Archives for June 3, 2008

Keeping Up

Well, it’s always hard to follow up the emotional posts, but here I go with a therapy update.

Yesterday we saw the physical therapist (at home), and she saw major improvement on his stomach, but he wouldn’t sit for her at all. I was OK with it though because I had a revelation this week: Charlie will sit. I have no idea when, but I feel certain that he can do it. He has his moments here and there and all we have to do is build on it. Maybe I’m completely naive, but I just KNOW he’s going to do it. Anyway, with his new-found tummy-time skills, he’s starting to making some crawling movements as well. We’ll see if that leads anywhere.

Secondly, we’ve reached a bit of a snafu with regard to bottles. We were recently told that we no longer needed to thicken his liquids. Charlie did fine with thin liquids. Unfortunately, nobody told Charlie and he doesn’t like his milk un-thickened. I’d told Tiffany that I would send her our box of thickener and I had to go out to my husband’s car and dig some out because Charlie was refusing to drink his milk thin. I’m going to have to talk to his OT about weaning him off of thickener because cold turkey did not work for us. My husband is big on promises, though, so Tiffany will be getting that box sometime soon.

Finally, although Charlie is a big fan of shouting and screeching, we still aren’t seeing any babbling. I am seeing different mouth movements, but no change in sounds so far. His speech therapist “suggested” that we purchase some equipment so we can provide daily stimulation on his mouth muscles. I say “suggested” because they can’t tell us to buy anything that isn’t readily available in the home. Needless to say, we’ll get whatever is suggested, so I’ve been instructed to order an outside of the mouth massager and an inside of the mouth massager. Has anyone noticed that Charlie gets way more massages than I do?

Tomorrow we see our instructor for the first time in three weeks due to scheduling issues/vacation/ect. I can’t wait. I’m hoping that we’ll get some new goals from her.

Finally, I’ve got out-of-town guests coming on Thursday, so I’ll probably be a bit scarce until sometime after the big birthday party. I promise to take lots of pictures and update when I can.

Worth It

In this country more than eighty percent of babies diagnosed pre-natally with Down Syndrome are aborted. More than eighty percent. My mind is boggled by this number. Abosolutely and completely boggled.

Now, I have known some really awesome couples who simply refused to have any tests for anomalies–they knew that whatever God had given them, they would take.

My husband and I weren’t that awesome. We discussed and debated whether or not to have the test. You see, neither of us believes in abortion. Far be it from me to tell other people how to live their lives, but for us abortion was never an option. So why have the test? For me, the reason was simple: if the baby had problems, then I wanted to be able to prepare for them.

You can’t prepare for everything, though.

Here I am just days away from Charlie’s first birthday. The “little boy who shouldn’t have” has made it so far. There was no preparing for his birth; no preparation for what lay ahead.

So, why am I bothering to re-hash all this ancient history? For one simple reason. This is the internet. Somewhere, some parent may Google “massive brain damage” or “cerebral palsy” or “infant stroke.” I was this person a little less than a year ago, and I want my opinion on the whole thing to be clear:

It is so worth it.

When I was pregnant, I waited to say these words. I wanted so badly to know that the sleepless nights and the heartburn and puffy feet were all worth it. I wanted to know without a shadow of doubt that I had put my body through hell for the right reasons. I dreamt of posting those very words on this blog.

It wasn’t clear right after I gave birth, though. My heart ached and my body had been sliced open. I literally ached, but wished I could be numb. My life was the shambles and I couldn’t hold the baby that I’d carried inside of me for thirty-seven weeks. Was it worth it?


Charlie is an amazing person. He loves macaroni and cheese, marinara sauce, chicken salad, cheese dip, and juice. He hates carrots and asparagus. He has his father’s nose, and eyes, and thighs (chubby). He has my grandfather’s chin. He is sweet and rarely cries, but he is a master at pouting. He loves to be held and played with. He is shy and will hide from his own reflection in a mirror. He fights sleep by screaming at the top of his lungs–he might miss something! He loves to stand, he love music, he hates the grass. He is an interesting and amazing blend of my husband and I. He is only a year old and he can’t talk, his vision is lousy, and he doesn’t even sit up without help. He is a dream come true. He can eat in any restaurant and rarely spoils an evening–a baby who seldom cries. He is a delight.

So worth it.

We have lot of appointments, but I don’t mind. Truthfully, I don’t know what other mothers do with their time. I NEVER feel put-out having to go to a doctor or therapist. I can be so insanely selfish, but these things are a given. They are easy. They are simple.

I have no idea if this ramble makes sense, but I hope my point is clear: Raising the imperfect child is wonderful. Once you get over the fear, the rest is easy. There may be doctors and there may be therapists. There may be moments of utter and complete helplessness. Without these, however, you would be missing out so much. Charlie’s soul is sweet and pure and uplifting. He delights in the smallest of things. I cannot imagine a world that doesn’t have him in it.

So very worth it.

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