I’ve often said that I’ve learned more from my kids than I could ever hope to teach. This is definitely true with The Older Boy, also known as John Edward. The Older Boy is sweet, quiet, laughs often, and loves electronics, video games, and music. He has always been a happy child, so much so that it seems unearthly. He is also mentally challenged, but this does not define him. He is more than a deficiency.
The first thing The Older Boy taught me was love. The love I have for my children never ceases to amaze me. The Husband and I had only been married a year and a half when John Edward was born. I was 21, and I knew nothing of motherhood–I was about to learn a lot very quickly. John Edward was delivered via emergency c-section, after his pulse dropped to zero…twice. He was severely wrapped in the umbilical cord, and immediately our family doctor was troubled. Something was different…it was his skull.
At 2 months old, six days after my 22nd birthday, The Older Boy had surgery on his skull to make an artificial soft spot, allowing room for his brain to grow (craniosynostosis on the sagittal sutures for any medical buffs out there). The second thing The Older Boy taught me was true fear. As much as I was terrified during the surgery, the terror greatly grew after the surgery, when the top of his head was missing skull. When your infant has very little protecting his brain, the possibility of injury greatly increases. Your fears differ from those of other new mothers; certain situations become life threatening (quite literally). It puts things in perspective.
When The Older Boy was 3, we realized he was not developing normally. For the next 5 years, we searched for a diagnosis. The third thing The Older Boy taught me was perseverance. We traveled all over, seeing every doctor that was recommended to us, searching for answers. Doctor after doctor would tell us, “Something’s wrong with your son, but I just don’t know what.” One specialist actually told me, “I’m sorry I can’t help, but it’s an interesting case. Let me know what you find out.” An interesting case?!? I almost came unglued. This was my child, not a case! Years were slipping away with no new information and very little progress was being made, yet we kept forging ahead. We worked long hours to make the money necessary to see every specialist recommended and to provide all therapy that was available. (We finally did find an amazing doctor–a neuro-psychologist–who has been extremely important in giving us information on John Edward. We still do not have a definitive diagnosis, and he says we may never have the answers I so desperately need.)
The fourth thing The Older Boy taught me was patience. This is valuable to any mother, kids can work your nerves. But, this is especially true if you have a child with some sort of disability. As much as I love John Edward, there were days when I felt my sanity was hanging in the balance. Here’s an example of one Saturday morning: The Husband was at work, and I was getting ready for the day. In the 20 minutes it took for me to shower and get dressed, The Older Boy emptied a complete container of toothpaste, let the sink fill until water overflowed to floor, kicked, punched, and bit his brother, and hit the wall with a toy until there was a hole the size of a small planet. It was time for a field trip to Mimi and Papa’s; I couldn’t take any more of it, and it was only 9am. On the way there, I stopped to get gas, when The Older Boy got out of the car and ran around the gas station parking lot. I had to develop patience; it was a survival skill. I either had to learn to deal with his behaviors, or I was going to end up in the mental ward.
During these years, John Edward had many therapies, and I’d meet many other moms with special needs kids. The fifth thing The Older Boy taught me was appreciation. Quite often, I’d be having a horrible day, we’d go to a therapy, and I’d see a really severely handicapped child. I’ve met moms who’ve never heard “I love you” from their autistic children. I’ve met elderly moms who worry about who will care for their adult children with Downs Syndrome in years to come. I’ve seen true exhaustion in their faces; I’ve seen true love in their eyes. John Edward shows me love, he is high functioning; I have hopes that he can be an independent adult. I am appreciative of this; I am not in the same situations as these exceptional mothers.
Have you ever had to fight for your child? I mean really fight? The sixth thing The Older Boy taught me was bravery. I’m very easily a pushover, and there have been times when I’ve had to fight with an agency to get my child the help he needs, especially our local school board. Because he does not have a definitive diagnosis, it has been very difficult to get John Edward help. It has taken 2 1/2 years to get through the government red tape to get this child special education services (meanwhile, he was failing school, and the school board kept pushing him through to the next grade). Even though I always had the support of the teachers and principals, I couldn’t get through the system. I am not an argumentative person; I shy from confrontation. But my child’s future was on the line. That changed me. Polite and cooperative at first, I could easily become an activist and quite assertive. (Doesn’t that sound better than raving lunatic?)
This entire journey has led me to the greatest lesson of all. The seventh thing The Older Boy taught me was this: I am not in control. Wow. Seems like common sense, right? It’s harder than you think. It wasn’t until I gave him to God that I finally relaxed. One day, during prayer, my arrogance became painfully clear. Who was I to think that I could somehow heal this beautiful soul? What was all of the worry for?
Where was my faith?
That was the root of the real problem. I didn’t have true faith. Once I realized that John Edward was truly in God’s hands, life got easier for me. And John Edward began to improve. I stopped fighting God’s will; I voluntarily gave Him the control. Before, I never allowed things to happen; I always forced them. I now humbled myself and realized how prideful I had been. I’m not in control of anything, I never really was.
So, now I lean back into my faith, pray for God’s will to be done, and take care of the responsibilities that I am given here in this life. I still watch out for his safety, I still search out answers, and I still fight for him when necessary. But I realize I have no control. I leave his fate in the hands of the Father, where it has belonged all along.