"She looks good." "She's looking good." "Wow, she looks great!" And she does and I *know*, intellectually, I know, this is meant to be supportive and uplifting. Some days it doesn't, it isn't. It almost is like hearing people say she's better or she's done or it can't be that bad - as if it takes away the reality of the day to day battle she's fighting. Just because she looks good and is feeling good - at this moment -
This doesn't take into account the pain she fights through pretty much every day - the pain to walk, step, climb stairs, even to eat. Her jaw hurts, her chin hurts, it hurts to open and close her mouth. Her head hurts, the muscles in her legs make it painful to even walk much less play but she forges ahead. Her attitude and pure joy in life, and in being able to be involved in her life again take over and make the pain secondary until she's back home. Saying, "She looks great," almost discounts everything else she's going through. The fact that she's up at 12, 1, 2, 3, 4, 5 am - some point during the night throwing up, the insomnia, the throwing up outside the school doors, wiping her mouth off and heading into the classroom with her friends - the daily.hourly,minutebyminute battle she's fighting.
She never ever dwells and never even really complains but some days we send her to school on narcotic pain meds with tiny pupils so she can get through the day. Again, this morning she was washing her hands and reciting the alphabet to make sure she washed long enough and she can no longer recite the full alphabet - every time there are pieces missing - chunks of the alphabet gone. Not because she didn't know it, but because she no longer knows it. She can't remember it anymore. She soldiers on blissfully unaware that she's just skipped five letters here, three letters there. I know. I know she used to be able to do it. I know she used to be dedicated and motivated to work and to learn to read. Now she has no patience. Zero. She is in tears at the most minute things - she was the one I could count on to calm down, Ella was the one that was the drama queen - they've kind of switched roles. Who would have ever thought that Ella would be the more emotionally stable one? ;) Anna's just extremely volatile and her emotions are always just at the edge of the boiling point. This isn't what people see and it isn't what she lets people see -until she's had enough and can't put up her facade anymore and has a melt-down. Last week she skipped school and I kind of wanted to force her to go but then decided against it. Anna then slept for the two and a half hours she would have been at school. :(
There is no reserve, nothing to call on if she is tired or has had a late night - there's nothing there. Every single day she runs herself down to empty and hopefully has enough to make it through the next day. Makes me think of the spoon analogy - she has her spoons for the day and uses them all up to go to school and be new self. So, while I completely understand that people are offering support when Anna is looking well, sometimes I just can't take it in the spirit it is intended.
I think it is also hard these days because Anna IS, absolutely IS, in a good place with her treatment. The pain and the nausea and the insomnia and the sleepiness are all pretty mild comparatively to what she's had adn to what is to come.
The worst part is yet to come and I can't help but look forward and try to plan and then it makes me feel sad - and this is totally NOT at all about Anna but soley about me as the Mom, that it is hard to plan. Hard to move forward, knowing what is ahead. Then, what makes it even harder is that the people we thought we could count on, that would be supportive aren't so much. Yet, we are so incredibly blessed because there are so many people that are supportive and take our calls any day and time and offer help and support in an instant. The quick texts/emails/calls/drop-bys/grocery runs/ headbands/hats/scarves/notes/cards - it all helps keep you going and to remember that we aren't alone. We don't have to do everything alone. It is kind of a bizzaro cancer world where the former friends and neighbors and acquaintances become the close friends and the helpers and the savers. I think it leaves you (well, at least me) feeling tumbled around even more in the midst of all this because in addition to finding your way through new normal you also have to navigate to new friendships that are supportive and helpful. Even when there isn't time to be a good friend in return and the people you thought would be helpful and supportive just have to be left by the wayside because there is no energy to invest in people that aren't wanting to be there. Good theory for life in general - made abundantly clear through the window of this journey.
So, while we take joy in the every day moments we have with the girls and are hopeful for our future - sometimes it is tainted when one of us is having a blue day. We are still getting used to the living day by day that the leukemia requires of us. There is no tumor to be removed or that radiation can take away - there is just this disease, in her blood, throughout her entire body. to that end this weekend, while I absolutely am having fits with a messy house and not taking care of my business in the home (I've had a painful tooth, serious pain meds and then a root canal this past week) on Saturday Sam convinced me and I was SO grateful! that he did to take the girls away. We went to Mount St. Helens for the day, took a leisurely drive after soccer. Stopped wherever we wanted, Sam donated blood at a Rally Blood Drive partially sponsored by Friends of Mia in Olympia, Ella took pictures, they loved seeing the volcano, watched the movies at the visitor center, hiked, took in nature, appreciated where we were. It was Amazing! The girls had a great time -neither one complained about the drive - they were happy and cheerful and it was great being more normal. It was a lot like before we had Ella and Anna and would go away for the day or the weekend on the spur of the moment. We had actually had approval to go somewhere this weekend, just make sure we took note of the closest 'good, appropriate' hospitals. We debated Leavenworth but with Anna being so nauseaus and me being nauseas with the pain meds - we both normally are car sick on that drive. It is So Hard to remember we made that drive about once a month last summer and fall - a lifetime ago - and Anna and I would just try to sleep through the really curvy parts and not throw up. So, then we decided we'd go to Vancouver, B.C., unfortunately Ella's passport expired earlier this year and I couldn't quickly put my hands on her birth certificate. that's how we ended up at St. Helens.
Skipped church b/c every one slept in late - feels bad missing it when we are actually able to go. Last weekend we went for the first time since Anna's diagnosis, I think it was the fourth or fifth time total we've even been able to go since January. Anna loved it, we were going to leave before it ended but she really wanted to stay. Sam and I were very scared to have her there during Communion but let it be her choice. Again, so grateful that we let the girls make some of their own decisions. Anna loved it, and Ella especially loved it. I looked over at her as she was getting ready to partake and she gave me the biggest, hugest smile I've seen on her in months. It was absolutely fabulous and just reinforces the point that she needs the normalcy back in her life also.
More to say than I realized today.
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