Thursday, July 9, 2015

A Little Flower for your Face

All three girls get transfused on the same day.  It makes for an utterly insane day, but then it's over and we go back to being just regular for 3 weeks before we do it all over again.

So many IV poles!

Getting a transfusion is sort of like taking any medicine.  The "dose" you get is based on certain criteria.  For packed red cells, the "dose" is based on your weight and current hemoglobin level. As a result, the girls all get different amounts of blood every time we go.  Add to that the fact that Emmie does her transfusion as a "turnaround" (meaning that she has her type/screen done the same day as her transfusion) and the other two girls have their labs drawn a day or two before, it means that everyone starts and finishes at a different time.  Emmie is almost always the longest.

Some arts and crafts in our room to pass the time.

Just hanging out.

Yesterday, Rosie finished her transfusion first.  Her hemoglobin was the highest, she weighs the least, and her line was in first, all resulting in a first place ribbon at the finish line.  At each transfusion, our dear Child Life specialist steps in for a few minutes so I can take a walk to pee and get some coffee, something every hospital mama will tell you is a luxury.  Since Rosie was done with her blood, she asked to come with me.  She wrapped her warm and pinked-up body around mine and we headed for some caffeine.

On the way back from the coffee shop, I remembered that The Hole in the Wall Gang was holding a little in-hospital camp in the entertainment center.  I wasn't sure if it was right or wrong to stop by there.  One kid was done getting her new blood, but the other two were upstairs still tethered to IV poles for at least another hour.  Should I refuse Rosie some light-hearted fun because of the other two, or let her enjoy the fact that she was free from the Infusion Unit?  As Patrick said this weekend, there is no handbook on parenting, and if there was, it would likely suck.  So we stopped in.

It was set up like a real little camp.  Activities and smiles were everywhere, in a place where there are not always so many smiles.  Since we were on borrowed time while the Child Life Specialist sat with Emmie and Frannie upstairs, I steered Rosie to a quick activity--face painting.  The minute I did it, I felt a pit in my stomach, knowing that this was one of Emmie's absolute favorite things to do at fairs and the like.  Rosie beamed from ear to ear as a camp counselor painted a pretty pink butterfly on her little pink cheek.  A happy look in the mirror at the finished product and we were on our way back up to Emmie and Frannie.

The minute we walked into our treatment room, I knew I had made a mistake.  Or did I?  Yes, I did.  I think.  Oh, I didn't know, but I knew for sure that I felt miserable.  "I thought you were just going to get coffee like usual," Emmie said with big, jealous tears in her eyes as she looked at the pink butterfly on Rosie's cheek.  I failed.  Again.  I failed.  It was as if I took a crappy day for Emmie and made it crappier.  But I also took a crappy day for Rosie and made it better, didn't I?  But at what cost?  Sometimes, as mom, you just never feel like you can make a good decision.  At least little Frannie is still too young to care much, so I wasn't ruining her day, too.  I could take some peace in that, right?

Quickly I set down the coffee I wished I had never gone to get, and the Child Life Specialist slipped out of the room.  I got out the nail polish I brought with me and started right in on pedicures for the girls...Emmie first, and she would get a manicure, too, since she did not have a butterfly on her cheek.  Even with the special princess treatment, I could tell how sad she was.  "When is that camp going to end?" she asked.  I watched the blood drip, drip, drip slower than ever and told her that the camp would be over before her new blood was all done.  The tears brimming in her eyes confirmed that I had screwed up again.

Her transfusion seemed to drag on endlessly.  Every time a nurse or clinic assistant came in the room to check on us, Rosie proudly and innocently told them about the camp and to look at her butterfly cheek.  Emmie stared at the bag of blood hanging on her pole.  She never seemed to hate that bag of blood as much as she did right then.

The minute her pump beeped signaling the end of her transfusion, she asked about the face painting and the camp.  It was well past the end time of the camp, but the nurse could see the hurt in both of our eyes so she took out Emmie's IV out as fast as she could and said, "Run, Mama.  You never know.  Hold the gauze on her arm tight and run."

So we did.  Through the after-hours halls of the hospital.  Taking every back way I remembered from my days of working there.  Carrying my big girl, holding that gauze tight over her IV site, and praying that the camp went a little long.  But it didn't.  When we arrived, counselors were packing up the last of the boxes.  The room that was so lively earlier was just a bare space full of folding tables and chairs.  Before I could finish the phrase, "I'm sorry, honey" Emmie started to cry.  How pathetic we were, in the hallway of the hospital, me holding a bloody gauze, and Emmie crying.

And then, a girl in a green camp shirt came over asking what was the matter.  "Did you not have a chance to race your car?" she asked since they had been racing cars earlier.  I quietly explained the situation with the transfusion and the ill-fated face-painting stop I made earlier with Rosie.  "Well, guess what!?  I was one of the face painters today!  Why don't you sit right down and I'll get out all of the face paint and you can have your very own camp!"

So there we sat, in the middle of the empty room surrounded by packed up boxes of camp stuff.  The counselor took out every single paint color and glitter and brush you could imagine and took painstaking care to paint the perfect flower on Emmie's perfect cheek.  When Emmie looked in the mirror at the finished product, her smile made me know that I had made the right decision.  Now, there were tears in my eyes.  Like many of my decisions as a mother, it was clumsy and a little ugly, but in the end it was all OK.  The counselor gave us a handful of glittery stickers for everyone, and Emmie and I skipped hand in hand back to the Infusion Unit.  "Mama, I love that you know all of the back ways here.  When I grow up, I want to be just like you.  But with a superhero cape."

We arrived back just in time for Frannie's transfusion to end.  Frannie cheerfully stuck some glittery stickers all over her body, and she felt just like one of the gang.  We left the hospital feeling good.  Full of blood, and full of smiles.

So, to the young woman from the Hole in the Wall Gang camp who stayed long after the day was over to do a private camp session for Emmie, thank you.  Those flowers may have only lasted until bath time, but the memory you gave us will last much longer than that.

A little flower means a whole lot.


Shecki Grtlyblesd said...

I'm so glad it all worked out in the end.

likeschocolate said...

I think you did ok! Children need to learn that life isn't always going to be fair. Someone is going to get invited to a party and another not. Don't be so hard on yourself.

daniellem02 said...

And.....I cried. Beautiful story!

shay68 said...

The world needs more folks like the wonderful counselor. I've had a couple of epic failures in the last two weeks and cried like a baby about them.........every day is a lesson in parenting for me. Some how Teagan seems to forgive me every time. So glad all worked out as it should have.