Saturday, September 29, 2012

A Brother's Love

Thursday night, I got home after the kids were in bed. I quickly kissed TRex as he was almost asleep. Then I went into DQ's room. She was awake because she had gotten a splinter "from wood" that day and wanted it out. She asked me to do it even though she knew I'd have to use a needle.

So I grabbed a needle, tweezers, alcohol wipes, gauze, bandages, and the Mad Scientist. We asked her if she was sure and she said yes. So we tried to extricate the wood.

DQ screamed bloody murder. TRex woke up befuddled and ran into her room, worried, watching, and scared. We continued for all of two minutes before we realized how futile the exercise was and stopped, splinter still embedded in DQ's finger.

DQ fell fast asleep, but TRex was traumatized. We put him to bed, but he laid there crying, very upset at the thought that we would use a needle on his sister. I explained the necessity and then he understood. Unfortunately, he was still transfixed on his sister.

I tried to get TRex thinking about happy things. I told him that his cousins had signed up to walk with us at the Congenital Heart Walk that day and reminded him of the fun we will have. That made him happy, but didn't stop his worry.

I told him that he had received $225 of donations for the heart walk that day. He liked that too, but was still worried about his sister.

I offered to take the worries myself, but he wouldn't dare make mommy worry. So, we found a triceratops and gave all of his worries to the dinosaur. He was covered in armour, so could definitely take the pressure!

TRex felt better, so I went to leave the room. As I closed the door, I heard him crying again. I went back and he said he was still worried about his sister. I exclaimed "But I thought we gave those worries to the triceratops?"

But mommy, these are new worries.

I had TRex give those worries to the dinosaur, then I suggested he replace them with good thoughts; thoughts of playing with his cousins.

He wanted a better thought. He decided that he would dream of raising the most money ever for the heart walk. He became animated and shouted, "If we raise more than a million dollars we could do so much research! We could help DQ!!"

TRex went to bed happy, dreaming of all the money he can raise for congenital heart defect research. And first thing Friday morning, he came bounding out of his bedroom, piggy bank in hand "Mommy, I want to donate ALL of my money to the heart walk."

Maybe, just maybe, we have found a way to help TRex with his worries. Perhaps being proactive in helping find a "cure" for his sister will make TRex worry a little less.

If you'd like to help TRex reach his goal of raising the most money ever for CHD research, here is the link to his fundraising page:

Thursday, September 27, 2012

Someone Other Than Me

For the last several weeks, TRex has been questioning life, death, doctors, and God. He continues to find ways to talk about people who have died from heart problems and then ask if it could happen to his sister. He wants to know why doctors won't save everyone, specifically why might they not save DQ someday (afterall, we've told him he need not worry about his sister because mommy and daddy are bringing her to the best doctors, who are doing everything they can do).  He is questioning just how much doctors can do.

In the mix of that, he met a "best friend" this summer who told TRex all about God and how you will live forever if you just believe.  TRex (and DQ after learning from her brother) have begged me to allow them to believe in God so that they can live forever.  "Mommy, please, please let us believe in God. I don't want to die."

I've lost track of the number of times that I've explained that even people who believe in God die and that they can believe whatever they want, but mommy and daddy don't believe in any god. I've told them to ask whatever questions they have, but they don't think I can answer. So, I tell them to talk with their aunt, but they don't want to.

And so my poor little boy is piecing together life and death and religion all at the same time. The other night, after a discussion of hearts wearing out, TRex decided if he dies before me, he's going to let me know if there is a God. And then he said "And if there is no God, I don't know what I'm going to do." Of course, I explained to him that no matter if there is a God or not, he was going to live a good life, full of love, spent doing good work with the people that matter. He seemed to accept that, but he continues to worry.

Considering I've been having these conversations repeatedly over the last several weeks, I wanted to be sure TRex's worries weren't overtaking his schoolwork.  So, Tuesday morning, I met with TRex's new principal and his new teacher. We were there to discuss TRex's anxiety and how it affects school and to develop a plan for him when his worries over his sister became a distraction.

Wonderfully, they told me that TRex is adjusting extremely well and fitting in with the other kids. He is showing none of the signs he has in the past of worrying over his sister at school. But, they were concerned that he is bringing those concerns home to me. He is obviously pushing the worries out of his head in school (a very good distraction), but he still needs to get them out when he feels safe. He feels safe with me. Me.

Then they hit me. They think TRex needs a counselor so he can give his concerns to someone other than me. OTHER THAN ME!

Alarm bells rang out. My mind was racing: How could they want me to pay someone to take my place?  Shouldn't they be happy that my son is comfortable enough to tell me everything?!? Why would they want me to break that special bond between us???? He is my son!!!!

Luckily, I listened to what they said nonetheless. They love that TRex and I have an open dialogue and that he feels comfortable confiding, but experience tells them that TRex will stop coming to me at some point, probably when he needs it most. When I become too overwhelmed or concerned, TRex may hide his feelings to protect me and then he will be all alone. We need to get him comfortable with someone now so that should something happen down the line, TRex will be covered.

I should be grateful that TRex is in a school that cares enough to look out for him now and down the line (his principal offered to speak with him whenever he felt sad or confused or needed reassurance because of his sister).  And I will be grateful someday. But, right now, I don't want to think about the days when my sweet, sweet boy doesn't want to confide in me. I know they are coming, but I'm not ready to let go.

Monday, September 17, 2012

Ack Attack

Her name was Kayme (pronounced K Me). She was my imaginary friend between the ages of 4 and 6 (I think). She wasn't around long (that I remember) and eventually, she had an ack attack and never came back. At least, that is the story I've been told. At one point, I announced that Kayme had an ack attack and never came back.

I haven't thought of Kayme for years.  But then, the Dancing Queen became enamored with the Pinkalicious books. And in "Goldilicious", we meet Pinkalicous's imaginary unicorn. Last night, after reading "Goldilicous" for the billionth time in a week, TRex asked what an imaginary friend was. I explained and he asked if kids had imaginary friends. So I told him about Kayme.

Fast forward to tonight, when read "Goldilicious" again because it was DQ's choice. After the story, TRex asked me why Kayme never came back after her ack attack. I responded that kids grow out of their imaginary friends and when Kayme had her ack attack, I must have outgrown her.

TRex then wanted to know if an ack attack really was a heart attack. I told him truthfully that I didn't remember, but when I was older and was told the stories of Kayme, I suspected it was a heart attack.

He left it at that and went off to bed.

After I tucked in DQ and went to kiss TRex, he asked me why I didn't try to save Kayme from her heart attack. He didn't understand how I could let her go. Why didn't I call my dad to save her? Didn't I want to play with her any more? I tried to explain that imaginary friends don't last forever and I had other real kids to play with.

Then, we got to the meat of the matter. TRex wanted to know why someone wouldn't be saved when they had a heart attack. I had to explain that sometimes there was nothing to be done. He wanted to know exactly how and why a person could have a heart attack.

Then he was silent for a while.

He looked up at me and asked "Mommy, did DQ have a heart attack?"

No, honey, she never had a heart attack.

The relief on his face was palpable. And luckily for me, he never asked the next question.

Something tells me that I won't be so lucky in the near future.

Thursday, September 6, 2012

Playing Games in a Tent

Mommy, I want to dream about playing games in a tent with you aaaand . . . eating Azteca.

aaaand . . . eating healthy foods at home.

aaaand. . . eating strawberry shortcake.

aaaand. . . going to a chocolate factory.

Such is the nightly routine of my sweet girl. She is always going to dream of playing games in a tent with us and eating whatever suits her fancy that day (unless we read or watched Willy Wonka).

But how often have we played games in a tent?

Recently, not much.

It is 8:30 at night, when I'm sitting at the lonely computer, that all I want to do is play games in a tent. But, I can't. My babies are sleeping (or at least they better be!)

We bought this new house, complete with an office for me to work in. I've taken advantage of it. I've been home at bedtime so much more over the last several months than I had in a very long time. But now I want more.

I want to be able to play games with the kids, not just tuck them in. I want to be in their classrooms, not just hear about their days. I totally understand why being a stay at home mom would rock.

Don't get me wrong. I still love my work. I'm enjoying my new practice area. And we can't afford for me not to work (especially with the new house and an old house that is still in need of a renter--YIKES!)

But, sometimes, I want to play games in a tent with my babies and eat yummy foods, not just dream about it.
Having a child with a CHD is like being given an extra sense---the true ability to appreciate life. Each breath, each hug, each meal is a blessing when you've watched your child live off a ventilator, trapped in an ICU bed, being fed through a tube. Each minute is a miracle when you've watched your child almost die and come back to you.
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