Tuesday, April 17, 2012

What to Expect when You're Not Expecting it....

I ran a mud run two days ago. Yes, I knowingly, and willfully, got muddy. On purpose. Initially, I decided to do this with a good group of girlfriends, all with the idea that we decided to do something, "Not because it is easy, but specifically because it is hard." (Direct, rockin' quote from my friend CJM, who was the inspiration behind this adventure.) I'm down with that. I hadn't fully taken on this goal in my heart, to be honest though. I didn't train like I should and I saw it more as a social outing than a true personal challenge. Come race day, I told myself that I would go with whatever felt right...stay with the group, run off on my own...I wasn't sure. As we approached the starting line and the gun went off, my body went into goal mode. I came here for a reason. I came here for a physical challenge. Although I was with a group of girlfriends, the true challenge was individual. I began to savor the sound of my feet hitting the dirt and focused on my breathing. No ipod to distract me, I heard the sounds of the earth, nature and observed the gloriously beautiful spring day. I stayed with a friend for about a quarter of a mile and then let her pace take her where it was going to for her, and mine for me. It was peaceful. It was painful. It wasn't at all what I expected. I had joked that because I don't like being cold, maybe I would avoid the lake obstacle near the end, or skip the push up section, but as I approached each, I thought to myself, "Well, what did you come here for Jen? You came to do it, so DO IT."

I finished the race and completed all of the obstacles, including the insanely steep, long, uphill mountain trail that has left me nursing my painful shin splints incurred by running down hill. I get it now: The race mentality. There is a definite high from specifically putting yourself into a challenging position and persevering regardless of how difficult it is. Even though I don't consider myself a runner and have never really enjoyed it, I "get it" now.  It was truly an experience I won't forget. I hope my fellow mud runners won't mind this, but I have to post our "After" picture from the race...

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We attended a Birthday Party for Elijah's friend Benjamin last weekend. I'll be honest in saying that I was a little nervous.  I have been 100% relieved of the baby comparison games between Elijah and typically developing kids.  (These are the games that you either play or fight playing from the moment you have a child and realize there are other children in the world the same age.  Did yours crawl earlier? Talk sooner?  Make friends later? You just cannot help it.  Even when you're a down to earth person.)  Books like "What to Expect: The First Year" and "Your Baby's First Year: Week by Week" give us guidelines of what kind of milestones typically developing babies will go through and when.  I used these when Christian was a baby and usually they were a source of panic.  Wait..what?? He's supposed to be starting to take an interest in books at 4 months of age?? Really?? Oh no...I don't think he's doing that yet... Yeah.  This time around, I threw out those books.  I mean literally. I put them in the trash can. (Okay..okay...I might have given them to Goodwill, but I got them OUT of my house.)  However.........when it comes to trying not to compare to other kids with Down syndrome we have a whole other head trip.  Perhaps because of all of the possible problems- both learning or medical or both, I find myself reading into more, as if it is a sign of what the future will hold for Elijah, cognitively.  I have to continually remind myself that whether a child is an early walker or talker (within the typically developing community) doesn't have any bearing on how smart or capable they will be.  Same with late walkers or talkers- it doesn't usually have anything to do with their intelligence.  So why do I get so tied up in knots about what it will all "MEAN" for Elijah?? Probably because of the unknowns. Probably because I have worries about what Elijah will be capable of. What his life will be like. Will he have a job? Get married? Have friends? Be able to read a book?  Will it matter???  The comparison is not about whether someone's kid does something first, it's more that I worry if my kid ever will.

I was put at ease at Benjamin's Birthday Party. There were 4 babies all born within weeks of each other (All near 2 years old), all with Down syndrome, all boys. All different.  Yes, Elijah is on the weaker end (physically) than most of the other boys to some degree.  One boy is practically running. One boy is on the verge of walking.  Benjamin has a decent number of words, lots of signs, and blew out his Birthday candle on command (!!! Tears sprung to my eyes, by the way.  Turns out that it doesn't even have to be my own kid for me to be proud!) I was able to see Elijah's strengths as well as his weaknesses.  You know?...Elijah is kind of funny.  He's super social, loves crowds, loves to laugh and just "goes for it" when it comes to life.  I love that about him.  So, my mind was eased quite a bit last weekend. There isn't really all that much to compare.  Each of these kids is different, and although they are challenged by some of the same obstacles, they will handle it differently and in their own time.  What they do share in common, frankly, gave me a good laugh...us Moms bonded over the fact that there is throwing...a lot of throwing..., hair pulling, and unabashed shouting without warning.  These are not necessarily the traits that I love in Elijah's behavior right now, but actually...they are kind of typical...and if you let them be...kind of funny.  Happy 2nd Birthday, Benny!  I am amazed, yet again, that I learn my most profound lessons from a room full of children with Down syndrome.  See what happens when you're not expecting it??

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End of the party photo- the babies were pretty worn out from all of the partying at this point! :)



In between the concern over Birthday parties and running in the mud, we celebrated a beautiful Easter together as a family. We colored eggs with friends, hid eggs to inspire childhood traditions, celebrated all that we believe at Easter service at church and perhaps the best part: Enjoyed a relaxing time eating dinner and hanging out with family.

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We are so blessed to have my family close and to have them be such a regular part of our lives.  As we were wrapping up on Easter day, I asked my niece, Ciara, to watch Elijah by the staircase while I went to the bathroom.  I called over my shoulder, "Don't worry- he can't get up the stairs, but keep an eye just in case!" I came back from the bathroom, and sure enough, there he still was: at the bottom of the stairs, looking longingly up to the top of the staircase. That's when he began to climb...One knee, one hand, then the other...slowly one stair at a time.  By now, the whole family gathered- keeping one hand close, just in case he launched himself backwards. We hooted and hollered and Elijah took a pause now and again to applaud for himself.  He did it, though. He climbed all the way up the staircase to the very top. By himself. See?? You just never know...You never know what to expect- especially when you're not expecting it...

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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.


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

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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...

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