Cheater!

I am a cheater!

I pre-planned my deception, I made my lame excuses and scurried out of the house full of guilt. All the way to my destination I convinced myself I could hide it, there would be no evidence and no one would ever tell on me. I could get away with this!

All for a bagel and coffee at Little Tales. Yes, I left my house-bound, poop-filled, neutropenic child at home with her Grandma so that I could get away for a few hours. It was so needed though, I have spent every waking and sleeping moment for the past 9 days at her side and I needed this time! But the whole time I was there I was thinking of how royally ticked off Peyton would be to know I went to Little Tales without her, I can only imagine the holy rage she would throw.

But so far I’ve gotten away with it.

“Where have you been?”

“I had to run an errand.” LIAR! Your mother is a liar!

“What day is it?”

“Ummm, it’s Tuesday.” It was as if she could smell the Center on my skin and was just trying to put the pieces together.

“Where am I going today?”

“Nowhere, you still haven’t pooed yet, so you can’t go anywhere.”

“Oh, I thought today was Little Tales.”

“It’s over, baby.” <—Not a lie!

“Maybe next time?”

Ok, I am just drowning in my guilt at this point. She can’t go, she’s not safe against anything and she’s not safe for the other kids while she still has sores in her mouth. I totally went to my kid’s playgroup without my kid! I am a bad mommy.

In the hospital we have a twin bed that has some funky electronic thing that adjusts for movement. That means, every time you move, the bed shifts…it’s just weird. At night, we both sleep in the twin bed, she won’t let me sleep in the chair and I’m fine with that because as uncomfortable as a shared twin bed is, it’s nothing compared to the chair-bed. We’ve been glued to each other for 7 days! I get home and am looking forward to sleeping in my comfy, pillow top, king size bed…getting all sprawled out, no beeping machines, no hourly vitals, no one coming in to ask “Do you need anything?” at 4 AM….SERIOUSLY! All I need is for you to stop coming in and waking me up. Anticipating that sweet night’s sleep. I wake up all night long with Peyton rolled over and pressed up against me like we’re Siamese twins or something. I would roll her back ontp Pete’s side of the bed, then an hour later she had inched her way back over. I think tonight I’m going to set up a roadblock of pillows to keep her on one side of the bed.

Peyton slept most of yesterday afternoon, she went to bed right after returning home from school drop off this morning and is still laying here in bed with me as I type this post. She is so tired, but mostly her tummy hurts because we’re waiting on that poop to happen. I can’t believe that it’s been 6 days since she’s had any action. I don’t know what the next step in that department is, but we’re getting nowhere. I’m hoping that now that she’s off the morphine and we’re home we’ll finally get some movement happening. We did large doses of Magnesium Citrate and Miralax and Lactulose in the hospital, and we are still doing double doses of Lactulose at home…she is eventually going to blow like Mt. Vesuvius. Oh, that’s a pretty thought now isn’t it? I really can’t wait, I know she’s suffering and in pain from it.

Her mouth sores continue to heal, still a little red and swollen, but all obvious sores are gone! Her cough is pretty much gone, but she wasn’t coughing all that bad in the hospital when she showed pneumonia on the x-ray. One thing I miss about the hospital is the daily counts, so I have no idea if they’re up or down. Her hemoglobin was 8.4 when we left yesterday and she’s done nothing but sleep and lay around since we got home, so I wouldn’t be shocked at all if she needs some blood when we go back to clinic on Thursday.

I did talk to the kids last night about Sierra passing. It was hard, but after having been through this several times now, they asked the questions about her family, we talked about why she was so sick and what happened to her body and that she is in Heaven now. I told them that we have to be thankful for our friends who go to Heaven before us, even though we’re sad they’re not here and we miss them, they are the lucky ones who get to be with Jesus and get to be healthy and perfect. Nathaniel asked if Sierra would still have Down’s Syndrome in Heaven, if that would change if she was “perfect”. WOW, I so did not know how to answer that. But Rachael, in her infinite wisdom, said, “Just because she had Down’s Syndrome doesn’t mean she isn’t perfect, Nathaniel! How else would Miss Mary Lynn recognize her?” Ok, I like her answer, she is so much smarter than I am.

Another sweet child passed over the weekend. Not one I was close with, I only knew his mother. Katherine shared so much of her son Steven’s journey with me and we talked often. I never got the chance to meet Steven before his relapse a few weeks ago. After the relapse Moffitt sent them home to the east coast because there was nothing more they could do for his testicular cancer. He passed on Sunday, and Katherine told me that she was so happy for her son, that he was gone from his world of pain and cancer he’d been living in for so long.

I pray for all these families who are trying to find that balance, to figure out how to make this life work with such an empty spot in it. I know God provides the peace and strength they need to get through each day. I pray for those of us who see and feel the loss and that we don’t let it steal the joy of now with the uncertainty of the future.

Please keep prayers for those sweet children who are hospital bound and fighting this battle with remarkable strength – Kaylie, Jimmy, Connor, Presley, Brooke, Matt, Justin, and too many more to list by name.

f.r.o.G
–Anissa

***UPDATE

We had a “CODE BROWN”! It was awful and painful and lots of crying was involved, but she finally had that massive BM we’ve been awaiting. I swear never has a poop been so highly anticipated before. I know that some day, when Peyton is old enough to read this story of her life she will be thoroughly horrified to know that I shared her bowel activities with the world. But I am seriously rejoicing that her tummy is finally going to feel better!