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Innocence

I hope you always find unbridled joy in life.

I hope you never grow too big to climb into my lap for snuggles.

I hope you always wake each morning eager to see what the day brings.

I hope you never feel that you are insignificant or worthless.

I hope you always spread your infectious charm to those around you.

I hope you never stop coming up to me and asking, "Hug me?"

I hope you always know how much you are wanted, treasured, and loved.

Spring Fever

It's so cliche, but we really have spring fever over here. It's been (knock on wood) a little over a week since our last snowfall. The snow is almost completely gone from our front and back yard, and, yesterday, Jamie and I raked up the last of the leaves and uncovered our sprouting daffodils. We've spent the last three evenings grilling, taking walks, and getting Jamie started on riding his bike without training wheels. Jamie is signed up for baseball at the end of the month, and he is thrilled to practice catching and throwing with Shawn in the evenings now. I am a little wary of this new phase we are entering - Organized Sports. I have always felt very strongly about sports (or any other activity) not running our lives. Jamie is only 5 years old, but it's amazing what is out there for kids these days. And the amount of time and commitment involved. A friend was telling me about her daughter wanting to do cheerleading and, in one month, it is almost every single night. And her daughter is only 5 years old! Even Jamie's baseball is going to be one night and one weekend afternoon per week. To me, that is the max I will allow on one activity. I am cautious about entering the stage of being a "baseball mom."

Clare is into her second week of preschool now. She has done remarkably well. I am thankful my kids are fairly adaptable children. Clare is eager to see her teacher in the morning and walks in with Miss Pam without a fuss. She is always happy to see me or Shawn when we pick her up, but her teacher reports that she is enjoying herself. My one concern is that when I picked her up yesterday, she was exhausted. It was her day of OT and PT, so that may have contributed to her fatigue. But her face was ashen, and she just looked terrible. Normally, we go right home from school, do lunch, and have a nap. But Simon had a doctor's appointment (yup, another eye infection and fluid in his ears - no ear infection yet), so we were still out and about. By the time we got home, Clare was a wreck. We're obviously going to keep an eye on it for now.

Additional note - So, of course, I started writing this post mid-week and life takes over. Now it is Sunday evening and I am finally getting around to finishing it. Baseball is officially starting this week, and both Jamie and Shawn are super-excited. Our yard is finally snow-free. Clare LOVES to play outside. It is a new experience for her, and she is thrilled to walk around the yard, pull moss off our stone wall, draw on my car with sidewalk chalk, and repeatedly go up and down the ramp to the shed. I talked with her teacher on Thursday about Clare's extreme fatigue after school on Tuesday. Her teacher will make note of it as well, talk to the PT, and see how Clare does this coming Tuesday. Simon's eye is back to normal, and we avoided another ear infection.

We spent the afternoon at the beach today. It was extremely windy right down by the water. Jamie, Shawn, and Simon walked along the ocean's edge, while Clare finished her nap in the car. Once she awoke, we joined them. Clare hated the wind! Her new sentence that she now says about a thousand times a day is, "Me no like it." (Her language skills have exploded, but we'll save that for another day!) As I carried Clare back from the ocean to the nearby playground, the wind was whipping wildly around us. She yelled the whole way, "Me no like it! Me no like it!" I did feel bad for Clare because she really does not like the wind, but she was also making me laugh so hard! We ended our afternoon frolicking on the playground then home to pizza and wings. I love our lazy weekend days.

Scenes From a Dance Party

American Idol Rewind

Randy: Awright Dog, Listen Up...(Applause, Applause)..Awright.Dude Listen up...That was HOT! The Clare Bear was burning it up up there, Yeah Dog you Rock!

Paula: Clare, let me start by saying you are beautiful and you look great up there. Clare what I love about you is that you are a free spirit and know exactly who you are. You really feel the music and deliver it in so many different colors. You are already a SUPERSTAR!

Simon: (To Paula)Are you done? (Pause) Clare you know I am a big fan, at first I thought this was a bit Kareoke, a little Elmo dance partyish, but then even I got caught up in it and your performance and realized that you are a superstar, you can sell millions of records and that song choice was spot on! (Applause). If I had one criticism, it would be to lose the band!

Day Two

Today was Clare's second day of preschool. It was her first day with the full class, so I was a little nervous how she would do. She had such great one-on-one time with her teachers on Tuesday that I hoped she wasn't lost in the crowd today.

When Clare woke up this morning, I told her we would go downstairs and play. She asked, "Kelly?" (who was Clare's PT up until last week). I told her no Kelly, but that she would go to school today and see Miss Pam and Miss Karin. Clare smiled and said, "Hello, Payton." This is the little boy who is the only other one in her classroom on Tuesdays. I couldn't believe that she remembered his name! And connected him with school. That was encouraging.

When we pulled up to the school, Clare walked out with her teacher. I received more big smiles and "Mama" from Clare. Her teacher relayed that Clare had another super day. They had gym class today, and she said Clare did very well with the other kids. This is one of our big concerns - Clare cannot run or jump and can get thrown off balance by kids running past her (the whole visual tracking piece that Clare needs to work on). We want her to be involved in her entire school day, but we also want her to be safe. So I was pleased to hear that Clare was able to hold her own. She also ate a blueberry granola bar and drank a small cup of chocolate milk for snack. Then asked for more! That was the most shocking bit of news. Two things that Clare has never eaten (and not for lack of offering). I am sure the teacher thought I was a little silly because I kept saying, "Really? She actually drank the milk? She ate the granola bar?" I just couldn't believe it. Food is one of our biggest battles at home. To hear that Clare did something new food-wise at school is amazing.

So we have survived Day Two as well. I promise not to detail every day of Clare's schooling! I know it's still a little too early to tell, but the transition is going so well thus far. I even enjoyed myself today with Clare at school. Jamie has been asking daily about going to the playground. Since there is still snow on the ground in our backyard, I was unsure of the playground conditions. I promised him that we would check out the playground one day while Clare was at school. That way, I did not have the added challenge of making sure Clare was safe on the playground regardless of whether it was covered in snow and ice. We have not been on the playground since fall, so I want Clare's first experience to be in optimal conditions. We met friends at the playground nearby. It was very windy, but Jamie and his buddy played for over an hour, Simon was content bundled into his stroller with a snack, and I could actually relax and visit with my friend. All in all, a good day.

First Day of Preschool

We all survived! Actually, Clare did incredible on her first day of preschool. As we truly knew in our hearts that she would. As Shawn posted earlier, we all brought her to the door, gave hugs and kisses, then Clare trustingly walked off with Miss Karin, one of her classroom aides. That was almost as hard as handing Clare over to the doctors before one of her caths. We've been talking with Clare daily about going to school, but I am not sure how much she actually gets what it is all about. When Miss Karin held out her hand to Clare, Clare took it without question and walked away with her. She waved good-bye and blew a kiss, but then did not look back. Which is how I want it. I don't want to think of Clare crying, miserable, scared to go to school. But it does make my heart ache a little that she was so trusting and willing to go with someone she only met the day before for 20 minutes. That's the nature of her personality.

Yes, I did start crying as we were walking back to the cars. I knew she would do well, but it was more the fact that she was actually old enough to be going to school that made my eyes tear up. We've been talking about this day since she first started with Early Intervention, but it was always something in the distant future. Now it is really here, and we have entered into a new phase of life with Clare. I quickly wiped my tears away, though, since I had Jamie and Simon with me. It was swim class day, so that was a good distraction while Clare was in school.

Although we do not get to see Clare in her classroom since drop-off and pick-up are outside the school building (thus why there are no photos of Clare in her classroom), we were able to talk about her day after school with Miss Karin. Tuesday is the "low" day in their classroom. Only the kids that need to go four days a week go to school on Tuesdays. In Clare's classroom, it is only her and one other boy. Clare's OT peeked in on her during the day (since Easter Seals shares the building with the developmental preschool) and reported to us that Clare was sitting in her chair working on a puzzle. She was following directions, paying attention, and doing really well. She also said that Clare enjoyed being with the other child in the classroom. I am glad Clare's first day was a quiet one at school (normally there are 13 children total in the classroom). It gave Clare a chance to warm up to the schedule of the day and the rhythm of the classroom and gave the teachers the opportunity to spend a lot of one-on-one time with Clare and get to know her. Miss Karin said they are going to start slow with Clare, but were able to get her to sit at the table for 10 minutes concentrating on a task. She did say that Clare repeatedly questioned "up? up?" to get out of her seat, but did listen when she was told not yet. Clare also had some OT and speech today. They end the school day with a reading of Brown Bear (by Eric Carle). This is one of Clare's favorite series of books, so I was not surprised when Miss Karin said that Clare found storytime very soothing.

When we all trooped back to the school to pick Clare up, she was waiting for us outside with the teacher. Clare was happy to see us ("Mama!" and big hugs), but we could tell she also had had a good time at school. She was exhausted, though, and went right to sleep after lunch (she normally puts up a stink about taking a nap - "No nap! No nap!"). Her next school day is Thursday, so our new weekly routine has begun! Below is a video of Clare walking in with Miss Karin. What a big girl!

45 Minutes and Counting...

S~Okay it has only been 45 minutes since we dropped Clare off at school, but it is driving me crazy. Teresa cried as we were leaving, and I cried in the car...it shouldn't be this tough! We have spent so much time and invested so much with our little girl that it is so scary to hand over all that responsibility to a complete stranger.

Anyway, enough of my insecurities. Clare took it great. After a hug and a kiss to all of us, she grabbed the teacher's hand and off she went. After I walked the rest of the family to the car, I was walking back to my car and I stopped at the door to her school, which was still open. I saw Clare inside taking off her backpack and jacket. I watched for a few minutes to make sure she was okay. She finally noticed me and gave a little start towards me which I had to make her stop by motioning her to stay. She stopped and gave a little wave with just her fingers. I blew her a kiss which she returned and then I left. I will remember that image of her standing there like a big girl for the rest of my life.

Happy 3rd Birthday, Clare Bear!

S~ Clare, today you turn three years old, and your mom and I could not be more proud of you. I remember when you were born and we found out you had Williams syndrome, so many things went through my head. I was nervous about what the future would hold for you, scared that you would not make it to see that future. I was selfishly disappointed that your mom and I would not have our golden years just the two of us, and I wondered how we would be able to raise a daughter with special needs. Now after three years, none of that matters. The only things that do matter are the little kisses you shower me with, the way you run to me, arms held out and yelling "Daddy" when I walk into the room. How you make everyone laugh with your silliness. You truly define your name of a light that fills the room.

I look back at all my fears and worries when you were born and, looking at all you have gone through since then, well, those fears all seem a little foolish. Your mom and I thank you for making us better people and a better couple. You have strengthened our marriage in ways we would have not been able to without you. You have forced us to know how to be strong in tough situations and to take life on a day-to-day business. So, on your third birthday, Clare, we thank you for all the gifts you have given us and those you come in contact with... We love you, Clare Bear!

Warmer Weather Wanted

Today was the day of Clare's school visit. However, Mother Nature had other ideas. We are in the middle of a huge snowstorm, so school was cancelled for everyone. Clare is supposed to have her first day of preschool on Monday, but I don't like the idea of sending her to school without Clare ever seeing the classroom or meeting the teacher before. I have not heard back from the school yet about changing our plans (perhaps no one goes in at all on snow days??). I hope we can do Clare's classroom visit on Monday instead, with her first day being Tuesday. Makes her third birthday a little anticlimactic with dropping the whole "starting school" bit but I refuse to just drop her off on Monday with no preparation whatsoever. At Clare's school, we do not get to walk her into her classroom. The teachers and aides meet us at the curb outside and take the children in. That is not going to be Clare's introduction to school. Out the car door and here you go!

Easter Photos

Coloring eggs - Jamie does the traditional hard-boiled kind, while Clare does... something else. We're not sure what she is doing.

The Easter Bunny brought rainboots, gardening tools, and lots of candy!

The Easter egg hunt was a big hit with everyone.

(You'll have to excuse my poor formatting skills. Blogger throws me through a loop every time I try to arrange my photos. It's killer on my Type A organizational skills, but what can you do.)

Quiet

All is quiet on the homefront here lately. Well, relatively so. We hosted a small Easter dinner (as compared to past years) on Sunday. Saturday was spent cleaning the house, making food, and coloring Easter eggs. Clare got in on the fun this year. She was fascinated by the idea of coloring eggs. She colored one, then discovered that cracking and peeling was more fun. We gave her her own bowl of yellow dye and let her do what she wanted. I think she's the first person to dye scrambled eggs. It was a pretty disgusting mess. Due to the mounds of snow in our yard, we held our Easter egg hunt inside for the second year in a row. The kids didn't mind, though, and Jamie easily found half of the eggs. (All those hours spent doing I-Spy books, that kid could find the needle in the haystack.)

I received a call from Clare's endocrinologist this morning informing me that Clare has flunked her six-week trial off her thyroid medication. Her TSH levels (thyroid-stimulating hormone) were too high, so she is back on her medication. The doctor called at 7:30am (one reason why I love Clare's endo is that he makes the phone calls in person - no nurse or secretary relaying information), and I was still working on actually waking up, so I didn't ask a lot of questions. I know in Jamie's case, once he failed the trial off medication, we were told he would need it for the rest of his life. I assume this will be the case with Clare as well. Shawn and I have noticed that Clare has seemed more tired and irritable lately. At first we thought it might be her heart, but once that was cleared, her cardiologist pointed out that it might be symptoms of hypothyroidism since she has been off her medication. Now that we know Clare needs to be on her medication, maybe she was starting to display symptoms.

We are in the last days before Clare starts school. I really don't know what to think. Part of me is excited for her. This is such a big milestone. I truly think that school will do wonders with Clare and that she will thrive. I also know it will be a huge adjustment. The boys take swim classes on Tuesday, and Clare plays in the childwatch room for an hour while we swim. She always does great in the room and enjoys it. But she is always so happy to see me when I pick her up - I get kisses and big hugs. I wonder how she will do with two and a half hours away from us. We have our school visit on Friday to bring Clare into the classroom. Then the big day is on Monday, her third birthday. Clare really has grown up so much over this past year - walking, talking, so much more independent. She has gone from being my baby to being a big girl. Not a toddler anymore, but a preschooler. Okay, I have to stop before I start crying!

When I get the chance to find my camera, I will upload some Easter pics.

Cardiology Update

Good news up front - Clare's next cardiology appointment is in six months!

Clare had her cardiology appointment and echocardiogram done today. It came up so suddenly (or seemed to) that I didn't even get a chance to properly freak out about it. She had a lung scan done at one of the Children's Hospital sites in Waltham a couple weeks ago. A normal lung scan reads 45-55 (cannot remember which lung is which) - Clare's measured 43-57, so she is almost at a typical output for her lungs, which is fabulous news. She was very squiggly-wiggly for the echo this afternoon. I kept threatening her that if she did not sit still, she would end up having her echos done under anesthesia in the ambulatory center. And we don't want that. Those words failed to impress her, but having two lollipops in her mouth at the same time worked wonders. Thankfully, we have the best echo tech in the universe (who has been echoing Clare since she was one day old), and she was able to get what she needed.

Clare's blood pressures and oxygen levels were great. Her weight was up two pounds from her last visit three months ago. And all her gradients measured almost exactly the same from her last echo! Truly awesome news!! Her doctor was very pleased. So much so that Clare does not have to return for six months. This will be our longest stretch ever between echos. Hopefully my nerves will last the entire length as well!

While we were at the clinic, I had scheduled an impromptu appointment for Simon with our pediatrician. He caught the lovely virus that Jamie and Clare had a couple weeks ago, but it seemed to linger in him. After a few days with a fever, congestion, and general crankiness and clinginess, it turns out that Simon has another double ear infection. (His third double ear infection in a little over a month.) We're now at the point where the doctor has brought up "the tubes." Personally, I think it's all an act and Simon just wants to have his thing. You know, Jamie has that thyroid thing, and Clare her heart thing. I think Simon is vying for the spot of the ear thing. God forbid one of our kids is (tongue-in-cheek) "normal."

[The photos are from our recent trip to the local children's museum. The kids love going to this place. Clare's favorite part was playing in the doctor's office (hmmmm... I wonder why?). She enjoyed being the medical secretary more than being the doctor. And, as you can see, even firemen go to the dentist.]

Blessings

During those moments and days when I wonder what we are doing here, I stop and reflect on the multitude of blessings in my life. And I thank God for each and every one of those. My top list today:

* An amazing family, my incredible husband, and three fabulous children.
* Friends to hang out with for hours, drinking wine, and indulging in fondue. Friends who just get me - no explanations needed.
* And the other sweetest almost-3 year old girl in the world who just makes my Clare light up. These two little girls are so precious.

IEP.... Not as Bad as One May Think

We had Clare's first IEP meeting yesterday. After more brief panic attacks about what to wear (ummm... and promptly forgot said panic attack come yesterday morning and ended up wearing my favorite pair of jeans that I wear five days a week and a comfy shirt), what we were going to insist upon having in the IEP (which Shawn and I hashed out in detail during commercials while watching the first Final Twelve showdown of American Idol), and whether or not all children would be healthy so we could leave them with their grandparents (I am pleased to say they were all healthy for exactly one day!), the day of the IEP finally dawned. This long-dreaded-oh-so-important step in the transition process was here.

For those who have never had the experience of venturing into the world of special education (and I had no clue what any of this meant before Clare), IEP stands for the Individualized Education Plan. In a nutshell, it is a list of the educational goals we would like Clare to reach by the end of the school year. It also includes a list of accommodations that Clare will need to reach those goals as well as whatever services she will need. It's a signed contract between us and the school department. Signing all the paperwork was almost as bad as buying a house.

Shawn and I were both extremely satisfied with the results of the IEP meeting. The team was great, and the IEP was thorough. I expected to go in there and help them draft the whole thing up right then and there. But the IEP was already written, we went over it in detail, then we brought up our concerns. Other than a couple sensory goals, everything we wanted for Clare was in the IEP. Including a defibrillator on site with trained staff. Hooray!

Clare will be attending preschool four mornings a week. The team felt Clare needed a fourth morning of school because of all the services she will be receiving - two units of group speech, one unit of group OT, one unit of individual OT, and two units of individual PT per week. It only amounts to 3 hours of therapy per week, but that's longer than the length of an entire school day. I was happy with this arrangement. Going in, I wanted one hour of PT, OT, and speech per week, which we got. At this point, I am not concerned whether the services are group or individual. We will see how Clare progresses and take it from there. One of the good things about Clare starting preschool at the end of the year is that she will only have about 10 weeks of school before summer. So we will have a chance to evaluate her progress, figure out what worked and didn't work, what we liked, etc. then have all that information when planning her first full year of preschool come September (and writing a new IEP). The team also felt Clare needs an extended school year or else she will regress over the summer, so we enrolled her in the five-week summer course as well. In addition to all this, we are going to continue outpatient OT with Clare's current OT, Jen, to work on Clare's sensory oral issues. We have had to cancel OT the last couple weeks due to illnesses between Jen's family and ours, and I can feel us slipping away a little. So I am eager to start up again.

After the meeting, the assistant director offered to show us Clare's new classroom. Clare will be coming in for a visit day at the end of the month prior to starting school, but Shawn and I jumped at the chance to get a sneak peek. As luck would have it, Clare's new teacher was in the building. Although she didn't currently have a class since it was the afternoon, she walked us through her classroom. She explained the different areas of the room and the daily schedule. She was obviously already well-informed about Clare and asked us lots of questions. I instantly liked Clare's new teacher. (Warm fuzzy feelings - yea!) The teacher was genuinely interested in learning all she could about Clare, and we could tell she loved her job and the kids. We also discovered that Clare's classroom is directly across from the nurse's station (who will be on site whenever Clare is in school).

I have been dreading the day when Clare starts preschool. I am so glad we had the opportunity to meet Clare's teacher and see the classroom. I will still be a basket case come March 31, but many of my fears and worries have been relieved. I must say that coming into this process with so much trepidation and low expectations has worked out for the best! Nowhere to go but up!

A Little Bit of Fame

Nothing too grand, but I am briefly published in the April edition of Parenting magazine. And I mean briefly. Basically a blurb in their regular feature "Mom Exchange." This month's was about different ways families stay in touch with extended family and friends. So, of course, I talked about blogging. And I am quoted!

So if you have your April Parenting magazine handy, open up to Page 27!

All Dressed Up

In the Thick Of It

We are now in the thick of Clare's transition from Early Intervention to preschool. Last week, we had Clare's eligibility meeting. Basically, Shawn and I (accompanied by Clare and Simon - lucky Jamie had a playdate) sat at a table with Clare's current OT and PT from Easter Seals, and the team from the school department - the assistant coordinator, school nurse, speech therapist, and special educator. After the coordinator explained they were coding Clare as "other health impaired," the eight of us signed a piece of paper and circled the word "yes" stating we believed that Clare was "other health impaired" and qualified for the developmental preschool. Then we signed more papers agreeing with that decision, then signed more papers stating we agreed with the papers we just signed agreeing with the decision. Love all the paperwork!

So now Clare is officially eligible for preschool. The next thing we discussed was equipment that Clare would need for preschool. This way, if anything needs to be ordered, they will have it in time for Clare's first day. The first thing the school nurse brought up was a defibrillator. I admit that surprised me. Having an AED in Clare's school is something that Shawn and I have discussed and both agree we are going to push for. But I did not expect one of the team members would mention it first. I was equally surprised to find out that the none of the preschools have an AED. The nurse explained it was not mandatory unless the school had an organized sports team. (What - no preschool volleyball or field hockey??) I am pretty sure Clare is not the first child to go to one of these schools with a heart condition, so I have a hard time believing she is the first child to require an AED. I could not get a feel whether the AED requirement is going to be a battle or not. The other pieces of equipment discussed were things like a chair with sides, a toilet seat with handles, no stairs in her everyday environment, that kind of stuff.

Our next step is the IEP meeting this week. We have our childcare all lined up for all three children so that Shawn and I can concentrate on writing the IEP with no distractions. Unfortunately, Jamie is getting over the flu, Clare currently has the flu and sleeping soundly in the middle of the day as I type, and we are praying that neither Simon nor us come down with the flu. I have a feeling, though, that I will not be participating in the IEP meeting.

Snow Bunnies

It's been quite a winter here in New Hampshire. I laugh at some of my posts from last winter and the photo of Jamie standing next to the tiniest snowman ever built. Not the case this year. It's been the snowiest winter in NH history. Which was so nice and lovely in December, kind of nice in January, not so much in February, and we're officially DONE WITH WINTER now that it's March. However, we were just dumped with more inches of snow last weekend, and the snowblower died a quick death right in the middle of our half-cleared driveway on Saturday. Shawn went snowblower shopping that afternoon and unfortunately, since it's March and thus we're into summer gear already, the pickings were slim. We may be shoveling ourselves out the rest of the winter.

It's been the kind of winter where our swingset has half-disappeared, our deck is barely visible, and there literally is nowhere to put anymore snow from our driveway. We have two piles of snow on either end of the driveway that are easily seven feet tall. It's a blind backout every morning, praying I don't hit a neighbor's car. With all this snow, though, the kids have not had a lot of time playing outside. Neither Simon nor Clare can walk in the snow, and they rarely nap at the same time. I am not up to the task of carrying two children around in the snow, so Jamie is either stuck staying inside with us or playing outside by himself.

Today, however, was a "warmer" day (I love how 40 degrees seems positively balmy after temperatures below freezing). I convinced Shawn to cut out of work for a little bit this afternoon, and we bundled the kids up to head outside. Clare has not had much practice walking outside because of the winter conditions, but I thought we would give it a whirl since Shawn was here to help out with Simon and Jamie. I figured we would last about five minutes. Jamie bounded over the huge hill of snow like a rabbit and was off into the backyard. Simon sat in the stroller and laughed at Jamie's antics. Clare shuffled around on the sidewalk experimenting with the sensation of walking on uneven ground while wearing snowpants and snowboats (a first for wearing both those items). Her confidence soon increased and, before I knew it, she had taken off down our driveway. Our snowy, ice-crusted, uneven, downward sloping driveway. Not a trip, stumble, or fall!

Clare loved playing in the snow. She picked up snowballs (the bigger the better), chunks of ice, and the dirty yucky plowed snow. While Jamie and Shawn had a huge snowball fight and I pushed Simon around, Clare stomped in the puddles and touched all the snow she could get her hands on. We had a fun afternoon walk in the snow. Now it can all melt.

Valentine Fund Thank You

Thank you to those who donated to the Williams Syndrome Association Valentine Fund in honor of Clare. We received our list today of who sent in donations in Clare's honor, so we know who you are! A big thank you to all!

It is not too late to donate, if you are interested. Simply click on the link to the right to be directed to Clare's page.