Tuesday, July 29, 2008


Me: So we're going to the Sylvania Branch for COSI on Wheels.

M: Where's the trunk?

Me: Trunk? What trunk?

M: You know, the trunk? Where is it?

Me: [thinking, thinking, thinking] Oh! The Main Library downtown is the trunk.

Saturday, July 12, 2008

Saying It Better

I love blogs. The list on the sidebar doesn't even touch the bookmarked sites that I have. The ones on the sidebar, though, are ones I read on a regular basis. I tend to be drawn to blogs of knitters, other moms, really good writers, and (just getting into) those who are writing about raising children with special needs, especially Down Syndrome.

Many times, these other bloggers have a way of expressing thoughts, feelings, or experiences in a way that perfectly encapsulates my own. There are two that have resonated with me recently:

The QC Report
Every time we let our children walk away from us, we’re practicing for the time they do it for keeps. And every time we let them go out into the world, even for a short time, some part of our brain thinks “No! Not yet! There’s no way she knows enough. I know for certain I haven’t taught him enough. Did I teach her the eyeball-gouging trick if someone tries to kidnap her? Did I get him to tolerate citrus fruit enough so he won’t die of scurvy? Did I impress upon them how unspeakably fragile I feel when I think about them doing something self-destructive? Does she know how I have never loved anyone on earth the way that I love her? Come back. Come back." (4/10/08 entry)

Down Blogger
I am a member of more than a few Down syndrome specific sites. I routinely attend the yearly DS Conferences. I know a fair bit about statistics, different kinds of DS, health issues specific to "our kids", etc. In fact, it is rare a day goes by that I don't find myself speaking or typing the words "down syndrome". And yet, DS is such a minor part of who my daughter is in my thinking. I rarely look at her and think "oh, that is because of DS". I don't equate her successes and failures with the number of chromosomes she packs. Even so, I am aware of her genetic makeup deep in my bones, it is there even when it is not in the forefront of my thoughts.

Somehow, I have been able to raise her to be a young lady who happens to be really cute, funny, charming, a bit moody, a third grader, a great reader, a pretty good baseball player, an aspiring artist...who happens to have a little something extra in her genes. In a weird way, DS is everything, and DS is nothing. It colors most of my thinking about her and her future, and still manages to be at the end of a long line of things I think about when I think about her.

It is almost as though the DS is the last hurdle we jump in all cases of trying to give her the life of a normal little girl. Usually, it is along the lines of "How can we make a world that has her pegged as 'that Down syndrome kid' see who she really is. (03/01/08 entry)


Friday, July 11, 2008

Golfing Girls

I forgot that we went miniature golfing for Big Daddy's birthday. When doing the June Newsletter, I found these pictures:

It was really hot that day and we were trying to keep E out of the sun as much as possible.

It was fairly successful, if by successful you mean that we skipped a number of holes because good sport(wo)manship was being compromised.

I think it's definitely something we'll try again.

Wednesday, July 9, 2008

Family Newsletter: June 2008

My Beautiful Girls,
June was a great month for all of us. We began the month with your recital, M. You danced to Christina Aguilera's Car Wash and it was great. We were almost to the end of the recital when there was a tornado warning and they evacuated the theater. Daddy, E and I were with Oma & Opa, but you were in the staging area with the other kids. I wanted nothing more than to race to the back and get you, but I also don't want you to scare you. We sat and waited patiently and, once the threat had passed and we were all reunited, you were none the worse for it. In fact, they (Miss Elaine and the teaching and volunteer staff) probably did a much better job of distrating you than when the tornado sirens go off here and we scramble to the basement. Anyway, the recital was awesome and this time, the process was just old hat to you.

June saw the addition of more plastic to the household. You and Daddy went out during the Community Garage Sale and returned with another little baby-care set. This one, though, is much different! than the other ones we have! You've spent quite a bit of time filling the storage areas, putting babies in
the bath, high chair, and cradle. It also prompted you to spend your birthday money on a little suitcase of doll clothes. Of course, the suitcase itself is now being used for paper dolls.

The other thing that I've noticed ab
out you lately (not just June), is that your art has really changed. You're drawing people more completely - e.g., adding hands, clothes, etc. - and using a lot of color. We have pictures posted all over our bedroom wall and many more stored. One of these days, I'm going to collect my favorites and scan them. We've also been doing more art projects and made you, E, and your cousins C and J little purses. We used beads and ribbon, etc. to complete them, then put in $1 (yes, I'm a big spender) and some chapstick. These went over like gangbusters.

One other adventure we've had was finding the hummingbird babies. We found them because we saw the mama hummingbird hovering over them and bringing them food. We left them some food and went and told the neighbors as they were in their yard. Mrs. S. also came out and we all took pictures and movies of the little birds, thinking that in a day or so, they would fly away. Unfortnately, overnight there was a terrible storm and one of the babies died. Then, later the next afternoon, despite the fact that I lifted the remaining baby to a tree (I used a little scoop) and that we check on it after another miserable storm that blew the rain sideways, the second baby died. As we talked about it, you said that it was okay because at least we had pictures. And so we do.

For you, little E, you continue to make wonderful progress. You move constantly and, when left up to your own devices, like to wiggle your way off the blanket or mat. When eating, you like to raise your hand up in the air and wave it around until I grab it. Then, multi-tasker that you are, like to play with it while eating.

I should also mention the use of your legs and feet. It's not that you kick me while you're eating, rather, its more like you use your legs and feet to explore. In the blue bouncy seat we have, you use your feet to kick the hanging toys as they're still out of reach. You also recline your feet up the little posts when you are taking a little rest. The other thing you do with your legs are to get them trapped outside the bed. Despite placing you on your back furthest from the wall, in the mornings you are invariably over on the other side of the bed, on your stomach, and with your legs hanging outside. It's really quite amazing.

You also sigh (which are so sweet) and make little noises while sleeping. There have been many a time when you've made noise, but when I've gone in to get you up, you're still sleeping. I shouldn't be surprised because both Daddy and M are "active" sleepers. Given your inability to stay in one position (neither did M when she was an infant, or now for that matter) and the talking in your sleep, you're on target to fit right in with them.

June was the month that you really started waking up talking. Once awake, you like to have conversations and I have to admit, that I had forgotten that M used to do that too. These are pretty funny as there's one, sharp little shout that is definitely "Hey! Get in Here!"

In June, we also started solids, and so far, you're doing great. You've had rice and oatmeal cereal, carrots, sweet potatoes, and prunes. T
he second time I sat you in the high chair and put a bib on, you already were lifting your head and opening your mouth like a little bird, ready for the cereal.

We continue to get really great reports abo
ut your progress from Early Intervention. We started using the Big, Red Chair, Jr. Executive model (also known as a corner chair) to help you with your head, neck and shoulder control. You like being in the chair and we've played various little games, including rolling the little chiming ball back and forth.

There isn't one moment this month that really stands out as a best moment. Rather, it seems that our time, now, consists of nice, simple moments that reinforce the fabric of our family. It's not all roses, though, and one day I may write the Anti-newsletter which details how mommy lost her cool, or M had 3 time outs, or E spent the day not sleeping, etc. But that's not today. Today, and every time I finish one of these newsletters, I am filled with joy and love so profound that there are no words that I've found to express how lucky, blessed, thankful I am for you both, for Daddy, for our family, for my life as your mom.

Love always,