We always need to consider the fact that Stephanie is in a wheelchair. This affects how we travel, where we can go, how we will get her to bathrooms, who will be around to help lift her etc.
Although she feeds herself and gets around in her power chair, we need to do all dressing, toileting, grooming and lifting. This became more of a challenge as my wife’s health deteriorated and she was unable to help Stephanie at all. It is difficult to balance work with providing care for Stephanie.
How are we going to fix things?
We can’t get up and go anywhere without planning a great deal in advance. When Sarah was young, it was easier to go places because I could just use changing rooms. The most difficult thing that we face right now going out is where am I going to change her? There is no place to change Sarah when we go to the park or go bowling, and she is too big now to lay her down on a bathroom floor on blankets because I can’t pick her up off the floor. How are we going fix things, you know? So I don’t quite know what we are going to do. I went to a parent support group meeting. Everyone is in the same boat. It’s a challenge. We’ve always included Sarah in everything we’ve done. You know, it’s not a matter of can she do it; it’s how can we get her to participate?
In home nursing
She requires nursing. We have people in and out of the house and it, and we have to have guidelines for them to follow because it can be very disruptive. It’s a big challenge to have people in your house all the time. And what I find is that there is not a lot of privacy. You know, it’s a matter of privacy and also confidentiality. We have had situations where people have left our home and talked about our family and that’s obnoxious because this is our home and everybody does things differently.
Everyone is just looking over your life with a fine toothed comb and finding every possible flaw with your child. It was heart wrenching to know that you’re going to go in the hospital and you’re not going to get any good news. No, you’re going to be judged. And you have to try to walk out after all the responsibility was put on your shoulders to try to make the situation better. It was very, very difficult. It was very stressful. I can remember saying to myself, “How much more can I do? There are not enough hours in the day. I’m not working. I don’t have a job. I have no life. I have no friends. Everything is Madison’s therapy and Madison’s care. We’re working day and night. We work from the moment that we get up to the moment that Madison goes to bed. How much more can I possibly take on?” And you know it would get to the point where I didn’t want to go to the hospital because I didn’t want to hear everything that was wrong.
The transition to college
Logistically, it’s taken at least two years to plan and prepare for Emily going away to college, in terms of investigating colleges, visiting colleges, doing the normal stuff that the student and parents will do. Then also planning what colleges will be accommodating. So, it’s definitely been a process on that level; it has been a process emotionally for sure and continues to be and will be for a while. I know I’ve been holding off experiencing all of those emotions and I know I don’t have much of a choice in this very soon. At the same time, I’ve been very focused on helping her achieve her dream, and it has been a dream for a number of years to go to college and to be a teacher. She has always loved school and learning. I’ve always loved being her advocate and helping her realize what she wants. It has been a gradual letting go process, although I’ve encouraged her to be independent from a very early age from letting her fall when she is getting up from the floor to a standing position and encouraging her to just be as independent, as resourceful as she possibly can be.
Thinking about my child’s future
Overall, the greatest stress is just the worry that I have about his future and his success in life. I just get concerned will he be able to be self sufficient some day when he’s an adult? Will he be able to get a job and provide for himself and succeed in the world, given the physical and the learning disabilities? That’s sort of the big overall worry. On a more day to day basis, there have been a lot of struggles with the school systems, making sure that his educational plan is in fact followed.
I wanted to give up and take a break
Emily’s life, in that she has had cerebral palsy and all the accompanying difficulties, my wife’s death, and my best friend’s death have increased my level of compassion and my level of awareness, sensitivity, empathy, and my level of patience more. It certainly has been a harrowing experience at times, and very scary and very difficult, and there have been times honestly were I wanted to give up and to take a break to wash my hands of being a parent. But I’ve been a single parent for ten years and my wife had cancer when we first met, and had cancer when Emily was born, and was undergoing treatment herself during that time. She became very, very sick and in 1996, for all intents and purposes, she was no longer able to function as a mother.
Finding activities for your child: A trial and error process
It’s difficult to find things that Ryan really enjoys and that are easy for him to master. I’m sure there are things out there, but we just haven’t hit upon them yet. We’ve been unsuccessful at teaching him how to swim, and I’ve taken him to four different swim instructors. Another problem is that with each attempt, if there’s a failure, it’s very difficult for him and his self esteem, and coupled with the fact that school, academically, certain areas are very challenging to him, it makes for a long day for him sometimes. We’re taking him to an occupational therapy clinic for a bike riding evaluation because it really bothers him that he hasn’t been able to ride a bike. He doesn’t like to draw because his right hand has partial paralysis, so we have to train him to be a lefty. That’s just been very hard. We started him with karate, and he liked it for a while. Then, when the karate got a little complicated and involved multiple steps, you could see the learning issues kicked in because he has difficulty with visual processing and spatial relations. We haven’t given up. We really want him to shine and find an activity he loves that he can do well at.
Cerebral palsy is on such a wide range. Ryan is considered to have cerebral palsy. He’s in a regular school setting, and he can walk and function well compared to some of the other children. One of the problems is, because there’s such a wide range in its issues, it’s hard to find where your child belongs with respect to activity. Ryan has had a difficult time playing regular organized sports because of his learning and his physical issues, but by the same token, he functions on a level that wouldn’t be suitable for some of the sports teams for the kids who are more disabled. He’s kind of in the middle and it’s hard to find a sport, camp, or anything for kids like that. Don’t get me wrong, I’m very grateful that he is not more severely affected, but it’s just an issue that’s come up.
Being his parents, we are the ones that are ultimately responsible for helping him to develop and move on from one developmental stage to another. And although there are a lot of people available to us to help us, we are still the ones ultimately making each decision that needs to be made along the way. There’s a lot of going inward and really evaluating our own resources, spirituality. And questioning can our family handle each step as we approach it? So I think it’s making the decisions, finding the right resources, and all the while sort of feeling like there’s no one person that kind of is following this whole thing with us. So you look for information, you look for people to help you make decisions, but ultimately you are the one responsible for making every decision that is made. And it feels a little awful at times a little overwhelming.
Financially it takes a huge toll on the house. It’s just huge. You’re paying for food every day. You know, we’re fortunate enough that we’re an “average Joe” family. But sometimes I think that people like us kind of get lost in the whole helping shuffle. Because my husband is employed full time and I work part time, you just deal with it.