sucks

This weekend we had a very special wedding. Our Fairy became a MRS. I will blog about it more when we get some pictures of it all, I cannot wait to share it! But JLK was a flower girl as was Baby Charlotte and our boys ring “bears”. Couldn’t have possibly been a better day! Here is a shot Tony snagged!

My Dad and Baby Charlotte
My Dad and Baby Charlotte

 

 

 

 

 

 

Today was my first real mom day since all of this started. Getting the 2 bigger kids to their schools and feeding, cleaning, settling disputes all on my own. It went better than I expected! But it was so hard to drop them off. I feel so unsettled being away from them now. I have this overwhelming desire to keep all of my “duckings” close to me. Thankful for good friends who miss gymnastics to let me come over and stay somewhat sane.

But Jennifer asked for school. I gave her 2 options. Her kindergarden twice a week half day or her old preschool. She jumped on the preschool option. Truth be told I was going to try to push her that direction anyways…but I am glad she had the same gut instinct I did. Its nothing against her school…All of our kids will attend the school, they were wonderful before and have been during all of this as well…its just the sheer volume of people there and how much information the students all know.

The things people say…not to me..but her also is shocking to me. About people dying of brain tumors…and how their uncle died of cancer. This is not just to me in front of her…people bend down and attempt to say these things to her. And when they do and I don’t catch them first I feel like I am failing her all over again.

I know its hard to remember that she is only 6…and so much of this doesn’t “properly” penetrate her little head. The hardest for me is the people that say things to her with such love in their hearts…and the best intentions…Even the seemingly innocuous we are praying for you constantly. She hears it a lot…I struggle how to best deal with it since it can be very hard for a little girl to digest just WHY all these people are praying for her. See she doesn’t know she is dying…

…please please please…let her not know.

So to hear that she is being prayed for and how sorry people are can be scary for her. My fingers are stuttering writing this…Since this is only my story and our experience and for some children those words might be so immediately comforting..I have spun it…to say they are praying out of pride for all the hard work you did with radiation. I hope that eases her fears a bit and smooths the language translation some.

I think the lesson I have learned through this that I hope to carry with me…is dont say anything to the child directly. Not a thing unless lead by the parent. And say a minimal amount in front of the child. I posted on our FB site about a woman just coming up to the store and paying for our groceries. She slipped in and out. Only asked me quietly for a hug and let me choose what I would let Jennifer know.

For *our* family that was perfect. I chose to tell Jennifer what the woman had done and got to say my own reason (she heard about JLK just finishing radiation and how amazing her brothers were during that time and Mommy and Daddy and so she wanted to do something to help) It was a story that I hope held some truth and one she could proudly share with her brothers that gave them a life lesson in being a good neighbor.

Tonight in bed we talked about her first day back to school. One of her best little friends is in the class…so that was a huge relief for her and made it somewhat palatable for me to have her away…But she said some kids asked about her eyes and one said her tumor was still there…We talked about her being self conscience about her eyes..and we talked facts…Where it is in her brain causes her body to not always listen to her brain…like her eye and the weakness in her arm and foot. Ultimately she asked if the tumor would ever go away. I told her the best truth I have.

I dont know baby but it might not.

We laid there silent for a few moments cheek to cheek.

We talked about our day some more and had a few giggles at her daddy’s expense. Then talked more about the tumor.  She asked if kids will be scared of her…if its like lice…(just writing lice makes my head itch…you too??)

I explained it wasn’t and then said it just sucked…the brain tumor sucks. She reminded me that was not a good word to use. And I agreed…but I said it again. Because when something makes me as mad as her tumor does I think it really really sucks. She seemed to like that.

I hope she isn’t too scared. I hope we are right in sending her to school.

She shared that she struggled to hold her pencil. It made me want to ram a pencil through my eye..but I just laid there and we talked solutions. Truth is I have nothing…but if a solution is to be found she will find it….just like she has with every single obstacle she has faced.

The only person better in her mind is her Dr. I make a list the days leading up to our visits with Dr Partap about what I will ask…She does too.

We parented her tonight. Thats hard to do. Its why I had so much time to lay in bed with her alone. She and Nicholas (2 yr old) had to go to bed early. Jonathan (4yr) got to stay up and watch a show with Tony. She was rude at dinner…refused to eat or sit at the table. It was so hard to not just give her whatever she wanted…to not move our dinner time to revolve solely around her…but we have learned…its not good for her and equally important not good for our boys. So hard at tooth brushing when she complained of being hungry.

another snuggle time on new years eve
another snuggle time on new years eve 

I caved.

I talked to her about why she missed dinner and what she could have done differently. We talked about not doing that again…and I brought food to her room. Way better than the dinner I made food!! I did talk to Tony before I got it to be sure he was on the same page..The boys wouldn’t know that we brought her food so they still took home the lesson..And I think she is growing mature enough in these intense (yet still going too fast) 2.5 months to get the lesson she needed to get as well.

Parenting a terminal child and 3 healthy ones is a balancing act. I think we walked the rope well tonight….Guess I will know more at dinner time tomorrow. I love our babies.

The same day as the wedding my family did a 5k for us. An incredible amount of money was raised. A portion of it we ear marked tonight for a funeral. We talked about it rationally tonight..no emotions came out discussing burying our daughter…Its disgusting…but necessary I guess.

Last night though emotions bubbled. The most meaningful part I took away from they run they made happen is the love. The love they have for us…the desperate desire to do something…And the love the people surrounding them have for them…the desire those around them have to just do something.

A public thank you to them…my brothers, their wives…my sisters and brother in law…and their children. And then a very heartfelt thank you and plea for continued support for them from those surrounding them.

Another picture from the wedding. A love filled day…with some of the people I love most.

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My parents and a sister and brother in law.

 

 

 

 

8 Responses to “sucks”

  1. I think you’re doing exactly the right thing in sending her to school. It restores some of her structure and “normal” to her world, and that is so helpful for her sense of security. You’re doing a great job navigating this, Libby.

  2. Libby: It was so nice to meet you and your family and most if all Jennifer. The day could not have been more perfect for everyone. Thank you for sharing your family with us.

  3. Totally agree with Kathleen. . .you are doing it all just fine! You are amazing parents, your instincts are right on, you struggle to be fair to all your children and make all their lives as normal as possible while running the gauntlet that you are. YOU ARE AMAZING!

  4. Ok, just saying, Lice are no fair to anyone. Especially to JLK. jeez. and yes, the thought of them makes me itch. i would tell the kids, well they are kind of like fleas on the cat, and not any grosser. Truthfully they do gross me out lol. Seems like each kid had them at least once…

    Your family is incredible. amazing. such a strength for you .

    hang in there

  5. I agree with everyone. Your instincts are so right on and your bravery in following them is so admirable. Love the family photo! You look beautiful and I love Nicholas without any pants! Too cute.

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