Daniel - A Mother's Thoughts

Hi, my name is Sue, and I'm the mother of a child with Kabuki. Our family includes my husband Tony and me, 14-year-old daughter Stefanie, and 11-year-old son Daniel who was diagnosed with Kabuki when a year old. I started out to write a typical family history, but while meandering down memory lane, I realized that what stands out most is not the numerous medical challenges we've faced, but the emotional roller coaster we've been on - and felt this is probably universal to us all.

Daniel’s early years were full of emergency trips to hospitals, visits from therapists, and lots of appointments with various doctors and specialists. Every little step forward took such enormous effort, and there were so many obstacles to overcome. I was ecstatic when he took his first step, a wreck when he had his first seizure. It was an overwhelming time emotionally. Not only did I have to come to terms with the fact I had a special-needs child, but also being suddenly plunged into a world of “experts”. Everyone had programs and therapies for me to do with Daniel. With another child to look after, there just didn’t seem to be enough hours in the day!

Welcome to the world of 'Self Doubt--Compromise--Guilt'. Little did I know these three words were to follow me through life. As parents, we want to do the absolute best for our kids. I would have loved following every therapist's program to the letter and providing endless hours of stimulation to Daniel, all the while spending unlimited quality time with my daughter and husband, maybe even sneak a little time in there for myself! Guess what? It was just NOT possible, so I compromised and did what I could, and I felt guilty, guilty, guilty!

Then came the school years. Daniel, now in 6th grade, attends a regular school and follows his Individualized Education Program (IEP) with a full time aide. He has made some amazing progress, especially this year as his speech is finally coming out. I have had such moments of joy when he comes home, proudly displaying his work. I'm thrilled when he gains new abilities, but there are also times when I experience great doubt. He is integrated, but the level of integration has declined over the years. In Kindergarten, Daniel experienced full/all-day integration (inclusion). Now, as a 6th grader, the bulk of each day is spent alone with his aide(s), only joining his classmates for an hour in the morning, lunch, and recess. We are seeking more opportunities for him to be with his peers, but again, it’s a compromise. I wish Daniel could spend all day with his classmates, but he requires intense one-on-one instruction. I worry about his isolation. Should I insist he be in the classroom? How can I make a little boy who likes 'Sesame Street' videos fit in with kids who are into The Matrix? I should know the answers! Am I making the right choices for him? Will he suffer in the future because of me? Self-doubt - compromise - guilt!

We are currently entering the teenage years with the challenge puberty brings. Behavior issues are coming to the forefront as Daniel tries to assert his independence and demand our attention in the way that’s guaranteed to work – by misbehaving. I am forced to be tougher and stricter than I’d like. I have to leave him out of certain activities that he could, potentially, spoil. It wouldn't be fair for Stefanie to give up things she’d like to do because her brother isn't able to handle it. I’ve taken a part time job that lets me work in my home, but it means a few evenings away at meetings. Sometimes I have work to finish when Daniel returns from school, which he definitely does not like! Always compromising, never giving everybody everything they’d like. Constantly questioning myself and feeling guilty!

Now I face the prospect of Daniel’s future as an adult and, I tell you, I am scared. How will I ever be able to let go and trust his care to others? I know in my head that I must push for his independence, that I won’t be here for him forever, but my heart just crumbles at the thought of him alone out there in the big bad world. Then, as I’ve done in the past - and will continue to do in the future - I have a little cry, shake myself and say “Come on Sue, Buck Up and just get on with it!"

We're in uncharted territory; there is no manual with answers and no map to guide the journey. I'll make some wrong turns along the way, and guilt will do its best to kick in. I need to remember that mistakes are inevitable, understandable, fixable, and forgivable. I always have, and always will, do what's best for Daniel and our family. My motto should be: Trust myself, know that my best effort is more than 'good enough' - and always will be!

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