Thursday, June 17, 2010

Finding the Middle

When Christian came out of the womb, he was laid on my stomach and immediately tilted his head back and locked eyes with me, as if to say, "That's what your face looks like!" It was as if he'd already been living a lot of years and had wisdom behind his eyes. In fact, it was a little freaky. I was a first time Mom and didn't really know any better, but it struck me how focused he was right from the start. My experience is so different with Elijah... His eyes focus on me every once in awhile- almost only when he's nursing, and he doesn't turn to me when I try to get his attention with a rattle or the sound of my voice. He's not smiling yet, either. At least, not on purpose. At 6 weeks of age, Christian had big, responsive smiles, and my heart leapt with joy every time I saw one. ...Actually, it still does... Elijah smiles in the middle of nursing and the other day he seemed to smile twice during the verse, "The babies on the bus go waa, waa, waa.." from the Wheels on the Bus song. But, it also could have been gas...it was hard to tell (and no matter how many times I sing that verse, the smile hasn't returned...). The first time Elijah looked at me, I thought, "Woo hoo, here we go...he's focusing!" But, by the next day, it was like he forgot how to do it or something. Same thing with nursing. I tried removing the nipple shield and he nursed with no problems two times in a row...then, he stopped. I can get him to nurse without it on occassion, but it seems hit or miss. It feels a little bit like two steps forward, one step back. It's starting to get me down and I've been a little weepy about it the last two days. I think I'm just trying to adjust and find the middle. When I was pregnant and first learned the news that Elijah had Down syndrome, I was devastated that he would be at a disadvantage for anything. Then, I slowly came around and realized that he was chosen for me and somehow it would all be a blessing. Once he was born and we brought him home, I was on a new baby euphoric high. That has lasted awhile and now it's shifting for me again. It's not as if he's out of the range of when these milestones happen, but being a second time Mom, I can't help but note when my older child achieved the same milestones. It's not about comparing. It's about the fact that as a Mom, I live for the day when my baby really sees me and when he really smiles. I know it'll happen, but I'm starting to see some of the realities of possible delays and it breaks my heart, just a little. My family and some of my friends just see his lack of obvious physical "markers" for Down syndrome. He has them, but they seem to be subtle things right now. Everyone is quick to say how this or that "won't apply to him", or "this is normal", "you'd see this with any baby"...I've even had a few, "You should get him tested again to make sure they weren't wrong." My baby has Down syndrome. There is NO chance that he doesn't. He has a number of markers, which could exist in any typical child, but together with a diagnosis is not a coincidence. It's getting hard to deal with. I think I just need to hear this instead: "He'll get there, Jen. It just might take him a little longer." Because that is the reality. He will have some delays. In fact, I may even be seeing some already. I don't feel like I have the strength to make the mental adjustment I need and be the (negative?) voice of reason to-those-who-wear-the-rose-colored-glasses. I'm a fan of the rose colored glasses myself sometimes, but they won't help me or Elijah here.

We saw our pediatrician, Dr. Keer, today for our 2 month well-baby check up. I talked to him about how Eli is not yet really looking at me, and asked if there was anything to be concerned about. Some studies say that about 10% of children with Down syndrome will have a dual diagnosis of Autism along with the Ds. That is terrifying to me. Dr. Keer said I shouldn't worry until about 3 months. (Note to self: Worry less. Sigh.) Elijah has been gaining weight and growing inches, and Dr. Keer was encouraging today by saying, "Keep doing what you're doing." But, when he asked how I was doing, I broke down because it is just a little hard to see things moving slowly. Dr Keer agreed that that will be the hardest part. He said, "Jen, you're a bright girl, you are caring and sensitive and Elijah is lucky to have you, and you are lucky to have him." I heart Dr. Keer.

With summer upon us, I'm enjoying warmer nights spent in the backyard with my boys. The slip and slide is fired up and ready for action, the yard is in full bloom and awaiting the death rays of a long Northridge summer, watermelon, corn on the cob and lemonade are becoming meal staples and it feels good. It reminds me about the things that are important, namely the time with my family. I found myself rushing Christian around earlier this week, and I think I actually said, "Hurry up! Hurry up! We have to go- we are going to go have some fun!" ...?????....Really?? Yeah...I need a little centering. So, I'm trying to be inspired by the long, lazy days of summer that I had as a kid. We weren't scheduled within an inch of our lives, and it was fabulous. Summer was the time to slow down, and I think that just might be the recipe to finding that center that I really need. I'm discovering that there are things about my littlest guy that are going to break my heart and things that are going to fill my heart so completely that it can't feel any fuller. Meanwhile, I'm going to keep working on finding my middle. I'll enjoy my summer with my boys, eat lots of watermelon and maybe even show my boys how the slip and slide is really done...

Then again, maybe not.

My inspiration:









2 comments:

Anonymous said...

i heart jen!

remember when we were in class and some of us were getting upset that our kids weren't hitting milestones when the others were? i do because i was one of them. eli WILL get there and it will be so special when he does. you will remember those moments lovingly just like with christian.

love you!

Tracy said...

He'll get there, Jen. It just might take him a little longer.

Jack glanced at me here and there. When he was 12 weeks old he finally SAW me! It's as if he "woke up" that day and never went back to sleep. And now he's every bit as social as his siblings.

As for the autism...tell me about it...My two olders have autism. My plan - haha - is that the Ds will counteract the autism. I'll let you know how that works out for me!

I have no advice for the people who love you that deny Elijah's Ds. I'm still dealing with that myself. I think it's okay to don the rose colored glasses in some instances, for brief periods. You'll know when your loved ones are ready to take them off. Hugs Jen!

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