Sunday, September 13, 2009

Big girls DO cry.

We first found out that Rachael's little mole might be a bigger deal than we were initially told through a phone call from her local doctor, Dr. D.  He called us at home in the evening and asked if Tom could get on the other line.  Dr. D said that the tissue had been sent to Baylor and they were forwarding it to Mayo and that we should start to prepare for further treatment.  We were concerned of course, but he was very reassuring and told us that this was most likely just extra vigilance and not something to actually be worried about.  So, I didn’t worry.

He recommended at that time that we go to Houston because they have the absolute best cancer center in the world but he warned us that it could be very scary to walk into a place like Texas Children’s Hospital or MD Anderson.  Honestly, I remember thinking, “It’s a hospital.  There will be sick people.  I think I would be prepared for that.”  But the reality of walking into MD Anderson for the first time was very different than any other hospital I’d ever been to.  There weren’t just people with hangnails or broken legs.  There were people with no hair and sunken cheekbones and bruises all over their bodies.  There were children who didn’t have the energy or internal body heat to withstand getting out of their layers of blankets to play in the state of the art playroom.  There was a little girl Rachael’s age who was puffy with who knows what medicine and a little bit of fuzz on her head and eyes that couldn’t quite focus.

And then there was my beautiful, healthy looking daughter with a full head of long curly hair who was skipping around with joy at all the wonderful toys and I just thought, “We don’t belong here.”  Not only did I feel like we didn’t belong but I felt incredibly guilty that she was being treated with the same concern and compassion and I was being met with the same absolute love and sympathy as all those other moms who clearly had babies in much more dire situations.

Going to MD Anderson is truly like entering a family who loves you and wants to show their love for you in every way.  I felt embraced.  After her first visit, one of the Child Life Specialists was chatting with Rachael while I was waiting on a piece of paperwork and not knowing who that woman was talking to my daughter I asked the receptionist.  She said, “Oh, she just talks to the kids about their day and what they’ve been through and sees if they need to talk.”  I wanted to run over there and say, “Please!  Go talk to someone who needs you!  We’re okay!  We don’t deserve all this compassion!”

It’s not like Rachael or I don’t deserve compassion.  Everyone does.  But I’d been told that my child’s prognosis was most likely fantastic and after a little surgery we’d probably just need some follow-ups.  It was just a weird feeling.  Like I needed to apologize for taking up their precious time when clearly my daughter wasn’t like those other kids.

And even now that her diagnosis is worse than we thought it would be and her treatment will be longer term we still believe that she will grow old and – though this is a little thing in the grand scheme, for her it is the biggest thing – she will never lose her hair.  So I can still look around at all these other kids and feel like I shouldn’t be anything but grateful.  And I AM grateful.  I am so very grateful that we found it early and that we have amazing treatment options and that my child will likely survive.

But today… just for a little bit… I want to say that this sucks.  This is really hard.  I don’t want her to have more surgery and more scars and tubes and needle sticks and recovery and risk of chronic swelling and pain and medicine that will probably make her sick for a year and the extra expenses and this feeling of having absolutely ZERO patience for my son’s lack of compassion and my husband’s normal communication mode of not talking much and not knowing for sure that she won’t end up with tumors in her lungs and bones and brain.

We are so very grateful that it’s not worse and all the things above are things we can live with and so very many people would give their very own lives to only have what we have in front of us but just for today I cried and I cried a lot because it just sucks.

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