Wednesday, August 26, 2009

Just a baby

Last week, we had our first meeting of the year for our homeschool group. Our family was basically MIA for the spring semester last school year because of Eon. Our group was kept updated on Simeon's birth, diagnosis, subsequant hospitalizations and surgery via frequent emails from a friend and fellow member. I took Eon along to the meeting and it was the first chance many had had to meet him.

Generally, the comments were of the "he's so cute" and "how's he doing" variety. But one gal really surprised me. She stopped to chat and tell me that they'd been praying for him. After asking the usual questions and watching him for a bit, she shocked me by saying, "Oh! He just makes me want to have another one!"

It took me awhile to realize why I thought that was so cool. I think it's because she saw Eon as a baby, first. And second, it's because she not only totally accepted him, she'd be just fine with one of her own. Of all the women there, not one other woman looked at my baby with longing. But she did. I can't tell you how it warmed my heart.

Monday, August 24, 2009

"He's really blessed to have been placed in your family," our favorite nurse from the ped's office informed me today. I was surprised and responded, "Actually, it is we who are blessed!" I was surprised that she made the comment because, quite frankly, we see often see ourselves as slacker parents. She assured me that we will see to it that Eon gets what he needs, but mostly that we will treat him as one of the kids, first and foremost.

Her observation really blessed me because I often see myself as a bit of a slacker parent. Sometimes, it's all I can do just to tread water. I feel like I should be doing more therapy with Eon. I feel guilty that I haven't yet purchased the "Teaching Your Baby to Read" program, and I can't believe that I still have yet to watch the "Baby Signing Times" dvd I bought months ago. I am confused about which vitamins to add and when, and just now remembered that I forgot to take him to have his 6mos. labs drawn today. Sigh.

So, for her to tell me that he is blessed to be my child, is something I'm having trouble wrapping my brain around. Maybe the most important thing we can do for him as he grows is to treat him as the normal kid that he is; to expect him to do for himself when he's able, to discipline him with love and grace, to teach him to have a servant's heart, and to train him to put others before himself - just like we are doing with his older siblings. Maybe it doesn't have to be as hard as I'm making it. Either way, it was really nice to hear!

Monday, August 10, 2009

And so it begins.

Today, we started solids. There is not much that I like less than the mind-numbing task of shoveling food into an infant's mouth. I tend to delay the onset as long as possible. Couple that with fact that I can never seem to remember which order to do it in. Food and then bottle or the other way around? Anyway, I've been procrastinating on starting this. At first, I was waiting until he seemed ready, but he's been exhibiting an interest in feeding and the trunk/neck stability for awhile now. So, today I got Eon all settled in the high chair for the first time. I adjusted the straps, realized it needs a serious cleaning as older brother Zak just moved to a booster seat, and found the baby spoon. I decided to feed him oatmeal as that's what we thicken his formula with. After the first few bites, I realized that we are in for the long haul. He made no attempt to close his mouth, move his tongue, or swallow. It all came dribbling out. Ugh. I thought I had low expectations, but that was about as unsuccessful as you can get.

BUT, the next time, I remembered to push down on his tongue with the spoon and he closed his lips around the spoon. Then he started to smack his tongue and taste the cereal. A few more bites and he seemed to enjoy it. He still got way more on himself than he swallowed, but it really went pretty well for a first attempt.

(I am quite aware that the OT will invariably find fault with just about all of it next time she comes, but I choose to bask in the glow of success while I still can.:)

I'd like to try some new foods in the coming weeks. Is there anything in particular that we should wait to introduce? I can't seem to remember if there is a particular order or if little ones with Ds are more prone to food allergies.

Friday, August 7, 2009

Simeon is six months old now and I thought I should give an update. He is such a delight! We went on a camping vacation last week and he is the best little camper ever. He can sleep anywhere. I felt guilty much of the week because he spent so much time in his car seat or stroller. I tried to make sure he got enough tummy time and stimulation, but I don't think we did his prescribed therapy even once. Imagine my surprise when we returned home and he suddenly started meeting some milestones that he's been working on.

He can now sit unsupported for brief moments. He can prop up on straight arms when prone and scoot to the side to get at a toy out of reach. He can transfer toys from one hand to the other and everything goes in his mouth. We will be starting infant cereal soon as he starting to watch us eat and mimmick our mouth movements. These are all things that seemed so far away just a few weeks ago. His PT is so impressed that we will be starting weekly sessions as soon as we get approval.

He had not had any apnea episodes since surgery until last week in the camper when he had two in a row and needed stimulation to recover from the second one. So grateful for that monitor! When he sleeps on his back, he goes into bradycardia but no one in the medical community seems to care, so we just let him sleep on his tummy.

I am officially done pumping and feel really good about that decision, although if he gets sick anytime soon, I'm sure the guilt will come. I am amazed that he was able to get breastmilk until six months and even more amazed about how much more time I have in my day.

He is still the star of the show around here and sometimes I even get irritated when I hear his siblings constantly bicker, "No! He already gooed at you. It's my turn now!" His oldest brother, Ben who will turn four this month, is still his biggest fan and has been participating in therapy sessions so that he can "do therapy" on his own with Eon (with mom closely supervising, of course).

I cannot believe the depth of love I have for this baby.

Tuesday, August 4, 2009

The Freak Show adds Down syndrome

We have six children. It doesn't seem like a lot to me (most of the time), but it's obvious that six is a lot to other people. Don't get me wrong, for the most part, our children are well-behaved, respectful, and delightful...but, they are definitely children and act like such most of the time. We now drive a 15-passenger (former daycare) van and have the stick figure family decal on the back with mom and dad, three girls, three boys, a dog, and a cat. They didn't offer turtle or guinea pig stickers or we would have those, too. When we go places together, people notice.

We get stared at. The looks we get range from the mildly curious to the outright hostile. Sometimes, genuine smiles of encouragement are thrown in, as well. The comments we receive vary, too. From "You sure have your hands full" (my heart is full, too) to, my personal favorite, "Don't you know what causes that?" (yes, and obviously we're quite good at it. I notice you only have two kids. Would you like some pointers?) My point is that we look like a freak show when we go out.

Now that Eon is getting older (he's SIX MONTHS already!), I notice more people staring at him, as well. I'm not sure if they are trying to decide if something's wrong with him or if they are recognizing the Ds. Either way, they can't help but interact with him because he is so cute and thoroughly charms everyone he meets. It amuses me because I think he's beginning to deflect some of the attention we receive because of the size of our family. People seem to notice our numbers first, and then catch sight of him and forget to react about our size. Down syndrome is down playing the freak show that is our life. Gotta love that!