As we start another new year, I am longing for years gone by. The years when the kids were younger and life seemed much more simple. The years when Aly was a healthy little girl running and biking around the neighborhood with her friends. The years when Tom was still at home all the time.
Today, Tom headed back to school. He's been home for almost a month. It is hard to let him go, again. Tom and I have always been on the same wave length. There have been, probably close to a million times, that we've said the same thing at the same time, or I'll say something and he'll say, "I was just going to say that!" At other times, we can just sit with each other and say nothing. It is hard watching your kids grow up and leave, or not want to spend as much time with you. It is nice when they come home, seemingly more mature and realizing that they've missed being around home and realizing what they are leaving each time the go. I have cherished the hours we have spent together this holiday season.
It is hard to watch Aly continue to struggle with the aftermath of cancer. There are some, actually many, days when I wish she could just somehow take a break from the pills, from the daily hormone shot, from the constant worry that she seems to have. I would give anything for her to have her freedom back. I long for the days where she would go outside, for hours, to play with friends. She continues to struggle to find kids to play with. Somehow, I pray that the kids will figure out how much Aly is hurting. I can't imagine what goes on in her head. Last year, she was like a rock star, with constant attention. Constant companions helping her get through the most difficult time in her life. Now, play dates are like a precious commodity. I don't know what to do for her. I can't help that she's been through a life changer and has become more mature than her peers. I can't change the fact that she is the ultimate caregiver and typically cares more about everyone else than herself. She loves to hang out with adults. Maybe because they understand. Maybe because most adults have been through life changing events. They can relate. When she is around younger kids she doesn't understand why they are so loud and excitable. It's not in her, anymore, to act her age and be a kid. She told me a story, not too long ago, about a kid that was throwing popcorn and she just didn't get it. I said, "well, you should be doing stuff like that too! That's what kids your age do!"
She did have a friend, from the girl's group at school, come over for a few hours today. She worked most of the day, yesterday, and this morning getting things ready for her and this friend to do. She said the friend liked doing crafts, so she took time to organize her craft items. It was so nice to see her excited about something, yet at the same time it made me heavy hearted to know that these visits should not be so few and far between or cause this much excitement. She goes days and sometimes weeks without anyone calling or asking her to play. It breaks my heart. I can't imagine what it is doing to hers.
Aly is going to start counseling this week. I'm not quite sure what that will do for her, other than to have someone to talk to. She doesn't like to talk to Kevin and me about certain things. I don't think it is going to change anything. I'm guessing it is just going to add to the maturity issue as she will be talking , sharing and discussing her thoughts with yet another adult. I still am so surprised that I am struggling to find a cancer group for kids. To me, it seems like it would be so much more helpful to Aly to meet other survivors, her age, that can relate to what she is dealing with. I, personally, feel that she would feel better talking with kids her age. I think it would help her feel more normal, more of a kid again. I've found a few websites for teens, but most of them are for 13 and up. Aly doesn't quite fit there, age wise, anyways. That also isn't face to face. We are still waiting for the yoga classes to start. I'm hoping those will start soon. She is also starting physical therapy this week, to help with the dexterity issues.
We received the bill for her MRI this past week. I seriously don't know what people, without health insurance, do. As I said, we have a large out of pocket deductible to meet, every year. This is the only bill we will see, now, until December comes again. The MRI, which includes the brain and spine, was $13,000. We will only have to pay a portion of that, but we get to see the whole bill as it was the first of the new insurance year and our deductible was not yet met. Well, in one swoop, as I said in the last blog, it is now met. Merry Christmas to us!
I'm sorry I'm not super excited about this new year. I've learned to keep expectations low, so that maybe I will be pleasantly surprised here and there.
I took some of Aly's hair extensions out. The ones on the sides were hanging low, which is a good thing because that means her hair is growing some. But, they just wanted to stick out funny and no amount of styling would calm them. So, we decided they should come out. She's still got some in towards the top of her head where the hair is not growing quickly. Her hair has been another point of contention, but here, again, she doesn't want to spend time fussing with her hair.
The botox treatment is set for Jan. 24th. She has an endocrine appointment in February, physical therapy appointments once a week for the next 6 weeks, counseling will begin if we like the counselor she has a consultation with this week. She also wants to start guitar lessons again and is still swimming with the Sea Devils and yoga is supposed to start this month as well...maybe I shouldn't worry about any free time!
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