Disclaimer: I realize my posts have been rather negative (or at least highly thought-provoking) lately. The three-part post was something that's been on my mind for awhile, as is this one. After this one, I hope to lighten it up a bit; thanks for sticking with me! :)
On April 24, 2008, at about 8:30 a.m., when Dr. Brody walked in the room and told me that he was 99% sure that my newborn Benjamin has Down syndrome, my world changed in a way I never thought it would.
Roughly two weeks later, we had an "official" diagnosis of Trisomy 21 from the geneticist. Meaning, they tested Benjamin's cells and found an extra 21st chromosome in all of them. (Well, they don't technically check all of them, but a sufficient amount to prove it scientifically...)
And though I never doubted it after Dr. Brody told me that morning, it was now confirmed.
No one could wish it away, though there were many who wanted so desperately to (including me).
No amount of praying or researching could remove my son's diagnosis.
No amount of medical interventions, therapies, diet changes, or holistic techniques can ever make my sweet Benjamin "normal."
And while that may sound depressing, now that I've accepted it, it's actually comforting that I have that official diagnosis.
Benjamin automatically qualifies for therapies and other medical necessities. I don't have to ever fight to get him these things. It's in his DNA. Literally.
As he grows older and invariably starts to look more like an individual with Down syndrome, there is a certain comfort in knowing that when strangers see him, they will know. They will know why he is speaking louder or why his speech sounds delayed. (Assuming these things happen.)
And the pressure is off. I don't have to worry if I'm praying enough for a cure. I don't have to worry that I'm not trying all the latest medical interventions. I can just deal with the diagnosis and do what is best for Benjamin without that pressure to fix him.
I have many friends who have children who are on the other side of this. They have children with less noticeable disabilities. Or ones that are harder to diagnosis. Mild cerebral palsy, fetal alcohol syndrome, autism, just to name a few.
On the human side, when their children stand out in a crowd, those parents have to deal with strangers' dirty looks and comments, as the strangers assume the behavior or activity they are viewing is a result of bad parenting or mere child misbehavior.
These parents have to fight, sometimes for years, to get their children diagnosed. They bounce around from one pediatrician and/or specialist to the next, just waiting to find the one who will find the answer or take them seriously.
Meanwhile, there are the costs of additional tests and therapists, just to find answers. I had my answers with a simple blood draw.
The mental anguish is the part I most am relieved about. I feel so bad for my friends who are always trying to find the perfect balance of medicines, therapies, etc. to make things optimal. Because with autism, for example, there is a wide spectrum (no pun intended) of measures to try. Sometimes these parents try and try and try before they get it right. And sometimes once something is right, their child(ren) outgrow that certain regiment, and they're back to square one.
I have heard several moms tell me that they know their child has autism or even CP, but the doctor does not. I can't imagine having to fight for just an answer of what is wrong, much less how to make things better.
There must always be a struggle between acceptance and action. Guilt about not doing more. Especially with all the talk about "curing" autism. Sigh.
As if being a parent isn't tough enough.
So while in a way, I am sad that my child has a diagnosis, I am ever-so happy that he does. Just makes things less complicated. And for those of you who do not, bless you. You are wonderful parents. Thank you for fighting for your children to be sure they get what they need. I am honored to call you my friends.