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Thursday, November 8, 2012


This week has been a whirlwind for our family. I feel like I can't stay on top of the things that are hurtling my way! On Monday, Ella had to begin her 24 hour portable EKG monitoring to see how her heart is beating. Last year at a regular exam, we realized she has an irregular heartbeat, so now we have to monitor it every year. 

We went to the hospital, where the nurse attached five electrodes to Ella's little chest that were hooked up to huge wires, which was hooked up to a monitor. On petite little Ella, the whole thing looked like a monstrosity. The nurse rubber-banded the whole lump of cords and machines together, attached a strap to go around Ella's neck to hold it in place (that was too big so didn't hold anything securely at all), and then we tried to tuck the whole blob under Ella's shirt. Hoping she, and the world, wouldn't pay too much attention to it all. 


Ella was distraught for almost the whole 24 hours about the Mechanical Blob that was attached to her. She spent the day holding the monitor with one hand while playing sadly with the other. She had to sleep on her back, which is not how a tummy-sleeper feels most comfortable. On Tuesday, she had to go to preschool. I had her wear one shirt that covered the Mechanical Blob and tucked the shirt into her jeans, hoping it would alleviate Ella's need to hold the monitor with one hand. Then she wore another shirt over the first one to just cover everything better. 

Right away when we walked in the door to school, one of Ella's friends asked her mom what was in Ella's tummy. I explained that it was a little computer that listened to Ella's heart beat. And wasn't that so cool? (Yeah, right.) I had left Ella's teacher a message that morning before school to let her know what was going on. When we walked in the door to her classroom, I saw that Ella's teacher was out sick that day. In my humble opinion, we should provide teachers with bubbles to live in during the school year so they are NEVER sick so they can ALWAYS be at school so my children's routine is NEVER interrupted. (Yeah, right.)

Luckily Ella's assistant teacher was at school, just like every other day, so we touched base about Ella's Mechanical Blob. When I picked Ella up from school, she was in the teacher's arms, sobbing. And wearing a coat that wasn't hers. The teacher asked if that was Ella's coat. I said no, but it looked a lot like hers! Brown and soft with white fuzzies on the inside. It turns out there was some disagreement between Ella and the other Ella in her class about whose coat was whose. This totally cracks me up. The Ella's apparently debated about the coats, and the teacher said that once the other Ella had put on my Ella's coat, she refused to take it off and was adamant that it was her coat. This, of course, broke my Ella's tender little heart. She can't stand it when a wrong has been done, especially to her. 

We got the coat fiasco straightened out and all the Ella's went home with their own coats. But my Ella just wouldn't stop crying. I finally asked her, as I forehead-hugged her in her car seat, if she had been hurt. She said no. I asked if she was still sad about the coat fiasco. No. I asked if she had just missed me. And yes, oh yes, that was the right question. She burst into fresh tears and wept with new gusto. I felt my heart crack into shreds of pieces. Poor little girl. I hugged her some more, and we went home to snuggle away the stresses of a three-year-old's day.

Later that day we were able to take off the stickies from the Mechanical Blob and return Ella's chest and tummy to their normal size. Getting five electrodes off a toddler's chest that have apparently been adhered to the skin with Gorilla Glue was not easy, and now Ella has a rash from it. But we got the monitor turned back into the doctor and now we wait for results. 

In a week and a half, Ben and Ella will make the trek to the hospital to meet with our pediatric cardiologist. Ben does this every year because of his aortic stenosis, and he is beyond ecstatic that he gets to bring his little sister this year to be checked too. He's thrilled. He keeps telling her all about the details of the visit. He can't wait to show Ella around. As long as Ella has Ben there with her, I'm sure she will feel more brave. And this year, I will take the two of them to the cardiologist. 

For the past few years, I've made Alex take Ben because I just can't handle the raw, all-consuming fear that comes with this appointment. I can handle so very many other scary things where my kids are concerned, but Ben's heart is so fragile and so important, I can't bear it if the cardiologist has to tell me some year that we have to do something to fix Ben's heart. I don't think I could survive. Somehow I imagine when that year does come that it would be easier to hear the news from Alex. He'll know how to tell me the horrible news while wrapping it in bubble wrap so it doesn't rip me apart quite so much.

But this year, I'm going. Because Ella is so little. And because she's Ella. I have to be there. To soak in the news, the status of her and Ben's hearts, to hear the prognoses, to know what our plan is for the next months. 

So we wait. Wait for the news. Wait for the appointment. In the meantime, life keeps trying to run me over! Ben was home sick today. Aidan must be fighting the virus our family has been passing around because he has been pesky and tired lately. Jonah is having major anxiety about school and homework, and unless I challenge his behavior directly, would spend the whole homework time sniffling and trying to produce tears. Aidan has been complaining of not being able to see well, so there's a trip to the eye doctor in our near future. Ben and Jonah have book reports due at school in exactly one week, and haven't even finished reading their books. Aidan's teacher agrees that we need to have another meeting to see how to best help him succeed at school, because he's really struggling with his ADHD. Ben has a cyst that needs an ultrasound so we have an exact measurement of it. Ella needs to have her yearly hip check to make sure she doesn't have anything funky happening with her growth and development. Aidan needs to see the allergist to eat peanut butter with her. His blood test and skin test came back negative for peanut allergy, despite the fact he was allergic previously. So he has to go to the allergist's office, armed with a load of peanut butter, that he will ingest in tiny increments to see if he goes into anaphylactic shock. Sounds fun, right?

And. Ella has started having separation anxiety. She normally is so proud of being independent and doing things by herself, without Mommy, but this week she has needed Mommy. At her therapy group yesterday, she wouldn't go without me, and couldn't stop crying when I tried to leave. So our incredible therapists let me come to the group with Ella. Today at school, the teachers (who are both healthy again, thank goodness!) had to peel Ella off me, crying, when it was time for me to drop her off. But, at gymnastics this afternoon, she was her normal self. Happy, independent, trying so hard to be courageous on all those big pieces of gymnastic equipment. So hopefully the Crying Funk is over. Hopefully she'll sleep well tonight, without needing Mommy on the cold, hard floor next to her. Hopefully the next couple days will restore Ella to her normal joyful self.

Maybe I should look at "life trying to run me over" as "life trying to distract me from the raw fear of heart checkups that are coming up." Maybe I should be more grateful that I don't have time to sit around and worry about what might be. Because my worst fears probably won't be actual reality. At least not this year, hopefully. 

So I'm trying to take deep, slow breaths when I feel the fear, or like I'm being run over by life. I try to not let my chest squeeze with stress or fear, because the last thing I need is to have to go to the cardiologist myself! We have enough heart issues for one family. We'll just wait and see. 

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