Our Warrior Fatigues and Christmas Wish

Bai’s new bed arrives tomorrow and we have to clear out the “institution” bed this evening to make room for it. It will be picked up Tuesday. Bob is in the garage making new runner boards for her beautiful white bead-board bed and touching it up with a fresh coat of paint. I am so excited to get the new bed tomorrow and now for a completely new reason.

When I say the bed in her room is bad, I mean not only it, but the mattress too. She has slept on fluff and comfort for years and this thing is a rock, even with her special memory foam topper on it.

I will also admit that we have been out and about a lot over the last week. Bai has spent more time in her wheelchair and in the Rocket then she typically does. Her back is paying for this toxic combination of events.

Today as we loaded her into Rocket to head to my, nephew, Oliver’s 3rd birthday, Isobel noticed Bai’s back first. Isobel! She caught a glimpse as I slid Bai into her seat. Can I just say that I really didn’t want to look. I held my breath. I fought back a choke of horror. Well, it is swollen again. A bubble, much like a blister, sits atop Bai’s protruding rods at the top of her spine AGAIN! What on earth!? Why does it keep doing this!? What is going on!? My heart is already in pieces over a multitude of other things going on with her, and life, why!????!?!?! We headed over and stayed at my sweet little nephew’s party for only a few moments, as Bob stayed in Rocket with Bai. We got to drop off and watch him open his gifts. We got to snag some yummy Piece of Cake Cupcakes and wearily returned to Rocket to get Bai home. I’m so upset. My brain goes to worse case. It always has. This can’t keep happening! She can’t be stuck in her bed! She can’t be trapped! For now, she is! We now watch and hover over her back. I tried to call her pediatrician’s office, but the doctor on call doesn’t know Bailynn. The nurse I spoke to was completely un-helpful! Bai has been back on Sirolimus now for a little over 2 weeks. We did labs and took urine in to culture and test Thursday, along with a CT of her lungs and other appointments. Still awaiting those results. The med will go….the tumors will grow….at least she won’t be trapped in MONSTER bed! At least she will get her Princess bed back and a new special foam/gel mattress to rest upon. At least.

I keep wondering why I can’t catch the Christmas cheer, the holiday feeling…I just can’t. It seems so empty. For me, pray for her. Pray my beautiful little girl doesn’t have to have surgery on her back. Pray my beautiful little girl doesn’t have to lay in her bed for weeks on end again, like this past summer. I want it to all go away. I want to steal her misery from her and endure it for her. I want to fix it. I’m helpless in this physically. My Christmas may find some joy, if Bai can. The tension in our house grows like a fungus when Bailynn is struggling. We put on our smiles and wear our warrior fatigues, but we crumble a little. Our hearts shed pieces. The exhaustion starts to show. It drains us like a dementor. It sucks the life and joy straight out of us. Our family has a fight like no other, but even we could use a little respite.

The word chisel rings in my head. Her orthopedic surgeon’s proclamation of what would have to be done if this goes south. The chisel on her spine to remove this rods. Chisel! It is a horrid word a horrid idea. Deal Lord, May no CHISEL touch my baby!

Our Christmas list has fallen to one request, Bai’s back to mend and heal swiftly – World Peace would be great too, but really, just Bai!

BEWARE!! ONLY CLICK IF YOU WANT TO SEE BAI’S BACK!!
–Bai’s Back 12:21:15 – GRAPHIC IMAGES!!!!!!

For Her.
Bobbi