So now I wonder...

When we found out we were pregnant this time around, there was no question that we would skip the prenatal screenings. We knew that anything screened for would be visible on our level 2 ultrasound, except Down syndrome. There were no markers for Down syndrome on the ultrasound and everything measured exactly as it should. Plenty of babies with Down syndrome are born without any markers on the level 2 ultrasound, so that does not mean that she is not sporting an extra chromosome, but odds are good that she has the usual number.

I had to wrap my brain around the possibility of a typical baby this time around. I admit that Eon, with his phenomenal sleeping schedule and laid back personality, completely spoiled us. I remember well the infancies of my typical kids with their unexplained crying jags and demanding personalities. Seems like a lot of work to me.

As a family, we enjoy Eon so much and delight in everything that he is. I worry now that we will not have the same bond with his little sister, that we will miss all she has to offer because of our complete devotion to her brother. My head knows that it is unfounded, but my heart is not so easily convinced.

So I wonder, will she have Down syndrome, too? Will she be healthy? Will we instantly bond? Will we accept her and delight in who she is? Time will tell, but these are the things I pray about.

Rolling Around In My Head: The People Who 'ARE'

Rolling Around In My Head: The People Who 'ARE': "It's in the press again. I search to find out the context of the word. I see debates all over the web, people bemoaning the 'politically c..."

I found this post to be a must-read...humbling and brilliant. Please, please...take the time.

SMO Guilt

SMOs (small ankle braces designed to provide support and proprioceptive input) have been the bane of my existence for several months. My life is crazy. It is summer and all the kids stay barefoot, donning flip-flops only if we leave the house. Putting socks, tennis shoes, and SMOs on Eon first thing in the morning and again after nap time was not working for me. I kept trying to find a way to make it work, but mostly I just lived with nagging guilt that he wasn't wearing them as much as he should.

Then, I began to notice that, without them, he was standing independently and even taking steps. With them, he would barely pull to stand and cruise. He spent a great deal of time pulling at the straps of his shoes trying to take them off. I felt like they were interfering with his independence and mobility.

Remembering that the PT was uncertain initially if he even needed them, I decided to approach her and confess my negligence in this area. When she showed up last week, he was barefoot. I told her all I just shared with you. She agreed with me that we don't want to slow him down and that we can add them back in once ambulation becomes his primary mode of mobility. I was thrilled and amazingly relieved! It's the first time I've bucked the system, so to speak. (Well, except for when I d/c'd OT, but I am an OT, so that shouldn't count...right?)

This week, we met at the park for PT and she was amazed with all he could do. He climbed the stairs and she worked with him on coming down (not so great at that, yet:), he climbed the slide, took a step or two in the mulch, stood independently for over a minute several times, and took several steps in a row on the pavement. He was wearing his shoes, but no SMOs. I think he enjoyed showing off! He also learned the word "hot" from where the sun was shining on the equipment and used it repeatedly! He did so much more at the park that we're meeting there next week, too.

Oh! She was letting him rest on her lap in the shade for a minute and he started signing "play". That's the first time he's used that sign without prompting. That was our added bonus for the day! :)

God Wink

Last week, I read a post by Erin about a "God wink" she experienced, a moment that God ordained to show her she's not alone and it's going to be okay. I read her post with a heavy heart. I was feeling down about Down syndrome and sinking into a giant pity party.

Later that day, I took the kidlets to a McDonalds with a playland. Before we left, I struggled to put Eon's SMOs (ankle braces) and shoes on as he squirmed and kicked. Once there, I got him a cup of water (unmeasured) and tried to guess how much thickener to mix it with to prevent aspiration. I've learned that he does better eating his cheeseburger if I just offer it to him to take bites from, versus cutting it up. It takes longer, though, so the other kids ran off to play.

As we sat there, I looked around at the other families. Then I saw her. She was about 2 1/2, but I'm purely guessing at that because she was tiny. She had soft blond hair and cute little glasses. Her mom was holding her rather awkwardly and feeding her lunch...a jar of stage 2 baby food. It was obvious that she had cerebral palsy and her limitations were significant. Her hair was rubbed off on the back of her head like a baby's from lying or semi-sitting in a stroller.

I pondered the scene for awhile. I have no doubt that the mom delights in her daughter every bit as much as I delight in Eon. Her three older siblings obviously adored her, too. Yet, I couldn't help but realize that this mom has significantly more work, appointments, and uncertainty in her life with her daughter, than I do with Eon. At this point, Eon was climbing through the playland with Ellie close on his heels. He was shrieking with laughter as he tried to stay out of her reach. The little girl was smiling, too, as her siblings ran up to kiss and tickle her and include her in their play.

Suddenly, my perspective was changed. I felt grateful. Not because I don't have that woman's life, but because I get to have mine...the one that was chosen for me.

On the way home, I realized that God had winked at me, too.

He's on to something!

A few weeks ago, I wrote a post entitled "I See Down Syndrome". It has always baffled me that other moms seem to forget about it in their children, but I never do. A few days ago, Faith's mom, Stephanie, wrote a great post entitled "Sometimes I Forget". I admit to feeling a tad jealous of her after reading it. I read it to my husband and he agreed with Stephanie.

"I hardly think about it and when I do, I'm almost surprised to realize he has Down syndrome," he said.

Really?!? What is wrong with me?

Then Shawn told me he thinks it's because of my medical background. I'm an OT. It's what I do, but it's also part of who I am. He pointed out that I've always been aware of my friends' kids' development. I'm the one who "diagnoses" kids when I work in the church nursery. I'm the one who isn't afraid to recommend early intervention to a mom when I notice her child is lagging behind. It's just what I do. I've been trained to "see" these things.

He seemed to think that it's no different from him, as a professional handyman, noticing needed house repairs when we visit someone. (Hmmmm. That doesn't seem to translate to our own house...;)

I think he's on to something! After starting to question my acceptance of Ds and even Eon himself, I am breathing a deep sigh of relief. Maybe I'm not as warped as I thought!