"Monday Monday" Daybook

Outside my window … snow, snow, snow. Winter has finally come to stay in New Hampshire.

I am thinking … that Thomas the Train is the dumbest show. Why does Clare like it so much?

I am thankful for … car insurance and that the driver who hit my car last week actually had some. I am sorry I doubted him.

I am reading … City of Bones by Cassandra Clare. (And still finishing the other two books - now I have a downstairs book, upstairs book, and rocking chair/nursing book - such a geek.)

I am hoping … (selfishly) that Shawn chooses to drive three hours home from Connecticut tomorrow to drive three hours back the next day.

On my mind … whether or not it is vanity that I want to have my Lasix surgery touched up. Ten years post-surgery, I really need to wear my glasses full-time again, but I really don't want to. I sound like a little kid. I don't wanna! I don't wanna!

We’re learning … lines for the school play. Jamie has a small speaking role in The Emperor's New Clothes. Maybe one day Shawn and I will be able to get back into theatre.

Noticing that … I really need a Kitchen Aid Mixer.

Pondering these words … "The winding roads shall be made straight, and the rough ways made smooth." --Luke 3: 5

From the kitchen … Christmas cookies. We've already baked galettes, sugar cookies, and Russian teacake surprise cookies. Peanut butter cookies are next. All cookies from my childhood, so I am awash in memories of Christmases at my parents' in Rhode Island and Granny's in West Virginia.

Around the house … Violet is cruising everywhere now. Nothing is safe, and she has realized that if she stands on her tiptoes, she can reach even more stuff!

One of my favorite things … my laptop. It's great to be portable!

A picture I am sharing …

Simon and Clare challenge each other, cheer for each other, and love and hate like the best of siblings!

Blood Pressure Check

Shawn took Clare to the cardiologist this morning for a quick visit, blood pressure check, and EKG. Her EKG was normal and her blood pressure was 102/60, so that's all good. We have not noticed any change in her mood swings or sleeping habits, so we're going to continue Clare off her BP medication for another month and do another check then.

Thursday (Night) Daybook

Outside my window … our neighbors' Christmas lights across the street. They did a beautiful job, and it thrills the kids every night to look at them.

I am thinking … how funny is The Office! Love it!!

I am thankful for … the unseasonably warm weather today. We had a chance to play outside and go for a puddle and worm walk.

I am reading … At Some Disputed Barricade (still) but added The Shack by William P. Young (a recommendation from Kerry, which Shawn highly enjoyed).

I am hoping … that this does not turn into a winter of illness. Just when everyone was finally healthy, now Violet ran a 102-104 fever all day.

On my mind … what should I eat for a snack?

We’re learning … about the salvation story and how to prepare for Christmas in our hearts.

Noticing that … it's time for a trim.

Pondering these words … "A person's a person, no matter how small." --Dr. Seuss

From the kitchen … gearing up for Christmas baking. Today I made a Banana-Pecan Coffee Cake. A new recipe for me - two thumbs up!

Around the house … we traditionally decorate for Christmas on the First Sunday of Advent, so we have enjoyed our tree, Advent wreath, and Nativity this week. Now we need to work on our village.

One of my favorite things … when I am nursing Violet, and Clare snuggles up with us. She rubs Violet's head and says, "Hey there, little fella." (Where does she come up with this stuff?)

A picture I am sharing ...



I was scrapping photos from last summer and found this one! In so many ways, Clare is such a girly-Princess-girl. And then she's not...

Cardiology Callback

Clare's cardiologist called this morning to talk about yesterday. He was concerned both about Clare's complaint of left arm pain and her moodiness and change in sleep habits. He is treating them as two separate issues, even though he acknowledges the fact that Clare's complaint of pain could be a call for attention stemming from the mood swings. However, children with Williams syndrome can have pulmonary and/or coronary artery problems that present suddenly, and some of Clare's complaints match symptoms of a greater issue. (And, of course, she does have severe pulmonary stenosis, which was clinically stable as of two months ago.) Again, the cardiologist stressed that he does not believe Clare is having any vascular problems since she has had great echo and EKG results over the past two years, but he never takes any chances due to the nature of Williams syndrome.

The cardiologist also said that mood swings can be a side effect of taking beta blockers, but her former medication has a higher incidence of this side effect than her current medication does. So the chances are that she would have experienced this side effect on her other medication. However, she is on a higher dose now and, everyone is different, so we are going to trial her off her blood pressure medication for one week. If her mood swings improve and her blood pressure is good, we can continue trialing her off the medication for longer. If her mood swings improve, but her blood pressure is high, then she will have to go on something different. If her mood does not improve, then it's not the medication responsible for her mood swings, and he wants her back on the blood pressure medication, regardless of what her blood pressure reading is. (He would rather keep her on a beta blocker right now.)

So.... in a nutshell, we will see how Clare fares this week and go in next week for an EKG and blood pressure check. If there is something funny going on, the EKG should pick up an abnormality. I am so glad that our cardiologist is on top of this stuff! Sometimes I just want someone to tell me what to do so I can stop second guessing everything I do!

Anxiety Over Anxiety

Anxiety is common in Williams syndrome, but we have not really seen it in Clare. Until today. She definitely has her intense dislikes - fire trucks, fire drills, lullabies, soft Christmas carols - but it comes, she cries, they go away, she stops crying. Occasionally, if we're in the doctor's office or some place like that where she sees the fire alarm light on the wall, she'll ask if there will be a fire drill, and we will reassure her that there won't. But she doesn't obsess about it. She can move on.

I am not a psychotherapist, but it seemed like Clare became fixated on two events, and they kind of merged in her mind. At the end of school yesterday, one of her teachers jokingly asked Clare if she would miss her (meaning until school tomorrow). For some reason, this made Clare sad, and in her mind, she became scared. Then when she comes home, and we get ready for the end of the day and dinner, the reality sinks in that Shawn is away on business (the kids are used to having only me at home during the day, but at night, everyone misses Daddy even more!). So today, Clare cried on and off. She missed Daddy, her left arm hurt, her stomach hurt, her head hurt, her teacher scared her. It went on and on. She was getting to a point where she couldn't function. She couldn't eat breakfast, she couldn't walk upstairs, she wanted to just lay on the floor. I really didn't think she was sick, but she was acting so weird. Her anxiety was manifesting itself physically.

I had no idea what was going on and have never dealt with this kind of anxiety before. I made calls into the cardiologist and the preschool (covering all bases!), then tucked Clare, Simon, and myself into my bed for some PBS viewing. To bring this to the point - her preschool teacher confirmed that nothing had happened at school other than that one innocent joking comment. The cardiology nurse and I talked about her blood pressure med and side effects, so I am still waiting for the cardiologist to call back. And after an hour of vegging out, Clare was back to her normal sunny self and the rest of the day was great.

I've heard the stories of anxiety and Williams syndrome, medications, coping techniques, etc., but always kind of thought Clare wouldn't be like that. And maybe she won't, but maybe she will. I hope that this incident was just a freak thing and not a problem with her blood pressure medication or a preview of things to come. I know we will deal with whatever comes our way, just as we have for the last four plus years. I can still wish it all away!

Rainy Friday Daybook

Outside my window … pouring rain. I knew this unseasonably-warm, sunny weather would change. It reminds me that I need to enjoy each moment because life, like the weather, can change so quickly.

I am thinking … that I am finally tired of eating Halloween candy. I am in the mood for baking today.

I am thankful for … modern medicine and that my croupy baby slept a little better last night thanks to some oral steroids.

I am reading … At Some Disputed Barricade by Anne Perry (one of my absolute favorite authors and a book I have had for almost a year now waiting to be read).

I am hoping … that Russell on Survivor actually wins the whole thing. I was anti-Russell in the beginning, but I have to admire that guy now - one of the best players in Survivor history.

On my mind … that Advent is fast-approaching. Shawn and I agree that we want a peaceful, joyful Advent season. No frenetic shopping, running around, or other general chaos.

We’re learning … subtraction patterns (Jamie), how to write our name (Clare), counting past 25 (Simon), and pulling up and cruising (Violet).

Noticing that … my house is getting neater and neater every day!

Pondering these words … "If God can work through me, He can work through anyone." --St. Francis of Assisi

From the kitchen … as I said, I am in the mood for baking. I am thinking banana bread and pumpkin muffins today.

Around the house … we're clearing out space for furniture. My dad is bringing us my old childhood bedroom furniture next weekend. It will eventually be in the girls' room, but we need some space for it!

One of my favorite things … my Keurig.

A picture I am sharing …

Jamie in action in the classroom. He is so handsome in his uniform!

A Daybook

I read about this idea on a blog I follow and loved it. I love having my Clare's Journey blog, but I don't have the time anymore to be as faithful as I used to be. (Geez, why would that be?) So this is an easy way for me to stay connected and keep on recording moments of our life as it whirls around us. I am going to try to do this at least once a week.

Outside my window … it's a gorgeous, sunny, crisp November day. I have not set foot outside this house for an entire week now due to recovering from my kidney surgery. I am looking forward to joining my sister Christina (who with her baby Casey has been helping out around here for a few days) on the afternoon school pick-up rounds.

I am thinking … how blessed I am to have this incredible support system around me who love me, Shawn, and our children so much that they will drop their lives for a couple days to pick up ours.

I am thankful for … a hard-working, family-devoted husband who got up at the crack of dawn this morning to fly to Philadelphia for the day, but arranged his flights so he would be home in time to put the kids to bed.

I am reading … The Virgin Queen's Daughter by Ella March Chase. I love my historical fiction (especially of the Tudor period).

I am hoping … there is some way I can finish my Christmas shopping before Thanksgiving. Nine days left.

On my mind … all those children with Williams syndrome who are currently fighting for their lives.

We’re learning … that the family can survive without Mommy being on her toes for a while, although it does put a crimp in the laundry schedule.

Noticing that … I will never be a bikini model. Unless it's Frankenstein's bikini model. Why did they have to put one of my incisions right through my belly button?

Pondering these words … “I know God will not give me anything I can’t handle. I just wish that He didn’t trust me so much.” — Blessed Mother Teresa

From the kitchen … my deep freezer is stocked with all sorts of delectable dishes to get us through the next couple of weeks without having to cook.

Around the house … oh my goodness, it is a mess! But I am so grateful for Shawn, Diane, Leslie, and Christina who have kept it together for me!

One of my favorite things … listening to Clare and Simon play quietly downstairs, their imaginations running wild.



A picture I am sharing …


Those bright blue eyes, those cheeks, she is so lovable!