A Cape for Super Cael

Somewhere along the way, Cael began referring to himself as "Super Cael." He's had fun with it and we've had fun with his fun (see here for some of the funny Super Cael things he's said).

We had a small family party for his birthday a few days ago and his creative Aunt Ruth made him an amazing "super shirt" (as Cael calls it) and cape.



He loves it.

And wears it as much as he can, anywhere and everywhere (including to Kieran's OT appointment, where a lady saw him and remarked to her daughter, "Look, Shelbi -- a superhero!").

From picking flowers with Mommy . . .

to riding his bike . . . (don't worry -- the cape isn't long enough to get caught in any bike parts)

to picking strawberries . . . 

.
 . . to helping Daddy pump up a tire, Super Cael does it all.

Aunt Ruth also made a shirt for Kieran so he could be Weedwacker Man, but for some reason, he hasn't worn it.

And, for the crafty types, these are the close-ups of the super shirt.

I'm certainly thankful for an artistic sister-in-law who enjoys sharing her talent (check out the mural she did for the boys' room here) with her family!

Riding in a fire engine

I've mentioned before that Seth is on the volunteer firefighting squad in our little town. Because we live down in a holler, the transponder (or whatever) that sends out the call to the firefighters doesn't reach the receiver in our house and  so Seth hasn't actually ever been able to help his team fight a fire. By the time the signal reaches his cell phone and he changes his clothes, puts his contacts in (I keep telling him he needs to get LASIK if he wants to actually make it to a fire on time), and arrives at the firehouse, it's too late and the fire trucks have already left, leaving him (and whomever else didn't make it on time) to hang out at the firehouse until they get back and can help wash the trucks. If it were me, I'd hang up my hat, but Seth perseveres through it all (and has, in fact, been taking firefighting classes so that he can become a state-certified firefighter . . . who hangs out in the firehouse). And the boys recently benefited from his perseverance. 

Our little town celebrated its annual homecoming last weekend and Saturday was the annual homecoming parade. The fire chief invited Seth and the boys to ride along on the fire engines that would be leading the parade. Cael, of course, was thrilled at the opportunity. Kieran, of course, was a bit concerned about what it all entailed and whether there would be loud noises and if he could ride on the one fire engine that he really liked. 

This one. The one that's almost a century old and has a bell he likes to ring.

Before the parade started, however, Kieran had to check out the band . . .

Oh how I don't miss those polyester band uniforms 

that didn't flatter anyone. 

Wait, what? I didn't tell you 

I used to play in the band--marching, field, and concert?

My bad. 

 . . . and the lawnmowers. 

Eventually we found out that not only did the boys get to ride in a fire engine--Seth would be driving said vehicle . . . for the first time. Ever. Through a crowd of people.

Even thought it wasn't the truck Kieran had hoped to be riding in, he agreed to this one and we all climbed in, while Seth figured out what went where and did what.

As we started down the parade route, Cael quickly got the hang of waving to the masses and proudly stood in the middle of the cab waving his little heart out.

Kieran, on the other hand, was a bit more reluctant to wave, although he did say "hello" to everyone.

A good time was had by all . . . and, thankfully, no parade-watchers were harmed in the driving of the firetruck through the parade route. 

Our three-year-old

For previous installments in this series, please see:

Cael's birth tale

Cael turns 1

Cael turns 2

I can't believe our youngest is three. How did that happen?

Three years old

Our Cael is a funny little guy (although he vacillates between wanting to be as big as his brother and staying little). He has a lot to say all day, usually in the form of "why?" He keeps a running commentary on everything he -- or Kieran -- is doing all day -- beginning when he wakes up ("where is daddy?" Daddy is at work. "why is daddy at work?"--every day we have this conversation), continuing through mealtimes ("I want oatmeal and juice for breakfast"), and only ending when his head hits the pillow at night (and sometimes, even after his head hits the pillow, he still has to finish the day by yelling through the closed bedroom door, "DON'T LET THE BEDBUGS BITE, DADDY!" (and if we don't say, "Ok, Cael!" he'll keep yelling it until we do)).

He loves helping with anything and everything. He helps me pull weeds from the garden, clean out the chicken coop, gather the eggs from nesting box (when we have chickens that actually lay eggs, that is), and make dinner. He also likes to help Seth mow the lawn with his own little tractor and to build whatever it is that Seth is building.

If there's a mud puddle to be found, he will find it. And jump in it. And walk through it. And splash in it.

He also has a sweet heart for other people. He actually watches out for and takes care of Kieran in many ways (I hope this continues!)--almost as if he knows that Kieran needs the help. And he enjoys cuddling with his baby cousin Hunter (who, sadly, doesn't live near enough to us to do that very often). 

He's also every bit of a boy (except for the non-stop talking part). He loves riding his bike, his tractor, the little quad, and the big quad with Daddy. He climbs ladders and jumps off of them (and anything else) without fear. He's fallen and banged his head so many times in the same spot that he has a permanent knot there now.

One of his favorite pastimes is throwing rocks into the creek. 

And yet, he still loves to snuggle with us and won't go to sleep until he's had a kiss and a hug from his parents.

We love our little Cael and look forward to seeing how the Lord molds and shapes his little-boy heart into the image of Christ.

Happy birthday, Caely!

Wheels for Williams 5

May is Williams Syndrome Awareness month and events are held all over the country raising awareness of Williams syndrome and also funds for the Williams Syndrome Association. The closest event to us is one that stands out from the rest of them -- it's a cruise-in car show called "Wheels for Williams." This was our fourth year to attend but the fifth year it was held (I was in the hospital after having just given birth to Cael in 2011 so we skipped that year). 

Wheels for Williams 1 (2010)

Wheels for Williams 3 (2012)

Wheels for Williams 4 (2013)

This year, Kieran again made a bee-line for the little pedal car he's confiscated the past few years. I mentioned to him before we left for the event that we were going to the place that had the pedal car and he knew right away what I was talking about. In fact, on the way to the event, we drove through heavy rain and Kieran said, "Is it raining? If it's wet, I can't ride in the pedal car." He was very concerned that he wouldn't be able to bond with the car again. 

But when we got there, the sun was shining and we were able to enjoy our day and Kieran was able to enjoy the car.

Since the tagline for the event is, "If it has wheels, bring it!", we brought our little bike so that Cael would have something to ride on while Kieran was enjoying the pedal car. 

This year, in honor of Mother's Day (the following day), the host asked the Williams syndrome moms to choose their favorite car. After walking around for a bit, we decided on this purple car . . . because it was so pretty.

Seth, of course, had a different set of criteria for his favorites, and these were some of his choices:

More importantly -- to me -- was meeting and talking with the other families of those with Williams syndrome who attended the event. We were able to catch up with old friends and also meet some new ones.

One of the things that made an impression on me this year was the amount of family involvement the other families had. One family brought their step-father; other families brought a mom and additional family members. The host (who has two children with Williams syndrome [one adopted]) had his entire family helping in the event -- including his college-aged daughters. I loved seeing how involved and interested and encouraging the extended family members were.

My sister-in-law, Katy, after Kieran was diagnosed, immediately volunteered to come with me to the first WS conference and having her there was such a blessing. My parents were able to come to the second WS conference in Boston in 2012 and also come up every year around Thanksgiving, when we visit with the Williams syndrome specialist at a nearby university. And, we're looking forward to the time -- a few years from now -- when they're retired and will have the time to come to this particular event with us. Having supportive family and friends is amazingly important in the journey through life with a child with special needs, and we've been blessed with both.

This year, I participated in the auction, which also raises funds for the WSA and came away with this amazing custom Wheels for Williams fire ring. I didn't plan it, I just saw it, jumped into the auction on it, and won it. As I was going to get our car so I could put it in the back, Seth texted me, "Did you just buy a fire ring?" When I said, "Maybe," he replied, "??????" I told him it was for a good cause. 

I have no idea what I'm going to do with it as we don't regularly have fires at our place -- would it be sacrilegious to use it as a flower planter? Or a decorative item in my garden? 

The event -- as always -- ended with a bang. And, as always, we look forward to going again next year. 

The first of the season

I forgot to add this back in April (April 17, to be exact) when Seth mowed the lawn for the first time this year. Just because I like to have a record of that stuff. For some reason.

The Diagnosis

Our first exposure to Williams syndrome came in January 2009. We had taken Kieran to the local children's hospital to have an echocardiogram after his pediatrician had detected a heart murmur at his 2-month visit.

It had been a rough first two months. He had been born a week late but was still fairly small (just over 6 pounds). He rarely slept, wasn't eating well, wasn't gaining weight, and cried all the time. All the time. It was hard not to think, "Surely this can't be normal." By that time my friend's baby, who had born a few days before Kieran, was sleeping 5 or more hours at a time during the night; Kieran was sleeping 1-2 hours at a time around the clock. Combine that with feedings that took 45 minutes and crying jags after and before feedings that lasted hours, and I was one sleep-deprived mother. I blame that for what didn't happen after our cardiology visit.

After Kieran's echo, we waited a long time as the doctor reviewed the results and took more pictures. Although the normal procedure was that the results were sent to the pediatrician to review and go over with us, in this case, another doctor came in to go over the results with us. By that time, we wondering what was going on. When the cardiologist came in, he pulled up a small stool, sat down, put his fingertips together, and looked very serious.

"Your son has a condition called supravalvular aortic stenosis and . . . this condition is usually associated with a genetic condition called Williams syndrome."

We were stuck on the aortic part of what he said and asked him questions about what that meant for Kieran and his future. And I remember asking, in passing, "Would the Williams syndrome explain some of the other difficulties he's having?" The doctor replied, "It might." I think he even mentioned that it would be a good idea to have Kieran visit a geneticist for testing. But because he seemed so noncommittal about it, I didn't really pursue it any further. And when I Googled the heart condition to find out more about it later, I didn't search for the correct term -- all I managed to hear, in my sleep-deprived state, was "aortic stenosis." (Which is how I described it in this post.) And, although "supravalvular aortic stenosis" is one of the primary markers of Williams syndrome, "aortic stenosis" isn't and didn't return any results on a specific genetic disorder. And I hadn't registered "Williams syndrome" so never even searched for that.

Over the next few months, we visited with a GI doctor at the children's hospital to try to figure out why he wasn't gaining weight or eating well. And also made some visits to the urology department after Kieran had a UTI (he was diagnosed with renal reflux). We also noticed -- as you can see in the picture above -- that his head continually tilted to one side (a condition called torticollis, usually associated with low muscle tone).

He met most of his early milestones on time, until it was time to sit up on his own and begin crawling. Then the delays began. And he seemed overly sensitive to some sounds, while being very attracted to music (we used to joke that Kieran's favorite TV program was the one where we turned on the classical music station and he would watch the DirecTV logo bounce around the screen as he listened to the music).

Finally, in late June of 2009, we visited with an endocrinologist for another issue. When she came in the room, the doctor looked at Kieran, sat down, and said, "Has anyone ever mentioned Williams syndrome to you?" She then, very gently, went over some of the features she saw that were characteristics of those with Williams syndrome--his puffy eyelids, long upper lip length, small chin . . . . She then said that she was going to write a referral for us to see a geneticist and took a blood sample for them to analyze.

I remember going home, Googling "Williams syndrome" and reading all about . . . Kieran. There he was -- on the websites that popped up and described those with WS -- all the characteristics that I've underlined above were characteristics of those with WS. That was him. And I remember sending my mom an email that said, "Take a look at this site. Does this sound like Kieran to you?" I think Seth was more in denial than I was at that time.

We both waited for the geneticist to call with the test results. And I remember very clearly the day I went with Kieran to meet with the genetic doctor and he gave us the results (Seth was working). August 11, 2009. I remember the doctor went over the characteristics, again, that Kieran was showing, and I remember that he was very encouraging about Kieran's diagnosis and what it meant for his future. It was the confirmation we didn't want of something we already, deep down, knew. And I remember that through it all I was fighting back tears.

I called Seth and said three words to him when he answered, "He has it." Seth immediately left work and came home. We made it through the rest of the evening and then, after we put Kieran in bed, we both started crying. I didn't stop crying for the next three or four days. I remember waking up in the middle of the night those first days and thinking, "Surely this can't be happening." For months afterward, it was difficult for me to talk about Kieran's diagnosis without tearing up. There's a very real sense of loss that gut-punches you with a diagnosis like this, which I later wrote about here.

This post (which I've reprinted here with my own permission) that I wrote the day we got his diagnosis doesn't reflect the tumultuous emotions we were going through at that time but it does reflect the truth that we clung to (and continue to cling to) even as the emotions raged.

It wasn't supposed to be this way. Life, that is. Life wasn't supposed to be the way it is. Women weren't supposed to die of leukemia when their children were three years old. Couples weren't supposed to struggle with infertility. Grandmas weren't supposed to slowly succumb to Alzheimers. Little girls weren't supposed to be born with an extra chromosome.

And little boys weren't supposed to be born with 26 genes deleted from the long arm of their seventh chromosome. Life wasn't supposed to be this way--full of death, disease, and suffering. Life was supposed to be full of . . . well . . . life. That's the way God originally made it--a "very good" creation, He called it. And yet here we are, living in a creation groaning under the weight of the Curse placed on it by its Creator because of sin . . . my sin, your sin, the sin of all mankind. It's not pretty, the effects of this sin.

In January, when we found out Kieran had the aortic stenosis, the cardiologist mentioned that it was usually associated with Williams Syndrome, and he wanted us to have Kieran undergo genetic testing. Since then, several of his other doctors have mentioned the association between aortic stenosis and Williams Syndrome, however, I didn't really think anything of it -- they didn't make it sound like it was serious, and I never bothered to google it and find out what it was.

Last week, the genetics office called to set up an appointment. That appointment was today. Today we found out that Kieran has Williams Syndrome. In some ways, this changes everything. In some ways, it changes nothing.

The diagnosis explains so many things--his "failure to thrive," the frustrations with his eating (or lack thereof), the delayed sleeping-through-the-night, why he doesn't really look like either of us, the aortic stenosis, the kidney reflux . . . . At this point, the doctor wasn't able to determine what level of mental disability K would have, but assumed it would be in the mild to moderate zone, rather than severe. He was encouraging that Kieran would be able to live on his own in the future, although he'll probably need help with things like keeping track of his finances. And the doctor has referred us to the state physical therapy program so that we can keep him on track (or as close as possible) developmentally.

We'll have more doctor visits with the geneticist (and all the other doctors Kieran has been seeing) in the future. We'll just take it one thing at a time and see how Kieran develops. God is good--all the time.

The Adventures of the Little Hunter

Some of you know my sister and have asked about her new baby--here's an update from her about "Baby Hunter" (as the boys call him). 

There are few other things that capture his attention and calm this little Hunter like the outdoors. He sits in his bright blue Bumbo seat in the backyard contentedly. His face does not necessarily have a smile, but neither is he fussing to say that he wants to move. His big blue eyes examine the world around him. He watches his parents turning the compost and watering the garden. He’ll look up at the big tree towering over him. "Ahh, this is the life," he thinks to himself. He could sit out here all day. These days, as adventures go, you’ll find him enjoying stroller rides around the neighborhood, or sitting out by the main road watching the cars go by like he’s watching a tennis match.

Few other things capture and calm him like the outdoors, however the piano in his parents' living room should be noted. He is able to sit on the bench on his own for brief periods of time before the tilt becomes too much and he gives into gravity. He'll turn the pages of the music while Mom or Dad plays and hold down a key or two to add to the melody. Remarkably, he does not wildly bang at it.

This little Hunter must eat during the course of his day, and he does it six times. Two of those six include solid food - once in the middle of the morning and once as part of his bedtime routine. Fruits and vegetables are on the menu. Wheat is no longer offered as it causes the little Hunter to empty his stomach in an unceremonious way. Peas are still on the menu, though he wishes they were not. He tells his parents this wish without using words. His facial expressions, crying, spitting, or any combination of those clearly convey the message. Now that he has the hang of eating, he closely watches his parents eat. He will even open his mouth when his parents do, hoping food will come his way. It’s not only food that he wants to put in his mouth; these days everything goes in.

The adventures of this Hunter take us to his love for his dad. No one elicits a smile or a giggle from him like his father. When Dad arrives home at the end of the day, Hunter will stretch out his arms and lean towards Dad to be held by him.  

The adventures of this little Hunter end around 8:00 PM because there are few adventures in the night anymore. Since he turned five months, his nights have become more about sleeping and less about crying. We lay him down in his crib on his back, he slides his fingers into his mouth, rolls over, and falls to sleep. His parents rejoice!

Coming Soon: The next installment of Adventures with the Little Hunter is sure to include tales of the little Hunter that crawls!

40/40

It's about this time every year that I celebrate, in some form or another, the day I was born into this world. This year, I celebrated 39 years of life post-womb.

Really -- this is my first time turning 39.

I promise.

Since 40 seems to be a momentous year, I thought I might do something momentous in the year leading up to it. My friend Dan did (at least) 50 push-ups a day in the year leading up to his 50th birthday (which he celebrated a few weeks ago), so I thought I might try something similar. Instead of push-ups, however, I chose sit-ups. And instead of 50 per day, I'm doing 40 (for what I hope is an obvious reason).

If you know me at all, you know that exercise and I aren't exactly BFFs. I've started various exercise routines over the years and stopped all of them for one reason or another. So committing to doing 40 of any type of exercise every day is a bit daunting to me, but I'm up for the challenge.

At least for now.

Or until something on my body breaks that prevents me from doing any more sit-ups.

Or until Dan forgets to remind me to do the sit-ups every day (no pressure, Dan).

The rules I'm following are simple:

1. "40 sit-ups" a day actually means "get 40 sit-ups in however you can in one day."
2. I won't be doing them consecutively (that's a goal I'll aim for, I suppose). For now, I'll start with 15 in the morning, 15 in the afternoon, and 10 before bed.
3. I will take breaks, as necessary (need determined by me).
4. I will use any other body parts, besides my stomach muscles, available to help me actually "sit up" (until I can actually do sit-ups the way they're supposed to be done -- another goal I'll aim for, I suppose).

Yes, 39 is shaping up to be a year full of pre-40 fun. Or something like that. I won't be posting any "before" and "after" photos of my abs (for what I hope is an obvious reason), but may decide to post a video of me doing the final 40 sit-ups next year (like Dan did on his blog). Until then, feel free to encourage me (in any way you wish) in my sit-up journey and to join me in doing your own 40 sit-ups-a-day.