Sometimes it’s just appears UNFAIR

Wow...last night was a tough one. After leaving the boys room I told Patrick...oh my God that was sad and depressing and frustrating all at the same time. After spending an entire week with Wynston in Disney I guess I thought the one-on-one time would help his pre-teen brain feel the immense love I have for him and his true self. Well, last night I realized that wasn’t necessarily true. Wynston had been a little out of sorts that afternoon and when it was time for bed he began to cry. As he was crying I asked him what was going on and he said that Wyatt was my favorite and it’s unfair that he gets everything. I was dumbfounded. I couldn’t believe that he would think that, especially after his special trip. I have always recognized that being the sibling of a special needs child is hard...Wynston’s worry and comparison of the attention and love his brother receives seems all encompassing at times. Patrick and I have made a conscious effort to make sure Wynston feels the same love as his brother but perception is in the eye of the beholder.

A little history here, we recently talked about purchasing Wyatt an electric wheelchair so things would be a bit easier for him around the house and apparently this is where the comparison began. My little guy who pretty much has all of the modes of transportation in the garage that an 11 year old would need was jealous that his brother would get a wheelchair. You see Wynston is a child who is on the go all the time. He is either on a bike or skateboard with his friends all over the neighborhood and that means his things break...ALL the time. At the time this happened his bike was in the garage waiting to be fixed so the feeling of Wyatt “getting” something new seemed unfair. I couldn’t believe that he would be jealous of a wheelchair and before I could say something to him Wyatt spoke up. He said, “Wynston do you think I want to need an electric wheelchair. My arms are getting tired using my old wheelchair.” My heart started to hurt and I thought Wynston was beginning to understand but then he said…”if your arms don’t work how are you going to feed yourself.” Wyatt and I sat there in shock...me because I thought we had explained the progression of DMD enough that Wynston understood it and Wyatt because he was sad to talk about the future.

I looked at Wynston with sadness and then he said “I guess mom is going to have to help you and if you have to stay here with mom forever they probably won’t charge you rent but I bet they will charge me.” I kind of giggled at the rent comment but my heart ached. Why is it at night the hard conversations happen?

Wyatt was lying on the bed crying, saying “I don’t want to think about this right now. Wynston why don’t you understand what is happening to me.” As you can imagine Wynston took a look at both Wyatt and I and then felt terrible. He hugged us both with tears in his eyes. Wyatt latched on to him like Wynston was his life line. Wynston wasn’t trying to hurt Wyatt and I with his questions, I think he truly doesn’t understand the full progression of DMD and he doesn’t want to face the fact that his brother is changing and that it is unfair his brother isn’t like everyone else.

As I watched this my heart was refilling while my brain was on overdrive. How did I miss this? How have I never discussed the true future with the boys? I guess because it is hard to think about it even for me, and maybe I thought they couldn’t handle it. Well, now I see not talking to them about it openly is not fair to them. But it hurts and it’s not fair that I have to talk to my kids about a future that is full of sadness and loss but it’s also not fair to not prepare them the best way we can. So together Patrick and I have decided we are going to talk about it more together as a family so we are all ready for changes that are coming.

We have since talked to Wynston about wants and needs and that getting a bike fixed is a want while purchasing a wheelchair is a need. We are trying to have him understand that fair is making sure both him and Wyatt have what they need all the time. And if you are wondering yes we have since gotten Wynston’s bike fixed and he is now back ratting the neighborhood with his friends, even though Wyatt thinks that freedom is a bit unfair but understands life isn’t really fair we just have to make the best of what we have.