I have been sitting her for well over an hour…I don’t know what I want to write but I know I want to write….
We had a holiday party with the Bass Center patients (childrens cancer) but I will blog that later since all my pictures are on my camera and I don’t have the cable to get them onto my computer.
Yesterday hospital time was not so good. Friday they cancelled her treatment and Monday was a struggle big time so they cut the mask, Tuesday no issues so we figured we were home free. I need to learn not to do that. I know nothing right now…everything is always up in the air. Even cemented plans can crumble in the blink of a eye now…Its our new normal. Post hospital time with the boys was great…but thats to be blogged later with pictures.
Today Tony and the boys were with us for the first time since they spent the night here after the party. Before we went back I asked to speak to the head radiologist about Jennifer and the struggles thy were having when she was sedated. Its scary to hear your child is struggling to breathe…but at least now they can fix it…when the damned tumor regrows breathing difficulty will be a growing enemy…I wanted to avoid it happening again and again if possible now while we have the opportunity to control it for her. We decided to go ahead to try to treat today.
After a long wait for her and Tony and I exchanging a lot of anxious glances they told us she was in recovery and Tony headed back. I asked him to text me if she got treated or not. And sent him with a little note of questions for the drs. He texted she got treated but no drs back there. I will be honest in saying I was disappointed…we knew there had been issues but didn’t know what.
Later in the day though the dr did call me to discuss and apologized for not coming to speak with us immediately. They are busy…lots of kids to be saving…so we are ok with it! She did in fact get radiated today but it wasn’t optimal. They changed a few things…she explained it to me but to say it was over my head would be a understatement! She also said we need to do a whole new set up tomorrow. Basically starting over for the remaining 10 days of treatments…re-measure…re-set the beam….re-postion her and re-make the mask. Hopefully this is the trick to help her breathe and be safe throughout the remainder of therapy. That also means no radiation for her tomorrow and another day added to the end.
That added day would put us leaving for Disneyland on the 20th and coming home on the 23rd. Too close to Christmas and too busy at Disneyland. Tony and I still have to decide for sure but its looking that way especially since we don’t know if she will be cancelled again.
I am disappointed. I am frustrated. Our tickets are refundable but only to be used towards airline tickets for the people named. I don’t know if my daughter will be alive long enough to use hers. So we are talking about going 2 days after Christmas…I am re-learning every day not to plan…really anything…what the morning starts off like is often nothing like the evening endings. My over planner self is trying to hard to go with the flow and be in the moment.
Its hard to be in the moment with 4 little hearts we need to be caring for though. Having the boys here was so very good for Jennifer. We aren’t so sure it was good for our boys though. Jonathan has always been one to struggle containing the intensity of his emotions…We actually started him with his “talk doc” a few months ago and he made huge improvements…now we are noticing a big backslide. Nicholas is having accidents. That may seem very age appropriate but its not Nicholas appropriate. Its just not him.
This is why we wanted to do Disneyland before our Make A Wish trip to DisneyWorld… We realized if we went to DisneyWorld with all the kids first we would be so hard on the boys. That if they wanted to go on a ride or anything really we would be frustrated since we would want to do everything Jennifer wants…Its hard to admit that. How we couldn’t just be appreciative of the time we have on a amazing and generous trip for our family of 6. Its the truth though. Its something we as parents to 3 healthy children and 1 dying child are trying to navigate. Alright honesty time…I wrote 2 healthy boys first…I get so caught up I almost never mention Charlotte. How’s that for some high quality parenting. She is just so apart of me right now…like a appendage…I hope thats o.k for her.
How am I supposed to juggle all these different needs and wants in such a critical time? Its different then the juggling I have always been lucky enough to do….this matters. It really really matters.
And then there is my husband. And my mom and my friends. I want so badly to be there to do this right for them too. Even typing this I worry about not mentioning my brothers and sisters…and nephews etc….I don’t want to let people down or disappoint. I want to express the love and sorrow my heart is filled with constantly for those caring about me about us…. There simply aren’t enough hours in the day.
Its why I try to not put pictures up of anybody beyond our 6…but think about it all the time.
This blog is helpful for me. I do need to do it for myself. I will admit though when I miss days I feel guilty. I know people..ummm I dunno if enjoy is right…maybe appreciate my writing our story. With all that is constantly being given to us I feel this is my way to give back. This is my way of helping to support my family and give my husband a bit of breathing room.
Tonight though I feel weighted with the enormity of it. Not JLK…thats a weight beyond explanation…but the weight of my desire to do right by all those around me. This sounds awful I know….but its so many people I don’t know how to do it. I am so grateful…this is a lucky problem to have I realize that. But tonight in my little apartment with my two sleeping girls I feel like I am balancing a house of cards and I am no engineer.
I can’t fix the pain I see in peoples eyes for my daughters struggle so on most levels I can handle that. But feeling like I may disappoint or hurt those that are loving me so hard…thats too much to bear.
I know how insane and backwards this sounds outside of my head. This might be my first journal to go unpublished….
And then I look through pictures and I come across these and I think…
How are they ever going to be ok without her again? They adore her. They need her. They need me. A piece of their mommy and daddy will go with her…forever.
….and I just realized. A piece of them will go with her too. No.
None of us will ever be whole again.