Guest: Donna Johnson
“That was a memorable day to me, for it made great changes in me. But, it is the same with any life. Imagine one selected day struck out of it and think how different it's course would have been. Pause, you who read this, and think for a long moment of the long chain of iron or gold, of thorns or flowers, that would never have bound you, but for the formation of the first link on that memorable day.” -Charles Dickens, Great Expectations
I am sure many of you have had days which stick out in your mind as an "epic" day. It is a moment in time that creates a ripple in the timeline of your life. A day which you can define as life changing. For me, one such day came on the morning of a beautiful Easter Sunday.
Katie was born the day before Easter and less than 24 hours after her birth we would hear the words, "we think your daughter has Down syndrome". These words would be the formation of the first link in my life to a world that I had not ever been a part of. Three and a half years have passed since those first words were spoken to me and the formation of the links keep on growing. I am changed in ways I never dreamed possible. My chains are definitely made up of gold and flowers, tulips if you please. (Now mind you I have loved tulips long before Welcome to Holland came out. If you have no clue as to what I am talking about, google the phrase Welcome to Holland.)
My husband, Kiley and I have been married for 16 years. We both work full time, me in oncology and my husband in prison management. We were married for 4 years before our son arrived. Blake is 12 and in the 7th grade. It would be 9 years after his birth that Katie would arrive, a surprise baby after a wonderful vacation. Blake and Katie share the same type of heart defect, Tetralogy of Fallot. When I heard Katie had a heart defect too, I was so upset to know that I had two heart babies. Never mind the Ds diagnosis. Katie would be shipped off to the NICU in Florida due to her CHD diagnosis. We stayed in the hospital for 6 weeks during this time dealing with breathing and feeding issues. Once we got home, we worked on keeping Katie healthy for her heart surgery. Blake underwent heart repair at 19 months in an emergency surgery--he was undiagnosed until two days before his surgery when he underwent a heart cath. Katie had her heart surgery at 5 months of age. It was nerve racking to have to see both of your children undergo such a complex procedure; they are both doing wonderfully now. Blake even plays football for his middle school team! Katie also was diagnosed with a form of seizures called Infantile Spasms at 8 months of age. Of everything we went through, this was by far the hardest thing for me to handle. After several months of nonstop seizures, they were able to get her seizures under control and she has been seizure free since. I am happy to report that health wise she is doing amazing now. Really, the biggest challenge we face is that the 9 year age difference in our children is like raising both of them as only children! Talk about having our work cut out for us. I would do it again in a heartbeat though. I just don't want another 9 year age gap between them!
I have been asked several times to describe to other people what it is like living with a child who has Ds. To be honest, some days are good, some are bad, just like it would be had I not had a child with special needs. The National Down Syndrome Congress promotes a slogan stating "More alike than different.". That is certainly the case in our lives. We do everything any other family would do. We go on vacations, Katie goes to school, she likes to play outside, she loves to watch tv, she has her favorite foods, and she loves music among many other things. In short, she is living a regular life. But what about all of those other things you ask--things such as therapists, support groups, IEP's, early intervention, and delays? Well yes, they are part of our everyday life too, but we are not defined by those things. I like to think of our lives as being enhanced by these things. Society's perception of Ds for the most part has been one that believes our children are the iron and chain links. That we are bound to a life of doom and gloom, that we and our children are suffering, that they are a burden to society. Have we become so selfish as a society that we would put less value on a child who has special needs? That their life is not worthy because they have a little extra genetic makeup? I know that we face many challenges ahead, but what family doesn't? Who is to say that I won't have more challenges in life with my "typical" child?
I find it a privilege that I am allowed to raise my two children. I look at my daughter and son daily knowing that I am blessed. I have learned more about life in these last three plus years than all my other years combined. You cannot see my thoughts or feel the emotions that come from my heart, but let me tell that it encompasses a very deep emotion within me. I can't imagine my children any other way, especially Katie having Down syndrome. I like to think that she is the best parts of me and her dad put together. I have never been more proud then to have her beside me as I navigate this life here on Earth.
Your links are what you make of them--will yours be made of gold and flowers or iron and thorns?
A word to any expectant mom or newly diagnosed family---love your child first. Down syndrome is a part of your child, but is not all of your child. You may have many thoughts and emotions in those first few days, weeks and months after you are told--"I think your child may have Down syndrome.....". It won't seem like it at the time, but everything will work itself out. You are not alone in this journey and everything you feel is normal. Again, love your child first, all the rest will fall into place. Katie and the rest of us Johnson's can attest to that!