SHARE YOUR OWN STORY: EMAIL US EVALUATE THIS SITE

• From one step to the next
• Not a textbook baby
• Everything changed
• It wasn't fun being a parent
• Ok, what do we do about this now

From one step to the next

We didn’t have to start to making changes probably until the first year of life because in the first year of life everything was normal.  At about 9-14 months, we had to get a special bed so that he wouldn’t fall out of bed.  We had to add a ramp to our house because he doesn’t walk. Everything is a step, so you go from one step to the next step. You want to make it easier for you and also for your child to have a normal life and to have a healthy life, so the earlier you make those changes, the better. It’s hard when you have a child in a wheelchair and you have to carry him up and down fourteen steps every day.

-Mother

Top of Page

Not a textbook baby

I was constantly on the road of self-teaching. Trying to find the best way I could deal with what we had to deal with and what was going to work for us. I felt there was no one I could listen to; there was no one in our situation that I knew of. There was nobody else around, you know?  It was just one of those things that Madison wasn’t a textbook baby so you can just take that book and throw it out the window.

-Mother

Top of Page

Everything changed

Well, it changed everything. With her being born premature, my husband at the time just walked out. He left us there. He just wasn’t going to deal with either one of us because I was still sick from my pregnancy. I had to give up my career. I had to sell my house. I sold all my assets. I took him to court; I basically sued him for child support. And it was a very basic life. I didn’t want for anything. I didn’t need for anything. I just put shelter over our heads at my parents’ house. So we had to interrupt and disrupt their whole life. We were a total invasion on them. And all I did for the first three years was 24/7 Madison. I worked on her 14 hours a day.

- Mother

Top of Page

It wasn't fun being a parent

After the diagnosis, we basically spent a year just learning. For the first 14 months, straight from day one, my wife and I never got a good night sleep. The most we slept was four, maybe five hours, if that, and we each took turns. It was amazing. We never said, “It’s your turn,” or, “It’s my turn.” Because you’d just get up in the middle of the night. Ear infections were severe and constant. We tried sleeping him upside-down, sideways, and forward rocking, tilted, but his ears went to his nose and his nose went to his ears. So, the first 14 months were actually horrible. It wasn’t fun being a parent. There actually was nothing fun about it at all. It wasn’t until about the 15th month when things started to get better, and we saw that there was something there, we just didn’t know what.

-Father

Top of Page

Ok, what do we do about this now?

Initially, of course, we were really surprised and very saddened.  But you know, those are the feelings that you have, but you also have to just kind of launch yourself into the next steps of “Ok, what do we do about this now?” So I think the first part of the process was getting the leg braces for him to wear so that he could begun to take those initial steps and begin to get around. We began to find ourselves working with an early education program and people to make the braces. So all of a sudden we found ourselves using resources in the town that we never really anticipated having to use. We certainly found everybody to be very helpful, but there was sadness with all of that. Also a kind of worry regarding how we were going to make our way one step to another?  What is this going to entail? How is Justin going to cope with this?

-Mother

TOP OF PAGE