Some Moments

Lately, I've been feeling pretty good Clare-wise. We have been dealing with her delay in gross motor skills, which can be frustrating, as well as some eating issues, but other than that, I've had very few "this isn't fair" moments. (There were MANY of those in the weeks and months following Clare's diagnosis!) However, I did have one hit me the other day.

We went to a Halloween party. The other kids were from Jamie's playgroup from when he was a toddler. Now there are younger siblings as well, so there were nine little ones ages 3 and under at the party. Clare was not the youngest, but she is the only one who is not mobile. She seemed to have fun, but didn't really seem to get what was going on. She did not get to participate in any of the activities (other than eating pizza and donuts), but I think she enjoyed watching (if watching intently and smiling means having fun). We lined all the costumed kids up to take a group photo in the living room (much easier said than done!). After all the craziness and sitting still, the kids decided they were done with taking photos, and they all scattered. I was in the kitchen by this point. When I saw all the kids streaking by, I went back into the living room, and there was Clare. Sitting on the floor all by herself in a big, empty room, when before she had been surrounded by friends. She just looked up at me and raised her hands up to me. My heart broke just a tad bit more in that moment. Those are the moments that catch me unaware. I think I'm doing good and accepting all this, and then it just all gets to me again. I know Clare is not always shut out or set apart or different, and I know that this happens to all children at one time or another, but it is still so incredibly tough on a mother to see. Maybe because I KNOW without a doubt that Clare will have these moments in the future. They are inevitable. One of the saddest things I saw on the videos we watched about Williams syndrome is that the older individuals know they are different. They talk about how it is hard to make friends or fit in. They may not be considered smart or intelligent by typical standards, but they are definitely smart enough to know what's going on. And I wish I could shield her from all that. We have this gorgeous, happy, little girl, and I do not want her to know any of that fear or pain or feelings of being different that I know she is going to experience later in life.

I'm a happy-ending kind of girl, and this story does have a happy ending. Just as I was stepping close to Clare to pick her up, we were once again surrounded by a bevy of kids. Instantly, they were all over Clare. She was kissed and hugged and squeezed. Clare basked in her shower of love, and I finally had to step in and rescue her before she got squashed too much. Because she IS loved, and that's also important. The children may be young, but they know that Clare is something special, and they love her. We all do.

Barenaked Fun

Shawn and I went to the Barenaked Ladies concert last night. They are my favorite group, hands-down, no contest, without a doubt. The last time we saw Barenaked Ladies in concert was 2 1/2 years ago (which, in married with children time, is a long time, considering I wasn't even pregnant with Clare yet), so I was in need of a fix. Without boring all you non-fans with the details of the concert, let's just say it was fabulous. Shawn and I had a great time. We got spur-of-the-moment tickets and still ended up with good seats. It's been a while since we've had a date night, and especially since we've done something other than go out to dinner. Our anniversary is in three weeks, but Shawn will be in Houston over it, so this was an early anniversary present. Shawn's mom spent the night to stay with Jamie and Clare, so they got a treat, too, having Mimi around. Even though I am now functioning on very little sleep (it's been a long time since this mommy has been up until midnight), last night was awesome.

And speaking of seeing barenaked people, we had our ultrasound this afternoon. We brought our entourage since Jamie, Clare, and Shawn's mom came with us to see Jelly Bean do his/her dance on the screen. It's still very early, but everything looked good so far and the baby's measurements are right on track with my due date in May. Six months and counting!

Boo at the Zoo

I love Halloween. As I've said over and over, fall is my favorite time of year and not just because of Halloween. Last weekend, we went with Shawn's family to an apple orchard for apple picking, pumpkin picking, a hay maze, and fabulous pumpkin whoopie pies. It was an awesome day, the weather was beautiful, and we got some great photos.

But I do love Halloween! As kids, my sisters and I were not allowed to go trick-or-treating that often. Instead we always went to a fabulous (from what I can remember) All Saints' Day party at our church and dressed up like saints. So we got the costumes and the candy after all. As we got older, our costumes became more creative. (You have to spice up all those nun's habits somehow!) My favorite was the year I was St. Lucy - she is the patron saint of eye problems and is depicted as holding a pair of eyeballs on a plate, since she died a martyr and the legend states that she had her eyeballs plucked out. Sure enough, my dad sculpted me two Playdoh eyeballs for the plate I carried around. Hey, even Catholics can have some gory costumes!

It's been fun re-living Halloween through our kids. Jamie is now old enough that he wants to choose his costume, but Clare we still have control over! Jamie's pick was easy this year - a pirate. He has all the gear (he just asked us to get him a hook because how can he be Captain Hook without a hook?), and Shawn cleverly put together a costume with ordinary clothes. Originally, Clare was going to be a jaguar. I couldn't think of anything I wanted her to be, and she had a jaguar costume that someone gave us as a gift when she was born. However, when we were in Target one day, I saw the cutest little girl pirate costume. Not wanting to step on Jamie's toes, however, I asked him if it was okay if Clare was a pirate, too. His answer (one of the gazillion reasons I love this boy!): "Of course. I need a Mr. Smeed." If you're not familiar with the pirate lingo, here is the definition of "Smeed" from the Unword Dictionary:

"Smeed : smēd)
1. (n.) A nickname for one's cohort; Sidekick; Right-hand man.
Origins: From old pirate stories. Smeed has often been the name for a captain's sidekick. The name was used primarily in the tale of Peter Pan. In the story, Captain Hook's sidekick was named Mr. Smeed."

There you go! Our pirate duo is adorable. Even Clare has the pirate "arrrrr" down pat. This weekend, we took the kids to Boo at the Zoo. One of the other great memberships we purchased this year was to the nearest zoo. Not only does it work at that zoo, but at the zoo in Boston and the zoo in RI, near my family. So we got lots of use out of our zoo membership this year. Jamie was super excited about Boo at the Zoo, since it was our first official Halloween festivity where he dressed in his costume. I was all for bringing the costumes with us and changing the kids into them at the zoo. Jamie, however, wanted to wear his costume from the moment he woke up in the morning. As Shawn got him dressed, he said, "Oh, Dad, I am going to love being a pirate." How could I not give in? Although it was a tad on the windy side, Jamie and Clare had fun at the zoo. We looked at all the animals, then went down the trick-or-treat trail, Jamie got a turn in the bouncy house, and then we did the costume contest. Jamie and Clare did not win (I think the judges were blind), but it was fun nonetheless. Jamie and Clare got some candy (but not too much, which I thought was good since the actual Halloween is still around the corner) and other treats. All in all, it was a good day.

Grocery Store Queen

Clare and I went grocery shopping today. Jamie was playing at a friend's house, and I was looking forward to a couple hours of rest after a long morning. However, Clare thought 30 minutes was an acceptable length for her nap. She was still tired and somewhat grumpy, so we headed off to the grocery store. I hoped it would be a diversion and it's easier to go grocery shopping with Clare strapped into the cart as opposed to with a dawdling preschooler as well. I did worry a little over how long this trip would last due to Clare's mood.

Well, wasn't she just the happiest little camper! She sat in the cart like she was the queen and waved at everyone. Big "hi's" and smiles graced upon our fellow shoppers. Clare loves to wave and say "hi," but this was the first time she had done it out in public... loudly... to everyone. It got a smile out of each person we came across. From the young guy shopping in the produce department to the older lady in the meat section. One woman came up and said, "Thank you - that was the best smile I have gotten in a long time." It was heart-warming to see my little social butterfly starting to bloom!

First Introduction

I had my first OB appointment today. After weeks of waiting, I am almost out of my first trimester. (Is it technically 12 weeks or 13 weeks? No matter which, as long as my stomach gets the memo, I will be happy.) For some unexplained reason, all of our unborn babies have been graced with candy shoppe nicknames until we found out if they were boys or girls (yes, we are finder-outers!). Jamie was Fudge, Clare was Skittle, and this little one is Jelly Bean.

In my past pregnancies, the OB cannot find the heartbeat at 12 weeks. With Jamie’s pregnancy, I laid on the table with my stomach in knots while the OB ran the Doppler over my belly. No heartbeat, no heartbeat. Having miscarried my first pregnancy, this was agony. Finally the OB (who, luckily for him, I cannot remember which one he was, but I do remember he was male) said cheerfully, “Well, can’t find the heartbeat, but maybe the baby is small. Come back in 4 weeks and we will try again.” Not knowing what else to do, I straightened my clothes and left the office. To wait four more endless, painful weeks wondering if my baby was alive or not. We all know how the story turned out (because I have this amazing, crazy 3½ year old!), but I smartened up since that experience. I found my favorite OB at the clinic (she delivered both Jamie and Clare – Jamie by chance of the on-call schedule, Clare by choice since I was induced). At my first appointment during Clare’s pregnancy, she could not find the heartbeat. She explained that I had a retroverted uterus – not uncommon and not a problem since it corrected itself once the baby got bigger. But it meant the baby was at the back of my uterus, at the back of my body, too small and too far away for the Doppler to pick up the heartbeat. So she ordered an ultrasound for that afternoon. Sure enough, we got to see Clare (or Skittle, as she was known then) dancing around on screen with her heart beating.

So, this time, when the moment of truth came, my OB remembered about the heartbeat. She said it was a challenge now for her to find it at 12 weeks. After maybe 30 seconds of moving the Doppler around, there it was – the sound of galloping horses, a solid, steady 170 beats per minute. Very cool for someone who has never heard her baby’s heartbeat this early. There is nothing like hearing that sound for the first time in your pregnancy. Finally, a confirmation (other than a faint pink line that I always question if it’s really there) that there really is a tiny human being living inside you. You’re not just sick and getting fat for nothing! Absolutely amazing.

We naturally discussed Clare – one, because she was there and is just so adorable that you can’t help talking about her! But also, obviously, because of her medical and genetic history. Shawn and I declined having any testing done whatsoever. All those numerous screenings for things such as Downs syndrome, cystic fibrosis, etc. I have never done any of that testing. One, because it would not alter the course of the pregnancy for us, and two, because there are many false positives. But if you’re positive, I would be encouraged to have CVS testing or amniocentesis, which is too invasive in my opinion and carries a risk of inducing miscarriage. And, again, regardless of the results, it would not change our decisions regarding pregnancy. Of course, I want my baby to be healthy, but if he/she is not, I also know it’s not the end of the world. We are, however, having a fetal echocardiogram done around 22-23 weeks. Although Clare’s heart defects are 99.99% related to her having Williams syndrome, there are cases of children having the same heart defects and not having WS. And since both Jamie and Clare have a congenital defect (Jamie was born without a thyroid gland), there may be a good possibility we have another child born with a congenital defect. The fetal echo is similar to what Clare goes through with her echos (although I won’t be sedated because I promised to be a good girl and lay very still) – completely non-invasive, no risk to me or the baby. We also get our first ultrasound next week to confirm my due date. I am very excited to see Jelly Bean on screen!

Identity Crisis

I took Jamie and Clare to our local Children's Museum today. We have a membership there, but it's been a while since we've gone, having spent the nice weather days outside. Since it was raining this morning on our way to swim class, I told Jamie we would go to the Children's Museum after swim. Even though the sun came out later, Jamie was still all for the museum. We initially received a membership courtesy of my dad last year. It came in handy countless times during Clare's hospitalizations since the membership got us into the Boston Children's Museum for free as well. Jamie's routine during Clare's caths was that one (or both) of my sisters would take him to the museum while the rest of the family did the hospital vigil. So today, on the way to the museum, Jamie started talking about going to the big museum with Auntie Erin and Auntie Chrissy. He asked when they were going to do that again. Our conversation brought back all those hospital memories.

This is our year of first anniversaries, and the big one is coming up in less than 3 weeks - the first anniversary of Clare's open heart surgery. It's hard to believe a year has gone by already. As I was driving down to the museum today, I was overwhelmed with the memories of the sights, smells, and sounds of Hospital Land. We lived and breathed Hospital Land for so long that now that we've been out of it for almost eight months, I miss it. Yes, I actually miss it. There was something so familiar about the routine (sad, though, that it became routine). I miss the hospital food, which actually was quite tasty unless you had to eat it for two weeks straight. I miss walking the halls from our room to the playroom to the computer room to the elevator to the little kitchen which was always stocked with pudding, graham crackers, and Sprite. I miss the comfort of knowing that Clare was hooked up to a gazillion monitors so we always knew exactly what was going on in her heart. I know this sounds strange, warped, or maybe just hormonal, but does this sound familiar to anyone out there with kids who have undergone multiple hospitalizations? I feel like I am having an identity crisis. Sometimes I look back at last year and think, was that really us? Did we really go through that? Because usually in our day-to-day living, I don't think about it at all. I remember those feelings in the first few weeks after Clare's diagnosis, but before she started having caths - I would forget about her heart defects and Williams Syndrome, until the phone rang from the doctor's office. Lately, I've been in that little pretend world again, probably because we were doctor-free for the majority of the summer. Which is a nice place to be sometimes! I forget about all that worry, anxiety, and restless pacing of last year. So why do I miss it? I have no idea. I have to think it's that same phenomenon that happens to people who are sick for so long or live with a disability for so long, that when it is corrected or healed, they feel like they have lost their identity. I used to wear glasses and contacts. I had the absolute worst vision. Almost 6 years ago, I had Lasik surgery done on my eyes and have been corrective lenses-free since then. But for those first weeks and months after my surgery, I still reached for my glasses every morning. I thought it was so weird that I could see clearly by just opening my eyes. I missed my routine of cleaning my contacts. Bad eyesight was just such a part of me that once it was gone, I felt like I was missing something. That's what I relate this to. Clare's hospitalizations were such a part of her first year of life that once they were over, it felt like something was missing.

This IS NOT my identity. This IS NOT Clare's identity. But it did define us for a little while. Or at least was a huge part of who we were and how we lived. I am hopeful that that part of our life and especially Clare's life is over for now. I know Clare's heart procedures aren't over (especially with the dreaded sedated echo looming in a few weeks), but I am hopeful that we're over the worst of it.

Beginning Physical Therapy

Clare had her first physical therapy session yesterday. We met Kelly again, who was the PT for Clare’s evaluation this summer. Clare will have one hour of PT every other week. Kelly’s schedule isn’t set yet, so we don’t have a definite hour scheduled right now, but hopefully we will soon. In the meantime, we’ll work on a week-by-week basis.

Clare liked Kelly right away, and they went right to work. Clare lasted a little over half of the session, but worked very hard during those 35-40 minutes, so she was exhausted when done. Kelly mainly concentrated on getting Clare through transitions – from laying to sitting and sitting to standing. Clare does not transition at all independently, so Kelly showed me some techniques for helping Clare that we can work on during the week. I am hopeful that PT will give Clare that extra boost towards crawling and walking.

During Clare’s PT session, Shawn and I did get an eye opener into something else going on at home. Jamie, of course, is around during Clare’s sessions, and he usually wants to be right in the middle of everything. During Clare’s OT, Jamie and I often stay in the kitchen (within earshot and eyesight so I can get an idea of what Clare is working on), but it allows Jamie to have some special one-on-one time with me. When we go to the sensory room at Easter Seals, there is plenty to keep Jamie occupied. This session, however, both Shawn and I wanted to watch the session so we could see what PT was all about. Jamie was fascinated by Kelly’s equipment, big bag of balls, and new toys. He wanted to touch everything. A number of times, Shawn or I had to tell him to let Kelly play with Clare. Finally, Shawn brought him out of the room to talk to him. He explained that Kelly was here to help Clare with her boo-boos so she can learn to crawl and walk. Shawn admits it was the wrong choice of words because Jamie started crying. He had boo-boos, too, he told Shawn. He had three boo-boos, more than Clare did (pointing out his three cat scratches on his hand where Jack surprised him the other night), so he needed to play with the toys, too.

I am not surprised that Jamie is sorting through these feelings. He still remembers Clare's hospital stays. When we went to the zoo, he wanted to buy this loud crocodile toy, which we steered him away from. Partly because it was expensive, partly because it was annoying, but also because it scared Clare. A couple weeks later, Jamie asked me when Clare was going back to the hospital so he could have that toy. He explained to me that if Clare was not at home, then she wouldn't be scared by the crocodile. We do everything we can so Jamie knows he is every bit as special and important as Clare. I think that, in many ways, we go overboard sometimes with Jamie to compensate what he misses out on because of Clare sometimes. Not like it's really that much, but it's hard for him to understand why we can't do something because Clare has to go to the doctor or has therapy or needs a nap. Or that certain things scare Clare more so than other children. Part of it is the adjustment of having a sibling as well. I think it's a good lesson for Jamie in many ways that the world doesn't revolve around him and there are other people to consider. But sometimes it's also just one more thing that's not fair about having a child with special needs. There's my pity party for the day!

In other news, Clare has her first Synagis shot (the RSV-antibody) scheduled for November 1. The clinic is awaiting insurance company approval still, but Clare’s cardiologist recommends the shot for Clare as well as her pediatrician, so we’re hoping approval will be granted. The shots start up in a couple weeks, and Clare will receive one every 28 days until April. The dose of the shot is according to weight. Last year, Clare was just under the threshold for the dose being put into one shot. This year, I fear that Clare will get two shots per visit. One of the cons of gaining weight! Clare has her GI appointment right before the shot (one of the perks of having all of Clare’s doctor’s in one location), so we’ll see what he has to say. Shawn and I both feel that Clare does not eat a lot. She loves to drink milk and will drink and drink, but just picks at her meals lately.

Clare also has her sedated echo scheduled for November 17. Originally, her cardiologist wanted an echo in late October/early November. When the clinic called to schedule it, however, the earliest they could get Clare in was December 15. Since she requires anesthesia for her echos, she has to have them performed in the ambulatory surgical center at our clinic, which is a tight schedule. When I was told the December date, I asked the receptionist to please double-check with the cardiologist if that date was okay because it was six weeks past when she wanted to see Clare. Sure enough, we got a call a couple days later that they were able to squeeze Clare in on November 17. I guess the cardiologist didn’t want to wait that long! Of course, it is a 6:30am time slot and Shawn is in Houston on business all that week. Thankfully, my sister Erin is able to come down the night before so she can stay with Jamie while we go, and Shawn’s boss is letting Shawn leave a day early, so he can be here for the echo.

I knew fall was going to be a busy time for doctor’s appointments. But I would rather get them over with and enjoy the holiday season!

Family

We don't often get a photo of the four of us, for obvious reasons. My mom and aunt Sara came to visit this weekend, and my mom always insists on taking a photo of the family before she leaves. I tease her about it and we groan and roll our eyes, but I have to admit that she has gotten some great photos over the years, and without them, we would have very few photos of all of us. So, thank you, Mom! (Actually, the photographer in this case was Sara, but Mom did orchestrate the sitting!)

Good Day, Bad Night

It was a good day. The weather here was GORGEOUS. Almost too hot for long pants! The kids and I headed over to the nearby playground this morning. Jamie ran around like a loon, and Clare took some trips down the slide and went in the swing. Then we took a walk around the pond next to the playground. It's about a mile through the woods and stunning this time of year with the leaves turning colors. We often walked this trail as a family in the evenings this past summer, but this was the first time I did it by myself with Jamie and Clare. In the double stroller. Jamie claimed he needed a break from running around and wanted to have a snack, so I agreed to pull out the double stroller. Besides, I have been so off my feet with everyday, all day, no matter what time it is pregnancy sickness that I could stand to get the exercise. What I didn't figure was how much exercise I was going to get. With a toddler, preschooler, and a 20-pound stroller, I was soon pushing 80 pounds up and down hills, around curves, over leaves, twigs, and rocks. Needless to say, I definitely got a work-out! But we are savoring every last minute of fine weather around here, so I won't complain too much!

This afternoon continued our idyllic day. Clare took a nap, Jamie did his quiet time, I got my nap. Jamie and I made cookies before Clare woke up. We had one blip in that when Shawn went to get Clare out of her crib, suddenly I heard shouts of, "Tree, come up here!" Running upstairs into her room, there was blood all over Clare's crib. I am sure you can imagine how that makes your heart stop. Clare's hands were covered with dried blood as well. After I washed it off, I saw that she had a little cut on one of her fingers. I don't know how she did it, but a cut plus blood thinners makes a whole lot of blood from one little girl. Since it wasn't a medical emergency (just a laundry emergency), my heart started beating again. We had to throw all of Clare's sheets plus some of her stuffed animals in the washer. After that was accomplished, we played outside on our swingset, then took a walk on our street with Jamie riding his tricycle. Shawn had a business meeting that night, so he cut out of work for the rest of the afternoon.

We have a funny-looking tree in our front yard right next to our driveway. All summer it grew this weird-looking fruit. They looked kind of like peaches, but weren't. My sister's fiance is a.... landscape architect, horticulturist, guy who knows a lot about trees and plants?? (Sorry, Tee, drawing a blank here.) We had previously asked him what the tree was and even he was stumped. Since the tree is now dumping the fruit all over our driveway, we have been running over it with the cars. I noticed that inside the fruit was what looked like a nut. It looked like one of those nuts you get in a bag of mixed nuts still in their shells that you need a nutcracker to open. Not being a big nut expert, I couldn't figure out what it was. After unsuccessfully stomping on the nuts with our feet (even Jamie wanted a try), Shawn had the brilliant idea to take a huge rock and crack it with that. Sure enough, there was an edible nut inside. Well, we hope they were edible because we all tried it. Sweet, with a very familiar taste at the end. After our walk, we ate our cookies and Shawn searched online to see what the nut was. Lo and behold, we have an almond tree growing in our yard! And Shawn's research explained that the almond is in the same category as a peach or plum tree, which explains the appearance. Now I just have to find out if the tree is sweet almond or bitter almond (which is used to make cyanide) before we go trying any more nuts!

All good things come to an end, though. Shawn went off to his meeting, and I made dinner for Jamie and Clare. No dinner for me because the thought of eating was very unappetizing (I will be so happy to move on from this stage of pregnancy!). Clare and Jamie actually were very funny and cute during dinner. They were feeding off each other's crazy antics and laughing so hard, it was making me laugh. After dinner, though, was another story. Jamie is at a challenging age in many ways (I know all ages have their challenges, but parenting an extremely smart 3 1/2-year old has its moments). Now that Clare is getting older, she obviously wants to play with toys, too. Jamie is having a hard time sharing with her, especially sharing HER toys. My mom came to visit yesterday and gave them each some money to buy a treat. We took them to Target, and Jamie picked out a big Spiderman action figure. Clare chose a stacking animal bathtub toy (consisted of Shawn holding up three toys we thought she would like, and bought the one she reached for first). During Clare's bath, she got her first opportunity to play with her new toy. However, it was a big battle with Jamie over it first because he wanted to play with it. Sometimes it just makes me want to scream. I get caught up in the rationalizing with him, then come to my senses that he is 3 and I am the mom, and no means no. This usually leads to some kind of outburst or temper tantrum (from him usually, sometimes from me!), which it did tonight. So I was already a little peeved at him. I quickly finished bathing Clare, then got Jamie's bath ready. Now that Jamie is older, I don't sit with him in the bathroom during his bath. The door is open, and he is a loud bather, so I can always hear him singing and playing in the tub. Since I was solo tonight, I used the time to get Clare ready for bed and down in her crib. I checked on Jamie, and he was playing, but making a huge mess with splashing. Midnight was sitting by the sink watching him. I told him to cut down on the splashing and watch out for Midnight, so she didn't get wet. Then I went in his room to get his pj's and books ready for bed. Next thing I hear is yeowling and a streak of wet, black fur running out of the bathroom. I went in there, and there were three soaking wet washcloths on the bathroom floor. I asked Jamie if he threw them at Midnight, and he admitted that he did. I was so mad. One of those moments when I fought not to lose my temper. I didn't scream at him (but I wanted to), but I did tell him how displeased I was, took him right out of the tub, right into pj's, and right into bed. I told him no books and certainly no cats sleeping in his room tonight (which he loves, and Midnight sleeping with him is a new event). It was one of those moments when Jamie knew that he had crossed the line. I explained that putting water on the cats was not a nice thing to do, especially throwing wet washcloths at them. That his cats loved him and trusted him to always take care of them and treat them right. He cried, was sad about losing the cats for the night, but didn't put up one fuss when I turned off the light and left the room. I did give him a goodnight kiss (I could never be THAT mad at him), and told him that we would talk about this with Daddy in the morning.

So there's my long, venting post. At the end of the day, I have to look back and remember that it really was a good day. Yet one incident can sour my mood on the day. Probably because that taste is left in my mouth at the end of the day. Probably because my little boy went to bed knowing his mommy was upset with him. Probably because my last mental picture of him is him looking up at me with his big, sad, brown eyes and saying, "okay, Mommy, good night" in a little voice. Probably because I wish I could go back up to his room and give him a hug and tell him that I love him even when he does something he shouldn't. I think I'll just go do that.

A Day of Firsts

We went to a Great Pumpkin Festival in a neighboring town yesterday. I love autumn, Halloween, Thanksgiving, pumpkins, apple picking, all that fun stuff. It's my favorite time of year hands down. Last year, we had all these crazy plans for fall, but they got rained out and then Clare ended up having a cath on Halloween.

The pumpkin fest was awesome. It was a gorgeous, sunny, crisp autumn day. The leaves are starting to change in beautiful northern New England, so the foliage was lovely. There were so many activities for the kids - face painting, pumpkin painting, tours of the fire station, games, pumpkin catapult, yummy food, and a children's singer who got both Jamie and Clare dancing. (And even Shawn, although he won't admit it.) Jamie had a great time doing everything, and even Clare enjoyed herself. It's tough because she is at an age where she is too young to really participate, but she wants to be involved. She had fun just taking it all in. When we went down to the fire station, Jamie got to use a fire extinguisher (with the help of the fireman) to put out a real fire - he thought that was fantastic! He was also eager to try his hand at the pumpkin catapult. He picked out his pumpkin (a perfectly round little pumpkin). When it was his turn, he waited patiently while the man set up his pumpkin in the catapult. The goal is to aim the pumpkin at a floating scarecrow in the river, pull the string to send the catapult flying, then hope the pumpkin hits the target. Jamie pulled that string with all his might. His pumpkin sailed high in the air and hit that scarecrow dead on! Jamie was so excited - he was a winner! He was led into the tent to pick his prize. Jamie carefully perused the table of assorted pumpkin shapes for the perfect prize. He settled on a plastic jack-o-lantern that flashes red and yellow lights. For the rest of the day, Shawn and I answered the questions a zillion times - How did I hit the scarecrow? Did I pick the right pumpkin? Did I pull that string hard enough? Was I winner? He wanted to hear over and over again how he hit the scarecrow and won a prize. With no false pride as the beaming mother, we watched the pumpkin catapult for quite a while later that day and did not see anyone else hit the scarecrow.

Unfortunately, we had our next first right after Jamie became the first contestant of the day to hit the scarecrow. As I carried Clare back to the stroller, she started screaming and flailing her arms. Shawn hurried over, and we examined Clare - could not figure out why she was carrying on until we saw a little well of blood on her left cheek. Shawn took Clare, and I checked myself to see what on me could have cut Clare. As Shawn cleaned off the blood, I could see that it was not a cut, but a puncture - Clare had been stung. By what, I don't know because I did not see any insect near her. Within seconds, Clare's cheek turned red and started to swell. Thankfully, we had already checked out the local ambulance house, so we knew where to go. By this time, Clare's left cheek was bright red and the size of a golfball, but she had stopped crying and was acting fine otherwise. The EMTs listened to Clare's heart and lungs, checked her over for any other rashes or hives (signs of an allergic reaction). Since the only discoloration and swelling was at the site of her sting and her chest sounded good, they gave us an ice pack to reduce swelling and told us what other symptoms to watch for. The EMTs were wonderful and even shared their munchkins with Jamie while we waited. Clare hated the ice pack and screamed every time we put it near her cheek. Within an hour or so, her swelling and redness went down. I was so grateful that it turned out to be relatively nothing.

We enjoyed the rest of the pumpkin fest since Clare was okay and then headed home. That night, Shawn gave Clare her first haircut. Her bangs are ridiculously long, but they were manageable with barrettes and elastics. However, Clare has decided that she does not want to wear anything in her hair. Within minutes (sometimes seconds) of me putting her hair up, she yanks whatever it is right out. And since the baby barrettes and elastics are teensy tiny, I don't want her eating them! So cut her bangs it was. Not the must professional job, but she looks pretty darn cute! And now no more hair in her eyes.

Before bed, once it was dark enough, Jamie and I went in his room and he turned on his prize pumpkin. It flashed its yellow and red lights. Jamie said, "Isn't it beautiful?" And it was.

Check-Up Time

Clare had her 18-month well baby visit with the pediatrician yesterday. Poor thing had to get two shots plus blood work, so she was not a happy camper by the end of the appointment, fell asleep in the car on the way home, and took a 3-hour nap.

Her pediatrician is pleased with her progress. He checked her hips and legs to be sure that there was nothing mechanically wrong with her that was getting in the way of her crawling (and there wasn't). He agreed with the plan of adding PT to Clare's schedule. Clare's weight is up to a whopping 17 lbs, 3 oz (which, incidentally, is what Jamie weighed at 3 1/2 months old). The pedi was not as thrilled with her low weight gain as he was with the rest of her progress, but since Clare has a follow-up with the GI in a few weeks, we are going to wait until that visit to discuss weight-gaining strategies - again. Other than weight, though, Clare is doing well (which we knew, but it's always nice to hear the doctor say that as well!). We obviously already know that she is delayed in her motor skills and speech skills, but since she is learning more words and has started signing, her pedi is happy that she is making steps in the right direction. He wants Clare to receive the RSV-antibody shots again this year, like she did last year. We just have to get insurance company approval before she can (since the shots are $2,500 a pop and it's a 6-shot series, $15,000 is a little steep for us to pay out-of-pocket). But given Clare's medical history, and I am confident her cardiologist will be on board with the RSV series, hopefully approval will be a non-issue since the shots start up next month. Clare does not have to see her pediatrician again until she is 2 years old! At which time, she will receive more vaccinations because we decided to delay Clare receiving the MMR shot since it is the shot that is "linked" to autism ("linked" in quotes because the jury is still out on that one). Although I am not 100% convinced there is a link (and neither is our pedi), we agreed that since Clare is more at risk for developing autism given her Williams syndrome, why throw another risk factor in there.

Clare also saw her endocrinologist this week (thus the blood work after her pedi appointment). Again, other than weight gain, he is pleased with how she is doing. She has always been asymptomatic when it comes to her hypothyroidism and takes her Synthroid without a problem (wish I could say the same about her Plavix!). Her thyroid levels have been in the normal range for a year now. It was comforting to touch base with two of Clare's doctors and have everything be fairly status quo. (At least there were no shockers.) Our next hurdles are the GI and cardiologist next month, and those I will be more worried about!

Kitty Love

So we got another cat. Her name is Midnight, and she's the sweetest little black cat. I have never owned a black cat, so it is funny to see her running around here. When she first came home with us, she hid under the oil tank and we could not find her because she blended right in. It took Jack Sparrow (who is HUGE now and only 5 months old - he is going to be a big kitty) a couple days to get used to her, but now they're best buds. They were up at 5:45am this morning racing around downstairs. Sounded like a herd of elephants. Thankfully I was already awake due to Miss Clare's early rising!
Jamie loves the cats. He picks them up and carries them around. Jack sleeps with him at night, and Jamie has been begging for us to let Midnight in, too. Clare is also enamored with the kitties. Her face lights up when she sees them, and "kitty" is her favorite word. Jack is very good to Clare, and will come and sit right in her lap. She pets him and pulls his ears, but he doesn't mind. Midnight is a little more skittish of Clare, but she, too, will come and check Clare out. Clare puts her arms around Midnight and hugs her. She lays her cheek down on her black silky fur and just rests there. It is so sweet!

Before Shawn and I had kids, we had two cats of our own. However, once Jamie arrived, Corona and Isis were four years old. By the time Clare arrived, they were six years old, set in their ways, and not amused with being chased around by a toddler. It was a tough, tough decision, but the cats went to live with my parents. They were very unhappy at our house. It was strange not having pets around, and Jamie kept asking when Corona and Isis were coming back. We explained to him that they weren't used to living with children and wanted to live with Grand Dad, but that we would get a kitty of our own someday. And, although I still miss my Corona and Isis, they are very happy (and fat!) at Dad's house and we're all in love with our new kittens.

Sensory Fun

Clare started in the sensory room at Easter Seals this week. She absolutely loved it! (As did Jamie since it meant all new toys and games for him to play with!) It was great because it gave Clare a chance to work on her gross motor skills. It was interesting to see that Clare did almost no talking during this sensory session as compared to the Chatty Cathy we had last week when she was working on fine motor and speech skills.

Clare played in the ball pit, on the swings, went down the slide (her new love at the playground), and rocked in a rocking train. She worked hard for the entire hour, something she usually does not do. It was also easier for Jessica to do some crawling exercises with Clare because Jessica could help Clare move across the mats much more easily than across our carpet at home. The definite consensus was that Clare is going to do an hour every other week in the sensory room. The alternating weeks, Jessica will come out to the house and work on fine motor skills. We are still waiting for the PT to start with Clare as well - hopefully soon!

What I Know Now That I Am 18 Months Old

What I Know Now That I Am 18 Months Old
1 - By saying "aaaa" in a certain way and pointing with the cutest little finger, I can get Daddy to hand over anything from his plate, including beef teriyaki.
2 - Sleeping late is overrated. It's best to be awake and raring to go by 4:45 every morning.
3 - Jamie's big train set is a little on the scary side, unless I get to be in charge of the remote.
4 - I can roll just as fast, if not faster, than Jamie to the other side of the room.
5 - Saying "kitty" over and over as one of my favorite words will inspire Mommy & Daddy to get a girl kitty named Midnight. Oh, I just love her so much!
6 - When Daddy says "no," it's hilarious. When Mommy says "no," she means business.
7 - But if I start crying after Mommy says "no," everything is status quo again. Which means I can go on throwing food on the floor.
8 - I am now old enough to eat snacks in the car as well. But if I throw my cup after I am done, snack time is over.
9 - Books are fun. Especially the pop-ups ones, the lift-the-flap ones, and any other kind good for ripping.
10 - It's hard work being such a big girl, so it's nice to pretend to be a baby again sometimes so I can snuggle with Mommy or Daddy.

(Clare was 18 months old on September 30, but between Blogger giving me a hard time and Jelly Bean giving me a hard time, it's been a rough couple of days!)

Murphy's Law.... Or Something Like That

Clare had an awesome therapy session this morning. Of course, we have just been approved for additional services, so Clare will have to prove us wrong! We are meeting Clare's new PT in a couple weeks (she is the same PT who evaluated Clare this summer, so I know that Clare and we like her, which is a must), and next week, Clare is going to have her first session in the sensory room.

Today Clare worked for over an hour - almost nonstop. One brief crying break when Clare got scared she was going to fall over. Clare worked on the ball, did weight bearing on her arms, all kinds of fancy things that she usually resists doing. And the words she repeated! Absolutely clear, here's the list from today alone - apple, pretty, oh no kitty, mouth, moo, neigh, my. This afternoon, she wanted a drink from my water bottle, so I said to her, "Clare, water?" She looked at me and said, "Water." I almost fell over. I ask Clare where her nose and eyes are and she will point to them. Her favorite is to show you where her teeth are. So I have to brag about her accomplishments today. Clare constantly amazes me with how fast she can learn.

Trying New Things

I have been complaining that Clare has stalled when it comes to her gross motor skills. She loves to sit and roll, but forget crawling, pulling up, walking, or even getting from a laying down position to a sitting position.

At Clare's OT session last week, I discussed our concerns with Jessica. She agreed with me. Clare is doing amazing with her speech and fine motor skills. The big thing (in relation to fine motor skills) Jessica was concerned about at Clare's evaluation in June was that Clare wasn't releasing objects. Now Clare takes objects in and out of buckets, boxes, that kind of thing. She will hand you a toy if you ask her for it. Clare is learning her animal sounds and will respond with "moos" and "neighs" when you ask her what the cow and horse say. She even has her own version of "quack." She now says "uh oh" and "kitty" very clearly. And she occasionally says "mama" (yea!). Clare is turning into a regular piggy at mealtimes. The other night, she ate so much pizza, that she was up for five hours past bedtime with indigestion. Obviously we weren't happy about the indigestion, but we're working on that! So I am getting frustrated with Clare's lack of progress when it comes to her gross motor skills.

We are going to increase Clare's therapy. It is not my ideal choice (as in I wish Clare would start walking on her own!), but I think it's best for Clare, since she has stalled and needs something to rev her back up. Also, her one hour of OT a week is usually more like 30-45 minutes a week. Clare just can't make the full hour sometimes. And she knows when Jessica wants her to work. Clare would rather snuggle! So if we can add another session in, then even if Clare only lasts half a session, she will actually get a solid hour of therapy. The plan is still a little hazy, but she has been approved (through Easter Seals) for a PT consult, and most likely adding an hour of PT every other week. Jessica also wants to introduce Clare to the sensory room at Easter Seals, where she can play in the ball pit or on the swings. It will help Clare with some of her vestibular activities, plus it will vary her therapy. That may be a separate hour or it may be that one hour of OT a month will take place in the sensory room. Whichever way Clare's therapy goes, I hope we see some results.

What's New?

We're in doctor's visits limbo right now. Both a wonderful and a frustrating place to be. Clare sees her pediatrician at the beginning of October for her 18-month check-up, then the endocrinologist, then the GI, then her cardiology appointment and sedated echo (which will either be in October or November). It's been so long since Clare has seen a doctor (not counting when she was sick about a month ago), that I feel disconnected. If you've done the frequent doctor tour, you know what I mean. Clare used to have doctor's appointments every week. Sometimes she had up to four in one week. We used to be frequent fliers. I most definitely am not complaining - it's just weird. And what may seem even weirder is that I am looking forward to her upcoming appointments. We get to check in and see if all systems are still go. It's great to have such a span between appointments now, but it's also a relief just to touch base and see how Clare is doing from a medical perspective. This may all sound crazy, unless you've been there.

Clare is still in weekly OT (she will be in it until she is three years old, at which time, she will start going to the developmental preschool in our city). She is doing a great job with standing, but cannot pull herself up. If I stand her up at the coffee table or couch, she can hold on for long periods of time. She loves to do this, especially when Jamie and I are playing a game at the table. It makes her feel like she's part of the fun. However, her upper body strength is still weak, so her therapist is working on building that up and teaching Clare to pull herself up. I think we've all given up on crawling and are aiming for cruising now. I don't want to put any pressure on Clare, but she is going to be the flower girl for my sister Christina's wedding next June, so we're hoping she is taking some steps by then!

Blogger is being finicky, so a couple more beach photos to follow!

And Then There Were Three

This blog is primarily about Clare, so I will let her tell you the news - She is going to be a big sister!

Yes, Baby Number Three (now known as Jelly Bean in our house) is on the way and should be here in early May. Between nausea, extreme tiredness, and migraines, I am feeling great!

When we found out we were pregnant a couple weeks ago, I wanted to wait to tell people. Although we are thrilled to be expecting, it's funny to see the reactions of people when you tell them you are pregnant. Again. "Oh, that's... great. You have a boy and a girl already, don't you?" (Because obviously that's the magic formula, and once you have that, why have more?) "Congratulations. This is what you guys want, right?" (Translated - was this an oops since you already have the perfect family?) Well, it's not an oops, and we don't have the magic formula in our family. After Clare was born, I got many, many comments along the lines of, "You have a boy and a girl! That's perfect. Now you can stop." And my response was always, "We can't stop. They each need a brother and sister. Now that would be perfect." Another favorite after Clare was born was (especially from those who knew we wanted more children), "Well, you're certainly going to rethink having more kids after everything you've gone through with Clare." Shawn and I did rethink our original dream of having four (or more) kids. Or, more accurately, we discussed whether or not we still wanted that in our lives. Heck, after having Jamie (which we thought was so tough), I wondered sometimes if we were crazy when we wanted to have more children. Our first year with Clare was stressful, intense, challenging. But that's not the end of the story. And, even if it was, Clare has brought us so much joy, why wouldn't we want to add to that?

Why do people feel free to make comments and judgments about other people's lives? And to their face sometimes? I have many, many friends who have only one or two children. That's what they want, they're extremely happy, and that's great. Sure, that's the typical societal expectations of a family. But in my close group friends, most of us are on baby #3 or #4 or (GASP) #5. Why are large families often viewed as being irresponsible, can't control themselves (i.e. you should be using birth control), not caring or thinking of the well-being of their children (how can you possibly afford to send all those kids to college? or Disney World? or their spring break in Cancun?) I certainly am not accusing everyone of doing this, but there are those out there. Even if you don't intend to be critical or nasty or judgmental, we all have those rash thoughts come across our minds at times (and sometimes out of our mouths).

As for telling people right away, Shawn won. I wanted to wait until I was past my first trimester, especially since I have had a miscarriage in the past and that fear never leaves you. But Shawn reminded me that why wouldn't I want all these people to share our joy and excitement and, if God willing, our suffering and pain? I pray fervently that it doesn't come to that, and am trying to think positive, positive thoughts! Besides, it was fun to share the news again!

So I apologize that this post may be a bit on the terse side. Hey, what can I say? I'm pregnant.

Remembrance

September 11, 2001

This is the Kennedy assassination to our generation in that I will always remember where I was and what I was doing that morning. I had just settled in at my desk at the insurance company I worked for as a property and injury adjuster. Normally, I was out on the road all day, but for some reason, I was in the office that morning. Shawn called me (he worked seven floors up in the same building) and asked if I had heard the news. Once he told me, I checked it out on my laptop, but there were still lots of confusion about what was going on. I also talked to my mom, who is usually up-to-date on all the news, but she didn’t know anything more. I remember seeing the cameras catch the footage of the second plane hitting the Towers and disbelieving what I saw. This was news footage you see somewhere else in the world, not the United States. For the next hour or so, I talked to Shawn often on the phone. He had talked to his mom who had reported riots in Portland (near where they lived). We heard that the planes had departed from Logan Airport, which is only 45 minutes away from us. We both ended up skipping out of work (perks of being “on the road” employees) and continuing our vigil in front of the TV in our basement at home. I remember being scared and confused, but glad that Shawn and I were together.

As tragic as this day was to our nation, September 11, 2001 has personal meaning to us as well. This was our due date for our first pregnancy. That pregnancy had ended in a miscarriage six months before, but you don’t forget your due date. It hit me that day that if the baby had lived, I would be either in the hospital giving birth, had just given birth, or giving birth any day. I can’t imagine how much more scared I would have been bringing a child into the world amidst all the terror and chaos of that day. Although I grieve that loss of life, I admit that on September 11, 2001, I was glad for the first time since my miscarriage that I was not pregnant. Today, however, I mourn the loss of my child again, who would have been five years old this month. We love you and we think of you often.

Vacation Blues

Our beach vacation is over. It is always sad to have it end, but comforting to come back home.

As we set out on this vacation, I had a lot of expectations. We went to Ogunquit Beach last year and had a fabulous time. Jamie loved everything about the beach, and Clare was a happy baby in her little playpen and in the Baby Bjorn. I had all these rosy pictures of sun-filled, sand-filled days.

Unfortunately, things didn't go quite as planned. We began our journey in the aftereffects of Hurricane Ernesto and an equally ferocious migraine for me. Once we got to the beach, it was raining too hard to do anything, but take shelter at a restaurant for lunch, then huddle in our hotel room. Jamie and Shawn braved a walk along the beach so Clare and I could nap, but the first day was pretty much a bust. I admit that I was very upset and disappointed that evening as we went out into the pouring rain again to get some pizza for dinner. This wasn't the perfect vacation. Where was the sunshine? Where were my two happy kids? (And, for that matter, where was their smiling mommy?) In its place, we were handed a soggy day, a grumpy, headache-ridden mommy, and two whiney, hard-to-please kiddos. Luckily, Shawn is there for when the bad moments come. After the kids went down that night, we sat on the balcony and talked about why we were disappointed. Instead of just whining and complaining ourselves, we decided to make the best of whatever got handed to us on this vacation. After all, we were together as a family in a gorgeous place. There was no laundry, no cooking, no telephone, no computer, none of the distractions of our everyday life. The next morning dawned (quite early to us, thanks to Clare, who was up before the sun). When the sun began to rise, I caught glimpses of color in the sky - yellows, blues, and pinks that promised a beautiful day. And it was. It was cooler than I would have hoped and we still had two whiney kids at times (and I admit, an occasional grumpy mommy), but once I changed my expectations of what this vacation was about, things started looking up.

Upon coming home, I thought a lot about my expectations of things. That is what made me so blue on this vacation - it just didn't live up to my expectations. I thought this year would be a mirror of last year. And it wasn't. Which isn't a bad thing because our vacation was wonderful in its own way. We really did have a great time. The cooler weather forced us to do things other than just sit on our bums at the beach. We went on a real Maine lobster boat and watched a real Maine lobsterman pull his traps. Jamie kicked our butts at mini-golf (courtesy of Shawn's bunny ears). Jamie and Shawn rode an elephant (yup, you read that right). We went crab-hunting, starfish-hunting, sand dollar-hunting, and seashell-hunting. We watched them make taffy at a candy store, then let Jamie have carte blanche in choosing what he wanted. Clare got the biggest lollipop she had ever seen. We saw the turbulent ocean during a torrential downpour (from the warmth of an enclosed restaurant patio). At low tide, we explored the area around our hotel and found the greatest swimming holes for Jamie and Clare - pools of water that are left on the sand after high tide, which the sun warms up all day. I could never have imagined all these different things we were able to do. If our vacation had turned out the way I expected, we would have missed so much. It's an important lesson to learn, especially concerning Clare (see, you knew I would get back to her somehow!). I have to let go of so many of my expectations of how I think her life should be. Expectations are not necessarily bad. I also don't think I am shortchanging her by not having those same expectations. But I can't let myself get upset or angered or blue when things don't go as I expected. Or, quite frankly, I would be living my life in misery! Very little in Clare's life has gone as I would have expected.

In retrospect, I think part of the magic of last year's vacation was due to the fact that it was a hard summer for us. At the end of the summer, we were still reeling from the shock of Clare's diagnoses, had recently endured her first cath, and had just received another shock that Clare was not doing so well and needed her second cath sooner than expected. That cath was days after our beach vacation. So our trip was a haven for us. A little slice away from reality. My positive spin on this whole thing is that, in some ways, it was good that our vacation wasn't all I dreamed it would be. It means our life is pretty darn good right now! We have our good days and our bad days, but our life is not the emotional roller coaster it was last year. And I am thankful for that.