A friend asked me to write a short piece about our family. In the days of reflection and prayer leading to writing this, I am convinced that this could be written by anyone; simply insert different circumstances. I would say that our family is rather typical, but I’m afraid I don’t know what that even means anymore.
I am the wife of a pastor who is rather well-known where we live. This seems quite humorous to me at times because I didn’t even become a Christian until I was 27 and now I’m a “pastor’s wife.” We have three awesome kids who have both enriched and stretched us as individuals and as a couple.
Nate came along twelve years ago and less than two years later he became a big brother to Hannah. I had heard that the jump from one to two kids was harrowing, but I found it quite easy really. Nate was content doing the same thing over and over and over again. He was happy listening to music all day long while drumming on his head or playing games on the computer. This made attending to a newborn much easier.
At age two-and-a-half, however, we found out that Nate had autism. Although I had suspected this, the reality of it was something else entirely. Because I had no clue what to do, I simply rolled up my sleeves and got started “recovering” him.
Fourteen months later, after putting him on a very strict diet and sending him to a special preschool, his self-stimulating behavior finally ceased. Soon he was no longer able to do the incredible things with his brain that he had been doing and his desire to drum all the time ended. In essence, we were gradually getting a different kid than the one we had known for his first four years.
Now he was an outgoing, bright, bubbly young man. “I” had recovered him. “I” had worked so hard for over two years to make sure his diet was strict yet flexible enough to have treats at every birthday party he attended. After two years of individualized education plans (IEP), Nate was about to begin kindergarten as an “undesignated” or non-special needs kid! “I” had done it!!!
Ten days after Nate began kindergarten, we found out that our special journey was not over. I was pregnant with my youngest, Seth. Seth had Down syndrome. I couldn’t believe that I had worked so hard to recover Nate from autism only to be delivered a life sentence; there was no “recovering” this. I had already spent two years with Nate going to a school separated from all our friends. The light at the end of my tunnel suddenly disappeared as the realization of what this meant sunk in. “I” would no longer be able to manipulate the situation. I needed Jesus in a way that I never had before. I finally understood that only by God’s grace had I been able to get as far as I had.
It hasn’t been easy and there have been days that I didn’t think I could keep going. Seth is the sweetest soul. He is funny, engaging, loving, and everyone’s number one cheerleader. He is also impulsive, a destroyer of everything, loud, and has kept me on high alert for the better part of seven years. He has shaped and molded my older kids’ hearts in ways that have helped make them remarkably compassionate and gentle. He has taught us about the simplicity of loving each other well. While we all realize that, in many ways, we haven’t been able to do “typical family” things because he cannot join in, we fully understand that our lives are exponentially richer because of him.
Nate recently had to write a poem for school. He chose to write about Seth. I think it pretty much sums up how our family has changed because of Seth. (Please note that some of it is tongue in cheek.) I agree with the last stanza: fast forward seven years, and I can honestly say I wouldn’t change a thing.
SETH – A POEM
‘Twas the night after Christmas
In the year 2008
A favorite boy was replaced
And his name was Nate
Seth was born
As cute as could be
Born with Down syndrome
He was much more “special” than me
All of the attention was on him
And very little on me
I felt so alone
Just another mouth to feed
As the years passed by
Seth changed our home
Yes, he was a snuggler
But he couldn’t be left alone
He’d destroy our things
Or he’d run away
He’d hit, pinch, or bite
And not know what to say
I couldn’t help but smile
When he would look up at me
Because I am his big brother
And that is plain to see
Now seven years later
I can honestly say
I would not have it
Any other way
As I said at the beginning, I am convinced that anyone could have written this. I have a dear friend who has lost a child to a congenital heart defect and two other friends who have had multiple open-heart surgeries. I have a colleague who, as a single woman, stepped in and adopted a young boy through the foster care system. And there’s my classmate from high school whose only child has hydrocephalus and just had another surgery to fix her shunt. And from afar, I have watched as a friend helps her teenage son battle brain cancer. In these years of being a “special-needs mom” I have come to understand that we all have something. And apart from God’s grace and mercy, there isn’t enough strength in any one of us to journey through it alone.