Last night, I held our youngest daughter against my chest and placed a flannel blanket that her Grammy made for her against her cheek and rubbed, holding the blanket wrapped around her tiny body. She instantly grabbed it with one arm and snuggled her face against it, against my chest, and promptly fell asleep. I melted into the couch. What a lovey.
I sat there, with my sweet little baby sleeping on me, and gently took her little balled up fist that had been laid against my sternum. Slowly I opened it and looked at her little fingers. Her tiny, one year old chubby little fingers. They are going to be longer than mine. More graceful looking, even at such a tiny age. With tiny little nails. But so delicate and fragile, like the rest of her. They reminded me so much of my oldest daughter’s little fingers at a year old. My son’s fingers are shorter and fuller, with little baby fat and “Hulk Smash” fists half the time. He’s just like my father, but wrapped in Batman clothing and giggles when you tickle wrestle with him. But my girls have their daddy’s long, lean hands.
Sitting there, staring at my youngest daughter’s fingers, I flashed back to sitting in that horrible blue vinyl rocking chair in my oldest daughter’s hospital room when she was a smidge older than our youngest is now. She was born with multisystem Langerhans Cell Histiocytosis, which is a rare cancer. (for more information, go to http://www.histio.org)
I held my sick little girl’s little fingers while she slept on my chest. Tubes and wires and monitors all attached to her as I held a flannel blanket that her Grammy made for her around her little body and rocked, singing and looking at her little fingers. The particular memory I went to, she had blood under one of her nails from when she unhooked her alligator clamp on her port and we had a little incident while I was in the bathroom for a hot second. (I had come out of the bathroom to find her happily painting in blood that was back-flowing out of the port line. I screamed very dramatically (think The Shining type scream), nurses came running, I think they heard me in the next unit. She was fine, nearly no blood was lost, she was only on fluids so nothing bad got on her skin. The nurses ended up laughing about it.) But I remember holding her that evening, praying and thinking I missed some of the blood under her nails… that I needed to get it cleaned up but I didn’t want to wake her.
Sometimes memories are so vivid. I could smell the citrus-smelling antiseptic. I didn’t get upset or anything last night. It just ran through my head, and I was fine. But once I got Vivi down in her bed, I went into my oldest daughter’s room.
I sat on her bed with her while she slept. Her little kid-size 8 body was tucked loosely in size 10 flannel PJs because they are cool and covered in little skulls. Her feet were covered in her fuzzy purple socks she wore two days ago, but won’t put in the laundry cause her feet were cold and “needed” the fuzzy socks. (They hit the laundry this morning… ew). Her still-my-little-girl self, curled around a new red and pink valentine’s day stuffed Tricerotops that she named Hearts. And long, thin fingers, just like her baby sister’s, wrapped around Hearts.
She’s still so small. Even though she seems like such a little adult with her conversations with her Daddy about how everyone needs to have bat-houses in their yards, with her strong opinions about friendships and school and her arguments with me about how Episodes I-III in Star Wars are actually worth watching (they aren’t… sometimes I question whether she’s my child). She’s still so young. And I’m still so scared of losing her.
She will hit 7 years remission on February 24th, this year. SEVEN YEARS!! It’s incredible. But with every year, we inch towards another line in the sand, another defining moment in her prolonged chronic disease battle. The cancer left such horrible liver damage that for the longest time they thought she’d need a liver transplant when she was tiny. Somehow her liver pulled out of the dive and leveled off, and then improved. But the doctors told us something we didn’t want to hear. Whether she’d need a transplant in the future depends on whether the liver damage crossed a bright red line. If it didn’t, and she didn’t get too much damage, then her liver will keep up with her growth through puberty and she’ll be fine without a transplant. If the liver damage was too much, if it crossed that red line, then she will need a new liver in her tween or teen years. It’s anyone’s guess as to whether her liver will be able to keep up with the growth of the rest of her. And there’s no test to find out.
For the last few years, I’ve put this out of my mind. Her liver function tests have been so good, she’s been relatively healthy and trying to live a normal life, that I just couldn’t force myself to face down that possibility. It just doesn’t seem fair that she will have to go through more. But as I sat there, staring at her last night, I realized I was looking at a small woman-child. She’s a pre-tween, and growing so fast and is just so smart. And that time of determining whether her liver can take it is coming…. quickly.
I also realized something else. All this time since her liver relatively recovered, I was able to NOT think about what’s coming down the line, an I have completely enjoyed everything about her. I haven’t thought about the future with regards to her health so much as I’ve fixated on making sure she is and will continue to be happy.
When you’re child is really sick, one of the first things the professionals will tell you is that you have to live for now and not worry about tomorrow. That is nearly impossible to do while you’re in the thick of it, fighting off cancer and severe liver damage and just trying to keep your baby alive. It’s hard to hold your baby while she’s sleeping with all the chemo hooked up to her and not wonder whether you will watch her walk with her daddy down the aisle to some boy that will never be good enough for her, but will hopefully love her enough and treat her well. It’s hard to not think about the future as it seems to crumble in your path.
But I realized last night that we have managed it. At some point we figured out how to live in the now, experience life TODAY. That’s not to say we don’t think about the future… I still want her to be a happy adult, I CAN say that I don’t think anywhere nearly as much as I used to. I don’t think “I want her to have a safe car like XXX when she turns 16, and to marry a man who is like XXXX.” Now I want her to smile. I don’t care what she studies in school, or if she chooses a trade instead of college. I care that she does something that she enjoys and provides enough to be safe and cared for. And those thoughts, while they do occur, are significantly less than the thoughts I have about whether she has fun with her friends at school and whether she likes girl scouts and whether she has fun with her brother and sister.
We are living in the now, and it’s refreshing. I’m experiencing her and her siblings in a way I didn’t before. While it might be because we are out of the most dangerous and scary times in her treatment, or it might be because we are just too busy with three kids and a house and work to really dwell, I hope we can hang onto this while we approach puberty and the increase in testing and heavy monitoring. It’s a good place to be.
I hope that more of you parents out there with kids that fight chronic illnesses can experience this too. This place where my brain says “Yeah, there are issues, but look at her! She’s INCREDIBLE and I am SO IN LOVE!!” I wish I could tell you how to do it. I do believe, though, that you will get there. It will happen, where you see her smile and regardless of what’s going on in an hour, that smile is joyous and you relish it.
I don’t want anything to distract me from these thoughts with all my kids. Every kid has an issues or problems with something. No one is perfect. A kid might have epilepsy or autism or dyslexia or scoliosis or a hard time reading or the inability to keep from interrupting people. (I’m not saying these are equal… just that they could been as issues you have to deal with). So yeah… there are issues. But look at my kids! They are INCREDIBLE and I’M SO IN LOVE!
Tonight I’m going to paint my little Warrior’s fingernails and toenails and hold her small, thin fingers in mine, and relish today. I’m going to tickle wrestle my son and snuggle with my littlest baby and enjoy them right now. Because if I’ve learned nothing from the whole Histiocytosis experience, it’s that life is short. You have to take what you can when you can.