No right to be afraid
Today was Gabbys first day back for treatment since she left the hospital. Tomorrow is her first day at the clinic. Not sure what that means exactly but I’m sure we will find out tomorrow. The last few days back haven’t been easy for Gabby, for some reason we thought she would open back up. Unfortunately that hasn’t happened yet.
This morning at CHOP I told Carolynn all I want to write is, “I’m scared all the time”. Nothing else, no quotes, no humor to keep it light, just those five words. From the moment I wake up to the minute I pass out. I’m scared all the time.
Scared she won’t walk again by herself, scared she won’t run, scared she won’t talk so others can understand her, scared that the pain in her right eye and the redness isn’t some other horrible new symptom of this disease. I keep telling myself she will get better, this will all pass, the hair loss doesn’t matter and in no time I’ll hear her real laugh again. But then I see the three inch scar on the back off her neck and lower head from the biopsy, then I look at the scar where they put the port in. Lets not forget the fact that I can now see the rib cage on what used to be a little girl who didn’t lose her baby fat yet.
I think all this and then I think, I’m ashamed. What right do I have to be afraid. She is the little girl trapped in her own head. Just so you all understand, Gabby is thinking clearly, it’s just her body won’t do what her brain is telling it to do. She sits up and wants to get off the couch, but her legs don’t know how far to move, or which one to put down first. She has always loved to color and do crafts. In the hospital during therapy the therapists had her color and paint. After they were done, they would ask her if she would like to keep the pictures, she always said no, they asked if she wanted to give them to someone, she said no. She said to throw them away. She would never say this before, she and we saved everything. But it comes down to now her signature is a scribble of lines as well as anything she tries to color. She can’t use her fingers to pick things up. The left hand can push things around, the right one she has more control over. To look at her you know she is in pain. She’s frustrated because she knows this isn’t right, she just can’t do anything right now to make it better.
So I’m ashamed, I read the comments on facebook, about how brave, and how strong people think I am. How much heart and courage I have. All I want to do is scream no, that’s not true, I’m scared and afraid 24 hrs a day. I want to yell it’s not courage it’s a lack of choice. My birthday is tomorrow I’ll be 38 Gabby will still be 5. However she is the strong one, she is the brave one, and she is courageous, I’m just the guy pretending till she falls asleep.
Each day has been a struggle to get her to eat something , anything at all. For the last nine years of all my children’s lives we have tried to do the right thing. Television isn’t watched much. Maybe ½ hour to an hour per day. Fast food was always a reward not a daily or weekly occurrence. Now things have changed for the Gabster. A healthy diet isn’t what we need right now. Basically we are trying to do anything and everything to get her to eat. She lost over two pounds since Saturday. Remember this is a 50 lb girl. 2 pounds is a big deal, I’m not sure how much she has lost in total but I would have to say at least 13-15lbs. I’m sure this will be a discussion tomorrow during our clinic visit.
Today during radiation a nurse kept calling her pumpkin pie. Something struck a cord with her. She said that’s what she wanted. So this afternoon I made a mad dash looking for pumpkin pie, not only did I find it, I also got the stuff for Carolynn to make homemade pumpkin pie with extra calories. Gabby ate pie for lunch and dinner. Yesterday I managed to get her to eat three Oreo cookies after they were soaked in milk.
The tumor effects her chewing and swallowing. She pockets the food and most times either Carolynn or I have to use our fingers to scrape most of the food out of her mouth. This is why things that are soft and basically melt work. We aren’t worried about healthy now we are worried about getting her to eat more calories. She doesn’t like Pediasure, won’t eat pudding or applesauce and it seems has now moved away from Frosted Miniwheats. When they are babies you give them formula and they eat it. When they are five, stubborn, and can’t swallow it’s trickier.
I made her a black and white milkshake today, loaded it up with vanilla ice cream and lots of chocolate syrup. She probably drank a ¼ of a cup. We were hoping she would drink it all. But at least it’s something. Tomorrow we will try again, the issue is she can’t really come up with something she likes because I’m not sure she knows what she likes. The smell of food cooking bothers her and she seems to not like most of the things she used to.
Special moments over the last few days
- She fed her sister cheese balls and laughed as she kept stuffing them in her mouth and moved onto stuffing them in her shirt when her mouth was full.
- She told me she wants to get a Disney baby doll, however not for her but for Rebecca our 4 year old neighbor
- She laid on me as just her and I watched TV today.
- She Secretly told Carolynn to buy me Junior Mints for my birthday.
- Told Carolynn and I we both sing the milkshake song incorrectly, then proceeded to try to sing, “My Milkshake brings all the boys to the yard”
- She ate Pumpkin Pie and loved it!
I keep asking Gabs to say I love you daddy. For some reason I recorded her saying it the day before her biopsy June 2nd. And since then she hasn’t said it. I told her I want it for my birthday. She just said she’ll say it when she is better. Just another sign my stubborn little girl is in there. Refusing to do something until it’s on her terms. That’s okay though, I’ll wait and it will make it that much more special. I’ll wait for my little girl while she tries to break out from the jail she is trapped in. Like I said she is strong, she is brave, and she is courageous. Most importantly she Believes.