Ioana is off to physical therapy again in Aurora to ride on the FES bike. Instead of riding my bike, I’m taking the opportunity to get out a blog post.
She is doing phenomenally well with the bike now. Remember reading about how she couldn’t tolerate the lowest level of stimulation when we began doing electrical stimulation? Ioana has progressed to the point where she is doing e-stim at home on both of her quadriceps and also on her glute musculature. When she rides the bike in Aurora twice a week she is now at the maximum amount of electrical stimulation. She is increasing her power output and her speed to continue to develop her leg and hip strength. A doctor came by to take a peek in the gym last week to see who was using the FES bike. She was introduced to Ioana and commented that she thought Ioana was the first kid with CP to be using the bike at their facility. It ends up that the doctor also has a spinal cord injury and after rehabbing with an FES bike at Craig Hospital she was instrumental in getting an FES bike into The Children’s Hospital here in Denver.
But right now Ioana is praying and trying to come to a decision regarding custom made ankle foot orthotics. For over a month now she has been using carbon fiber orthotic or braces that insert into her shoe and fasten below the knee. They have made a world of difference for her in how she walks. The advantages are that she can walk much faster and does not tire as quickly. They also provide significant support to her knees. There is a concern that over time she may have deterioration of her left knee because she favors it over her right and ends up putting all of her support on it instead of standing evenly on both legs.
But even though she sees the difference she is concerned about using them in Romania, particularly in the summertime. This first came up a few weeks ago when we inquired about ordering a custom pair for her. She looked at us when we asked her about it and shrugging her shoulders she replied “I don’t know if I would wear them in the summertime.” When we delved deeper into the subject she sat down and explained that it is very hard for her when she goes out in public. She feels as if everyone already looks at her, and kids will sometimes tease her and call her names. “I already get teased and made fun of. I don’t want one more thing that people will tease me about” she said through tears.
Yesterday we had an appointment to meet with a representative from the company that makes the orthotics regarding a custom fit. Sunday night I brought the subject up again with Ioana to discuss together. As she sat at the table it looked like all the spirit had been taken out of her in order to discuss the topic. For me as an adult, I can see the benefit that this will give her as she grows older and is an adult herself. And while she will turn 19 in two weeks, she is still very much a kid in many ways. Of course, it is that awkward age of transforming from a teenager to an adult. You want to be an adult but not necessarily take on the decisions of an adult.
Pam, being the insightful teacher and parent that she is got a decision making diagram and began working with Ioana on how to come to a good decision in this. This is a brand new concept. Ioana isn’t entirely comfortable taking this on herself. We’re helping her in presenting facts and information but this is ultimately her decision, which is new territory for her. Her foster parents in Romania have told her the same thing. We’ve had many in-depth, long conversations about the implications both negative and positive.
As I sat on the floor with her in her room I told her that I thought I knew what was going on in her head. “Ioana, I know the most important thing in the world for you is to be loved and to have people like you. That matters more to you than being strong in your body or your legs. But I know it is hard to make a decision between having a happy heart and having a healthy body. Perhaps there is a compromise somewhere.” I asked if her if I was spot on and she said that I’d hit the nail on the head. She is so much like me, it is scary sometimes.
These aren’t the easiest days for Ioana right now. We hold her accountable and make her work hard; harder than she has probably ever worked before in her life. We love her like she is our own child and want to be able to help her in the best ways that we can. But each week brings about new layers of emotional pain. Much of what has happened to her in her life is coming up like a wave that is pounding her against the surf. I know that at times she feels like she can’t even breathe and she has confided that with some memories it is very painful to deal with. My heart breaks when she tells us that, but I’m thankful that we have resources and people to help her work through all of her tough decisions and with the pain of her past.
Ioana asked a lot of good questions yesterday about the orthotics and made notes of what she was told. We’ve told her to take the next two weeks to think about it, pray about it and come to a decision. It’s important that she can move past the emotions and come to a decision that she is 100% confident and sure about. All of us, the therapists included have told her that no matter what she decides we will stand behind her and move on with a plan whatever that might be.
Yesterday, I asked Ioana if it was okay to share her struggle with all of you. She told me that, yes, it is fine. “They need to know about the tough days as well as the good ones. But, Tata Matt, I’m afraid I’ll decide to get the braces and then when I’m in Romania the first time that someone makes fun of me I don’t know what I’ll do.”
“Ioana”, I said, “that is when you go home, you pray and you find your strength in Jesus. He is the one person that will always be there for you and only He can give you the strength that you will need to deal with that time.”
I can do all things through Him who strengthens me. Philippians 4:13