It is hard. I cannot lie. It is hard dealing with SMA. It is hard not knowing at all what your child is going through. It is hard “not getting it” over and over again. We are so committed to our kids, but we cannot always help them ourselves. We cannot always be the shoulder they need to cry on, no matter how close of a relationship we have with them.
It is easy as a parent to go online and have support from other parents. It is not as easy for our kids to have that same support from the SMA community. It is so beneficial for our kids to be able to talk to one another and have SMA friends that are sharing similar experiences.
My daughter, Leah, is happily ensconced in the tween years (mom, not so much lol). I know what it is like to be an 11-year-old girl, but I have no idea what it is like to be an 11-year-old girl with SMA. There are questions I cannot answer and there are problems I cannot solve.
Leah has been blessed to find an SMA mentor/role model, an adult with SMA who is everything she wants to be when she grows up. Someone who has a child, a college degree, a full-time job. All the things she sees are 100% possible. Lately she has been connecting with her on an almost daily basis.
As her body starts changing she has someone she can talk to who has gone through things with which I can only try to help. Also, we are at a time where friendships are evolving as kids are more independent and more likely to have sleepovers and spend more time “hanging out.” There’s an isolation when friends are doing things without her because she can’t be easily included (parents can’t just swing by and pick her up or easily keep her overnight). Someone who has been through it can give her more realistic ideas and share with her what can be done, or if needed, be that person who can relate to the hard times.
Being able to be open and honest with someone who has gone through similar problems is so helpful for our kids. Since we don’t always “get it,” it’s nice for them to have someone who does. There are a lot of older teens and adults always willing to talk to the younger kids and offer advice. Don’t be afraid to ask them.
Traveling with a child is never easy. Traveling with a child in a wheelchair is an extra challenge. We have always been a traveling family, so when our daughter Leah was diagnosed we were both hopeful and determined that it wouldn’t hold us back.
I like to think we’re a well-oiled machine in our house every morning, but I may be delusional. Every morning is started with the best intentions, which quickly evaporate into controlled chaos, and ends with a sprint through the door, praying we didn’t forget anything.
