Wednesday, March 9, 2011

It's a Pity



You know what bugs me the most about my situation? It's the idea that there are people that pity me for having a child with Down syndrome.  The reason I don't always tell people right away that Elijah has Down syndrome is because I want them to have an experience with him first. To see what a sweet soul he really is.  Then, when the inquiring looks begin as to why is he 10 months old and still not sitting up independently, crawling or cruising, I can say, "Oh. Elijah has Down syndrome and that affects his muscle tone, so it will take him longer to develop his gross motor skills."  When it goes in that order, most people seem to respond with a genuine, Okay.  He sure is a cutie.  Which is what is most true about him.  What is true about me, is that I don't have it harder than most. Or, at least so far I haven't had it harder than most.  There are "cons" about Down syndrome, but also "pros", believe it or not.  A con is that it is taking him longer to develop his gross motor skills, but then I look at my friends with 10-12 month olds and they don't get a moments break because their babies are getting into E.V.E.R.Y.T.H.I.N.G.  We're not there yet, so I can leave my floors unvacuumed, my electric sockets uncovered, and hang out next to my baby as he rolls and plays in the general vicinity I put him in. that a "pro" or "con"?  I'm going with "pro", because at the moment I can barely leave my 3 year old unattended or else havoc is wreaked.

Some parents of children with Down syndrome are annoyed that there is a stereotype of "Kids with Down syndrome are always happy."  While this is not true- children with Down syndrome experience the same range of emotion as all other children: happiness, sadness, frustration, anger- they do seem to be exceptionally compassionate children.  My experience with Elijah is that his general demeanor is Content. While I appreciate and love every last fiber of my older son's being, raising him as a baby, was a FAR more challenging situation.  I'll credit some of that to being a nervous, first time Mom, but I also believe some of it is personality.  Christian cried A LOT as a baby, but he also smiled a lot.  Elijah cries only when something is really bothering him and he also smiles a lot.  So, I don't really think it has much to do with Down syndrome.  I just think it is my kids and the differences between them. 

It's been so exciting seeing Elijah work for, and start to achieve, some new milestones.  I also watch his therapists fall more and more in love with him each week.  Our sessions started out purely professional but now there is a softness to each of our therapists faces.  They are excited by his progress and charmed by his nature. He is quick to smile, even after a challenging series of exercises that has him complaining like a banshee.  He is pushing up on his arms frequently now, rolling to move all around the room, babbling like crazy, sitting independently (with arm support) for a few seconds at a time, and beginning to take notice of a lot more of the world. Here's a quick video of Elijah hanging out on the changing table and checking out the light as it comes through the curtains: (Be sure to pause the playlist at the bottom of the page or you'll be hearing two audio tracks. Very annoying.)

So... Pity?  I hate it.  I don't need it and it bums me out.  I'm stronger for facing the fears that life might be different with Elijah. I'm more appreciative of every second of his development.  I'm more "in the moment" than I have ever been in my life.  I am blessed by the beautiful connection that my two boys share.  The fact that Down syndrome and it's affects on children are so misunderstood?  That's the real pity.  My greatest wish, and my desire for this blog is that it might somehow positively affect someone who knows nothing about Down syndrome.  That someone might look at it and think, Wow. I had it all wrong.  That someone might say that Elijah's life is not to be pitied, but instead to be celebrated...for all of the ways he is alike and all of the ways he is different.


Becca said...

Great post, Jen. Btw, I looked at the delay in walking and crawling as a plus, too. I didn't really child-proof for quite some time, and enjoyed the freedom it gave me to get to know and enjoy my baby, rather than worry all the time about what she might get into. :-)

sorenspace said...

it's all about the 'footstones'. they add up to the miles. with isaac I never appreciated the feet. they went by all to quicky, often without notice.
love how he is grabbing his toes. so great.

Kathy S. said...

Elijah has certainly changed my perception, and so has his mommy. I love the video and seeing both Dina and Elijah's smiling faces in those pictures!

Team JHB said...

Great post, Jen. I absolutely feel the same way! Everything you wrote is spot on! I do the same with Benjamin, let people fall in love with him before telling them that he has Down Syndrome. So happy to hear that Elijah is progressing so well in therapy! Woo Woo for reaching those milestones! =)

Thank you again for taking the time to keep your blog.

Hope to see your family this Saturday at Club 21.

Sarah Tacoma said...

amen sister!

thea said...

Well said on many levels. The video made Clara and I smile. She liked it so much that she keeps asking who the "silly baby" is.

Csunshinegirl said...

Totally agree. I tend to look at the delays as a pro too and honestly I really couldn't imagine having a typical child. It just goes so fast. Good post, Jen.

weucles said...

Essa Fotos do seu bebê de ocúlos estão parecendo com um dos componetes da bnda restart aquí no brasil, ficou muito legal.

weucles said...

E outra ele é muito bonitinho, parabens.

Anonymous said...

I don't know how I stopped following you - sorry about that! Thanks for the comment on my blog. :)

I think you and Kelle Hampton both do an awesome job of showing the real side of parenting a child with Down's Syndrome. I think the reason why people might "pity" you is because they simply don't know anything about children with DS and what a blessing they are!

Elijah is so adorable and that video of him? PRECIOUS. :)