The Indomitable Spirit

I’ve been thinking of my children a lot lately. My second child in particular.

Jeff was born with special needs. He was full term but with the physical abilities of a premature infant. With in the first 2 weeks of his life he was having seizures. There were constant tests: EEG’s, blood work, CT scans, etc.

As Jeff grew there were always challenges. We first started to recognise some psychological problems as an infant. We thought he was deaf. It turned out that he was tuning out the world due to all the trauma he was being subjected to. As he continued to grow, the psychological issues also grew. He would hear what was being said, but his ‘wiring’ would cross and he’d hear something completely different. He’d become angry and act out physically.

We were stationed in Germany in 1982. Jeff was around a year old. I got pregnant right away. At that time, when you became pregnant, you’d have to attend mandatory classes at the military hospital. There was a woman upstairs from us who provided child care. She’d need to give Jeff his seizure medication while he was there so we brought it with him. I warned her multiple times that she’d need to keep the medication up high since he loved the taste. She didn’t. After the meeting we went to pick up the boys. Jeff’s older brother came running up to us telling us that Jeff ate all his medicine. At first I just thought he meant that he took it as he should. My toddler corrected me and told me that Jeff ate ALL his medicine. The bottle was empty and the provider allowed him to sleep. My toddler also told me how Jeff took a nail and put it in a socket that same day. It pushed him across the room: the provider affirmed that this occurred then told me that he got back up again and was ‘fine’.

In the meanwhile, Jeff was in a coma. We rushed him to the base hospital. It was way to late to induce vomiting. We were told that the drug was well into his system. They told us to prepare for the worst and started to get the paperwork together to send us back to the states for his funeral. Jeff woke up. I cannot express the joy I had in taking my baby home! Note: the provider was a German citizen married to a military member. When we tried to report her, we were told that even though she was married to an American, nothing could be done since she wasn’t. I never believed it, but it is what I was told.

My ex was abusive. I know that while Jeff had a full set of problems, that was a huge contributing factor. In the days of Desert Storm, his father was one of the first to leave. Now, this was not in a battle context. He worked with the computers at a military airfield. Jeff knew that his father was in the safest place he could possibly be. That didn’t stop his little brain from thinking that his father was going to be killed. Jeff wanted to kill himself. He was 10 years old. His father was able to come home early, for multiple reasons, but mainly for Jeff.

With a special needs child you are always on the go. Always to the doctor, to the schools for IEP meetings, to argue and confront teachers who treat your child unfairly (sometimes even emotionally abusive). Sometimes confronting physicians; sometimes parents who thought your child could be contagious. There is always something that needs to be done for that child. Trying to help Jeff that things being said to him weren’t necessarily what he was hearing.

When he hit high school he was diagnosed as being bipolar. Finding the right combination of meds for all of his conditions was tricky at best. He’d start hiding his medication because he hated taking it. He refused to believe that he had a problem. Like a lot of other seizure and psychological medications, they also caused other side effects that were intolerable to him.

Jeff doesn’t talk to me anymore. The thing is, I never regret a single thing I did for him. Not one. He is my child and I’d do it all over again. I love him more than I can say. I always will.

I’d like to share my favorite story regarding Jeff. I worked as a hospice house LPN. Jeff waited outside while I went in to pick up my check. When I came out I saw him sitting on the curb talking to a family member of one of the patients. As I got closer I could see that the woman was crying. This is where I have to confess that I was thinking, aw shit, what’s he said? The woman stood up and told me what a wonderful and loving child I had. It seems he told her all about when he almost died in Germany. He told her how he saw his angel, how he saw me beside his bed, and his father flirting with the nurses at the nurses station. He reassured her in ways that I don’t think anyone else could. He also made her laugh when he mentioned his father!

Parents of special needs children, no matter what kind of disability, have a rough road to travel. There are tears, laughter, frustration, and even anger. Then, there is the inevitable guilt. Oh god the guilt! From the moment the child is first diagnosed with a disability till we finally understand that there are somethings we just can’t control.