I had a mamma call me last night. She has a teeny weeny baby with Ds. I say teeny weeny, but he is 6 months! Any child younger than Ethan is considered teeny weeny in my book!
Long story short, she was very grateful for being given my info, but she does not want to be a member of our DSAH because she knows those with Ds range from mildly and to severely delayed.. and she doesn’t want to run into certain children because it will depress her. Stories (moments) like that always get to me because I am not there. MANY times I read about these moms whose child is 6months, 12 months… 18 months… 2 YEARS+ who just can’t get over the diagnosis. And I am not talking about “moments”, because we all have our personal moments, I am talking about those that curse Ds day in and day out.
Sometimes I feel real guilty when I see other moms struggle with the diagnosis, though there is absolutely no reason to feel guilty on my part. At times I even feel like I can’t relate to some of these moms as we differ in opinions about what we feel. In reality, nobody is wrong and nobody is right and no one is better than the other person.
I am one of those moms that wouldn’t take away Ethan’s Down syndrome even if I could. Of course I would want him to function at a level where he could care for himself, but I wouldn’t go as far as to completely change him by removing that extra chromosome. This is my Ethan, and the Ethan that I know and love. For all I know, without that extra chromosome Ethan could be a monster of a child!
Lately I have been reminded by several people about how calm I was almost a year ago when they first met me, as well as throughout the year during Ethan’s first year of life. Of course I was very emotional in the beginning as feelings and thoughts and dreams were being rearranged in my mind and heart, but overall I was done with the grieving process after a week. I stayed up many nights that first week. I sought out other parent’s kind words and wisdom. I did a lot of research, even before Ethan was born, just in case he indeed did have Ds. IF there was ONE thing I knew I had to do was come to terms with his diagnosis before I could possibly move forward.
I knew that dwelling on the what if’s and the oh no’s and why’s, was NOT going to get me anywhere. I had to reach for my big girl panties and get on with it. Besides, with two other children, a husband, and a household to take care of, there was no time to sit and cry.
I grieved alright, and I highly recommend we all grieve and we let it all out of our system, curse whoever you want, shake your fist at every person in sight! But don’t let it take over you.
I don’t ever want to look back and regret the way I’ve lived my life.
I am very happy in my life. I enjoy each day. I love my children more and more each day. Every day Ethan becomes more beautiful in my eyes.
I want other parents to feel the immense happiness that my heart feels. Maybe I take it so personal because they feel sadness over having a child just like mine. And I can’t find absolutely one thing wrong with my son. I look at his little head, run my fingers through his feathery hair, trace his eyes with my fingertips, draw circles on his rosy cheeks, still with my fingertips I continue down his little chest unto his Buddha belly, all the way down to his little pudgy feet and toes. Not ONE thing wrong do I find on that little boy.
He looks at me with his oh-so-ever curious eyes, and mischievous smile, his tiny shark teeth peeking through and I think , how could I EVER be depressed about my child!
So yes, this little ham of a boy, will not develop like his peers, yes he will be delayed and all that other stuff related to Down syndrome, but just because he has Down syndrome doesn’t mean he will never learn, or he will never talk or never walk, never dance, never BE! I cannot put limitations on him just because he has Ds! I cannot! And I will not!
Instead I will love him every day, I will encourage him every single day. We will work, we will push, we will cry!!!! But we will not give up and we will not be depressed! In return, Ethan will thrive to his fullest potential and I will eventually shout VICOTORY!