The Day I Imagined My Son’s Life Without Down Syndrome
When I began my blog I admitted that while people often comment on my positive outlook, I am not always sailing through on a cloud of positivity. I struggle. I have days when the reality of the past five months sets in or the uncertainty of the future seems daunting. I told myself if I was going to write about our journey, I would be open and honest, and that includes the hard moments — the moments, days or weeks when the emotions hit. Some might wonder why I would write and share those moments with people. Why I would open myself up to that level of vulnerability, especially when those who know me know how I value my independence and strength.
In those first few days after my son Kaleb was born and we received the diagnosis of Down syndrome, I had many emotions I was ashamed of feeling. “What loving person would ever have these feelings?” would often go through my head and result in me feeling even worse. They were feelings I could not even bring myself to tell my husband TJ, who came to grips with Kaleb’s health issues and diagnosis quicker than I did.
It was reading other mothers’ stories of receiving a diagnosis of Down syndrome that helped me forgive myself for having those feelings. I would read those accounts of mothers who admitted the feelings they experienced and the time it took them to accept. It helped me know I was not alone in my initial feelings and that while I couldn’t see past my current feelings, there was hope ahead. So if admitting my moments of weakness and my struggles can help a parent who has received a health diagnosis for their child move forward, then I will gladly share my experiences.
I can honestly say I have experienced those feelings of frustration, sadness and jealousy of others less and less often, as others who have traveled this path told me would happen. This week I did have one of the harder days I had experienced in a while. Tuesdays are one of my days to go to Oklahoma Wesleyan University and teach my courses and take our other son, Kaden, to day care while TJ works from home and cares for Kaleb. While dropping off Kaden I had one of these moments. I had just taken Kaden to his room and to his teacher he adores. I was walking back down the hall towards the exit, and it happened. As I passed by the nursery room, I couldn’t help but think that if things had gone differently, I would be dropping Kaleb off to this very room. I stopped for a moment and looked in the window and thought I would have been able to look in this very window and see him swing, play or sleep as I saw the other children doing. I could just picture him in there with that head of hair, those chubby cheeks and those big eyes taking in the room. Instead, he was at home with his weakened immune system, oxygen, feeding tube and monitor. Grief hit hard, and I struggled to see through my tears as I made my feet keep walking.
Those feelings of life being unfair held as I drove to campus and worked to let them go. Soon after I received a call from TJ telling me that our insurance did not help cover any home medical care as we had been led to believe. With TJ’s golf tournaments beginning, we had been preparing for him being gone on Tuesdays and had set in place a home health nurse to come in on those days. One week before the day this was set to begin, we found out we would not be able to afford to stick with our plan.
As I got in bed that night and closed my eyes, the image of Kaleb in that room was back. Amidst my emotions of the day, I had failed to see what I was beginning to understand in the quiet of the night. The Down syndrome and prematurity I had been so frustrated with were simply a part of Kaleb. That extra chromosome was a part of those irresistibly kissable cheeks and the beautiful eyes I love so much. That extra chromosome can be found in the little hands he likes to place on my face or neck to reassure himself I’m still holding him. I could be frustrated all I wanted that he had to have such a rough start to his life, but if it wasn’t for him being born prematurely, he might not even be here with us due to the blood flow issues that could have killed him. The thought of that is unbearable as I already cannot picture my world without him in it. I could choose to focus on that extra chromosome that can create extra obstacles for him, but Kaleb has continued to show he is writing his own rulebook and will do his own thing. He has continued to show his fight for life from the moment he was born.
I was then reminded of Amy Julia Becker’s book, “A Good and Perfect Gift.” In her book she refers to discussions with her husband asking the question, “If you could, would you take away that extra chromosome?” She admits in the beginning it was a yes. As her daughter Penny grew, she wasn’t so sure, and then it became a no. It became a no because that extra chromosome was a part of her. If it were to be taken away, what parts of Penny could potentially be gone as well? Would it change her smile or her laugh?
I’m not there yet to where I would say I wouldn’t remove the extra chromosome if I could for the extra obstacles he will face. I can, however, tell you I already find myself wondering if that extra chromosome was gone, to what extent would it change the baby boy who has captured my heart and has continued to amaze me with his strength and spunk.
I am human and I know there will continue to be rough patches when my emotions attempt to get to me. There will be times when I hear of friends who had a seemingly perfect pregnancy and delivery, and it will give me a twinge of envy. I will see friends with their kids and hear them go on about trying to juggle it all with all their activities, dinner parties, etc. and will fight the urge to let them in on our schedule. Instead, I will work to thank God for them and their children while giving thanks for my own two boys. While I admit I may at times have moments of jealousy when life feels difficult, I wouldn’t trade our family for anything.
I look back and see two versions of myself: the person I was before this journey and the person I have become after. We may have new bedtime routines that most do not have, such as the medical equipment cart we wheel from room to room as we move Kaleb, feeding him through a tube, or keeping track of his daily medications. However, it has opened up our family to communities of people, such as those in the special needs community, that we may not have met and gained a new respect for otherwise.
Sure, it is not the journey I anticipated, but I will lay in my bed and fall asleep listening to the baby monitor with sounds of the oxygen compressor helping Kaleb, and I will thank God for my two boys we have been blessed with, extra chromosome and all.
Follow this journey on Adventures, Reflections, and Life Lessons.
The Mighty is asking the following: What’s one thing you thought on the day of your or a loved one’s diagnosis that you later completely changed your mind about? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.
Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!
Amanda is a professor, writer, and founder of the nonprofit, Mighty Miracles Foundation. However, her favorite titles are wife and mother. She is the mother to two boys. Kaden, is a sports crazy, baseball obsessed, kind hearted, old soul who is six year old. Kaleb, is their ornery and stubborn three year old who has shown since birth he was writing his own rule book. Kaleb was born at 28 weeks at 2lb 2oz and a birth diagnosis of Down syndrome diagnosis. Since he has also added cerebral palsy to his medical file. Kaden teaches the Dickinsons new life lessons as he continues to grow and enter new stages in life. Not to be outdone Kaleb is determined to show life from a different perspective.
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