More Tears Today

This time, tears of joy. We had our Level 2 ultrasound today. All looked well. The perinatalogist detected no fetal abnormalities. Of course, not everything can be seen on an ultrasound, but from what she could see, the major organs, structures, etc. look great. We are still scheduled for a fetal echocardiogram next month just to cross our T's. As the doctor explained, right now at 18 weeks, the baby's heart is the size of the tip of your pinkie finger. In another four weeks, it will be the size of a quarter. Clare's heart defects were not detected through the ultrasound, so one more test just to be sure!

We have also officially retired the sweet name of "Jelly Bean" and have moved on. So introducing....

Simon Joseph

Tears

I have been a tad emotional these past couple days. I want to blame it on hormones and a bad head cold, but it's really because I have become a wimpy mush since becoming a mother, especially a mother to a special needs child. I know I have always been a compassionate person, but it gives you a new perspective when you see another human being and think "that could be my child." I can get downright weepy when I see the boy with Downs syndrome cleaning the tables at Wendy's.

We received our copy of the Williams Syndrome Association's newsletter this weekend. There was a beautiful letter written by a 12-year old girl talking about her 7-year old brother with WS. She states that even though he cannot walk, talk, or eat, she thinks he is absolutely perfect. There were two tributes from the parents of children who passed away this year (one girl was 16, and the other boy was only 9 months old). It took me two days to read the newsletter because I kept having to put it down and take a break or else I would lose it. I picked up my latest issue of "Parenting" instead (nothing has ever made me cry in that and, many times, I laugh at the magazine and the problems those parents need solved - it's a wonderful diversion to read about how to get rid of your baby's hiccups). And there was a heart-stirring article about open-ended adoption that got me started crying all over again. (For those that do not know, my then-teenaged younger sister courageously gave her baby up for adoption nine years ago.) All this while spending a wonderful four-day weekend with my three sweeties getting our house decorated for Christmas made me very weepy indeed.

Today, my thoughts and prayers are especially with another little member of our WS community. During a "routine" cath, this 2 1/2-year old's heart stopped. He was resuscitated, but his heart stopped twice more, he was placed on life-support, underwent open heart surgery, developed double pneumonia, and sometime during all this he also suffered a stroke. He is in week two of being in the ICU. My heart goes out to Gage and his parents during this difficult time.

It's hard to read and know all this. I want to know about these risks because I do not want to be in denial about how serious Clare's syndrome and heart condition can be. At the same time, I know that there are many more children with WS who are thriving in many aspects of their lives. The reality check can be hard sometimes. And, finally, my friend Nancy's blog just got me completely. She shares a beautiful story and video about a father and his disabled son who saved each other's lives. You have to check it out, but be sure you have the tissues nearby. Her blog is at: www.heartofafamily.blogspot.com under the post entitled "CAN." Thank you for sharing that, Nancy. I hope I am all out of tears, at least for tonight.

I Love These Days...

S~Okay, I know I haven't written in a while but I thought it was time I chimed in. I know Teresa has said many times how fall and early winter is our favorite time of year. It could be because there are so many fun things to do! With trick-or-treating, Thanksgiving dinner, and then the whole Christmas build-up. We are big Christmas people, and I always look forward to the weekend after Thanksgiving when we put up our Christmas tree and decorate the house. There is nothing more cozy than a house at Christmas time. I love these days!

And apparently so does Jamie. He was such a big helper this year - helping me with the branches on the tree and helping me string the lights. By the time we got to hanging ornaments, he was a Christmas tree expert. The cute thing was he kept telling me how he loves these days - when we put up Christmas trees, he really loves that, it's his favorite. Then once the tree was finished, we broke out the eggnog and the holiday oreos. Jamie's remark: "Daddy, I just love these days when we eat oreos and drink eggnog."

I think even Clare loves these days, or at least she loves the soft St. Joseph from the kids' nativity set (she takes after her old man after all). Clare was mesmerized by all the lights on the tree and just sat watching it.

After the kids were in bed, I sat in the living room with all the lights out, except for the Christmas tree, and thought how much I love these days. Not just the days leading up to Christmas, but the days when my son wants to help me with everything I do, and my daughter is content to give everything a big old squishy hug.

Fifteen Minutes

Yes, this was absolutely worth the fifteen minutes of peace, relative quiet, and reading time Shawn and I got in the living room the other night.

P.S. Okay, I had to add this because of all the comments I received! Yes, I used to sell Tupperware....

Moving Forward

The time has come to move on. I’ve been blogging faithfully for almost a year and a half now. It has been very therapeutic for me, plus gives me a chance to update those around the country (and even a few followers internationally!) on how Clare and our family is doing. But lately I’ve been questioning the need to blog anymore. No need to fear – I will continue! But it is time to move forward.

We originally titled this blog “Clare’s Journey,” but it has really been about our entire family’s journey through this confusing, often times scary, but frequently wonderful, world of Williams syndrome. I needed this blog during those early months. I have always enjoyed writing, but was never good at keeping a diary. Blogging, however, came naturally. I have always been the kind of person that when I am angry or upset, just the simple act of writing it out makes me feel better. If I am irked at something a friend has done, I will type them an e-mail. Then I will delete it because I feel so much better just having the words written down, and I can move on without holding that grudge. Maybe I should be braver and confront people sometimes, but that’s not how I function. So being able to share my thoughts and feelings during Clare’s days of diagnoses, tests, caths, and surgery gave me a release for all that emotion. And I believe it made me a stronger person because I wasn’t bottling it all up inside.

In some ways, I know I still need this blog because our journey isn’t over. Williams syndrome is not a chapter in our life that will ever end. What we worry about with respect to Clare having WS will change, but there will always be something. However, it is time to move past that as my sole reason for blogging. Another WS parent made the comment a while back that having their third child (their second had WS) “normalized” their family again. It sounded kind of weird at the time, but being pregnant again, I can see that. I am sure a large part of this is due to the fact that Clare’s medical worries have slowed down. We’re not in that crisis mode anymore. But I am also getting past the whole WS aspect of who Clare is and seeing all the other things she is as well. Williams syndrome will always be a part of our life, but it’s not the focus of our life. I know there is no law about what I can and can’t write about. However, before, I felt that this blog was for and about Clare and that was it. I don’t feel that way anymore. Now I know it is for me and my whole family. I’ll still call it “Clare’s Journey,” but it’s not just her journey – it’s our journey.

So maybe I will blog less often, but trust me, I will keep it up (at least for now – who knows when that infamous Jelly Bean comes along!).And now we will most likely hear more about what Mr. James is up to as well as Miss Clare since in our daily life, he is every bit a part of it. He’s kind of an in-your-face kid! I hope the blog is still readable and enjoyable. Tears and drama sell so much better, but I am happy to let that stuff go, even if it makes us boring!

Howdy, Pardner

All are glad that Daddy is home safe and sound. We had a great day as a family on Friday. My sister Erin was still here, so we took the kids to Chuck E. Cheese after Clare slept off her anesthesia. As Clare gets older, she can shake off the effects of the anesthesia much more quickly, which is great for all involved! A 3-hour nap post-echo did the trick.

We had a nice, lazy weekend. Lazy by my standards because we had nothing scheduled, nowhere to go, nobody to meet. Probably not lazy by Shawn's standards since we raked the front and back yards in those two days. Clare and I (almost) finished up our Christmas shopping while the boys cleaned the gutters. I guess I can see what Shawn was complaining about!

If you couldn't guess, this is the sheriff and his deputy, courtesy of our Texas-traveling dad. I called Jamie "Cowboy Bob," and he corrected me, "I'm not Cowboy Bob, I'm the Sherf." Sherf? He kept referring to himself as "Sherf." It took me a few minutes to figure out that he meant "Sheriff." And as he told me, Clare is his deputy. Poor Clare - she will always just be the deputy in their game-playing!

Echocardiogram #14

Clare had her sedated echo this morning. Shawn arrived home after midnight last night from his business trip in Houston, and the three of us trooped out of our house in the rain at the crack of dawn this morning to the clinic. Erin came and stayed with Jamie, so thankfully they were still sleeping peacefully when we left this morning.

Clare, as usual, was a trooper. Since we were at the clinic by 6:30am, she was still groggy from being woken up and had not realized that she missed her breakfast, which was a blessing. So she wasn't too fussy during the pre-echo procedures, and she willingly let the anesthesiologist take her from us and walk away with her. After the echo, her cardiologist came out to talk to us while Clare was waking up from the anesthesia. Clare's heart is still fairly unchanged since her last echo 5 months ago. Yippee! Her vessels have not grown too much, but that is not a surprise since Clare herself has not grown too much. Her blood pressures are higher, even being sedated, so the cardiologist is doubling her Propranolol dose (blood pressure meds). That was kind of a bummer since we've been hopeful Clare could eventually be weaned off her Propranolol. However, she has not had a dose increase since she first started on it post-surgery a year ago, so an increase in dose should not be a real surprise, it's just in the wrong direction we had hoped for! The portion of her aorta that was surgically repaired still looks fantastic and wide open. Clare does have a little more leaking in her aortic valve, but again, it's something she's had all along and they are keeping an eye on it. The biggest change was that Clare's right-sided pressures have gone up from a 45 gradient last echo to 55-60 this echo. The cardiologist wants to see Clare for another sedated echo around her 2nd birthday. At that time, if Clare's right-sided pressures have continued to increase like they did this time, then she is most likely headed back for another cath to relieve some of that pressure. We are going to have a follow-up next week for an EKG to be sure the conduction system in Clare's heart is tolerating her Propranolol increase.

We are relieved to have another echo behind us! I consider the news good because the rapid narrowing in Clare's vessels have slowed down considerably from last year. We get to have another 4-5 months between echos, and if there is a cath in Clare's future, it most likely won't be until after her second birthday. All good stuff!

Wasting Time

Yeah, I'm just playing online until "Bones" starts at 8pm. Sad, but true. I was up until almost midnight last night researching preschools for Jamie (I can't believe we've hit this stage in our life already!), so tonight, Jamie and Clare went to bed early, and I am going to veg. But if I sit in front of the TV too early, I will fall asleep in the middle of "Bones." And we can't have that.

The kids were both finally feeling better today. Jamie, the fish, had his swim class, which he absolutely loves. I thought it would be great because getting-bigger-every-day Mommy doesn't have to get in her bathing suit since Jamie is now proficient enough to be in the water by himself, and Clare doesn't get stuck in the exersaucer in the childcare room. However, Clare does not think it is fair that Jamie gets to be in the pool and not her, so I spend most of the swim class with one eye on Jamie (even though his teacher is great and very observant, you never know!) while trying to keep Clare entertained. It was 100 degrees in the pool room. Great for when you're practically naked, but not so good when you're fully clothed (and clothed for the wet, chilly weather we've been having). Clare, who is usually cold, was red-faced and sweating. Her hair was so damp she had little ringlets everywhere.

Part of my wasting time was going through my digital photos. So I had to share Clare after her bath (which she loves), Jamie playing knights (that's his helmet and arm protectors he told me - I didn't have the heart to tell him that was his hood and sleeves that I unzipped from his winter coat), and Jamie and Clare loving each other. I've said before that Clare is the biggest hugger these days, and she loves her big brother so much. Shawn was trying to take some photos of me with the kids, but Clare was more interested in hugging Jamie.
Oh... gotta go... it's 7:57pm.

AWOL

We've been blog AWOL lately. Shawn is away for the week on business, so I am the single mom around here. (Amy - I swear, I don't know how you do it!) We are surviving so far. At least the kids are eating and sleeping! Shawn and I always joke that whenever he goes away, one of the kids is either sick or teething. Well, this week, it is both (both sick, just one teething). Clare has been drooling up a storm again lately, so I think something is working its way through in her little mouth. Plus she's been under the weather with a cold (pretty bad on Saturday, but much better now). Then on Monday, Jamie had a high fever and was not his usual energetic self. Put it this way, he voluntarily took a nap, something that hasn't happened for months. Thankfully, other than some congestion, I have escaped the bugs going around so far. Just excusing our absence here! Shawn returns super-late Thursday night (technically on Friday morning), and Friday is Clare's sedated echo. So I will definitely be posting sometime on Friday. I have to admit as Friday draws closer, I am getting more nervous about this echo. Clare has gone so long without any intervention that I dread that time's up. Especially since tonight, as I was getting her in her pj's, I noticed her feet were purplish. We haven't seen that in a long time. When I pushed in on her sole, it never profused back - just a big white thumbprint. It could be that the colder weather is hitting, and her feet were just chilly. But they didn't feel that cold, and I fear it is something more.

One Year and Feeling Great

Another milestone today – a year ago was Clare’s open heart surgery. I wanted to write something inspiring, meaningful, insightful, but I admit I am so wiped these past couple of days that my brain is in a fog. I have been plagued with terrible migraines and now seem to be coming down with some cold-thing. Oh, I love winter.

A couple nights ago, I popped in our family video tape. Coincidentally, it was cued up to right before Clare’s surgery in November 2005. She was seven months old and Jamie was a little over 2 ½. They both were such little babies back then. Shawn and I were transfixed watching a tiny piece of our life from last year. In the video, we laughed and joked and played around. Clare was mostly in the swing or her bouncy seat, throwing tiny smiles to the camera every now and then, but mainly just staring at us wide-eyed. Jamie, as usual, was a crazy, silly goofball bouncing all over the place. We were such a peaceful, happy, normal family. It’s nice to remember us that way. Of course, we mentioned that Clare was going in for surgery, but then the tape jumps to November 18th, as if the 12 horrible days prior had never happened. There was Clare again - in her swing, looking exactly the same, our sweet, happy girl. In many ways, it's nice to have that version of our life. To remember that amidst all that pain, suffering, worry, anxiety, fear, and doubt, we had many joyful moments. Moments where all that other stuff didn't even matter. As I sit here typing this, Clare is rolling around on the office floor behind me getting into who-knows-what of Daddy's work stuff. And I thank God for that precious child. A year later, I am thankful for what we've been through and what we've learned about each other, ourselves, and life through these experiences. I am thankful God gave us the strength, courage, hope, faith, and patience to get through those days last November. And I am thankful they are over.

To Know or Not To Know

Being pregnant and already having a child with heart defects, we have been doing much thinking in our house about how far we want to go with testing in this pregnancy. Other than the normal ultrasound, we had no testing done on either Jamie or Clare (not that it would have mattered with Clare because the typical genetic tests do not include Williams syndrome, plus her heart defects could not be seen on the ultrasound). As I mentioned earlier, we had already decided to decline any testing through blood samples, amniocentesis, or CVS. However, when my OB brought up undergoing a Level 2 ultrasound (a more detailed ultrasound, which will be done by a perinatologist, who is trained in detecting fetal abnormalities using ultrasound) and fetal echocardiogram, it did make us pause. To make a long story short, we are going forward with these two tests, especially since they are non-invasive tests (unlike an amnio, which poses a risk to mother and baby). However, I still have mixed feelings on this.

Part of me is of the same opinion that what is the point to these tests? That is my feeling on the other testing offered. It would not affect my pregnancy, except make me more nervous and stressed! I don't buy into the argument that finding out prior to birth if your child has a genetic problem can help the parents prepare for having that child. I do not think anything can prepare you for that. It's like reading all the parenting books while you're pregnant - sure, you may get ideas for what you like and don't like, but you have no idea what your child is going to be like. A thousand books cannot prepare you adequately for the reality of parenthood. And just the fact of knowing your child has special needs cannot prepare you for the reality of dealing with those needs. If I had known Clare had WS while still pregnant, those would just have been words to me. I wouldn't have known that Clare would have no feeding or calcium issues in infancy (thank goodness), but would be on the severe end for heart defects. How could I predict that at 19 months old, she would not be crawling, but is starting to say words. I just don't know if I want to know if there is something wrong with my baby. Our chances of having another child with heart defects is so slim, but whoever thought we would be that 1 in 7,500 (or 20,000 depending on the study) that we would have a child with Williams syndrome? I certainly never expected it. That always happens to someone else, not you.

I discussed this a while ago with a friend who a few months ago found out her baby in utero may have heart defects and that there was a possibility the baby only had a 50% chance of survival to term. (She has since given birth to her miracle baby - you can read their story at www.anniesheart.blogspot.com, if you're interested.) Naturally, we talked about what they were going through and what we have gone through. Not that I would wish this on anyone, but she is the first person I know (and knew prior to having Clare and not meeting her because of Clare) to go through the same scares and emotions that we have gone through, so it was nice to have someone to talk to about it. Watching their emotional roller coaster these last few months made me appreciate that I didn't know about Clare's diagnosis while pregnant. In many ways, I was cheated out of Clare's babyhood. That first year of life that should have so much joy in it while watching your child grow was not the same for us. I am thankful I was not cheated out of having a normal, happy, fairly stress-free pregnancy.

But to wrap this long story up, we are going to have the ultrasound and echo. I guess, if anything, if everything looks normal, at least there is that peace of mind. Like I said, I am still on the fence about the whole thing. Maybe because I do have that teensy tiny itsy bitsy little piece of fear in me that they will find something. But you know what? If they do, we will deal with that as it comes, just like we have done and still do with Clare.

(So the photos have nothing to do with the post, but they were too funny not to share. This was Shawn and Jamie's "surprise" to me one night before bed. Clare thought it was hysterical, too. She laughs more often now and was cackling and flapping her "wings" the entire time she was flying around. The costume is from one of Jamie's Build-A-Bears. She actually looks big in something!)

Trick-or-Treat

Last year was full of tricks, and this year was full of treats. Halloween night was almost balmy here (really!), so even Clare enjoyed trick-or-treating. It could have been 40 below and Jamie would still have been raring to go. He totally understood the whole concept this year and was running ahead to the houses ready to get his candy. When Shawn asked him if he was done, he said, "Oh no, Dad, I love trick-or-treating!" It was a treat for us to go with him because last year, he went with his grandparents and cousins since we were in the hospital with Clare for her third cath. Clare may not have understood trick-or-treating, but she understands about mini M&M's, her new favorite candy.

Jamie and Clare dressed up for the All Saints Day parade at church this past weekend. Jamie went as St. Michael the Archangel (which he was super-excited about because that meant he got to wear wings AND carry a sword) and Clare went as (of course) St. Clare of Assisi. With the help of my friend Michelle and her sewing machine (thank you!), their costumes were so cute. Jamie loved every minute of it. We had previously talked about St. Michael with him and who he was. We basically told Jamie that St. Michael is an angel who fights the bad guys for God. (I think Jamie's still a bit young to get into the whole Satan thing with him!) He wanted to know if he was allowed to fight bad guys in church. It's a real example of nature v. nurture. We do not do anything to promote fighting, violence, weapons, etc. (obviously) and yet Jamie loves fighting. All the toys in the house fight each other, even Clare's sweet, girly pink and purple stuffed animals. It really goes to show that boys will be boys no matter what you do.

Poor Clare had to get two shots today. (The tricks came the day after Halloween!) It was the first round of the Synagis shots. And she has hit the magic number weight-wise where the dose cannot be put into one shot, but has to be in two. Let's just say, she was very unhappy. I was disappointed that her GI appointment was cancelled because the doctor was sick. As Jamie put it, "The doctor is sick? He can't be sick - he's the doctor!" We could have rescheduled for next week, but Clare has seen enough doctors in the last couple weeks (and she has her sedated echo in two weeks). I decided to wait until the beginning of next month when she has her next Synagis shots scheduled. Get it all done in one trip is my philosophy.

We had a couple beautiful days lately, but this morning, there was frost on the ground and ice on the car. We all had to get out of the house early to help out some friends, so it was the first morning I got to scrape the windows. Brrrrr. Now it's time to rake leaves before the snow comes!