Wednesday, July 11, 2007


We're mulling around with the idea of getting rid of Clare's AFO's. Although I do see that her ankles and feet are more supported in her braces, she seems to be doing just fine without them as well. She is getting fast walking with our support, but AFO-less. She does not like to wear them, so we have been doing "fun" things when she is in them - such as going to the playground or playing with her water table. Clare's PT suggested putting Clare in the AFO's in the evening when she is more tired and has a tendency to be more floppy and roll in on her ankles. However, I am reluctant to push the AFO's too much because I do not want Clare to become dependent on them for walking independently. If she can learn to walk without the braces, that would be so much better for her. Clare's progression has always been slow, but at least she is making progress. She is standing independently more and more. She now understands that by putting movements together she can get places. She loves to practice sitting down and pulling to stand. She cannot do this all the way from the floor yet (which requires many more movements put together), but has mastered it from a little stool to the couch or her favorite is from our fireplace hearth up to the coffee table. By using a combination of rolling and scooting, Clare can get pretty much anywhere she wants to go. Her PT showed her how to connect her movements to sit up from laying down. Although Clare does not do it frequently, we see her getting closer and closer to doing it all on her own. We've even seen her get very close to crawling. Clare has her follow-up with the orthopedic surgeon in a couple weeks, so we are going to discuss this with him.

We're also trying to decide whether or not to take Clare to Louisville, Kentucky to see one of the country's experts in Williams syndrome. Dr. Carolyn Mervis is a psychologist who has worked with hundreds of children with Williams syndrome. Since Clare's doctors and therapists have only worked with a handful, we are interested in getting the perspective of Dr. Mervis. We want to be sure we are doing all we can for Clare and getting her the services she needs, especially since Clare will have her evaluation with the school department's special education team sometime in the next 4-6 months. Before Clare starts school, we will develop an Individualized Education Plan (IEP) with the team of educators. If there is something more that Clare needs, then we want to make sure she gets it. I think input from an expert such as Dr. Mervis would be invaluable.

We went blueberry picking yesterday with friends. I was looking forward to our excursion. We go blueberry picking every summer, and there is nothing like fresh blueberries right off the bush. All did not go as planned, though. We went to a new place and had somewhat of a trudge out to the blueberry bushes. Simon was very unhappy in the stroller, so I had him in the front pack and pushed Clare in the double stroller. Thankfully, we were with other people, so Jamie was able to go ahead with his friends. Picking with Clare and Simon was nonexistent. I took Clare out of the stroller and tried to help her stand with me (with Simon still in the front pack) and show her how to pick blueberries. We had picked a bunch when Simon became really fussy again. I could not keep holding Clare up and keep Simon happy. I popped Clare back into stroller holding the blueberry basket while I comforted Simon. Simon just wanted to eat, though. So I nursed him right there, standing in the middle of all these blueberry bushes. It was a hot, sticky day and very uncomfortable. By now, Clare was starting to throw a temper tantrum because she wanted out of the stroller. She had smashed all our blueberries. I had no idea where Jamie was or if he was having a good time picking blueberries (although I knew he was safe with our friends somewhere down in the blueberry bushes). I was not getting all those wonderful photos I had envisioned for my scrapbook. I was sweaty, headachey, and miserable, and standing there trying to discreetly nurse Simon while getting looks from other pickers because of my screaming 2-year old. (They were probably wondering why I was just standing there with the baby while Clare was throwing blueberries everywhere.) As I stood there, I felt tears come into my eyes. I had those feelings that life was so hard sometimes and I resented the situation I was in. My friends were out there with their kids enjoying the blueberry picking, and here I was, stuck with two unhappy children who could care less about the blueberries. I wanted to burst into tears. All I had wanted to do was go blueberry picking with my children.

As I stood there, it hit me. I could make the choice to be miserable the rest of our time at the blueberry farm or I could choose to make the best of it and enjoy myself. After Simon ate, I wanted Clare to have some of the blueberry picking experience. I realized that Simon was going to be fussy no matter what, so he went back into the stroller. I took Clare out again and sat her on the ground by the blueberry bush. It didn't matter that she was picking the ripe blueberries and the green ones, too. She was having a great time picking them off the branch. Clare and I personally did not pick many. Rather than keeping her out in the hot sun too long, I made sure Jamie was okay (he was, and having a blast, and picking plenty of blueberries for us!) and pushed Clare and Simon back to the enclosed farm stand. Simon was lulled asleep by the movement of the stroller. Instead of blueberries, Clare and I picked blueberry donuts and chocolate chip cookies. We enjoyed our snack in the shade and waited for the rest of the pickers to return. Jamie was excited about his big basket of blueberries. We ate lunch, fed the goats and bunnies, and all shared ice cream before returning home. This morning we enjoyed fresh blueberries for breakfast, and they were worth all the frustration of the day before.

I have had many moments like I did at the blueberry farm. Where things did not go as planned and I felt sorry for myself. Where I wanted to cry and scream about the unfairness of my life. Maybe some parts of my life are harder than others, but everyone has their challenges. I am not going to let my challenges get the best of me. Sometimes they will make me cry and scream, but they are not going to rule my life. I realize more and more with time and experience that my happiness depends on me, not anyone or anything else. I could have chosen to be miserable yesterday and ruin the rest of the day. Instead I made the choice to be happy, wipe away my tears, and take control of the situation. We ended up having a wonderful day, complete with swimming at a friend's house and dinner at McDonald's - what could be better!


Kerry said...

I hear you, Teresa. When I went to Louisville with Brady by myself, I completely lost it at the airport. Tom and Michael walked with me as far as they could, then I went through security and everything alone. Brady was in a carriage, but it had to go through the xray, so I had to have some strange man hold him while I folded up the stroller and put it through; on my second leg of the trip I just laid Brady on the ground to do it again. No one came forward to help. All I could think of was that "If Brady didn't have WS, I wouldn't be doing this..."

It's exhausting sometimes.

Anonymous said...

Teresa - since I know your humbleness (is that even a word??), I will simply say to anyone else reading this that you are the strongest woman I have ever had the honor of knowing! As was said about 2 years ago, God chose you (& Shawn) for this wonderful, yet challenging life with this precious child - Clare. I admire your calmness about the entirely stressful outing, and even though it began to look bleak, you "saved the day" for Clare, Simon & most importantly their Mommy.
You are admired more than you know, Teresa. Love to all of you, Aunt Joan & gang

Nancy said...

Boy, I know those kind of moments, although I don't have a new baby on top of everything. It's great that you can realize how frustrating things can be and then let it all go. I'm getting better at that, but it is still really, REALLY hard sometimes. Seeing you write it all down is therapeutic for all of us moms with challenges, special needs kids or not.

Thankfully, there seem to be more moments to enjoy than the ones where we feel like tearing our hair out!

Katie said...

Oh Teresa, I really admire your strength - i too often think that i have a choice to make the most of a bad situation and it seems easier to opt for the poor-me at times...
Good luck without the AFOs, it would be great if she doesnt need them much after all :)
love to you and your precious family.

Amy K said...

Oh, plans. My life seems to go much easier without them! Lighten your load, don't "Plan" to much now that you have three of those little buggers. Make memories happen at home(: aster14I know what you mean about feeling sorry for yourself, but just keep moving on and that pity will pass.

Every minute counts.... said...

Good for you! Taking a hard situation and changing it for the better. I know exactly what you mean about feeling like plans never seem to work out. I wish I could think as possitively as you, I usually sit and cry for a minute before I deciede to change my mood.

I would recommend Dr. Mervis, even if she has no great advice...if she tells you that you are doing a good job and on the right track you know she has seen enough WS kids that she is telling you the truth.


Aspen said...

I had one of these same moments just last weekend. The entire family packed up to watch a Rockies baseball game. While everyone found their seats with pure excitement...I was miserable and hot pushing Daven around in the stroller outside of the games view. The first 5 innings I was telling myself how much I hated my life! Then just like you said, I got over it. Daven with pure brilliant timing turned to look up at me and gave me a magnificent smile. From that moment on...I got over it and enjoyed the game with Daven.

Thanks for sharing. Like you said it sometimes doesn't always work out like we envisioned...but we can still make a nice memory.

Lisa R said...

I hate being overwhelmed and when it happens I seem to just start sweating all over the place....ther eis no way I could do it with more then the two I have.....

That picture is so very cute...My girls love blueberries...I am not looking forward to the airport alone with Tatum....I'll be soaked by the time I get to louisville :)

Nicole said...

I love your spirit, Teresa! You are such a wonderful mother and I just bet everyone always wants to be around you. I know I do and get my fix by reading your blog.

I have had my share of moments like those and always quickly pull myself up, shake myself off, and remember that we only have one shot at this.

The picture of Clare is darling. As Emerson gets older I am seeing more Clare in her.