Monday

In an attempt to remember more of the moments, I will update again.

It is the first Monday of third grade. Izzy didn't make it in until after 10:30. She missed math, but made it for recess. By the afternoon, she was in quite a bit of tummy pain. When school called, I had them give a small second dose of morphine to see if it helped. It didn't. I picked Izzy up around 3:00, with level 8 pain in her head and tummy as the pain had gotten worse.

I tried to figure out the cause of Izzy's pain. Was she in pain because something happened at school that made her sad? Was she in pain because she had overdone things physically? When she called, she was doing what she loves (drawing and writing about herself). I couldn't figure it out. Then, I saw that her oxygen tubing had not been connected to the tank. She had been working hard, gone to recess, without her oxygen. I'm guessing that explains the pain. By 5:00, with the oxygen really on for an hour and a half, she was feeling mostly better and even ate the last of her leftover pad thai from Saturday.

It makes me wonder if lack of oxygen caused the pain. Then again, the pain could be emotional--caused by Izzy's head. In that same hour and a half, she was home, with me, laying on the couch reading her books. I don't know and it is so hard. Is it physical? Is it emotional? Both?

Izzy was very sad this morning. I think part of her sadness was that she was late to school. She didn't wake up until her classmates had been in class for over 15 minutes. She was also sad because I spent most of Sunday working on the Congenital Heart Walk. One of the first things out of her mouth this morning was:

"Mommy, why do you work on the Heart Walk and CHF when you won't let me have surgery?"

I reminded her that she has had surgery--many surgeries. She responded: "But those didn't help." I reminded her that those surgeries did help and without them, she would not be alive today. I then explained that its not that I won't let her have another surgery, its just that we considered the available surgeries and they would only hurt her without helping her. I reminded her that I don't make the decisions by myself, but seek opinions from doctors (lots of doctors) and daddy and even her. I asked if she remembered when we discussed transplant. She did remember. She sat and listened silently with one tear streaming down her face.


After a couple silent minutes, she turned and asked "Mommy, but why do you raise money now when nothing can help me?"  I then told her that I always have hope that the research we fund will help her. I told her that Ma, Aunt Courtney, and I all work tirelessly for CHF to fundraise for research that could help her someday. I told her that all of our friends and family donate and attend our events--eat ice cream for her--just to raise money for research that could help her someday.  At this point, my eight-year-old was in tears. She was sad she said, but said that she didn't know why.

I knew why. At least I think I knew why.

Izzy and I have conversations like this daily.  Thankfully, she is articulating her concerns more and more so that we can help her work through her feelings, but it is still hardbecause Izzy doesn't want to admit to herself that she is sick and that she could die.

(Izzy does get counseling for her emotional well-being. Lots of counseling.)

What I'm realizing, as Izzy gets older, she has to be reminded about where we've come from and what we've done. Izzy doesn't remember any of her open heart surgeries. She doesn't even remember undergoing a heart catheterization. While these things are burned in my memory forever, they are just stories to Izzy. She doesn't even remember her wish trip (other than pictures and stories).

And as Izzy asks questions and learns more and understands more, she is losing her innocence and with that loss, her smile is going too. Don't get me wrong, she is still fairly happy, especially considering where she is and what she endures. But she's not the child who smiles even in the horrible times like she used to be. She's not a little girl any longer. While kids her age are imagining magical wonderlands full of fairies and candy mountains, Izzy imagines magic wands that take all of the bad in her life away--that give her the ability to run fast, to eat gluten, to not need oxygen. Sometimes though, we do get to see the little girl when her magic wand gives her super speed in a candyland.