finding balance when illness happens

i love my kids. i really, really, deep down in my soul, do-anything-for-them, love my kids. that said, there are moments where i don't know how to do that best or show it equally and that's something that i'm finding so hard.

i think it's more difficult when you have a kid with special needs and i'm still trying to get used to thinking about Caleb in that way. i always find myself trying to minimize and downplay his struggles, not that they are huge struggles but that almost if i accept them it makes his diagnosis more real. i still have difficulty accepting that he's on the spectrum and that he's going to struggle with things and i still forget that struggles aren't always bad for us.

anyways...

Caleb and Sadie each demand a lot of attention and for very different reasons. Caleb struggles with social situations and managing his tantrums and outbursts. Each week he spends 8 hours with his TSS and a couple of hours with his BSC and now we're adding occupational therapy to the mix. all of these things help him a great deal but it's a lot of attention that i think he would prefer not to have. on the other hand, Sadie will not be ignored. she almost seems to crave attention, at least most of the time and when big brother seems to be getting a lot of attention, it can be very difficult for a little girl.

a few weeks ago (Saturday), Sadie came down with a fever. not super high but significant enough to slow her down. we didn't see anything else wrong with her and so we administered ibuprofen and figured it would clear up in a day or two. Monday came and the fever was still there and still making her uncomfortable. we'd give her medicine in the morning, about lunch she would perk up for a bit and then by the afternoon she would be miserable. Tuesday morning was originally supposed to be her 4 yr checkup but instead became a sick visit when they saw the fever. the doctor looked her over and i still thought we were going to be sent home, convinced that she had the flu and kicking myself for not getting her the vaccine weeks ago at her brother's appointment. our doctor instead had a very serious tone and said that he wanted tests done. he mentioned mono, TB and the need for a chest x-ray and then the possibility of this Kawasaki syndrome, a very serious concern that would require a stay in the hospital. he pointed out Sadie's swollen lymph node on her neck- "her hurt neck" that i thought was code for a sore throat. then it was off to Children's for her tests.

for the rest of the week, Sadie became my focus. trying to take care of her fever, keep an eye out for other symptoms and generally be there for her. at the same time, trying to keep things as normal as possible for Caleb. Wednesday afternoon was the most difficult and the most conflicting moment for me. i noticed a red rash on the back of Sadie's shoulder and after reading up on the symptoms of Kawasaki (thank you webMD), knew that i needed to call the doctor. i filled him in on the change in her condition and he promised to call back with directions for us. Caleb was working with his TSS, a usual Wednesday afternoon but at the same time a lighter schedule then usual. at 3:15 the doctor's office called asking us to be there for 3:45. from the new house it takes us a good 20-30 min to get into Shadyside but i said we'd be there. i went upstairs and told Caleb we needed to go to the doctor's office for Sadie. he immediately said no and then the struggle began.

my little guy had no understanding of Sadie's need to get to the doctor's not because he didn't care but simply because he was focused on this unexpected change in his day. when he gets hit with these changes, sometimes he just says no and that's when i don't always know what to do. thankfully, i had his TSS there. she worked with him, talking to him, explaining to him, and coaxing him when i just didn't have the time or the patience to. i went back downstairs and gathered up Sadie. i took her down to the garage. Caleb still was refusing to come. i put her in the car and felt so bad leaving her sick and miserable even for the few moments it would take to go back upstairs to get her brother. again, thankfully, Caleb continued to refuse to go but he didn't tantrum. he's had trouble lately with tantrums and has had a few recently that lasted a good 20 minutes- time i didn't have in this instant. he let me carry him to the car, no shoes and no jacket. he also let me put him in and buckle him up. this would not have happened if he had been mid-tantrum. have you ever tried to buckle a 5 yr old in a seatbelt? it doesn't work well. i was so thankful that it went as smoothly as it did.

however, it still frustrated me that at this moment when i really needed to focus just on Sadie, i couldn't. i don't know, maybe i'm naive to think that parenting can be balanced that easily, maybe it's always going to be a give and take with my two. it did make me worry that Sadie might feel that she never gets the spotlight completely- that maybe she will continue to "demand" our attention to balance out all that we need to give her brother. it's a very frustrating situation to be in.

we made it to the doctor's relatively on time. her doctor was pretty confident that it was Kawasaki and got in contact with Children's. then he sent us home to wait one more day. Thursday morning we got the go ahead to take her to the hospital and get her admitted. fortunately, Caleb's preschool is fairly close to the hospital so he got to go to preschool, and we got to get Sadie set up in the hospital.

she was very brave getting an IV and numerous temp and blood pressure checks. they did an echo-cardiogram and finally started her treatment, an immuno-globulin drip. she bounced back pretty quick and enjoyed getting to watch a bunch of movies and cartoons, not to mention all the get well presents that appeared.

Friday afternoon, Caleb came to visit and he was able to see that Sadie was okay and that the hospital wasn't as scary as he thought it would be. they even spent a couple hours playing in the playroom together.

after a day of observation, Sadie was released to go home and we were all thankful to have her back.

she's expected to make a complete recovery. she has a follow-up echo-cardiogram in January and until then, she's enjoying a baby aspirin a day to prevent clotting and keep her heart in good shape in case there was any damage to it. we're so thankful that everything went so well.

and now things are back to normal... or as normal as they get here :-)

Out with the trash

This morning was a difficult morning. No, this morning was an almost impossible morning- a feverish 4 yr old, a tantrum-ing 5 yr old, and a mommy quickly learning that her quiet morning to herself was going poof. For extra fun, add poop on the floor, a naked tantrum-ing 5 yr old, and the added drama that illness needs when your 4 yr old is a diva in the making. It was not fun.

The real parenting moment though, was when Caleb, finally bathed, calmed and in fresh pjs, looked at me with watery eyes and a pout-y mouth and asked if I was going to put him out with the trash. It was heartbreaking to hear and immediately my eyes teared up too. I told him that I would never do that and that no matter what, he will always be my favorite boy. Then he asked why and again my heart just melted as I hugged him and, looking him in the eye, assured him that I love him so very much.

It made me think that no matter how much people tell us that they love us sometimes, in some moments, we still need that reassurance that their love will always be there.

Halloween 2010

Just needed to post that the boy was Superman for the third year in a row and yes, the costume still fit and may still fit next year. I'm just happy that he's willing to dress-up and go trick or treating.

So here's a little time line :-)







And you can't ignore Miss Cinderella!

Ballet Class

So I had to get these pics up for my family who aren't on facebook. This week Sadie's ballet class invited parents to sit in and watch the class. Of course, I was so excited to be able to be in the room instead of sneaking peeks through the tiny little window in the door and I made sure to bring my camera. I dream of one day being able to photograph Sadie dancing on toe maybe it's all those years of studying Degas and his ballerinas, maybe it's my envy for how graceful ballerinas are... I don't know but I'm holding on to that dream.

In the meantime, I thoroughly enjoyed snapping a few pics of my little 'rina

Happy 4th Birthday Sadie-girl!

Little girl growing up... Sadie is now 4 going on at least 14 or 15. It's frightening. Somehow this child has managed to have all the confidence, boldness and outgoing-ness that her daddy, brother and I have never had. What she lacks in knowledge, she makes up for with enthusiasm. That's our Sadie.

Over the past year, we've had some pretty big milestones. Sadie mastered the potty in just under a week (a huge relief after the battle of potty-training her brother). She got to go to her first birthday party (non-relative). She went ice skating for the first time and attended her first ballet class.

She also invented her first imaginary friend- the first of many... but more about that later.

Sadie is my little ball of energy and joy. Yep, I can't think to describe it any other way. First thing in the morning, she wakes up with a big smile on her face and asks "What are we going to do today, Mom?" Something as simple as getting clean clothes from the dryer, she gushes over "Oh, thank you Mommy for my clean pjs" and she takes them and dances into her bedroom to put them away. Every gift for birthdays or Christmas's or for no reason at all is accepted with such enthusiasm that you might be tempted to think that she's acting for someone but the feeling is real, even if it is given with a dramatic flare. She never fails to remind me that anything can be good or exciting if you just look at it from the right perspective.

Now, don't get me wrong, the princess is certainly capable of showing the world her less desirable moods. She can be one whiny-cranky mess when the world aligns against her. Even while trick or treating the other night... it was our first time in the new neighborhood. Everyone was out. It was cold and the princess didn't want her jacket to cover her beautiful Cinderella costume. (Yes, we're a bit of a diva at times) We made it out and over to the next door neighbor's. Then we hit the house after that. After the third house, we had to walk around the corner and down the next street a little ways. Little Cinderella starts dragging her feet, "but I waannna trick or treat" "well, Sadie, that's what we're doing" We could only figure that 1. she was cold and 2. the house here are much farther apart than in Oakland, requiring her little feet to do a lot more walking. She perked up after getting her jacket on but in the end, they only made it down one street before they were done for the night.

She also can hold her own with a tantrum but fortunately those don't happen very often and when they do, it's usually because she is just too exhausted.

Sadie is our social butterfly. She loves being the center of attention. Often we believe that the world is her stage and we're just the audience. This is a lot of fun (most of the time). You never know when she's going to start a song or a dance or talk with a weird accent and poses or take a dive. She continues to be our physical comedienne. In fact, as I'm typing this, she struts down the hall with a blanket on her head and in her most elegant voice asks "how do i look?"

Preschool started a couple months ago and she's in the class Caleb had last year. She goes 3 mornings a week and on Wednesdays, she gets to stay for lunch. And apparently, Sadie already is developing quite the entourage. She has a best friend, Samantha, and judging by pictures in the classroom, they are inseparable, well, until the teachers have to separate them for talking too much during circle time. Recently, there's also been a boy in the picture. Now, Sadie has always managed to get the boys to follow her around but in the past few weeks, we've been hearing about Nathan and how he likes to hold her hand. I was not expecting this and I'm still not sure what I think of this. I think Daddy is even more unsure. But at any rate, she is a friendly, out going girl and I'm thrilled to see her making friends.

In addition to preschool, Sadie started taking ballet lessons. She's been obsessed with it since we were first introduced to Angelina Ballerina and if you ask what she wants to be when she grows up, she'll tell you "a real ballerina one day" (a line from Angelina Ballerina). When Caleb started working with his TSS, we thought it might be good to give Sadie a special activity and so over the summer we tried out a 5 week class through The Pittsburgh Ballet Theater School. Needless to say, she loved it and surprising to us, she really learned things. She would "teach" us how to do curtsies and use phrases that we know she learned from class. After that success, we decided to sign her up for the year. So every Thursday morning, we scramble to get Caleb to preschool and get her to ballet and she's loving it. To top it all off, we're attending The Nutcracker Ballet for the first time this year and she absolutely can't wait to go.

Sadie is very smart but doesn't always use it for good, like her brother. She's learned manipulation and tries very hard to "cute" her way out of trouble, i.e. shrugging her shoulders and grinning when she's caught doing something wrong. I swear sometimes I think I'm living on a sitcom with the antics she comes up with.

Sadie has added more people to our family over this past year... Margot, Sal and Ziggy. Just look back at past posts and you can read all about them. In short, they're her friends from Mexico and they make frequent visits. She also has a Mexico Mom, a Mexico Grandma and a Mexico Grandpa. So far they've been harmless and quite entertaining. For example, her Mexico mom likes to eat ketchup on pancakes.

Sadie loves to play pretend and for a while, we never knew what name to call her. Some days she was Cinderella, some days, Clara, and my favorite, Spider-man Sadie. She's been really great with getting her brother to play along with her and that's one of the special things that we thank God for about her.

She also very much loves her books- almost as much as her big brother. She loves to sing and dance and dress-up and play soccer and ride bikes. She's my active child. We've noticed that she's the kind of kid that gets more spastic the more tired she gets. It's funny to watch but not always funny to put up with.

And surprisingly she manages to have this grace about her despite being a complete clutz. I really have trouble understanding it.

Sadie's our special girl and we've had so much fun with her this year and we look forward to watching her grow over the coming year.