Having a baby brings a lot of change to every parent’s life. 15 was a beautiful blue eyed healthy boy and yet I still cried as the overwhelming responsibility hit me a few weeks later. Hormones are racing and new moms are exhausted both physically and emotionally. I stared at him for hour’s wondering/worrying how his voice would sound, his laugh, what he would look like as he grew up, and if my love could be the bubble wrap to keep him safe.
He gives great challenge to my balance every single day right now as his own hormones are racing, he is defiant in looking for his own independence and I struggle to find the new boundary line for him that allows him that growth but also reels him in when I see trouble brewing. He is by far harder to deal with than Larkin or the twins right now but this too shall pass.
I am a woman of faith so it was very easy for me to embrace Larkin and love her as she was given to me. I have learned that lesson about all 4 of my children regardless of their issues. There have been moments of doubt, weakness, and fear but love and the primal mother instincts always come out on top.
Medical researchers are working on a new non-invasive pre-natal test that allows parents to find out in the earliest stages of pregnancy if a fetus has Trisomy 21 or, as it is more commonly known Down syndrome. My friend Gillian wrote about it and writing out my feelings for her to use in the article brought a lot to the surface.
I have the compassion to understand why others would want this test and be given a choice however I also know that being given the power of choice and knowledge is a burden and eventually mankind is going to have to realize we are not in control of anything in regard to our children.
What bothers me most is that a lot of medical society and misinformed people paint Down syndrome as something so awful that we should rid the world of it. My own personal experience has been nothing like that as my Reproductive Endocrinologist and my current and former Obstetrics Doctors encouraged us to have our child no matter what the pre-natal testing showed. All of them were affirming and loving that if a diagnosis of Down syndrome was indicated, we should not think of it as something horrible and that we would be ok.
I have found that my experience is the exception to the rule. My doctors are men of faith and they practice it as a way of life within their practice. They don’t have signs up that proselytize nor do they have religious imagery or publications out, it is simply a part of who they are and it comes out as naturally as breathing for them.
Larkin is now 5 and I think back to the earlier days/months/years where I would stare at her the same as I did with Chase and wonder/WORRY about her and how life would shape up and look for us. When we received the diagnosis of West Syndrome at 5 months and Lennox-Gastaut Syndrome at 19 months, I was scared out of my mind until I found my footing and began to work on minding my Q. I read posts on the Down syndrome forum and Epilepsy community I belong to, from new parents who are in that exact spot today as they absorb a diagnosis, seeking reassurance that they will get through this and there is an army of parents quick to respond YES YOU WILL!
You will get through this and so will your child.
Your child will be amazing and perfect. You will have a different definition of both.
Your child will communicate. You will have a different method and way of getting there
Your child will be mobile. You will have a different idea of what that is as your child shows you
Your child will be loved and so will you. That will also be a very different experience and I type this with the biggest smile on my face because Larkin has given me so much love and shown me how to love her and others in a way I never thought possible.
Your child will change your DNA and make you a more compassionate, loving, and accepting person. Your child will teach you how to be a fierce advocate, never take no for an answer, question everyone and everything, and start a fire of protection in your heart that burns to your toes. This comes to every parent from every child they have no matter if they are typical or not.
Science isn’t perfect and my daughter Larkin is proof. Her CVS test was incorrect and said she was a perfectly healthy girl. It flipped out the Geneticists because they had to come face to face with the fact that they were wrong. Testing isn’t all it’s cracked up to be and I once again remind that having the knowledge and power to make a choice is burdensome.
Children will be who they are as designed by God and how that looks may not be a parents dream. Time and unforeseen occurrences befall us all and just because we think a child is “perfect” at birth is no indicator of how that child will be as an adult.
If there was a test to know if a baby was going to be a bully, school dropout, murderer, mentally ill, blue collar worker, alcoholic, use drugs, insert whatever version of awful is for you … would you terminate a life because it didn’t fit your version of perfection?
I was calm cool and collected because I realized the gift I had in front of me even if most of society hasn’t.
Your child WILL be everything to you because ~ the greatest gifts in life are the ones we didn’t know we needed.
“Listen to the mustn’ts, child. Listen to the don’ts. Listen to the shouldn’ts, the impossibles, the won’ts. Listen to the never haves, then listen close to me… Anything can happen, child. Anything can be.” Shel Silverstein