When we were in the hospital all Carolynn and I kept convincing ourselves was that when we got home everything would get better. All three of us were in a hospital room 24 hours a day. At times we laughed, most of the time we cried. But the one thing that remained constant was the thought of home. The thought that Gabby would improve once we got home and she was no longer being poked and prodded on an hourly basis by doctors and nurses.
Well we got home and it hasn’t worked out the way we thought. The first month home we drove every morning to CHOP for Gabby to get treatments. After that was finished Gabby’s days consist of medications three times a day with Speech, Physical and Occupational therapy pretty much every day. She is still exhausted, she is still terrified most times. When we see family members and friends they comment how great she looks and how good she seems to be doing. I want to scream “Are you crazy”? I know they mean well and Gabby has improved, her balance is getting better and at times her energy level is up. But she still isn’t our Gabby. The last few days her speech seems to have gotten worse. Carolynn and I can make out most of it, much like a new parent can interpret their toddler’s speech.
For the last 9 years our yard has at times been the center point of kids playing. There weren’t many days when I came home from work and didn’t see at least 6 to 7 kids playing in our yard. This summer I can count on one hand how many times we have played in the yard. We don’t have a big yard but we make the best of what we have. We have a swingset, an outdoor table, and a pink plastic kiddie pool, what more do you need. We would play ball, run around and play tag, water gun fights you name it there was always a child laughing in the yard. Now it’s quiet, overgrown with weeds and basically just a sad area of land.
The Pool and DorneyPark.
Gabby’s blood counts have been good so we took her to the pool at the YMCA. She wanted to go. However when we got there she barely lasted 5 minutes in the pool before she wanted to get out. Carolynn and I think it’s because Gabby realizes it’s not how it used to be. She can’t chase the other kids around, can crawl under water, can’t laugh and giggle. So not only did we have expectations but she did as well. When she realizes she’s not able she seems depressed and gives up.
There was a commercial on TV forDorneyPark. Gabby wanted to go. We were excited at this spark of interest so we didn’t hesitate. When we got there we triedWildWaterKingdom, Gabby didn’t want to go on the splash pad and spent three hours on a lounge chair as I took the other two kids on the slides. When we went over to Planet Snoopy in Dorney Gabby rode on 5 rides and then told me she was done. She stayed in her stroller the rest of the time. Again we expected something else. A smile, a laugh, some sort of Joy. But it wasn’t there. Just another reminder of how sick our little girl still is.
I remember the first radiation treatment Gabby had. A little girl ran by her room getting ready for treatment, Gabby laid in her bed not moving. Carolynn asked me if I thought Gabby would be doing that at the end of her treatments. I said I hoped so. Unfortunately that didn’t happen. When we go to clinic we see way to many kids with this horrible disease. And for some reason we focus on the ones that appear healthier, fuller of life and basically ask ourselves, why can’t Gabby be like that. I realize some people will say be happy with what you have. She’s alive; she can sit and eat with us at the table, stop complaining and deal with it. However we are only human we will always want more, we will always want our baby back the way she was. The way we believe she will have to be soon. We are new at this, we don’t know timelines, for healing and no doctor will tell us. I would assume that’s because they don’t know or are tired of giving us bad news. DIPG is a nasty thing, and it keeps growing. In a few weeks Gabby will get her MRI and we will see what’s happening. The word STABLE sounds beautiful at this point. I mean seriously how much more bad news can we get.
We are heading out for a few days next week and the beach the week after. Running away. Leaving technology behind, disappearing. We have all these expectations as to what is going to happen. We want to make it the best vacation of our lives for fear that according to the doctors there may not be another one next year. Again I stress we don’t believe that. Our Daughter will somehow, some way beat this. But we will make sure we have fun whether it’s sitting on the beach everyday or sitting in the room playing board games and coloring. Either way we will be away from the dark living room and the quiet yard.
When I first started writing I believe one of my first posts was about smiles and not taking them or your kids for granted. When I would come home from work I would be tired, basically we would eat then get the kids ready for bed so we could relax! I think about those times now and I am ashamed, there were some days I wanted to put the girls to bed early just so it would be quiet and I could wind down. I basically took Gabby and them for granted. I always new if I didn’t play with them tonight I would always have tomorrow. Fast forward to now. I can’t say that anymore, all I can do is relive all those times I didn’t play with Gabby when she asked me to, because I was tired from work.
I took her beautiful smile and laugh for granted as well. I was reminded of that tonight. After we had given Gabby a bath she told Carolynn and me she only smiles in her dreams while sleeping, she also said she doesn’t talk in her dreams. It was a horrible thing to hear. I sat there looking at a truly innocent five year old girl while she admitted she doesn’t smile while awake. Even today as this is going on there have been days I didn’t want to play, days I didn’t pay attention, days I just wanted to lay in bed and get lost in nothingness but sleep. Even today I’m not always doing what I have said I would do. And why? Because I’m tired? I’m ashamed again because I have no right to be tired, I have no right to pity my life. Gabby is the one going through this hell, we are here to help her, and at times it is so hard to help. However we do, we get up, we do whatever we can to try to get her to smile, get her to enjoy life once again and not settle on the believe that her life is now filled with pain, medicine and speechless dreams.
A few more weeks
I can write a whole update on school, that’s the next big hurdle; I’ll save that for another time. For the next few weeks we will try to forget what’s happening, try to act our new normal. Because after we get Gabby’s next MRI we will have to revaluate all our expectations again. I bounce from acceptance to denial faster than a superball. The summer has been a haze. But Gabby is still here. Tomorrow she will wake up and eat two bowls of rice crispies and a whole lot of ice cream. We are hoping by the end of September we will see her walk, see her smile, hear her laugh, more importantly we Believe she will see and hear those same things. Because when it comes down to it that’s all that matters.