Suckerpunch

Last week during a beautiful and very normal summer day, Phoenix was busying herself by doing some workbook pages while I cleaned.  She came out of her sister’s room, looking very upset, and when I asked her what was wrong she started crying her eyes out.  She couldn’t talk for an hour (probably a minute) because she was crying so hard, so I just held her and hugged her, and assumed that sister had hurt her feelings. Wrong.  She told me that she was doing her math sheet (of simple addition) and when she got to the last two problems, she could not get them right.  I looked at the sheet.  She did 13 problems easily, quickly, correctly…but #14 and #15… she was subtracting instead of adding.  Not a big deal.  Wrong.  It was a real big deal because she knew something happened… somewhere in her head, something changed…and she was confused and she was scared.  She knew the answers were wrong, but she could not change it.  “I don’t know what’s wrong.  I can’t do it anymore.  I don’t understand. I don’t know what happened to me.”  She was cognizant enough to know that something was not functioning properly.  I tried to console her and reassure her that everything was fine, and tell her that things like that happen to everyone…things like that happen all the time.  She looked me in the eyes, with tears streaming down her face, and said to me, “Mommy, its horrible.  You will never know what I have to go through.”  She sliced my heart and soul into a hundred pieces and I lost it.  Tears streamed.  Poured.  It physically hurt me to hear those words.  I will never know what she has been through.  I try not to think of it because it makes me want to climb into a hole and never come out. 

If you took your regular child to the doctor’s office, and they told you that your child would need to have his right leg amputated below the knee, you would be devastated.  If they told you, instead, everything will be fine, but we need to implant hearing aids for both of his ears… you would be upset.  If you took your child to get her vision checked and the eye doc reported that her sight in one eye was great… but she’s not going to see out of the other eye, ever… I’m pretty sure the feeling you would be having would be less than thankful.  If you had to know that your child was sterile, and would never have children of her own…sure, you’d live…but certainly you would be bothered.

Cancer parents are faced with these types of permanent issues regularly.  I know children in each of the circumstances above, and they are all 7 years old or younger.  Because we have faced the possibility of our children dying, we are handed the news of these awful side effects with this attitude of winning a consolation prize.  We can get a prosthetic- the hearing aids will be nearly invisible- people operate with one good eye all the time- there are so many children that need adopted. And what everyone is really thinking in their mind is, you should be happy because your child is alive.  Of course I am overjoyed and thankful beyond anything you know, to be blessed with a child survivor.  I am also sad and concerned and bothered by every extra challenge that she is faced with because of this awful disease and its medieval treatment methods.

One of Phoenix’s long-term issues is the condition of her brain (!!!!!!!!!), which is obviously the most important thing inside your body, but also happens to be the most unpredictable-diagnosable- fixable thing.  Her brain has faced hundreds of bleeds, the scarring of those bleeds, a blot clot, direct radiation, and chemotherapy carried to the brain by spinal injection.  Chemotherapy literally causes the brain to shrink, which leads to a condition disgustingly referred to as “chemo brain”.  As a result of all of these assaults, the list of possible challenges she will face is endless.  What we have seen so far, has not been that bad.  Mostly things that would fall into a learning disability-type category…but also expressing/communicating her thoughts, and dealing with the emotional spectrum.

95% of the time I can have (through prayer) the positive outlook that gets us through.  We should be thankful for the storm.  We will all be better people because of this.  We now know what is truly important in life.

The rest of the time I am thinking why would my little child have to be the lesson from which the rest of us learn?  What can she possibly get out of this situation? It is not fair.  She deserves for her challenges to be over. It’s not fair. Why?

I am mad on her behalf that she has physical impairments.  I am mad on her behalf that her vision is not perfect.  I am mad on her behalf that she has short-term memory issues.  I’m freaking mad, and NOT thankful.