Sitting here I know I want to write…but there is so much…I almost feel like I have writers block. My sister and I talked yesterday about how fast things move…How if we don’t talk about something immediately time marches on and we miss our time to talk window since there is always something new to talk about.

This blog is my outlet…my safe place…At yesterdays appointment my sister took JLK out of the room and her dr “scolded” me. Asking if I got out and did things for me? I laughed. Not just because there is nothing I want to do other than be with my kids and husband…but because its kinda how I have always been. And some things about ourselves we cannot change. The whole trip was covered by MAW even money for souvenirs, but I still was me and totaled receipts every night and paid attention to price tags. In some ways its comforting to not be losing all of me in this…

Tony goes out with some of his friends or with my brother in law and gets what he needs…I do this. So please know, so much of what I write is negative and sad, but thats not our life and certainly wasn’t the trip. But its what is bubbling in me…this is my glass of wine talking with a friend..its a place to dump and run.

Please let me once more say how magical the trip was…how we will look back on the trip with only happy tears. And mostly how very grateful we are to Make a Wish and Disney.

Actually let me say it for everything. We are so lucky. We are not the first family to be dealt such a shitty card. But the support we have received…emotionally, financially and everything in between….I don’t know how we would do it without our village. You chose to be with us…I cannot ever express our gratitude properly. But its ever present…

Part of the Make A wish deal is this button JLK wore. It let cast members know we were with MAW (make a wish). We called it her special magic MAW button. It let us cut to the front of lines, even character ones. And it gave our kids just a little extra attention. I felt like it was important to try and help the kids understand what a gift we were being given as a family…and for the boys (well really Jonathan) to start to grasp that what is happening with his sister is a big deal. I tried to remind them about her button and how kind she was to share it and how lucky we were to have it.

One night Tony and I were sneaking in a talk.. he said he agreed with it…what I was saying/doing…but that it was hard for him every time to hear me say “we were lucky to have it”. He was right after all…Although it was the trip of a lifetime I will forever wish we never had a need to take it. I am seeing the best in people…I am meeting wonderful people…But there is always a jagged piece that resents it all…because I don’t want it to be me…to be her.

I want to scrimp and save for it…I want to be jealous of people going on vacations and want to just really sink in and enjoy our moments.

So many times…highlight times in the trip something would happen to grip me and pull me down out of the clouds back to cold reality. Tony and I goofed with her about going on the big coasters…It was a source of teasing giggles. Just normal family vacation moments. Until she said she would go on a real roller coaster when she is 7….slap…. right back to reality.

At SeaWorld I looked at the younger women working with the animals and I thought how much this would be a job she would enjoy. And I watched these performances with a void… a ache for the future we will always be left to guess about. One point she grabbed Charlottes hand and told her she would be the one to teach her how to swim…

We had a character drawing of all 4 kids. And JLK stuck with us the whole time when it was Charlottes turn to sit on my lap…to keep her happy and just be a good big sister…always..

Oh my baby Charlotte you are losing so much. The best friend you will never even know.

The times I get the most angry are the simple times…the glimpses into the golden years we are just barely getting to with her. I know all ages have good and bad but these years…not a baby or toddler but not yet a pre-teen…They are the ones (along with adulthood) that I have been waiting for with my daughter. Getting to look at her and share little inside jokes…or having real conversations with her..

On this trip I got to see my kids relationships maturing too..Playing and fighting, like big kids..about staying on their own side in the car…Then suddenly sleeping on each other.

 

Or one of my favorite simple moments..watching Jonathan and Jennifer on the Disney bus back to our hotel happily “fighting” but like big kids and to then have Jonathan slip back into being a 4yr old just long enough to say he loves her and plant a huge kiss on her cheek.

He loves her…he needs her..

The boys spent last night with my parents. When we went to get them Nicholas ran for me…and Jonathan ran for her. His heart is so big…he has no idea what is happening…he will be forever changed and heart broken…A lot of little boys first love is their mom…I am Nicholas’ but Jennifer…she is Jonathan’s…

Sometimes..when these realizations hit me..I realize I am failed in protecting him from cancer too…

I am so sorry son.

One of the great things about this trip was feeling like we packed a lot of life experiences into one trip. Epcot we got to see many lands…and SeaWorld we pet a dolphin..All these things I am trying to cram in. Much of the things she got on this trip she doesn’t even realize…I think it was more mental notes for me to help me find some peace with all of this.

I have been to DW before. (I was granted a spoiled life). The last time was after our 5th miscarriage when we decided to adopt. My parents were taking my little brother and sister and 2 nephews. I cant even imagine what they spent to get me a last minute ticket…It was such a hard time, actually I think my mom and I were sure it would be the hardest thing I would ever have to face. Never would I have thought less than 7 yrs later I would be going there again…For a reason defying all logic…a reason that is beyond pain and words…

Throughout the trip I remembered that earlier vacation with a gentle fondness..

Jennifer even got homesick on the trip…asking the last 2 days when we got to go back home…another simple life experience she won’t get at the correct time in life…but she got a taste of it now.

And a new symptom came during the trip. Vomiting. Talk about a pull back to reality…The way her whole body quivers and shakes in my arms. And how weak she feels. Then as quickly as it comes it is gone..and she acts like nothing has happened and just keeps going on…She is simply amazing.

We also noticed her tantrums and epic meltdowns have increased. Slowly though I think we are working through it and figuring it all out. I think its pure frustration at losing control. Many of them happen getting dressed. I have to remember JLK was able to dress herself before the age of two. Her outfits and wardrobe changes have become something she is known for. Now she can’t do it. And even with help…getting dressed is hard and can be uncomfortable. And often she doesn’t like the first outfit and its hard for all of us…the dressing and undressing.

I need to be better… I think I just forget…she has always been such a trooper…like just starting to eat with her left hand…I forget how hard this must be on her mentally.

She told Tony the other night that she wants to kill the tumor.

…us too baby…us too…

But I am learning. Tonight when she was screaming at me while coloring I asked if she was mad she couldn’t color like she used to…She said yes. Me giving words to how she was feeling seemed to help. I pray for clarity to continue to do that for her.

One night they had a dance with the Incredibles dance party. She loves to dance I thought for sure she would want to do it. But she didn’t…So I went with other kids. But something pulled me back to her…(thank you for that pull) because after the 3rd time of total attitude she took me up on carrying her to dance. And once she said yes her joy exploded.

For awhile I had Nicholas holding my hand, wearing Charlotte and holding Jennifer. I must have looked crazy but it didn’t matter. Eventually though we convinced Nicholas to hang with the boys and I handed off Charlotte. Then my daughter and I danced. Together we moved and smiled and belted out the songs. I gave it everything I had.

Her laugh and her smile.

To be the giver of of her movement and shining happiness meant everything to me.

After dancing through nearly two cycles of the show I told her we needed to be done. We hugged…so tight…and I couldn’t contain it.

I wept. A solid silent sob into her shoulder.

I told Tony I’m not mad at you but I cannot look at you right now…we just need to do something. He is my best friend and right then if I made eye contact with him…I would have no control..

Those moments with her…That filled me to the brim with her smell and her life..they also overwhelmed me with fear to have to stop dancing with her one day.

Our last breakfast I did a toast (my kids love a toast…and a secret). I toasted to our wish come true wanting us to be part of her wish come true.

Thank you Jennifer Lynn.

At the end of the trip I received a text from a friend…that if time froze tonight she would know who did it….

Jonathan in his super hero cape got asked constantly what his super power is. Made me think what would I want mine to be…

I think I know that answer…

To freeze this perfect time. My husband. a 6yr old, 4yr old, 2yr old and 8 month old. My perfect family.

The screams and chants from within never really change more just are added..

shrink tumor shrink 

oh my god…oh my god…please no..

stop.freeze.stay.