Saturday, October 05, 2013

We've Moved to Caring Bridge

We have so many people praying for Clare and asking how she's doing that I decided to start a new site for those who want to continue checking in with us. Caring Bridge is easier for me to manage so please visit us over there at Visit Clare Bear

Wednesday, July 11, 2012

WSA National Convention, Part 1

The biennial national convention for the Williams Syndrome Association was held in Boston this year. We heard this news two years ago at the 2010 convention in St. Louis - our first convention after five years on our journey with Williams syndrome.

That convention two years ago was overwhelming, wonderful, informative, and exhausting all at the same time. We planned a two-week road trip around the convention so we could drive vs. fly to St. Louis (stopping to visit family along the way), and the travel alone was a big part of our convention experience. I know that arriving at the convention after a week on the road did not help our feelings of exhaustion! However, the friends we met (some whom we had only known online before the convention), the doctors and experts we heard speak, and the information we gathered was invaluable. So when it was announced that the 2012 convention would be in Boston, we were thrilled.

We decided to make a mini-vacation of the convention and stay in Boston at the gorgeous hotel where the convention would take place. Jamie had loved his off-site day camp experience in St. Louis, Clare and Simon had enjoyed their hotel camp, and Violet had survived hers (being only 17 months old and never really away from mommy before then), we wanted to give the kids the chance to go to camp again plus have the convenience of not having to drive in and out of Boston every day. I booked our hotel reservation six months in advance to be sure we had our two connecting rooms for our family of seven!

As the convention grew closer, however, Shawn's job situation changed, he began looking for a new job, and finances grew tight. At first, we discussed paring down on what we could do at the convention, maybe canceling our hotel reservation and braving the daily commute, or skipping it all together. Did we really need to go to the convention this year? After all, New England is such a small, densely-populated region that we are fortunate enough to have one or two Williams syndrome gatherings every year within a 1-2 hour drive of our home. Clare has a fabulous team of doctors (many right in our city), and we are so close to Children's Hospital Boston for her extended medical care. We certainly do not feel disconnected in any way from having a community of support around us.

We eventually made the decision that the convention was very important to us, and we did not want to skip it. We also looked at how we could make it work financially without driving to and from Boston every day. We knew Jamie and Clare (who was old enough this year) were excited about going to the day camp (swimming, fishing, arts and crafts, s'mores, what's not to be excited about!), and while the younger children may not have been as excited about the hotel camp (not really knowing what to expect since they did not remember St. Louis), all of our kids love the adventure of staying in a hotel and were looking forward to a few days in Boston. We figured it out, and we made it work! And I am so glad we did.

Sunday, June 24, 2012

Girls' Weekend In

As Shawn and the boys prepared for their annual Father-Son Camping trip with our church, I couldn't help but think it was slightly unfair that there was no comparable girls' trip. The boys look forward to their next camping trip all year long and, as it gets closer and the preparation ramps up, excitement (and noise and lots and lots of gear) fills our house. Shawn has the Official Packing List attached to a clipboard and, as space in the mudroom and garage shrinks, the Official List is populated with black cross-outs. This is purely a boy affair. They handle all the planning, shopping, packing, and loading of the van. (Which means the three girls in their three car seats are squeezed into the tiny backseat of Shawn's little car.) The only thing the girls are responsible for is staying out of the boys' way. (And fielding the occasional "Is there any more bug spray?"-type questions.)

The night before departure, Shawn asked me what we were going to do all weekend. I hadn't thought of it. I had been so caught up in simultaneously A) trying to be helpful in any way I could in the preparation process and B) staying out of the way of the preparation process that I had not looked beyond when the three boys finally drove away and took all the chaos and noise with them.

I wondered what would we do? I had no activities planned for our 48 hours of "girls-only" time. The only thing we had scheduled was Eliza's one-year check-up (complete with shots and blood work, which was the one low moment of our weekend for all four girls involved!). Then a fellow friend who was also going to be "boy-less" for the weekend due to the camping trip asked if we wanted to get together one night for playtime and dinner. Sounded great! So we now had two things on the itinerary. But while the boys would be hiking, roasting s'mores, river tubing, watching outdoor movies, biking, and doing all kinds of fun things, I started to worry that the girls would feel slighted and left out being at home with mom with nothing planned.

Turns out there was nothing to worry about.

Clare had only finished school on Thursday. So come Friday, once the boys departed and Violet and Eliza went down for their naps, Clare was so happy to simply be at home. She played quietly with some toys, we did iSpy together on the computer, read stories, and created painted rocks (Clare turned hers into "Hot Lava Bird"). Then once naps were over, the girls all played in the pools. This was all they really wanted to do. Have the two kiddie pools ALL TO THEMSELVES. There was nobody squirting them in the face with Super Soakers, nobody running and jumping in causing tidal waves that empty the pool, nobody hogging all the space with boogie boards that are really too big for a kiddie pool. Clare and Violet played "rest time" in the pool and simply relaxed. (To be fair, the girls loaded the pool up with the boogie boards, too, but in a relaxing way. Or that's what they told me.)

Once Saturday dawned, the girls were eager to accompany me to the grocery store. We took our time and spent two hours going up and down the aisles. Back at home, we painted our toenails and fingernails ("Cinderella blue" and "Sleeping Beauty pink," I was informed), put on a puppet show, played princesses, played tea party, sang songs, and read more stories before naps and our evening with friends (which involved a lot of dress-up, lip gloss, and putting on a recital). I didn't need to have a million things on the schedule. The girls (and I) enjoyed our quiet weekend at home.

Now it is minutes before those rowdy boys will pull into the driveway. Although I loved our girl time, and it was definitely not as frenetic when it came to the energy levels and noise volume, I did miss them. It is a completely different dynamic in the house with the boys missing. It was lovely to have a break from the testosterone for a couple days but it will be even lovelier to have our family back together again.

Thursday, June 14, 2012

Happy First Birthday, Eliza Marie!

Dear Eliza,

Happy 1st Birthday, baby girl!

Babies are a blessing, but you especially have been an enormous blessing in our house. From the moment you were born, you captivated the other six members of this family. In the hospital, your siblings fought over who would hold you first. Once we got home, we had to set rules about how often you could be kissed. There is literally no limit on the amount of love you bring into our lives!

You are my sweet, snuggly girl. I am sad that your first year has already gone by, but it is fun to watch you begin to explore your surroundings now that you have figured out how to scoot around.

We love you so much, Eliza Marie. We cannot imagine life without our girl.

Mommy and Daddy

Wednesday, June 06, 2012

Having Character

It is Spirit Week at Clare's school. Each day has a theme, and the children are encouraged to dress according to the theme. So far we've done Spirit Day (dress in school colors), Twins Day (pick a friend or sibling and dress alike), and today was Character Day.

Being the ultra-organizer that I like to think I am, I usually lay out the kids' clothing the night before so getting everyone ready in the morning is easier. Yesterday, however, went from a quiet catch-up-on-chores day at home (kids napping, laundry, baking and cooking) to chaos when I had to unexpectedly pick up Jamie from school in the middle of the day due to a migraine. This entailed waking small girls up from much-needed naps to which they refused to return when we came back home. Jamie's migraines often lead to bouts of vomiting (which this one did) and then there were the overtired 3- and almost 1-year olds, so the house was not the serene place I envisioned when I thought out my day in the morning.

As Clare was taking her evening bath, I remembered about Character Day. I went in to ask Clare which character she wanted to dress as, and fully expecting the answer to be Cinderella (over the past four years, Clare has dressed as Cinderella for the last gazillion events that require some sort of dressing up - Halloween, All Saints Day, Character Day last year, Bibbidi Bobbidi Boutique, Make-A-Wish events, you name it, she is Cinderella), my follow-up question was which Cinderella dress did she want to wear (of course, we have three). So she stopped me in my tracks when she answered, "Eric Carle." Eric Carle? The author? As in The Very Hungry Caterpillar guy?

Clare currently has a fascination with Eric Carle so I should not have been that surprised. She "calls" him on her play phone. She talks about him. She pores over his books. And now she wanted to be him. I knew she would become quite upset if I told her that Eric Carle was not technically a character (who knows? Maybe he is.... I've never met him), so Shawn immediately pulled up a photograph of Eric Carle so we had a visual to work with. He is typically photographed wearing dark clothes, has glasses, and a beard. Since it was past 7pm and we had one kid in the bathtub, one kid sleeping off a migraine, and three others freshly-bathed and pajama-ed waiting to go to bed, we had to work with what we had.

So voila.... introducing our Eric Carle.
No gray stick leftover from our theater days so we had to forego the beard. Clare was THRILLED to be Eric Carle today!

Clare has matured so much over the past year. (The glasses also make her look more mature. They are not really her glasses, but an old pair of mine that we popped the lenses out of.) The fact that she was ready to leave Cinderella behind (even if only for today) and put some thought into her choice stunned me. The knowledge she soaks in at school is amazing. I was speaking with her speech therapist just yesterday about Clare's growth and potential. You never know what lies in store for your children, and you do what you can to mold them in a positive way. When you have a child with Williams syndrome, there is even more uncertainty of over what the future holds. Many of those typical rites of passage you can foresee for your other children most likely will not ever happen - driving a car, going to college, having a career, getting married, having children. With all the unknown, all you can do is trust in God's plan.

It is fascinating to watch your children develop into the people they are meant to be. Becoming Eric Carle was the next natural step in Clare's metamorphosis.

Saturday, June 02, 2012

Don't Eat Me Please!

I was enjoying a relaxing shower when I spied the BIGGEST spider known to man in the shower.

Saturday morning is the one morning of the week when I can take a leisurely shower. Saturdays are lazier for us, and this morning, Shawn had left to take the older girls to ballet, the boys were playing the iPad, and the baby was down for an early nap. It was a luxury to be taking a shower with no one else in the bathroom (as all moms with young children can attest, this is a rare gift). I was about one-third through my shower with a head full of shampoo when I spotted the beast in the corner.

So I exaggerate slightly on the spider's size, but it truly was one of the biggest spiders I have seen in our house - almost the size of a daddy long-legs. It was just hanging in the corner between the shower head and the shelves. I eyed it for thirty seconds to be sure it was not moving, then continued rinsing my hair. Checked the spider to be sure it was still not moving, washed my face, checked the spider, applied conditioner, checked the spider, IT DROPPED. I admit, I screamed! I jumped out of the shower (thankfully we have a walk-in shower or else I probably would have plummeted over the side of the tub in my haste to distance myself).

I am not afraid of spiders (or bugs) but sharing my Saturday shower with one was not going to happen. I always tell my children they are not allowed to kill bugs outside because that's where the bugs live. But when the bugs invade where we live, we are allowed to dispose of them. So that's what I did. Grabbed a tissue, squashed the spider, and flushed it away.

I finished my shower in solitude, but it was not the same. Because I knew in the far corner of the ceiling, I could see another fuzzy brown shape just waiting to get me.

Wednesday, May 30, 2012

Life in (Parentheses)

Parentheses:  "Parentheses are used around text that adds extra information to what has gone before." (Encarta® World English Dictionary)

I love parentheses. When I review whatever I've written, I notice that I use parentheses a lot (in fact, in my best New England-ese, a wicked lot). These are my explanations, my sidelines, my back story. I am not always a "you get what you see" kind of person, so I feel like, as a person, a lot of what makes me who I am is in the parentheses. And there are times to share that and times to keep it to myself.

This morning at Target, I just had my two little girls - Eliza was properly buckled in the seat in the front and Violet was riding inside the back where the items go (and, yes, I know there are big no-no signs about that, but this was a quick trip - okay, not exactly a quick trip because what trip to Target is a quick trip? - and I need to figure out the proper way of using parentheses in my parentheses). The point is I felt Violet was completely safe because she always stays seated and loves to organize my items inside the cart (and I was planning on only getting a few things).
Not our Target trip, but my sweet girls at the grocery store

A woman shopping alone commented on "how cute" Violet and Eliza were (and they are!) and asked if they were about two years apart (which they are). She reminisced about how she remembered those days and reminded me (as I have been reminded a gazillion times) that it goes so fast. I smiled in agreement with her and murmured, "I know, I know." She went on to say, "I know it goes by so fast because my two children are also two years apart and they're already 5 and 7. And now here I am, shopping alone. I miss them so much." Five and seven years old? And you miss them so much and are now forced to shop at Target alone? Where did they go? Work camp? MY oldest is 9 and, trust me, I am fully aware of how fast it goes. In fact, I think about it often when I look at my 9-year old that I cannot believe he has already been on this earth for nine years. And that's gone by so fast. And that in another nine years, he will be GOING OFF TO COLLEGE! And that freaks me out. (That's not what I said, though, that's what went through my head.)

This mother looked at me and probably thought of me as the young mom just starting out.  She probably DID think fondly to when her children were 1 and 3 and would ride so sweetly in the Target shopping cart together. (And, trust me, I know that is not such a pleasant experience when they are 5 and 7.) She probably felt that mother's ache to have them small (or small-er) again and carting them around Target instead of dropping them off at school every day where who knows what was going on in their day. She probably did have moments during her much-quieter day when she missed them intensely and looked forward to the school dismissal bell so she could gather them back into the safety of her arms again.

So I kept my dismissal of her advice "oh no, these are my number 4 and 5" in the parentheses in my head. I didn't lie, I just didn't want to ruin her moment. Because that mom is at a place where I am not yet. My days are still full of little ones, and my heart will ache, too, when that time is done.

Hypothetical Humiliation

Do you ever imagine what could be the worst punishment for your child? Not in a truly child-abuse way such as locking them in a cage in the basement, but a consequence that your child would just despise. Something that would really stop him in his tracks when the next time rolls around.

A certain child of ours loves to argue. About anything and everything. Drives me nuts. I allow my children to express their "opinion" (if done respectfully) and do not mind if they ask for an explanation to a decision or command (sometimes), but arguing for the sake of arguing is not tolerated. And oh how he loves to argue! He is the cliche that if you said the sky was blue, he would argue it is green (or, more truthfully, argue that it was a slight shade of blue-gray with some white clouds). So about a year ago, we instituted his "arguing strikes" - a piece of paper taped to the fridge where we tally mark every time he argues. When he reaches five tally marks, he loses a family activity (backyard bonfire, friends' birthday party). We didn't want it to be a foregone conclusion that he would always be losing an activity, so we set a "redemption goal": if he survives an entire day without arguing, his slate is wiped clean. This has proven to be extremely successful. Usually just the physical act of watching us draw a big black tally mark on the paper is enough to remind him to close his mouth and consider a better way to communicate with us. But we have reached that final faded horizontal slash on the chart a couple times, and he does not like the consequences. More often than not, though, he redeems himself. The chart worked so well for a while that we eventually removed it from the fridge. A reminder not to argue sufficed.

Lately, however, this child has returned to arguing. And, once again, he argues about anything and everything. So tonight, we told him that the arguing strikes would be going back on the fridge. He begged, pleaded, cried, ARGUED! that he didn't need the strikes and would stop arguing. He finally admitted he didn't want the strikes on the fridge because his friends made fun of him about it. When we asked him which friends even knew he had the chart, he named one friend (and, yes, I do remember actually having a conversation with this person when they spied it in the kitchen and asked me what the paper was for, and, yes, I could see this friend saying something to him about it - a friend who probably does their own fair share of arguing at home!). Regardless of his pleas, we told him the chart was going back up.

Later that night, I was trying to think of a way to impress on my arguer that we were serious. So I came up with this... Shawn said it's mean, but I figured that if my child was worried about what his friends would say, maybe he would actually work on arguing less. Besides, I couldn't talk Shawn into renting a billboard (and the logistics of getting the big black tally marks up there were complicated), and that's really mean.