I feel compelled to tell you about the days following Carsten’s birth. These were the days that scotch tape truly didn’t hold me together. I was literally falling apart at my seams. I had tears, grief, sadness, and fear seeping out of me. I was paralyzed. I felt like I was living in a parallel universe. One where my realities were vastly different than everyone else’s. For months really, I lived in this space. I didn’t feel like I belonged in our world anymore, so I learned how to breath in my new space. Day by day I slowly started to reenter “reality”, but I could only survive in that space for short periods of time. It was like trying to breath under water. I couldn’t do it, so the most I could hope for was to hold my breath for as long as possible before I came back up to my world. Eventually my world morphed into the real world, but I vowed that I never wanted another new mom to feel the way I felt. I wanted to shine a light on my world to show everyone how beautiful it really was. I remember thinking, “If people only knew how awesome Carsten is, there would be a waiting list to get a baby with Down syndrome!” While society isn’t there yet, we are making progress. If this reaches one new mom or dad, and starts to shine light into their new world, I will be happy…not satisfied, but happy.
I have said it before that the biggest difference when you have a baby with Down syndrome is that you see all of the hurdles and struggles your baby will face for the rest of his life. I will give you that most of these hurdles never end up coming to life, but in the moment they are as real as you and I. During a “typical” child birth, they put your baby in your arms, and you start dreaming big. Your child will be the next president of the United States! No on looks at their newborn baby, turns to their husband and says, “Oh goodness dear, we have a high school drop out on our hands. He live with us until he is 32 years old.” It doesn’t happen!!! So when you are told your baby has Down syndrome, whether prenatally or after birth, all you see are dark looming shadows. Almost instantaneously you see the faceless silhouettes of the bullies you are sure you will have to beat down for calling your son the “r” word. You worry about his health. Who will be his friends? How will your other children handle “this”? What kind of job will he have? Will he graduate from high school? Is college even a possibility? Will I spend the rest of my life fighting people who have disrespected him? Will he drive? Will he ever know the love and pride of having his own family and wife? Will we ever function like a normal family ever again? Will I ever have a true conversation with him? How will I ever be able to financially support him? Will I know the pain and despair that comes from having to bury one of your own children?
Now I will grant you that most of my fears or perceived hurdles came out of sheer ignorance. Some of the questions above, I still don’t have the answers too. I just now realize how beautiful the unknown is. I appreciate living in the now. These fears and dark shadows don’t wake me up in the middle of the night anymore. Mostly I have Carsten himself to thank for that. I know that Carsten is exactly who he is meant to be. I know that whatever Carsten sets his mind to he will accomplish. I know now that people are drawn to him. He has an indescribable magnetism that draws good people in, and draws good things out of them. For those that allow themselves to be taken in by Carsten’s charms, they will never be the same person for it.
I also know that Carsten is a blessing to our family. He has never been nor will he ever be a burden. I am not sure what we did to deserve such a loving gift into our family, but I wouldn’t give Carsten’s extra chromosome back for a million dollars! If they came out with a “miracle cure” for Down syndrome tomorrow, I would politely refuse. I buried the Carsten I thought I was going to have long ago, and I never, never, never want to live my life without the Carsten that was given to me…..all 47 chromosomes of him!
I have often wondered if I could go back and change anything in my life, would I? No, I wouldn’t. I do wish that the me now could have followed those doctors into my hospital room on May 31, 2006. I would stand to the right of the 28 year old me clutching her new baby in her arms with fear spreading through her body. When the first doctor asked, “Has anyone expressed the concerns we have about your baby?” I would put my arm on my 28 year old self, smile at the doctor politely, and say,”Yes! Isn’t it wonderful?” After the next doctor rattled off the scary list of medical issues that may come, I would say, “Please leave. You are scaring this woman half to death. 90% of what you just said will never happen. This child is far more than what you can look up in you medical books. You are setting the bar for how this woman thinks everyone is going to treat her from here on out, and you are setting a bad example.” I would then follow that line of doctors right out of my hospital room. Before I left I would turn around and look at the scared, sobbing, sad 28 year old me. I would say with a reassuring smile, “You have a beautiful baby boy inside and out! Congratulations! Take him home, and love him. Girl, you got this! You so got this!” Maybe I would blow a kiss to MJ on the way out too.;)