While raising 2 boys and having a nephew, it's nice to have a little girl to love on. My niece Ryann is amazing and one of a kind. She has a heart of gold and uses it to love deeply. She is so much fun and so caring and I am in awe of how wise she is beyond her years. As we all know, Wyatt was diagnosed in 2007, Ryann was not born until 2011. Her entire life, well since she could understand, she has known that Wyatt has muscular dystrophy. We decided as a family to tell the kids (Wynston, Ryann, and Hayes) as much info as they needed about DMD when they were ready. Last year was the year to give more information than we really wanted to because things began to progress. That day we were at our camp and Ryann found out I have a blog and wanted to read it. Once she started reading it she couldn't stop.
In a way my heart hurt for her because throughout the blog there is so much information about DMD and so much heartache but she wanted to know more about our life since she doesn't get to see us everyday. Recently I asked her if she would want be part of the blog and of course she said yes.
Grab your tissues because you can feel the love she has for Wyatt....love that everyone hopes they can receive from others. It's a pure genuine unconditional love.
1. What did you think/feel when we told you that Wyatt wasn't going to walk and he would need a wheelchair?
I was never actually told that Wyatt was unable to walk anymore. I actually saw it on laughingthrutears.com and at that moment I realized something. I realized that he wouldn't be able to do all the things that I can do. I try to include or help him in every way possible because I know that some ways he will not be able to do things that he wants to do or even things that I can do.
2. What is the hardest thing about having a cousin in a wheelchair?
The hardest thing about having a cousin in a wheelchair is just thinking about bullies. You have real friends and then you have fake friends. I have been told before that it was stupid that I was raising money for Duchenne. And I don't want him to ever have to receive comments like that because that is what is so sad. I don't want him to go through that.
3. What scares you about having a cousin with Duchenne?
Something that is scary about having a cousin with Duchenne is that something bad can happen and it could change everything a lot. The thing about me is I'm very scared of change I like to have one routine and stick to that routine but that's not how life is something that's scary for me is not knowing what could happen next.
4. Do you think Wyatt feels left out sometimes and how do you try to include him if you think so?
Sometimes I definitely think he feels left out and I never want him to have to feel left out. Like it's me, Hayes, and Wynston are doing something and he can't do it. Sometimes I can just tell he's left out so I try and comfort him or help him join in anyway that he possibly can. I just feel so bad sometimes for him because I never want him to feel left out.
5. Wyatt gets mad sometimes, well a lot of times because of Duchenne...is this hard for you? What is the best thing to do when he gets mad?
When Wyatt gets mad I don't think anything of it. This is because I know it's not his fault. I know he is going through so much more than me and I can't even imagine what he must be going through. The best thing for me to do when Wyatt gets mad is let him talk or yell. If I try to calm him down too many times he just gets more mad so I might tell him to breathe but other then that I just let him talk.
6. If you had to explain Duchenne to someone what would you say?
I would explain Duchenne like this: Duchenne is something doctors have no cure for. Your muscles get weaker and weaker until you are unable to walk. It is something scary and the feelings of being a family member with someone you love who has Duchenne are unexplainable.
7. What are your hopes for Wyatt?
I have so many hopes for Wyatt but a big thing is that he keeps fighting against Duchenne and staying strong I never want him to give up at anything.
8. If you could tell Wyatt one thing what would you tell him?
One thing I always want Wyatt to remember is I am always here for him. Whenever he needs me I am there. No matter where I am I will always have time for Wyatt. That is so important for him to know. He can always count on me for everything I will ALWAYS be there. I love Wyatt so much!
Well if you can read this through your tears, I hope you take away that life with DMD not only affects the immediate family but even the extended family. Wyatt and our entire family is so blessed to have Ryann in our life. I can't imagine our life without her.
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