I still remember the day we heard that word… autism. I was numb. What does a mother do with a diagnosis that means there is no hope? My hopes and dreams sat shattered at my feet in a thousand pieces that could not be put back together…
Twenty-seven years ago, I was handed a baby that scored almost perfect on the APGAR test given to newborn babies. Weighing in at ten pounds and thirteen ounces, Kyle was the largest baby in the hospital. I looked down at his chubby face, and my heart felt something I had never felt in my twenty years of life; He was mine, and I would love him and protect him until the day I died.
The dreams I had for him were typical mom-dreams: He would go to school, have friends, play sports, go to college, get married, work, have kids….
The dreams changed to hopes after the autism-word-day. I hoped of Kyle just getting out of diapers, and by four-and-a-half, we finally accomplished this, and it was a BIG day! I hoped he would start talking in sentences, and for a few years, he did. Then Kyle’s speech disappeared and reappeared year to year. I hoped he would one day sleep all night and last year he finally started sleeping. Oh, what a glorious day that was!!!
When I walked down the aisle to marry Vance, and we held hands and said our vows, never in a million years would we have guessed that we would go through a life that would cause our lives to spin out of control. We planned to have a large family and live the typical large-family-life. We are large since we have seven kids now, and sometimes we are loud, but there is nothing ordinary about our family.
Our home was a constant revolving door two years ago, as we were trying to get a new plan in place to help us care for Kyle. Specialist, doctors, therapists, and support staff all came to help because we were burnt…burnt to a crisp. Kyle could spend days, nights and weeks just standing in his room pounding his walls for hours on end. He wasn’t eating and had lost eighty pounds. We had no answers and no solutions. We were exhausted beyond what seemed humanly possible.
Kyle has improved drastically over the last couple of years as we changed his diet and added in a nutritional component that helped heal his body. Also having a compassionate and patient support staff has improved the quality of his life immensely. He sleeps most nights and doesn’t bang his walls constantly. He goes for longs drives with his staff, and on good days he gets out of the van and has a picnic on the beach.
Can you imagine your big dream for your child at age twenty-seven, is that they will be able to go out for a drive and not have anxiety crawling through every cell of their body each day?
I still dream… that a doctor will see my book, Beauty from Ashes, or my blog and learn of Kyle’s struggles. Then they will call us and say they have the answers we are looking for. But if you look into the deepest part of my heart, where all my hopes, dream and prayers are piled up and held as sacred treasures, you still find a prayer waiting to come true. A prayer that was prayed thousands of times, God, please heal my son. This is my BIG dream.
My son has not fulfilled any of the dreams I had for him. But I still look up into his eyes and think… I will love you and protect you till the day I die!
I have the same heart most mothers have… even if my child has autism.
I imagine him one day saying those words I have never heard him say… I love you, Mom.
I have not lost my hope.
Believing and hoping