Mar 7, 2016 (Sara)
Maya’s Day 29 is a week from tomorrow. I feel so conflicted with the way I look at this entire fight. I am a person that believes life is about the journey and not the result. This is hard for me these days because I find myself longing for these days to be over.
But…”when these days are over” Maya will be almost 6. Lincoln will be 4. Time goes fast enough without me trying to “will” it to go faster. I’m having a hard time finding a balance in my attitude and outlook. I know we are in week three of this so I should slow my roll but…its so hard for me to not want to fast forward just to next week when she no longer has to be on this intense of a steroid regimen.
At the end of this phase there is another. And another. And another….another, another and another. Then I think we are in “maintenance”. Hopefully. Since they don’t really know which path Maya will follow (day 29 results will tell us), I truly have no idea what our future looks like. What I do know…there will be chemo and steroids.
There will be higher ANC’s and possibly lower ones (well…we may have bottomed out, I mean she really can’t get much lower than 12). There will be hair loss. There will be trips to the ER and to Oakland. There will probably be struggles with wanting to travel or go see friends. There will be isolation days. There will be times when I feel like I can’t keep my child from going hungry. There will be other times when I will beg her to eat. There will be more pokey butterflies. There will be more days of drooping eyes, tingly fingers, atrophy from walking and moving very little. Her belly will expand even more. Her cheeks will continue to grow into a full moon. She will need an abundance of medications just to manage the side effect of her treatment. There will be more tears.
All these things – and more- are what make me want to close my eyes and fast forward 2.5 years. But again…if I (if we) don’t embrace these days that we have. We lose a very special time in our kids’ lives. In our lives.
Lincoln just started to walk. He is a super champ and gets SO excited to throw his arms up and toddle over to me. My heart melts. There are so many more milestones for both Maya and Lincoln. I remind myself of this every day. Every change I see in either of them. A new word. A new laugh or giggle. The amazement of the falling snow. The rare but wonderful times Maya wants to go to the play room, even if it is to lay on a pillow and watch.
Sometimes…often actually, Maya has a very strong “mommy aversion”. I know deep down that it’s mostly the decadron having influence but the “sting” I once mentioned has become a burn. There are times I want to scoop her up in a blanket and cuddle in bed like we used to. All day. There have been other times that my mommy instinct is so strong that I want to put my baby to the breast and comfort her like I did less than a year and a half ago. Because the boob fixed everything back then. I fear I might have lost some of her trust because I was the one who took her into her procedures. If this is the case, we will both heal. I have faith we will.
For now though…I barely get hugs. I know I have said it before but, I am truly grateful she has a daddy that loves her as much as he does. And is as available for her as he is. And for me. Because we both need him. We all need him.
I DO get “I love you mommy” many times during the day and I hold on to her for as long as she lets me. I think it might be getting a little better since she actually took my suggestion of popcorn and strawberries rather than cheesy eggs for her 1am night feed last night. And today…she let me braid her hair.
My heart sang with each and every piece I collected and added to the braid. With every section I had to wriggle a solo strand out from between my fingers and into the trash can. I tried to do it as discreet as possible but Maya is too observant. There were no words exchanged about it today but we both knew what was happening. She picked the more gentle hair tie (rather than the rubber band style) because the other ones “really hurt when you pull em out”. Right as I finished her French braid, she stopped my hand before I put the hair tie in and said “mommy does it look like Elsa’s?”. I almost lost it but instead I focused on finishing the hair tie without pulling too many thinning hairs out. Then she looked up at me…I placed her round face in between my palms and I realized I was holding a Goddess. She looked as beautiful as the waxing moon just before she’s full. I said “yes little love, just like Elsa’s”. The dragon is fighting. She is in an epic battle and each day she grows more fierce rather than weary. She makes me want to be more present than ever. Even if the days are hard and painful – I want to feel them next to her. Love is Life.
Motherly assessment: tomorrow is clinic day. Hopefully her platelet held and we won’t need to kick it at the hospital all day. Her belly is growing but I think we are on the road to controlling her poop situation. Vincristine (the chemo) effects the nerves in the body. Her feet seem to be okay but she complains about her hands and fingers “bleeding”. They aren’t bleeding but we’ve talked about the tingling sensation. She is still walking though the doctor said she might not soon. Her eyes are droopy. Her belly is covered with petechia – she noticed it yesterday and we had a long conversation about it. All of these things are “normal”.