and (start to) learn to accept this. As wonderful as she is, she has admitted that she has no idea what we are going through. She's helping us be good parents, be good children and stay a solid couple all while grieving. And it's not easy. No one knows better what I am going through than Nick; and vice versa. She's helping us see that this isn't just happening to us. It's happening to our family, our friends, Sam's teachers, Sam's friends, the community. Which is why, I like to think, people don't say much more than "I'm sorry". Or in most instances, utter silence - not a phone call or an email. It's hard for them too, and learning to understand that has been tough. We were told it's very important for Sam to form close friendships early on. It's easier for his friends he's known for longer to know that while his body is getting weaker, he's still Sam. He's still their buddy, just now he's slower, or eventually, in a wheelchair. We have had a lot more friends come to the house to play in the recent months. Love hearing him play with his friends (and not just playing with sister and her friends).
Speaking of Caroline, she is such a caring and concerned sister. It didn't take long for her to grasp the whole picture. She checks on him at night. Helps put his leg braces on when we have babysitters. Tucks him in his bed after us. She recently started talking to her friends about it. Which is sometimes concerning because she tells them EVERYTHING - then you see the look of horror and confusion on the friends' faces. Once I figure out what they're talking about, I usually interject with "We really don't know what's going to happen" or "We hope really soon there will be a cure". It's ok to talk to your children about Sam - he knows he has a muscle disease. He doesn't know the end result of the disease yet, but there's no need to tell any young child that. Caroline just happened to figure it out. Unfortunately, it won't be too much longer until Sam starts to question why he's different. It's a day I think about all the time. It breaks my heart that one day soon Nick and I will have to confirm that to him.
Nick and I have been to every website about Duchenne. I know more than I care to admit about genetics and statistics. We've listened to every drug therapy web chat. Researched government funded health plans and clinical trials. It feels like a job just trying to keep up with the breakthroughs and news that comes out about DMD. Some of the news we find is encouraging. Some of it is not. We have to have hope that before Duchenne takes over, there will be a cure. It's all we have. We have hope and time on our side. For right now steroids, nightly leg braces, vitamin supplements, therapy and physical activity help keep him as strong and physically capable as possible while we wait.
Thank you to everyone who has supported PPMD or MDA. Your donations are touching. Your kind words and love help us on the darkest days. Your prayers are always appreciated. Your friendship is irreplaceable. I hope my yearly update will have some happier moments and more news that will help Sam and all boys with DMD.
thanks for sharing. i think of you guys all the time. i'm sorry. it's not fair. and i wish there was more. love to you.
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