Tuesday, April 3, 2012

Worthy and Wonderful

I blame The Hunger Games. I took a break from my blog- and practically from my life- to read a three part series of books. Really, it's just an excuse, because actually reading The Hunger Games trilogy took less than a week out of my life. I've found myself resistant to putting words to a page lately. Partly because I feel like nothing out of the ordinary is happening, but partly because I feel a current of emotions bubbling under the surface and am unsure of what form they'll take if I truly write a stream of consciousness.

I'll start with the simple:  A friend called yesterday and said that she was going to head up to a local mountain range to find snow with her son and would we like to join them. I wavered. Elijah had a Physical Therapy appointment, I had proposals to write, a house to clean up, papers to organize.  Then I thought about the last time I was truly spontaneous- not just the easy spontaneity like not doing bills and watching TV instead, but the kind of spontaneity that requires truly throwing caution to the wind. So, I said yes. I canceled our day, frantically gathered up down jackets, snow pants, mittens, gloves, boots, snacks, toys, diapers, wipes and drinks and threw them all in the back of the car. Our friends arrived and together we loaded more into the car: a toboggan, a plastic sled, snow shoes for me, more down gear, rain pants, a set of snowball makers, more drinks and snacks and then we were on our way!  It took us about an hour and a half to reach the Mt. Baldy Visitor Center, which was closed.  The sight of a woman in tank top walking along the side of the road, followed by a guy who literally had no shirt on, did not bode well for any actual snow sightings. Oh, we could see snow- but it was so far up the mountain that we knew it wasn't going to happen.  We tried telling the boys that we have been having a fun adventure, but that unfortunately we wouldn't be able to reach the snow as it was too high up.  I'll just say, There were tears.  We drove up and up, and just as we reached the crest of the road, where we wouldn't be able to go further, we spotted it: Snow, just a mere 50 feet away.  It was just a patch, but it was enough to put your hands in and say you touched snow!  Cue the Hallelujia chorus.





And the best part?   We can say we made a snowman this year...


The ride down the mountain gave my friend and I a chance to really talk, while the boys were busy with their running commentary on how we were going down, down, down. We talked about my friend's recent health scares, which could actually turn out to be something scary. We talked about unknowns, expectations and the things that we hate the most. For her, it's the idea of having to rely on others. She is a super independent, capable and commanding presence who tends to be the caretaker, not the cared for. I get it.  For me, the idea I hate the most is being pitied.  I see it and hear it in people's faces and voices when they first learn the news of Elijah's diagnosis. The work I have to do, is to let that go.  My life is wonderful, Elijah (and his diagnosis) is everything I could have ever wanted.  So, why do I let what other people think get to me? I think in part, because it's so off base.  It would be like having people think you failed a test, when in reality, you aced it.  I guess it doesn't really matter what people think, because at the end of the day, you still aced the test.  But, it's annoying because the perception is off. I feel that way about Down syndrome.  The perception is SO off.  People have said things to me like, "Well, a Mother always wants to have a healthy baby."  This is true,  but I want to say, "Yes...but even if your baby wasn't "healthy", you would be okay.  In fact, you'd still have a really, really good life." Having a "healthy" baby doesn't guarantee anything either. Luckily, we haven't had to deal with medical complications for Elijah, because I know from friends that do deal with it, that it can be draining and stressful.  I also know that my friends who have children with medical concerns, still have a great, great life.

Part of the undercurrent of bubbling emotions I mentioned, surrounds an article I recently read.  A couple in Portland, Oregon sued their Doctor and Health System for a "Wrongful Birth".  Yes, the couple had a child with Down syndrome, but their pre-natal testing (it is unknown which form of pre-natal testing they did) did not disclose the Down syndrome part.  The parents sued and WON because they said that if they would have known in advance, they would have aborted their child (who is now 4, by the way). They won 2.9 million dollars. The money is said to help offset the life long medical bills and additional care their child might need. I feel nauseous.  I feel nauseous because there is already a 92% termination rate when a woman gets a prenatal diagnosis. There is already a heavy emphasis by the medical community to terminate these kinds of pregnancies (ask anyone who has had a prenatal diagnosis). Now, a precedent has been set. If the medical community makes a mistake in the testing phase, they will be financially liable for the outcome.  Believe me when I say that we were terrified of what having a child with special needs would mean for us financially. Terrified.  We came to learn, that luckily there is assistance. Elijah gets the early intervention that he needs without cost to us (the taxes we've paid our whole lives lend to this), and now we have assistance with his medical care through Medi-Cal. We are a family who needs this assistance. The 2.9 million dollars that the Portland couple received puts a bounty on these babies' heads. Here is the reality: My child is worthy, loving, and deserving of life. No one urged me to have Elijah, though. I was reminded that termination was an option by my Perinatalogist. I was reminded that termination was an option by people I know.  I had friends support me no matter what my decision was going to be.  Maybe it's because I never considered not having Elijah and most people knew that, but NO ONE said, This baby is your son and he will be everything he was meant to be in your life. You have an option to keep him. And now, thanks to this couple in Portland, no one ever will.  At least, no one in the medical community ever will.  I even offered a copy of a beautiful book I was part of called "I'm Down With You" as a gift for my Ob-Gyn's office.  She vacillated and said that she would have to get clearance from the other doctors in her practice.  Clearance to leave a book lying around that showed beautiful pictures of worthy human beings?? She's right.  She needs clearance. Because now, she just might get sued over it.

Moving on...

We met Elijah's new Medi-Cal approved Pediatrician last week.  It was a successful well-baby visit and the doctor asked a lot of questions and got to know us a little bit.  At the end of the exam, she said, "You really know a lot about Down syndrome."  Ummmmmmmmmm.....My mind flickered through the motives for a statement like that: a) And she doesn't?  b) I do actually know a good amount about Ds, because my child has it... c) Maybe the general socio-economic status of the patients she sees affects their ability to educate themselves about their childrens' diagnoses?  Hopefully the answer is just b and/or c. We go back next week for a routine blood test and immunization.

I wrote my last post about my search for an elementary school for Christian.  My favorite, The "Friday school" as I've called it, had their admission lottery last week.  We haven't yet received a spot, but we are only #14 on the wait list.  I'm told this is a near guarantee. So, I'm optimistic, but until we receive an official spot, I'm not celebrating and I'm moving forward with other options.  If, or when, a spot comes up for the Friday school, we'll jump at it- no matter if Christian has started elsewhere.  But, just in case this is the one weird year where everyone takes their offered spot, I don't want to be left with no place for Christian to go. I am suspicious of my odds ever since I struck a 1 in 770 chance of having a baby with Ds.

The last few weeks have revealed new milestones for both of my boys.  Elijah is officially cruising and Christian is riding his bike.  The sidewalks and streets around our house are difficult for learning to ride a bike, so Christian really has had no practice at it until recently.  He took to it like a pro and I have no doubts that if we keep at it regularly, that in a few weeks he won't even need the training wheels! Watching Elijah walk down the length of the couch to retrieve a toy is a sight for sore eyes.  I teared up and actually said to the therapists, "He is actually going to walk someday!!"  Of course he'll walk.  It was never a question of if he'd walk. But because I had put it as a distant milestone, a part of me felt like it was so, so far off.  But, it's not.  Before I know it, I'll be having a hard time remembering the time before he learned to walk. I'm not the only proud one in our family.  I overheard a conversation between Christian and one of his young friends (talking about Elijah): "Yeah...and he says 'all done' and bye bye' and he claps too!!" (All said in the most excited voice ever.)  And the admiration is mutual.  While I pushed Elijah in the stroller behind Christian, who was riding his bike, I encouraged Christian's riding.  I shouted, "Great job, sweetheart! You're doing it!"  Elijah clapped and shouted right along with me.

While I will always fight the urge to not care what others think, I am at peace.  I did "ace the test" and even if no one else knows it or sees it, I know it. Now, I'm off to go give my kids a kiss...




Photos courtesy of my Dad, who said, "It's not difficult to take great pictures when you have great subjects." Very true. :)


thea said...

I think stream of consciousness suits you well. Beautiful, moving, well said post. So happy for all of you I couldn't help but get a bit weepy. Xoxo

Anonymous said...

Thanks for being such a great, SPONTANEOUS, friend...and a much needed listener on what could have been a rough day. As usual, my admiration for you knows no bounds. Love you.

Becca said...

Wow, where do I start? So many fantastic things, not the least of which is your amazing spontaneity!! Love that, and I'm so happy you all found snow. Looks like you found more than we in the mid-Atlantic did this year, sadly. LOL

Yeah, what the doctor said is puzzling - why *wouldn't* you know a lot about Down syndrome? Weird.

That lawsuit in Portland has weighed heavy on me. It is very, very concerning, and I hope that couple and the judge feel the weight of the Pandora's box they've just opened...

Sorry about your friend's health concerns, thrilled about Elijah's cruising and Christian's bike riding, even more thrilled to see this new post from you. :-)

P said...

The interesting thing about lawsuits is that these big judgements are typically reduced LOTS on appeal or have a Private final settlement amount negotiated (that's lower) which is NOT hyped and made public because it's not exciting to have the amount lowered. As a group we need to publicize any reduction ourselves LOTS and do what we can to support it getting revised wherever we can.

I'm more taken aback that our society would ALLOW a value to be placed on a condition--not one CAUSED by an accident or procedural error but ANY test is subject to human error & some were chatting about the child and testing being inaccurate because the child was Mosaic DS - so not ever cell has the extra chromosome. It's just part of the percentage that does NOT test accurately. I am not sure if that's truth or a guess on the part of the rumor mill.

I still need to offer assistance if possible (not my area but as an insurance/numbers person I can AND HAVE thought of LOTS of stress-reducing and cost SAVINGS involved in raising a child with DS since that news story broke--addiction to drugs? Screwing up yout life in general? Not talking to your parents for extended periods?

P said...

Plus in reality the whole indepence issue is myth. We are social beings and our societY here in the USA s designed in a way that as we age we do rely on others for support. SO my new view of dependence is really much clearer now as I ponder this lawsuit--we all need regular help by age 65 or 70 so the extra assistance for a child or sibling with DS is only a limited period--from post-college to middle age! Not a short timeframe but healthy families typically have strong bonding & help each other Foster and maintain assistance & togetherness anyway!!!!?!

I'm sure My Rambling thoughts Aren't translating but DS might be viewed a safeguard of sorts to promote & keep families in Healthy relationships or to FIND healthy connections for the long run!!

Amazing cruising story, very very exciting and be sure to get fun videos because you never know how long or short these development spurts are--he could be walking soo soo soon. I am sorry about the school but keeping fingers crossed and hopefull that he gets is very soon if not by school time. I want to hear lots more, I know other families at that school AND WE NEED ONE in the south bay ASAP!!

I love Christians commentary on Es ABILITIES. Yes, heres what he CAN DO. Here's what he's learned. Smile and keep striving to add and experience new things as you can. A snow goose chase is fun and that's one of the cutest snowmen & snow kids ever.

Do not let your OBs comments sway you. You are convincing and I bet you CAN have & maintain a gentle manner that would suit that situation with poise & grace (despite frustration if you face ignorance from Educated professionals). Offer to meet with the other doctors. Use the lawsuit as the REASON & proof that the DS community Needs this book on their table. So lawsuits don't happen.

I was at my OB in October after my sons birth and the whole reception area had streamers & banners about breat cancer awareness month. It is also DS awareness month so I pictured the I'm Down with You book along with a quick poster or minor pretty fan fair or maybe the baby book or Gifts also -- you are the decorator, send US tips and offer to set it up for them next October in your OBs office. Or take a pic of a sample set up & I'll help broadcast it online too, whether your office is keen on the idea or not. Get the book to other areas like therapy centers churches or spec needs book havens at regional centers....Hmmmm

Ask WHAT they are giving to people who take screening tests. I think anyone taking that blood test MaterniT21 or whatever it's called should be handed the www.downsyndromepregancy.com brochure or link at a minimum.

Hang in there and thanks--you are incredible and incredibly generous & also soo sweet to share your thoughts bravely. I'd be in hiding for more than three weeks after the news AGAIN about the loss of a good friend. But we dont have control over much, we can guide our way and choose plenty Of options along the way but we must keep going somehow! And you find a way & do it & manage to help brighten the path for many others, especially sharing yout passions like ballet & pArTIeS!!!