prepare

Last night was long. Teething baby made for little sleep but I woke up to this sight next to me. How could it not be a great day ahead………..

Then getting into the car she fell. I was getting the baby in, I didn’t see it. But the sound of her crying tore into me. It wasn’t the pain in her cry that got to me…it was the shock in it that I could hear that ripped m in half. Her body gave out on her and she tumbled backward onto the curb. Her little 6yr old body is growing too weak already to hold her up getting into our car. I ran over and put the baby on the floor and scooped her into my arms and just held her.

I couldn’t even force myself to say “its ok” because I think she is starting to realize….its not.

New rule. Mommy will help her into the car now. She has waited and reminded me every time since then that we are loading into the car.

I felt so bad that I hadn’t seen it coming, that I wasn’t already standing there to help her get in and out. Last night she made a card for a nurse she has come to care a lot about…we both have actually. That nurse has been gone for a few days but I thought she would be back today. She asked if I brought it with us and I had left it on the coffee table. I was frustrated with myself.

She told me not to be upset…we can tell her all about the card. Its ok mommy. My sweet little girl was comforting me.

Tonight at dinner I noticed she is able to feed herself with her left hand. Its a bit clumsy but she is already getting the hang of it. I love her. During dinner she also gave me a drive bye “I love you”. Those are the best. The random times she looks up and just tells me that. Its so endearing and really re-fuels me.

Walking to the car holding my hand and her pinkie (lovey stuffed animal) she struggled. She used her chin to help her grip onto the bear so it didn’t drop out of her arm.

All this makes me nervous for how we are going to navigate back home. But its also good that we see glimpses into our struggles since it gives Tony and I time to come up with a game plan.

This afternoon I was able to get Charlotte down for a nap on our bed. So I had a fully free body to snuggle up and watch a movie with JLK. It was so much fun. For both of us. She never complains…but seeing how much she liked getting all of me to herself showed me how much she desires the time.

I’ll work on that baby girl.

We are going to get a couch for the play room back home. A big comfy one. So when she is too tired or weak to play with her little brothers she can lay in the same room with them. And its going to be big enough for snuggles. So Tony and I can lay with her and watch movies.

We have realized its time to just start making decisions. No more talking and debating and waiting. When we see/think of something that will make our time better we will proceed with it. Its very much not our normal way of operating as a couple but we are both in agreement….We need to do the best we can with the time we have.

I hate it and love it all in the same breathe.

We had a “play date” with Emily today. We went to a pottery painting place with her and her parents. What a sweet girl and great family. Jennifer was very quiet and shy but said she had a good time and wants to get together again. I am hoping to do the park or something like that so they are away from us adults a bit and can talk and bond. Emily is nearly 2 yrs older and I think Jennifer wants to talk with her but doesn’t quite know how.

Emily’s prognosis is a good one (did I really just say a girl with a brain tumor is anything good?). Their brains are so tiny…its incredible to me that the difference in location of just a few inches makes this dramatic of a difference. She is pretty sick though. I thought it was from chemo, but her mom said its more from radiation. We are so lucky that Jennifer is tolerating it all so well. Back on the steroids she took down 1.5 burgers at dinner tonight!

She also said at dinner that another diner there, a girl a yr or 2 younger was talking about JLKs eye. I didn’t hear it but she was pretty insistent about it. Then we talked about if it bothers her and how she feels about her eye. She is self conscience about it. That is a piece of the reason I don’t want her away from me going back to school. I hate to have her away and not be able to somewhat filter what she is hearing. But she has mentioned wanting to go back. This is one of the few places we haven’t come to a decision quickly as to what we are going to do. We are trying to sort through all options…Its not clear to us whats the right thing to do for her yet.

During our delicious snuggle time on the couch I found her hair loss spot. Its large on the back of her head. She doesn’t realize it, but I think its going to grow and become noticeable soon. When she does I will just leave it up to her what she wants to do about it. Shave it all…cut it really short or just leave it as is…I just wish I had known how bad it can be with radiation. I thought it would be spotty so I have told her she won’t lose her hair like chemo patients…Thats turning out to not be entirely true. It was nice to talk with Emily’s parents today since they could share their experience and that much of Emily’s hair loss was actually radiation not chemo…so I am now more prepared for it.

But I have no idea how to prepare her for it. She loves her hair and doing it fun girly ways. I am so bitter that she might be losing out on that….in the battle I am terrified we are rapidly losing.

Tonight after her tuck in as I settled into my seat out here I heard her call for me. She couldn’t sleep. So I laid with her and held her in my arms. Like I did for so many nights when were lucky enough to have her.  And she tossed pinkie to the side saying she didn’t need pinkie she has mommy. She told me she loves me and that I am the best mommy in the world.

I basked in it…the umpteenth time today she was being so lovingly expressive…for a moment it was bliss…

until my thoughts crept in and grabbed me by the throat…

Is she preparing me already?