Tonight is our last night here in our little apartment. Even if radiation doesn’t happen tomorrow we won’t need a overnight here.
I am glad that she will be happy to be done. Radiation is hard on a little body. But now I have to share her everyday…and she has to share me. I miss my boys, all 3 of them. I cannot wait to see them every morning and night.
But I also have truly enjoyed this time with my daughters. Jennifer and I have gotten so much closer over these 7 weeks. We both have learned so much about each other and I think ourselves over this time. Its actually a little amazing how quickly we have adjusted to this new lifestyle.
Our girls…sisters…Baby Charlotte and Baby Jennifer have also grown closer. I feel like this time of pedicures and movies and tea parties and most importantly giggles has been a gift. For them to live and for me to witness.
Tomorrow though we go back…I was going to say normal life….but its not. We will have to remake our normal. We will all have to adjust and figure out the dynamics in our family now…figure out what day to day life will look like.
Somehow I have been able to navigate daily radiation and drs visits without becoming overwhelmed…but the thought of cooking and doing laundry daily sees so daunting…The things that have defined me since she was first placed in my arms seem so far from my mind now…But they all still need me to be mom…police fights and kiss boo boos. Make dinner and mop floors.
I have to get back into it. I know they are all counting on me….and actually so am I. This is our time to be a family unit. She is able to walk and talk and wrestle and dance. So we need to experience and make memories. And we need to be normal since those are my favorite times with my family.
Tonight before bed we had a pillow fight. Her laugh…it was…well it was heaven. How many times have I missed out on pillow fights with my kids since I was rushed to get ready or get them to bed?
I hope they all know how much I love them…That even though I am often so rushed and on a schedule…they are the most important things to me. Tony I know you read this…
Do you know?
Do you know how desperatly I love you. That I am so thankful for the gift you give me allowing me to stay home with our kids…and these 7 weeks with her?…oh Tony.. Don’t answer…just don’t ever forget.
Tomorrow Jonathan has a event at his school. I am missing it. I feel so torn. He had a drs appointment last week and a hair cut this week. All these things both big and small I have missed out on that I have always been there for in the past. Is he ok?
I go back tomorrow. Put back on my mom of 4 hat…but not all the way. The truth is right now I am always at the ready for her ever changing needs…and always uneasy…unsure what the next steps are.
Yesterday I talked with a hospice care agency. We talked about different options for when my 6yr old dies. Thats always there..its always in my head..the preparation and fear and planning. Will we stay home with her? All of us?
Will the boys go back to live with my parents? Will we all move into a hospice facility together?
We have been beyond blessed with the generosity of others right now…We have “buckets” for the money. One bucket is funeral expenses…Its wrong. Setting aside money to pay for our child funeral…
Will I actually really be expected to go on without her?…don’t answer…I know the answer…I just cannot comprehend it.
So I give her all the yeses I can. We talked today though about appreciating the little things. How going out to dinner used to be the biggest treat for her. Now its become normal.
How do I balance it?
Soon she may not be able to swallow anymore…I want to take her out for every meal she can imagine. But all these yeses…and gifts…they are having a impact…and not the way I want them to. It is so hard to say no.
And for my boys…
This is all temporary for her. It is her life…but will be their memories. We have to be aware of our choices.
Today we packed it all in. Radiation went perfectly and we came home and packed a bag for the day. We painted pottery and went to the movies. Then found some “cold yogurt” and went to the store. JLK brought in her purse with her $8.00 in it to buy something. It was all too expensive which was a struggle for her (and me) so hard not to just buy it for her…
I did find a book for us. Its for mothers and daughters…questions we can ask and answer together…I am excited! Then we went to the apartment grabbed pinkie and headed to dinner.
We played tag with baby charlotte and gave her a bath and got her ready for bed. Simple moments. The best moments.
We lingered at bedtime…for a very long time…We both know how this time we have finally grown accustomed to is now changing. We talked. About family and tumors. Baseball and clothes. I rubbed her legs for a long time. And held in her in my arms…
But before all of that was our pillow fight. In my heart I made a promise to her. I will forever end this day with a pillow fight. Its in my calendar.
December 19th is pillow fight night.