Do you ever feel like there are things you should be doing or are expected to be doing because your child may share the same diagnosis of others?
My son Oliver was diagnosed with Spina Bifida and we are in an amazing Facebook group of other families who share the same diagnosis.
Because of this, we are able to always reach out for tips and see what progress other children are making or what they might be going through at the moment.
There is a lot I find myself comparing my son’s own progress to, or feeling like I may not be doing enough for him.
For instance, therapy dogs. I always find families looking to gather information on this so they can adopt one for their son or daughter.
This is no cheap nor easy task, and was once a hope for us, but honestly only because I felt that this is what we were supposed to be doing for our son.
He is only five and uses his wheelchair independently at locations such as when he goes to school.
I could not fathom a reason why at such a young age, it would be beneficial, and maybe it would or wouldn’t be, but I looked into it either way.
We actually ended up spending a hefty amount for what we read was one of the best types of breed for children with disabilities, a goldendoodle.
Hypoallergenic and blessed with a calm temperament that was very easy to train.
Unfortunately for us we soon realized Oliver had a fear of dogs. And I am talking to the point where he would cry and not want any interaction with the little puppy.
Understandably, this puppy was a child too and only wanted love and someone to play with.
His licks and nibbles meant no harm to Oliver, but was just too much for him. He was overwhelmed and we adopted her out to a loving family.
This path was not for us, but I felt like I should have been doing it because it was something everyone else was looking into for their children.
Time has passed since the puppy event, but here I am again with a type of surgery I see many families getting for their young children.
A surgery that has great benefits and would lead to so much independence in the bathroom for them.
But it is no small feat, and would require some pretty serious recovery time.
Not only that, but I just feel like although it would create so much independence for him, I don’t know what he may think of the decision I made or did not make years down the road.
Years down the road when he may be intimate with someone and have to explain that because of this surgery, he caths himself out of his belly button instead of through the ‘normal’ genital location.
This is something that should definitely be discussed with the child’s physician, which I will do, but sometimes I feel like I would never be in the position if it was not something I felt like “I should be doing” for my son because everyone else is doing it for their own children with the same diagnosis.
And this may just be something I will learn comes with the diagnosis.
Because our children share the same diagnosis and side effects, things we go through are similar given the physicality of it all.