Over the past two weeks Mary has been struggle with two things. Sleep and tummy troubles. Both of which result in a grumpy girl. She is also very picky and can't be reasoned with much when it comes to food. Right now it's chicken, rolls or hot dogs. And the only thing I can really get her to drink is milk. I know the milk isn't helping her tummy troubles but it is the only thing she'll drink so I have just gone with it.
Despite all of this I had hopes that she would enjoy Christmas. I busied myself so much with the treat making, present wrapping and general getting ready that when Christmas morning came, after a few presents she was done with it all, it was just too much for her. Which was overwhelming for me. The reality of her, and our, situation hit me like a wave. We continued to try to get her to be interested in opening presents but she just traded laps between David and I begging for the iPad. Then she finally fell asleep on Granny's lap. And then David opened a gift from my parents which were sketches of each of the children. I started crying as soon as I saw a happy Mary with her pigtails. Again more of the wave hit. The fact that we were celebrating the very One who can take away Mary's pain was not lost on me. As I have walked by the stack of unopened presents (still haven't been able to convince her to open them) each day since Christmas I'm reminded of that One who takes away this heartache. And while it's emotional for me it's through Him I know that this will not last forever. There will come a day when the pigtails come back and that she will excitedly rip open her presents again.
I feel like both the lack of sleep and the tummy issues are a result of the steroid that she has been on and off this month. Fortunately she has one more dose (tonight) and then we get a break from it for a while. And even with the grumpiness she isn't without a smile now and then, and she still says, "ok!" and "sure!" when I ask questions. So it's definitely not as bad as that first month.
I had another realization hit me the other day as well as she's been spending so much time with the iPad, despite our efforts to give her some time off of it. I feel like she asks for it more and more during those times she just doesn't feel well. When she has felt better I can distract her with other things and she is much easier to reason with. Her not being able to tell me exactly what she is feeling has it's challenges. I try to be attentive to her behaviors at different time as it's often those are my clues.
At her appointment this past Monday I talked with the doctor a lot about what's coming in the next few weeks and months. Eventually they will give the go ahead to go back to school and I had some questions about that. We've been wondering if she would have another bone marrow biopsy. Dr. T. has been so pleased with her progress that she doesn't necessarily think she needs one but would do one if we asked her to, for our peace of mind. I also talked to her about side affects. There are many that Mary hasn't had to deal with and while I've been grateful I've also had this little thought in the back of my mind that wonders if that means all of this isn't working. Dr T. put me at ease and told me that kids usually don't get as sick, also kids with Down syndrome are also more resilient to the medication and then she said, "and also it's because she's Mary."
This next week she doesn't have a chemotherapy appointment, just a blood draw at the end of the week. And then the following week starts two weeks of crazy.
In the meantime we hope that you've enjoyed this wonderful season and wish you a happy New Year!
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