When I began my blog I admitted that while people were often commenting on my positive outlook I am not always sailing through on a cloud of positivity. I struggle, I have days where the reality of the past five months sets in or the uncertainty of the future can seem daunting. I told myself that if I were going to write about our journey that 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 Kaleb was born and we had received the diagnosis of Down syndrome I had many emotions that 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 that I could not even bring myself to tell TJ, who was so strong and came to grips with Kaleb’s health issues and diagnosis quicker than I did. It was only after reading other mother’s 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 had experienced and the time it had taken 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 that there was hope ahead. So if me admitting my moments of weakness and my struggles can help a parent who has received a health diagnosis that they would not have wished for their child move forward, then I will gladly share my experiences.
I can honestly say that I have experienced those feelings of frustration, grief, and jealousy of others less and less often as others who have traveled this path have 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 OKWU and teach my courses and take Kaden to daycare 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 that he adores. I was walking back down the hall towards the exit and it happened. As I pasted by the nursery room I couldn’t help but think that if life had gone the way I anticipated, 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 crazy head of hair, those chubby cheeks, and those big eyes taking in the room. Instead he was at home with his very weak 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 and I couldn’t help but think of the other families that didn’t have to worry with these same issues.
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 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 his being gone on Tuesdays and had set in place for a home health nurse to come in on Tuesdays. One week from the day that they were set to begin we found out we would not be able to afford to stick with our plan. Just another reminder that life was not going the way I had planned.
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 big beautiful eyes that I love so much. That extra chromosome can be found in the little hands that he likes to place on my face or neck to reassure himself that 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 prematurity he wouldn’t even be here with us due to the blood flow issues that would 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 will cause extra obstacles for him but Kaleb has continued to show that 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 and 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 that I wouldn’t remove the extra chromosome if I could, primarily for the extra obstacles I know he will face. I can however tell you that I already find myself wondering if that extra chromosome was gone to what extent would it change the little 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 patch where my emotions attempt to get to me. There will be times that I hear of friends who have had a seemingly perfect pregnancy and delivery and it will give me a twinge of envy. I know I will continue to have moments of jealousy when those around me aren't filling their days with therapy/exercises and specialist visits. 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 and then tell them to shut it. Instead I will work to thank God for them and their children while giving thanks for my own two boys. While I admit that 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 have to 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 wouldn’t 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.
"The things that make me different are the things that make me." -Winnie the Pooh