Honestly, one doctor said to me after we found out she had brain damage, “Enjoy her now because when she gets older, things are going get really difficult.” So I felt like, “Huh? Enjoy her now?” But that wasn’t true. You know, I’m finding that every age has been great, every moment has been great, but I don’t know if I would have cherished every moment if he hadn’t said that to me. I know that sounds like the craziest thing to say, but that’s something that just stuck in my mind “Enjoy her now because when she gets older things are going be very difficult for you.”
The water wouldn’t stop
I’m sure you’ve heard this before. You’re so vigilant. You get all their paperwork together. You mail it to the doctors and they have it before you get there. You go assuming that you are going to be able to sit and discuss what was in the paperwork. Well, the doctor opened the paperwork in front of us. He hadn’t even looked at it. And then just simply looked at us and questioned why we would bother with anything like this for? That in his opinion, she would be a total vegetable and as we were getting up to leave, the tears came. And they weren’t crying tears; it was just that the water wouldn’t stop. It’s hard. Happy tears though. And I’m holding her hand and telling her, “all my strength.”
My body was numb
I didn’t research cerebral palsy until probably maybe a couple of months later–maybe when he was like six or seven months old. I think my body was still so numb from trying to get over the fact that Darius had this rare disease and that cerebral palsy was the secondary disease. It definitely takes a while. I would tell any parent, you just can’t do the research at first. It’s overwhelming. I mean, Darius is eight years old, and we’re now just catching up to certain things…The timing is definitely important because you want to find out about your kid’s situation, but you also want to be ready. You don’t want a relapse. You don’t want to fall back into that numb stage, that fetal stage where you can’t move forward.
We wanted everybody to just celebrate
We were shocked. Our initial thing was that we didn’t want to tell anyone right away because we wanted to enjoy the birth of the twins because we have gone through so much during the pregnancy that we wanted everybody just to celebrate. We didn’t want anybody treating her differently.
I don’t know if I had a specific reaction to the diagnosis necessarily. There was so much else going on. The diagnosis is just one piece of the puzzle, and in some ways was just a label. What we were dealing with was more important than the label. How she was doing, how she was developing, or how she wasn’t. Whether she was thriving or not, or whether she was growing was really more important than whatever label she was given.
Touch and go
There wasn’t any time to really sit back and reflect it was a very busy time. It was really touch and go for several months when she was in the hospital. Her mother and I would rotate shifts where I’d work one shift during the day and she another, and whenever we weren’t working, we were at the hospital.
Well, what’s cerebral palsy?
At the hospital we were at, the doctors pretty much told us on day three that there was a 95% chance that we were going to have a severely mentally and physically disabled kid. We didn’t know what that meant, and they handed us a book without any mention, and it said, “Living with children with cerebral palsy,” and we were like, “Well, what’s cerebral palsy?” We had no idea. When you read the book you’re in tears. At birth, he had a fractured skull. He had seizures and convulsions, but the seizures went away after about two and a half years. And then as he got older and more grown up, we knew that there was actually something there upstairs. Fortunately for us, given the amount of damage he got physically; it’s remarkable that he has the cognitive abilities that he does have. He’s 100% there upstairs. He’s actually age appropriate, other than the speed.
Leaving everything behind
After 22 years at a solid job–thank God I had bought my house already–I had to leave everything behind, resign from my job, buy a couple of plane tickets, and head out with my child because the doctors weren’t doing anything for him. When I got to Boston, within a matter of a like about three weeks, maybe a month, Kaleb was in intensive care. There he stayed for four months. That’s when they told me, “Well, this child has scoliosis.” I’m like, “What’s that? I’ve never heard of it.” Then they said he had a bleeding ulcer, acid reflux disease, a functional heart murmur, and cerebral palsy. The list went on and on.
It was upsetting because we didn’t know what the extent of the CP was. We didn’t know how much of an effect it would have on him. We really didn’t know anything at all about CP ourselves because we don’t have a medical background. As time went on, we realized there were delays. He didn’t walk until he was 18 months old, whereas my other three children walked when they were about a year. Other things that the other kids would be doing, he hadn’t caught up to yet. But, for the first few years of his life, we thought and we were hoping that the effects of Cerebral Palsy would be limited to his physical disabilities because on the grand scale of things, he was considered to have mild CP. We hoped that it wouldn’t affect him in other ways, but it has. As school progressed, we realize he had some learning issues with his physical issues.
The best words of advice we could have gotten
I was floored when Katie’s cerebral palsy was diagnosed over the phone. We had no idea what cerebral palsy was. I’m a social worker by trade. My husband is a science teacher, so I kind of feel like we have somewhat of a clue of what goes on in this world. So it was pretty devastating because here we have our first child, normal pregnancy, everything else…When we left the NICU, little did we know that this was coming down the pike so it was pretty scary. We immediately went to our pediatrician who that afternoon told us that this wasn’t a death sentence that Katie would not get any worse than she was at three months old. It’s just that she would have to do things a lot differently than the average kid. That was probably one of the best words of advice we could have gotten because when you hear any diagnosis, all you think of is “Oh my God. What’s going happen to my kid?”
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.
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.
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.
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 begin 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?