so much

I came home yesterday to a clean house.. boys happily playing at their coco and papas and a meal on the table.

Oh how I love this man.

But the thing I noticed first was baby Charlotte in her frozen sisters dress turned shirt. I had them made.. one for each of my daughters.

As I walked back to my room after putting baby Charlotte to bed I noticed a gift in Jennifers room. A gift bag full of things with tissue paper at the top. I asked Tony about it and he told me Jonathan has decided on the way home from the vacation that he wanted to give sissy and daddy gifts.. so he did..

oh how I love this boy. so much like his daddy.DSC_0419

I often wonder about his little mind.. what is going on inside of it. My final day of the Tahoe trip I told him about the nano course I was going to .. about how I was trying to learn more so I can find ways to help these drs and scientists find cures. He looked up at me through his lashes … another remarkable trait he got from his Daddy. .. and asked how do they know the cure and why didn’t we take Jennifer to them?

oh buddy…

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I was stunned. I was thankfully already on my haunches .. because I literally fell over with the gravity of his question. I explained no child has ever survived with her kind of cancer. Thats what these drs are working towards.. being able to save all the kids. And that we.. mommy daddy and her doctors did the very best we could for Jennifer…I hope he believes me.

I put my hands on his knees and said that its ok to be sad and mad. .. but he was already over the whole conversation. ..

Today we were all playing outside together. I love being in our backyard. A place she loved that holds so many memories .. and other than her bedroom its the place I feel closest to her. Actually in a lot of ways its better than her bedroom.. because being in there brings up a different level and rawness of emotion. Its like my ache for her rips open.

DSC_0417In the backyard we had lots of laughter today, playing football.. me and Nicholas versus daddy and Jonathan.. and baby Charlotte was a floater! I could look over.. see her area in our yard. A giant butterfly, her stone, a light up dragonfly and 2 just planted rose bushes. Each one has had a perfect pink bloom. I can look over to that place and give her a wink.. remember her..the new her. The dead her. The one I am fighting to try to accept is our new truth. In her room I just feel like all I can see is the old her.. the living her. All I hear is the absence of her laughter.. of her calling me mama.

mama..

one of her first words.. but not her last.

I shouldn’t know that. We aren’t meant to know our child’s last words.. They are supposed to know ours.

..and I still hate the lasts.. remember with me.. So many I didn’t see coming. So many I didn’t cherish even as hard as I was trying to.

I feel another 12th breathing down my neck… We have so much set for this week. Packaging the fluttering kits.. then the 12th and starting a new support group. . Then a private Sara Bareilles concert where I will hopefully get a chance to share what her music has meant and continues to mean to our family. Then a big concert with her again with a sister in law. .. Something every night next week.

That’s a good example of how so much has been indirectly changed. Not since we had Jennifer have I gone out more than once in a week. .. If I am being really honest it was rare I went out twice in a month. Now I have spent whole days apart from my family. I believe in what we are doing. But sometimes I hate this new life I am living. Where I just don’t feel like me.

Jonathan senses it too I think. He wanted to make a gift for me today. He had Daddy help write a note for me..

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His heart is so broken. His innocence stripped away. I used to be able to kiss their boo boos away… but I am just as powerless now as I was for Jennifer. The feeling is so very similar.. because I wonder if I am saying the right thing.. I worry about what he is feeling but not telling me. I don’t want to lie to him.. but I don’t want to scare him either.

I went through every one of those emotions with her those 3.5 months she had cancer..

or was it the cancer having her?

Looking back I know she fought every step of the way.. I know she struggled against this beast that was thriving underneath her long dirty blonde hair. .. But once it started it never relented.. never gave her a moments peace from it.

You never would have known. She never stopped being a loving daughter or protective big sister.

I wish I could return our family back to that… to the time that we felt safe in her arms.. That we believed we could beat anything together..IMG_1187

 

I miss that so much. I miss us so much. I miss her so much ..

I miss her so much

I miss her so much. 

..i miss you…

so much..

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…Until there is a cure.. .

 

 

 

 

 

 

 

16 Responses to “so much”

  1. Oh Libby my heart hurts for all of you but when I read about Johnathan and that note I could not help but cry. That poor baby so sad he has had to go through this. They sure did have a love for each other all of them. I pray that God will comfort this little guy. Its so so hard I am sure for you and Tony to watch your kids missing their Sissy. You are both doing a great job answering questions and explaining things. I know they are so young and are confused but as they get older they will start to understand more. Your family is always in my prayers for comfort and strength and I so wish I could take some of the pain away. But that is something only God can do . Sending everyone hugs. Keep strong and dont loose hope for anything your are doing. One day Jennifer will be remembered by so many more people and you will too for all that you are doing and continue to do for this terrible monster that takes innocent children’s lives without mercy.

  2. Your thoughts are so moving in so many ways. Other than all the feelings you evoke in me about Jennifer, I have the strongest reaction when you write about Tony. Your love for each other will be the antidote to your family’s pain. What a gift that is for all your children.

  3. God bless your family of six. Jennifer is always with us. Just yesterday, my granddaughter had a friend over for a play date. As things flow with kids, from one game to another, they decided they wanted to do crafts; with GLITTER! My initial thought was to say no. But I thought of your sweet Jennifer, with glitter in her veins, and I said YES. Their squeals of joy, as they made patterns with glue, and covered with glitter was wonderful. They started mixing the colors in small plates, and their discussion led them to ask “is this too glitter?”. They both said in happy voices, “there’s no such thing as too much glitter”. I left the room, feeling good that I had let them play with glitter, but tears fell as I thought of Jennifer, and silently said a prayer for your whole family. Jennifer’s reach is wide.

  4. As always, my heart aches for you. I wish these was a beast that never was. How I hate cancer. It took my step dad 9 (wow…I can’t believe it’s been that long) yrs ago. It took a classmates mom last Tues. These were adults though. I find it especially ugly when it’s a lil one we are talking about.
    i want to tell you that you ARE doing it right. The very fact that you worry about what you say/how you act shows that. If you didn’t care, then it’d be a concern. Or the very fact that you not only show them real emotions but how to deal with them and that you still live & go on shows what a fabulous parent you both are.
    You are making changes..I can feel it.
    love & prayers for you all.

  5. Your family is always on my mind. Always thankful that you share Jennifer with us. You both are helping so many people. Big hugs!
    XO

  6. I have been following your family since Day 1. I am a close friend of your sister and sister in laws. And this time I felt compelled to write. Actually, I always have wanted to, but never could draw the right words. But, I just have to say this. What your living children are witnessing, through their heartache, is a mother and father who are selfless. What you and Tony are doing to help other children who get this hideous cancer, have a fighting chance, is amazing. They will grow up to be, not resentful children who always have a chip that life was unfair to their family….Rather, children who feel like, “what can we do?” “How can we help?” We have experienced, and rather than wallow in our sorrow, we are going out and making a difference. Just as you and Tony are. Children learn through example, and you both have done a stellar job of showing this by doing this! It’s sh**ty, shi**y, hideous thing…But, the way you have handled this all so selflessly, will only help your children grow to me amazing adults who will make a difference in this world. And, don’t ever question your actions, or beat yourself up in how you think you are handling them. Because it’s nothing short of heroic.

  7. Libby, sending extra love and support for tomorrow and every day. So proud of you, your flight, your strength, your love. Stay strong, believe and sing your heart out at the concert! xoxoxooxoxoxoxooxooxox

  8. No words for this one. Just tears and and prayers. You are an amazing family. All 6 of you. Jennifer lived a wonderful life and is still doing amazing things at Stanford and you are all doing yourselves incredibly proud.

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