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………..

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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. IMG_3008During 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 IMG_2999so 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 IMG_3007and 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 reallyIMG_2997 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?

13 Responses to “prepare”

  1. I think some fun wigs might help if the spot gets bigger. I’m so glad Jennifer now has a friend on this path with her. Not that I am glad either child has a tumor but just glad they have each other. Praying JLK gets a miracle and the radiation is working well for her.

  2. Dear Libby . . . We met briefly in the cafeteria at LPCH last week, though I have been following your blog from the start. I knew that I wanted to be a part of those who are standing with your family through this painful time. I pray for you many times through the day, and I know there are many, many more who are praying for you. As you write with such transparency and aching honesty from your heart, unity grows between you and all of us who read it. Many of us are mothers, most have faced some sort of agonizing time in our life (or will someday), all of us carry around the fear of our children suffering and us not being able to help them. I hope that you can feel the power of our united prayers for you and for Jennifer. You are making all of the right choices, doing all of the best things, because everything you do is from love. Listen to JLK . . . . you are perfect to her, and that is ALL that matters for now. God is with you, Libby, even when you can’t feel Him. He promises that He will never leave you. His grace is sufficient for each day. Thank you so much for allowing me to be a small part of that grace.

    1. “The beloved ( Jennifer) of the LORD shall dwell in safety by Him; Who shelters Jennifer all day long; And she shall dwell between His shoulders”.
      Deuteronomy 33:12
      Jesus carries your sweet Jennifer like a little lamb. Praying for your beloved daughter and all of your family at this heart breaking time,
      Bonnie and Jeff (Firefighters for Christ)’

    2. So well said, Lori. Libby, we are united in love for you and your family. You are a wonderful mother and all your children are so blessed to have you as their mom. Trust yourself and your choices. They are the right ones. Sending love love love and more love.

  3. We love you guys and are here for you for whenever and whatever you need.

    You are so strong Libby. I hear this song, “Titanium” come on the radio and though the real idea of the song doesn’t pertain to you, there is one part that always reminds me of you. It says, “You shoot me down, but I won’t fall, I am Titanium”. You and Tony have been through so much and your strength is amazing and inspiring. You are Titanium. I know it probably doesn’t always feel like it for you…you may feel weak at times but you aren’t. You are the strongest person I know. You are titanium.

    Praying always.

  4. Wow I just found out about your blog from a friend on FB and I am so touched by this story. I was reading that you are looking into getting a big comfortable couch for your little girl and family for the play room I own am upholstery shop, Aby’s Custom Upholstery, and we are based in San Jose so if you find something used we can make it all new for you! Please let me know what we can do to help!! It’s on me!! Please contact me when you are ready 😉 With love from another mommy to you…may The Lord give you strength and patience during this time!! With love, Aby

    1. Thank you so much for the generous offer. We ended up with a new couch being donated to us. We are always so incredibly touched by the willingness people have to help us. And now with this new couch it will be somethig we have for yrs to have her “sitting” with us.

  5. Hi Libby,

    Your words are so real and impactful. Thank you for keeping us posted on this journey. I think about you and your beautiful girl often and my heart aches. So many prayers are coming your way.
    Love,
    Noreen

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