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.

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.

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.

Love,
Mommy and Daddy

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.

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.

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.

Taxicab Confessions

It's amazing the conversations you find yourself having (and overhear your children having) while driving around. Today's conversation revolved around two important topics of discussion - 1.) Would you rather smell like a skunk or a tomato?  and 2.) What kind of bug would you eat?

Answers - 1.) A tomato.... which then brought on sub-question a.) What if it was a rotten, 100-year old tomato?

2.) Various answers but Violet decided on spiders and Clare chose butterflies. The boys were indecisive. Apparently choosing which bug you would eat is a tricky choice. Especially if you have the option of dipping it into chocolate.

The Family That Soccers Together, Stays Together

As I have stated in other posts, spring months and sunny (and a lot of rainy!) weather brings spring travel soccer. As Shawn commented to me a couple of weeks ago, “I never thought we would be that family who drives 180 minutes roundtrip for a 45-minute game involving a bunch of 9-year olds.” But, yes, we have become that family. The kids are involved in other activities, but soccer does seem to consume the majority of our family time together.

Family friends are celebrating their daughter’s fifth birthday this weekend. However, Jamie is already committed to a two-day soccer tournament, and it came down to the option that if we wanted to do both, our family would have to split up. During the week, there is a lot of running around (and splitting up) to be sure that all the kids get to their activities, homework is done, and at least the younger children have a decent bedtime. So when the weekend rolls around, we try not to split up unless necessary and we spend the weekend as a family. After a particularly crazy week (Jamie’s school play week), Shawn and I decided that we would decline the birthday party invitation rather than dividing up all day on Saturday. My friend was very generous in her understanding and, when I explained about not wanting to split up and do separate activities on Saturday, commented, “I don't blame you for not wanting to split up events--it's a slippery slope!”

It is a slippery slope and who knows where the bottom is. We strive to eat dinner together every night as a family – which is very hard during soccer season. There are many afternoons when I find myself making sandwiches once again and loading up the cooler before I embark on the afternoon pick-up run. From school dismissal, we head to hippotherapy or speech therapy, and then straight to the soccer fields. We are usually the only family who comes in full force (and I do mean full force!). Maybe we seem slightly odd to the other parents, but this is one way in which we can be together as a family during a busy week. We eat our simple picnic dinner, Jamie does his practice, the other kids run around and play, and Shawn and I usually begin a heated Scrabble game on the iPhone (which six weeks later, I have yet to win one game).

As the kids get older, I know it will only get harder to find that quality time together as a family. But that just means we will have to become more creative. Maybe we’ll always be the only family who eats dinner together at the soccer field three nights a week. We just may look a little weirder when the kids are teenagers (but maybe I’ll have perfected my Scrabble game by then)!

The Season

I just finished doing Simon’s homework. (Gasp)

Before you judge me, Simon is only five and in preschool. And, in my defense, after a busy day of two doctor’s appointments with five kids, entertaining small children on a rainy day, babysitting a friend’s two kids in the afternoon, supervising Clare’s homework (which is an exercise in patience), doing dinner and bedtime solo while Shawn helped out at Jamie’s dress rehearsal, reviewing Jamie’s long-division homework once he returned home, and finally getting ready to end my “work day" by checking the calendar for what was on schedule for tomorrow, I saw that Simon (who had long since been put to bed) had homework as well… homework due yesterday. Homework that involved searching through magazines for pictures that began with the letter Z and cutting out said pictures. Homework that we had already done 25 times for 25 other letters (sitting at the table, diligently going page by page, sounding out words, then painstakingly practicing our fine-motor cutting skills). I figured Simon had already gotten out of the assignment what he was supposed to get out of the assignment. The kid knew all his letters at the age of two anyway. I decided to cut myself some slack in the Teaching Moments department (Mommy does not do your homework) and not insist Simon collect his letter Z pictures in the morning himself and instead turn this into one of Life’s Lessons – sometimes Mommy will do your homework if the stars line up in exactly the right way. And that is why I just finished thumbing through my recent parenting magazine and now have a little baggie on the kitchen counter with pictures of a zipper, zigzag, zoo, and zzzz’s (why is there never an article about zebras when you need one?).

Late spring is always a chaotic season in our house. It is crowded with end-of-the-year school projects and events, Jamie’s play opens tomorrow night, IEP planning and meetings, spring soccer ramps up, the ballet recital is in a couple weeks, and Jamie always seems to be hit hard during this time of year with allergies, headaches, and migraines (which on any day can send us revising our schedule depending on whether Jamie is in bed with a migraine).  At least this year, I am not dealing with swollen ankles and feet and backaches while waiting for a baby to be born. (The 11-month old baby who still has not even started crawling yet, which I know is very fortunate in a makes-my-life-easier kind of way. Mobile baby is not on my radar yet. Looks like Eliza is following in her brothers’ footsteps – no pun intended – in the slow-to-move area.)

On those days when I feel as if I am treading water and completing one load of laundry is an accomplishment, I’ve really been trying to find the quiet moments to reflect upon where I am in life and, more importantly, why. I think back to my life six years ago to another season when I felt like we were barely surviving day to day. But not because we had five active children and the packed life that comes with that. Because we had a baby who was critically ill. Who underwent five cardiac procedures in her first 11 months of life. Whose future seemed full of huge, scary unknowns.  A baby whose bedside I stood by helpless in the CICU on the most horrible night of my life while cardiologists, nurses, respiratory therapists, and surgeons threw around frightening words about codes and plummeting heart rates and external pacemakers and there was so much commotion and chaos in one shrinking room. A baby who I literally had to walk away from because I was only in the way, not knowing if she was going to live or die that night.

There are many days when I am at my wit’s end (and just want the Legos picked up off the floor before I scream), and I wonder if God did give me more than I can handle. But I remember that mother six years ago on that terrifying November night who, after two hours of unceasing crying and praying, realized that her prayers had changed from “Please, God, don’t let her die” to “Please, God, give me the grace to know Your love, the faith to trust Your plan, and the strength to do Your will.” And, although this season is chaotic for a different, much happier reason, my prayers today are the same.

Catching Up

Oh, to be faithful to my blog!  I try and I try, but life gets in the way!

We've had a whirlwind last couple of months, but I think I am finally getting the memo that life with a young family of five children is going to be a whirlwind. "When things slow down" never happens. I may even just start getting used to the idea that life in general with a busy family (no matter how big or little) is going to be a whirlwind! Here's what we've been up to in bullet points:

* 40+ hour road trip to take Clare to Louisville, Kentucky for her annual visit with Dr. Mervis. (And had the bonus of seeing my grandparents, aunts, and cousins in WV while we were traveling.) Other than a deer hitting our car (thankfully minor damage to our car - I don't think I can say the same about the deer), it was a great trip. Wealth of information from Dr. Mervis (and a new learning disability diagnosis of Specific Language Impairment) so we are armed for Clare's upcoming IEP in June.

* Lots and lots and lots of birthdays. Our family's birthdays are between the months of January and June, so we had small family dinners, hockey parties, movie parties, pirate parties, Hello Kitty parties, and are getting ready for Eliza's One Year Birthday Bash with her cousin Finlay (born 8 days apart) next month.

* Clare's Make-A-Wish trip to Disney last month. This has been the highlight of the year so far (and I can't foresee anything in the future topping it). There are no words to describe how magical the trip was for our family and especially for Clare. Going to Disney (and Universal Studios and SeaWorld) is amazing enough, but doing it as part of Make-A-Wish is fabulous. Red carpet treatment everywhere we went. Clare's Wish to see a princess in her castle came true. Clare and Violet were able to go to the Bibbidi Bobbidi Boutique and be made up as princesses. Jamie and Simon participated in the Jedi Training Academy at Hollywood Studios and even got to meet Darth Vader and receive signed light sabers. Shawn and I got to enjoy a family vacation without worrying about money, standing in lines with bored, anxious children, and planning every last detail. It all just clicked. And we had an amazing time. Make-A-Wish is such an incredible foundation, and I am so grateful to all the donors, volunteers, and staff who work so hard to give children like our Clare their Wishes. They know how a diagnosis and medical conditions such as Clare has truly affects the entire family, and they strive to take care of all of us.

* End of the school year hoopla. Why do I always manage to forget how crazy everything becomes at the end of the school year? Spring soccer practices and tournaments (and now Simon plays as well as Jamie), ballet lessons, rehearsals, and "Cinderella" recital (and now Violet dances as well as Clare), extra rehearsals for the upcoming school drama club production of "Pinocchio," and planning what's going on for school next year. Simon starts kindergarten in the fall. We are formulating Clare's new IEP for her full-day first grade year. And we're always evaluating what's best when it comes to our children's education.

* Our endless routine outside of school of allergy shots, hippotherapy, speech therapy, nephrology appointments, endocrinology appointments, cardiology follow-ups, blood work, orthopedic visits, orthotic fittings... and that's just for Clare and Jamie! I am incredibly thankful that over this past winter and early spring we have had no major illnesses run through the house. (I better not be jinxing myself now!)


There are my bullet points, and now my oven is beeping to let me know it's time to start making cake pops. Simon's special day at school is on Monday, and ever since he went to a birthday party in March where cake pops were served, he has had his heart set on cake pops for school. So cake pops it is!

Happy 5th Birthday, Simon!

Dear Simon Joseph,

It's hard to believe you are 5 years old already! I clearly remember the moment I first saw you after a long, drug-free labor! You were born shortly after the calendar turned to May 1, my May Day baby, born on the Feast of St. Joseph the Worker. And you have been a joy in our lives these past five years. Even though you are so grown-up at five years old, you are still my snuggly boy. I can always count on you to make sure you give me a big hug and a kiss on the cheek every night before bed. You still ask to be tucked in. You love snuggling next to us to read books. You are more reticent than your other siblings and remind me a lot of how I was as a child (and as an adult!). As my middle child (since I am the middle child in my siblings), you have a special place in my heart.

We love you, Simon!  Happy Birthday!

Happy Birthday, Clare!

Where have the past seven years gone? They flew by with days of smiles, days of tears, days of joy. You are so beloved, our sweet firstborn daughter. You have proven from the moment you were born that you are a fighter (you were so tiny in your daddy's hands!) and can accomplish anything you set your mind to and your heart on. Happy 7th Birthday, Clare Bear! We love you so much!

Walk for Williams Syndrome

On May 12, we are walking as a family in the 2012 Annual Walk for Williams to benefit the Williams Syndrome Association (WSA). We are walking for our own Clare Bear as well as the thousands of other children and adults affected by Williams syndrome in our country.

         

When Clare was diagnosed at 6 weeks old, we were immediately connected with the WSA. The WSA is the most comprehensive resource for people and families living with Williams syndrome as well as doctors, researchers and educators. The WSA provides resources, support and the latest medical information to help families throughout their child's life. By sponsoring us in our walk, you will help the largest organization dedicated to improving the lives of people living with WS. By helping the WSA, you are helping Clare.

Support Clare in the Walk for Williams   Please click this link to help us raise money!

Cath Results

Clare did great during her catheterization on Wednesday. We are breathing easier having it behind us as we move forward in what's next for Clare. I always have this feeling that we've cleanly jumped over another hurdle and are gearing up for the next one. But we do get some recuperation time in between!

Clare was such a good sport Wednesday morning waiting for her cath to begin. She was scheduled for 9:30am, so she was cut off food at 11pm and water at 7:30am. However, Clare was scheduled second case and the first case ran late. So Clare did not end up entering the cath lab until noon. She never once complained about being hungry or thirsty and was in fairly good spirits. Since the cath did not begin on time, the anesthesiologist started Clare on IV fluids (at our insistence) while she was still awake. (We have learned from experience that anesthesiologists do not like being told how to do their job, but as long as they keep our child safe, I don't need to like them personally!) They gave Clare a Valium before inserting the IV because she was still traumatized by her lung scan injections from the day before. I don't like seeing Clare so upset and wished she could have already been under anesthesia when they started the IV, but dehydration during a cath while under anesthesia is a huge risk for children with Williams syndrome. So having fluids on board since her start time was being delayed was the safest option for Clare.

As parents, the nerves will never go away, and we will never get used to that horrible moment when you simply have to walk away from your child and literally leave their life in someone else's hands. It's been over four years since Clare has been in the cath lab, but all the old familiar feelings came rushing back. Shawn and I walked Clare down to the double doors before the cath lab, gave her kisses, then went back to the waiting room.

The cath itself was fairly short compared to other caths Clare has undergone. Coming out of the cath, Clare had a comparatively "easy" recovery. In the past, she's had high fevers, vomiting, blood transfusions, trouble with the pulses in her legs, excess fluid and puffiness, high blood pressures, you name it. This time, she looked great, her blood count levels were good so she did not need a blood transfusion (first time that's happened - a sign she's growing up!), and she had no fever or vomiting. She was grumpy the night after and complained of ear pain (she had an ear infection going into the cath), but her ears actually looked fairly clear. Clare had an IV line inserted into a vein in her neck so her ear pain could have been from that as well. Coming home, she had a slight fever and seeping from one of her groin wounds, but those are slowly resolving as well. Today, she is pretty active and feeling good. She will be able to return to school on Monday with restricted activity.
The cath was both diagnostic and interventional. Clare's pulmonary stents were dilated open some more (there was some tissue build-up from the past four years), and the stents still have some growing room. Which means we probably have a couple more years before we have to discuss options for stent replacement. The cardiologist also dilated two of her branch pulmonary arteries, but that was the extent of the dilations. Four dilations is a huge improvement over Clare's last caths in 2007. During those two caths, she had over 15 dilations combined. Her lung scan results post-cath showed improvement in the balance of flow between the two lungs and her systemic pressures in her heart were improved as well. That's the fantastic news!

The not-so-fantastic news is that Clare's ascending aorta and aortic arch has narrowed again. Her echo results over the last four years have shown a zero gradient across the aorta, which is perfect. However, the cath showed that was not the case. Her gradient is actually a 25mm gradient. Without going into the complicated details about gradients and pressures, the basic news is that when Clare had her aorta repaired via open heart surgery as a baby, the gradient in her aorta was 50-60mm. So she is halfway to that point again. The problem is that, unlike the pulmonary arteries, unless the aorta has a distinct "pinch" somewhere, the cardiologist will not balloon-dilate it in the cath lab. And Clare's aorta is narrowing all the way up and through the arch again. It will require another open heart surgery to repair it. Unfortunately, we have no way of knowing how long Clare's aorta has been narrowing again. The last time it was precisely measured was during her September 2007 cath, so it could have been slowly narrowing over the past four and a half years or it could have started six months ago. So we do not know how quickly this is progressing.

We have not gone over these results with Clare's personal cardiologist yet, so we will have lots of questions for her at that visit! Thank you to all for your prayers and supports.

Cath is On

After a stressful couple of weeks with illness in the house among various children (ear infections, coughs, colds, RSV, vomiting), we are finally in Boston and ready for Clare's cardiac catheterization tomorrow. We will not be 100% positive until tomorrow that the cath is actually happening, but we're ready to go.

With Violet and Eliza being sick the last week, we have been so careful in keeping Clare away from them, diligently washing hands, purell everywhere! We didn't want to take any chances with Clare coming down with an illness that would force us to postpone her cath. We thought we were doing good until Clare presented with a slight fever and runny nose over the weekend. I took her to the pediatrician's on Sunday and, sure enough, she had a double ear infection. I thought for sure the cath was off. But after a few days on antibiotics, Clare is definitely not feeling sick in any way (more energy than her exhausted mom, that's for sure!). The team at the hospital said an ear infection alone would not be cause for postponement, so we came on down to Children's Hospital today for her pre-op workup. After a long day of tests and labs and meeting with doctors and nurses, she is cleared for her cath tomorrow morning. One ear is still slightly red, and she does have a small cough, but as long as she is fever- and congestion-free tomorrow, she is good to go!

The plan during the cath is primarily to take a look around Clare's heart and see what's been going on in there over the last four years. The doctors are fairly sure she will need some stent and vessel dilations done while they are in there. The same interventional cardiologist (who is the cardiologist-in-chief here) personally does Clare's caths, so he knows her, knows her vasculature, knows Williams syndrome, and we know she is in the best hands. Depending on the extent of work done will determine what Clare's post-op plan is (one night or two nights in the hospital). We pray that all goes smoothly, and she is discharged on Thursday.

Clare was such a brave, patient girl during the six hours of pre-op today. The worst moment was when she needed her injections for the lung scan and the blood draw. Now we're resting at the hotel for the evening since we've all been up since before 5am. One of the good things about Clare being older is that she is the second case tomorrow which means we can be a little more leisurely in the morning before heading over to the hospital. Right now, her cath is set for 9:30am. Thank you everyone for your prayers!

Happy 9th Birthday, Jamie!

Happy 9th Birthday, Jamie! You light up our lives in so many ways - from your infectious smile to your hard work and achievements in school and soccer to your love of jokes to your concentration and competitive nature playing games and sports to your consideration of your younger siblings and helping out Mom and Dad. We are so proud of the young man you have become! We love you!

Happy Birthday, Violet!

Dear Violet,

Happy 3rd Birthday!

Over the past year, you have transformed from a toddler into a big girl.
From a crib to a bed.
From two-word phrases to conversations that have no end.
From diapers to Tinkerbell underwear.
From Mommy doing everything for you to assertions of independence and insistence on doing it all yourself.
From dancing in princess dresses in the living room to beginning ballet.
From being my baby to being the big sister.

We love you, Violet Grace! Happy Birthday to our big 3-year old girl!

The New Year Begins with a Bang

We started out the New Year with a cardiology appointment. Clare has turned into such a great patient for these appointments. She lays quietly for her blood pressure readings, EKG, and echocardiogram and does everything the techs ask her to do. The boys were at school and Violet was at a friend's house, so Clare loved having the solo time with Mom, Dad, and baby Eliza.

The time has come for Clare to have another cardiac catheterization. I knew the cardiologist was going to utter those words (especially since she and the Boston cardiologist have been warning us of this for about a year now). The cardiologist could not get great readings from the echocardiogram as to exactly how Clare's pulmonary arteries and stents are functioning, so the safest route now is to obtain more accurate date by doing a cath. I do feel blessed that Clare has been able to go FOUR YEARS without a cardiac intervention, but I am also getting the butterflies. During the last cath, Clare went into atrial tachyarrhythmia and had to be cardioverted back to a normal rhythm. And the cath before that, she had a pulmonary stent replaced and ended up in the ICU. But I am a dweller on the positive (for the most part!). Clare is four years older and stronger. Her risk of dehydration and blood loss requiring a transfusion are lower. Her blood pressures have been great for over a year. All in all, she has been fairly healthy, so we are hopeful for a successful outcome to this cath, even if it does involve balloon dilations or additional stent placement.

The catheterization is set for February 1, so we'll be at Children's Hospital for a minimum of three days. Clare is starting to show some anxiety about the upcoming hospital stay. She has some memories of her hospital stay a year ago when she underwent dental surgery (such as she remembers the mask with the "sleepy medicine"), but has lots of questions and comments about "fixing her broken heart," as she puts it. We're already seeing that an older Clare will be a whole new experience at the hospital.

The Journey

Happy New Year!

Being on the other side of the preparing-for-Christmas season (otherwise known as Advent), I finally have a chance to sit, catch my breath, and reflect on the last few weeks. We had a wonderful Christmas (celebrating over three days in three different states) and have enjoyed the last week simply hanging out at home enjoying each other's company (and, yes, the zillion Christmas presents the kids received). It has also been a prime time to finish Violet's potty training. Now I have to get her trained to wear pants again because we have been letting her run around in just her underwear all week. At least it was a success!

Advent is always part-joyful/part-stressful for me. Like most Christian parents, I struggle over that balance between the trappings of the outward exuberance and secular fanfare of Christmas and the inward joy and reflection of celebrating Christ's birth. I think Shawn and I did an okay job this year with the Advent season. I always believe we can do better (as in less parties, less pre-Christmas gratification, and less snapping at children because the cookies aren't turning out the way they should), but I also know we are leading our children down the right path when it comes to the true meaning of Christmas. The "Jesus stocking" was full of good deeds, the kids looked forward to the lighting of the Advent candles and the singing of carols and prayers each evening, and we gave of ourselves both in time and materials (singing at a nursing home, creating prayer cards to hand out, buying gifts for giving trees at school and church, donating food to the soup kitchen). Christmas is probably the #1 season of the year when I am so aware of the blessings in my life and all the goodness that God has given us as a family.

A week before Christmas, I accompanied Simon to his preschool Advent party. As we worked on crafts together, we found ourselves seated at a table with a particular classmate of his who has a . . . shall we say . . . overbearing mother. After nagging at her preschooler over his sloppy handling of the glue and foam angel wings, she snapped at him, "Oh, just let me do it." He then spent the next ten minutes fidgeting on his chair, staring off into space, and experimenting with how far he could bring his foot over his head while she focused intently on gluing each piece exactly perfect, straightening her son's photo on the ornament, then carefully applying glitter decoration. When completed, she exclaimed over her flawless ornament, "Now I can always remember this year at preschool!"

Following this incident, Simon and I took our "very obviously made by a 4-year-old" ornament and moved to another craft table, where we were seated with his main teacher. She was telling me how Simon told her about our upcoming Make-A-Wish trip, and she was interested in hearing more about Clare. I shared a bit, and we moved onto discussing Simon and his love of letters. I told her that Simon desperately wanted to learn how to read and has asked me frequently if I could teach him. And how I would love to teach him and would be so proud of him if he learned how to read at four years old, but that it would also not bother me or worry me whether he learned now or not. I ended with, "If there's one thing Clare has taught me, it's that children will do things when they're ready, and I just have to be there to support them and guide them in whatever way they need me to."

These two encounters back-to-back really got me thinking about how I live my life with my children. Am I always looking to what's next? What we've accomplished? Where we're going? I felt bad for that mom who had her perfect angel ornament which was really no reflection on what her child was like at four years old. I felt bad that she missed the point of doing the craft with your child, not for your child. We have learned so much in these past almost-nine years of parenthood. One of the things that Clare in particular has showed us is that the journey is just as important as the destination. Over the final weeks of Advent and Christmas, and now as we begin a new year, my Number One Resolution is to remember that - live the journey. Be there in the moment with the ups and downs. Focus on what I am doing right now in my life. What's going on in my home with my husband and children. What we are experiencing, whether it's good, bad, or in between. We'll get to our destination, some way or another. Live the journey.