In our early marriage, my husband Lou and I had some idealistic views on what would and should happen in our life together. In the 70s, the earlier population explosion was put upon the Baby Boomers to fix, so our plan was to have no more than two children to aid in zero population growth.
We waited 5 years into marriage to start our family. The unspoken plan was to have a little boy or girl. He or she would, of course, be cute as a button and would play in our white picket fenced in yard with all his or her little friends till he or she was old enough to start baseball. Then he or she would, obviously, be a high achiever in school and be centre stage at music and art festivals.
I had a pretty normal pregnancy and other than giving birth 3 weeks early, all the plans were falling into place. Michael was born on July 1st, 1976 at 9:30pm. Upon leaving the delivery room, I was taken to the end of the hall to look out the window at the July 1st Canada Day fireworks, which made for a grand celebration! For being 3 weeks early, Michael was a healthy, strapping child, coming in, or should I say out, at 7 lbs 11 oz.
Quite a few of our friends were starting families at the same time, giving us many occasions for comparison. (What makes people do that?) Why wasn’t Mike holding his head up? Why wasn’t he sitting? Why wasn’t he crawling... and on and on. You get the picture.
At age one, we were sent to see a paediatrician in the big city for assessment. That was the day our “white picket fence plan” came to a crashing halt. The doctor, without batting an eye, told us that there were great facilities that would take Mike off our hands and, that it was too bad he hadn’t had a syndrome, such as Downs, so that they could have noticed it before birth so he could have been aborted. And, that was back in 1977!
After much testing Mike was given the vague label of having “microcephaly”, meaning, small brain. No cause, no reason, no fault, just simply, small brain. Mike would probably not walk, talk, have many basic functions and have a life expectancy of approximately 12 years.
For two days I cried... and cried and cried. Lou didn’t allow himself to cry, at least not in my presence. Then, I remember looking down at our beautiful perfect little child I was holding and realized that no doctor and no prognosis of his severe impairment could take away the joy that our little family could still have. No one could say this was an inferior baby!
Life with Mike
As life went on, there were many times of jealousy and times of poor-me. But very slowly and gradually there grew a grit and strength in both Lou and myself that nothing could shake.
Shortly after Mike’s diagnosis at age one, he started having short drop seizures where he would drop his head suddenly and it would be over. As he aged, the seizures intensified till he was crashing down on the ground and hitting his head on any hard obstacle that happened to be in his path. After years of blood samples to get the right med levels, a satisfactory concoction was decided on.
Some nights, before we were blessed with night-time television, were unbelievably hard! Through his life Mike has never slept well. We have been in a constant state of evaluation wondering if we would do this or give him that or change his diet to some newly touted miracle formula, maybe his nights would improve. But, at age 41, I don’t think that’s going to happen.
Defying the doctors’ predictions Mike can indeed walk, in fact, he can run, boy, can he run. One day when he was quite young, all bundled up in his winter parka, mitts and toque, he was playing in a small enclosure in our back yard. Mike had never kept mitts or toques on for long so I was gone for just a few minutes. When I noticed that 3 boards had been kicked out of the fence I knew we were in trouble. After frantically looking in the near vicinity, I called for help. The whole fire department came out and found him at dusk tramping through an open field far too far from home, bare hands and bare head, in the dead of winter! Yes, Mike can walk!
Mike has many autistic traits, making life interesting. He is extremely tactile sensitive; the texture of food in his mouth, a big hug, or a new pair of pants made from new material are just some examples that are intolerable to Mike. So, food must be puréed and if we’re very lucky, he’ll eat it. Boost is now our friend. We’ve also become used to him being the initiator of hugs, generally from the back, and, with the help of a good seamstress his pull-up pants are agreeable.
Mike had some excellent care givers early in his school programming years who spent many hours getting him toilet trained. Thank the Lord! His nights, however, have not been that successful.
Joy in the Midst
Over time, we have seen many friends come and go, sometimes because of our unusual circumstance. And, that’s okay. We’ve watched as similar aged children to Mike have grown into contributing adults and wondered what he would have been like. Now, friends our age are enjoying grandchildren and we’re again looking in from the outside. What if, what if....
Yet we have had a happy family life! Mike is a joy to everyone who knows him. If you have had the pleasure of being a care giver to him at his day program or when he’s at an Envision home three nights a week or have been a part of our small circle of family and friends, then you will know that Mike is an energetic, teasing, fun loving, trouble making, joyful young man. He is non-verbal, about 5 ft 10 inches, and thoroughly enjoys his terrible twos!
It’s been an interesting life, to say the least! But, when the rubber meets the road, it’s been a joyful life in spite of the things he can’t do, but because of the things he can.
I don’t know how high-needs families can survive without a loving God to rely on, to cry to, to scream to when things are tough. I can only speak from a lifetime of reliance on Him.
I remember like it was yesterday - how it felt when my large family would get together at my moms house. A house full of laughter, stories, singing and happiness - and our Mike would want nothing of it. I usually went downstairs with him to the quiet basement listening to everyone having a great time upstairs. Alone. I remember developing a strength and reliance on God that slowly gave me peace while being in the basement with our son. The basement wasn’t so bad. Grit in the making.
There have been lots of times that through a difficult situation God has shown me an alternate way of thinking. You can find humour when Mike makes a massive scene when he refuses to leave the pet store in the mall because he wants to watch the puppies longer. At the least, it makes for a good story later.
The grit and peace with life that we developed was certainly not achieved by our own doing, and the happiness that we have in our own little world would not be a reality without a God who gives us strength, patience, understanding and love, exactly when we need it.
To any young mother who is going through a tough time, whether it’s with a special needs child or just in a difficult situation, know that there are others who have walked your path. I can only recommend that you find your peace and joy in life by looking to the one who truly understands. A God who knows our situation better than we do ourselves.
Psalm 46:1 says that God is our refuge and strength and a very present help in times of trouble.
God bless you all,
About the Author:
Joyce, along with her husband Lou, are two of the most fun, good-humoured people you will ever meet! They have impacted the lives of hundreds of people over the years with their loving care of Michael, and also with the years they spent as youth leaders in their church. They have recently retired and have a "public library" on their yard.
If you would like to send Joyce a message, email firstname.lastname@example.org and put “Joyce” in the subject line.