It feels like this just happened yesterday. On January 11, most of you reading this blog know that Sam was diagnosed with Duchenne Muscular Dystrophy. Until now, it has been difficult to put it down in words what exactly is happening and how I'm feeling. The question "how is everyone doing?' is such a loaded question because I never know how I'm going to answer it. I could be fine or I could completely lose it. I love that people care enough to ask, its just so hard to answer at any given moment. So for those of you who have asked and I've avoided the question (or you've avoided asking me), here it is.
My son will most likely die in his 20's. Rarely do men who have this horrible disease have families and grow old with someone. I'm pretty sure that's something a mother should never have to hear. There are so many hopes and dreams you have as a parent that you hold on to as your child gets older. In my opinion, it's what keeps you going when your kids are being rotten turds. I feel a flood of emotions - some rational, most of them not. I have good days and bad days. There are days when I just don't care who's calling because I don't feel like talking about anything - I just want to stare at the TV and not talk. There are days when getting out of bed is the hardest thing I've ever had to do.
I'm mad. How could this happen? How is it that we prayed and prayed and prayed and He didn't hear us? I'm mad at God - and as stupid as that sounds it's the only thing that makes sense to me right now - and I'm ok with it. Don't really care if people agree with that or not. I'm mad at my friends with boys who will never know the struggles Sam and our family will face. Being angry is part of grieving, it will eventually pass.
I'm sad for Caroline that she knows what her little brother is going through. I wish the conversation we had with her explaining it all never happened. The kid's not oblivious - she knows, and she flat out asked Nick and me "is my brother going to die?". I'm sad for my family and friends to watch what we have to watch until Sam is taken from us too soon. I'm sad that I feel like I can't ever have fun again. I mostly feel sad for Sam - he really has no idea b/c he's too little to understand.
I'm scared that I can't be strong for Sam when he needs me to be. I'm scared what this will do to my relationship with Nick. I'm scared that in a few years, our friends will eventually stop calling or hanging out because they don't know what to say or do b/c they're uncomfortable with how Sam's disease is progressing. I'm scared to go to a support group. I'm scared for my sweet boy who will probably get teased because he's different.
There has been an overwhelming number people calling or emailing or bringing us dinner and groceries. People who I barely know are donating to the MDA Walk or coordinating a fundraiser. People I went to school with, whom I haven't spoken to in over 15 years offering their support. Nick's brother and wife recently went to DC for the MD Care Act Reauthorization meetings and to advocate for Sam on Capitol Hill. It's so unbelievable. We are so touched. I know that we are loved and that does help when I'm having a rough "Sam day". When asked how we're all doing I tell them we're okay, but honestly it's never going to be okay. Ever. Eventually there will be a new normal around here, but right now the wounds are too fresh - I'm just not ready to be okay. Staying completely numb is the only way I can get through a rough day.
Digging myself out of the darkest hole I've ever been in has been such a growth experience and having hope is the only way to stand up again. There is hope for a cure and that the things I'm so terrified to watch Sam go through can be stopped before it's too late. I know it won't happen tomorrow, and unfortunately, having patience is something I am lacking. We go back in March to see his doctor and We'll get some more insight into everything since we barely remember the appointment in January. There is a good chance that somewhere out there, Sam will qualify for a clinical trial that is right for him. He's taking steroids to help keep him strong. He wears leg braces at night to stretch his tight muscles while he sleeps. He has taught me so much in the last 6 weeks about being brave and strong when you don't feel like it. We are doing everything we can for him right now. Even though we're devastated, we are fighting for him. I encourage anyone who knows Sam or who has ever loved a child to fight. If you have some spare time, please visit a page we set up for Sam on the Parent Project website here. It's a site that is aimed at finding a cure for Duchenne. The website is full of information about research and programs and groups that fight every day for Duchenne boys.
Sam being silly while getting fitted for his braces.
So there you have it. Do I sound crazy? It's ok to think so - I think it sometimes too... The healing process for receiving this kind of news takes its toll and it takes time to move on. I think that's difficult for others to understand. Apologies if I haven't responded to emails or phone calls - I have read and listened to every single one of them. We're all okay for right now. Taking it one day at a time is how we roll these days.
