Monday, February 1, 2010

The Diagnosis is a Double-Edged Sword

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.


Shannon said...

oh angela, you're awesome! you are so amazing at putting your thoughts down, and you are so honest about them. you have welcomed so many of us on your journey as your travel down the road as a mom of 2 (almost 3) boys, and a mom of a son with disabilities. we are all here to give you the support you need, and we know that you are there to support us too. big hugs!!!!

Courtney said...

My cousin has a seven year old son on the spectrum and we've discussed this topic so frequently. On one hand, because Lucy's diagnosis is confirmed so scientifically, I don't have to fight to "prove" anything. I have answers, a relatively clear cut path. My cousin always has to fight with doctors. For years she has been fighting.

On the other side, though, I worry that because Lucy's diagnosis is so physically obvious that she will be judged on sight...and not allowed to prove her own worth. I guess that'll be my help open eyes and minds.

paula said...

Down two days and up the next. Make up your mind, will you? I am totally kidding!! :) Whatever you write I love to read. It is always thought provoking. I love your humor and esp the photos of those two sweet boys! And of that Matthew too. I have spent lots of time in meetings trying to figure out what had gone wrong with a student, which is sometimes very sad. At least you know. Love you, Mom

JILL said...

I hadn't thought of it from your point of view. My journey hasn't brought me many fights for my boy yet, aside from the one I am waging to avoid "that" label for as long as possible. And in many people's eyes, I am so far in denial I am hurting my child. I do not believe that. His therapists assure me he wouldn't receive any more services with a new label. For now. I have bridges ahead of me and I'll cross them in time.

But I never thought of you finding relief in the diagnosis. It makes perfect sense reading your words.

Guess I don't know which side of the fence truly has the greener grass, but I do know, we both need to keep on mowing for our children!

JILL again said...

Yes - next week lighten us up with a Not Me Monday! :-)

count it all joy said...

Hi Angela,

I've just caught up on the last few posts as I had computer "issues". I just wanted to say a couple of things to you...

You are not being negative by expressing these concerns. Your concerns are valid and are directed purely at being the best mother you can possibly be. Don't think for a moment that it is wrong to speak openly about these concerns. It would be more worrying if you were completely blase about it all.

I don't have a child with Down's Syndrome but my mum was the director of a home for children and adults with intellectual disabilities for about 15 years. One thing she's always said to me is that not to worry if I ever had a Down's syndrome baby. I hesitate to say this, because it sounds so condescending, but I think you know me well enough to know that isn't the case. Mum always maintained that of all the developmental disabilities a child could have, Down's Syndrome is in some ways the easiest (not that it is easy). Firstly, because the child doesn't compare himself to others. This is awesome! They think they are perfect, just as they are! In fact, Mum tells many stories of Down Syndrome children who feel sorry for the rest of us!

Secondly, compared to disabilities such as autism, emotionally, you get a wonderful feedback response from your child. "Those kids really know how to love!" she has said. I remember her describing one resident who had the most amazing faith in Jesus. It may have been slightly childlike, but it was absolutely sincere. Besides, isn't that what Jesus asks us to be "like little children"?

I'm not saying this to in anyway diminish or trivialise your very valid concerns, but only to encourage you. I'll be praying that you'll continue to feel the love of your wonderful friends and family, and that the next few weeks go as smoothly as possible. Meredy xo.

kristi said...

Oh and thanks for making me cry. Darn PMS.
By the time I got the diagnosis for autism, I had been fighting for awhile. And accepting.