Tuesday, November 7, 2017

That feeling.

I wanted to write a 5 year post dx blog last week. Then I didn't. Then I wanted to for sure do it this wkend. Then I didn't. And so I am trying to sit down now and finally put words with the way I feel. It is interesting bc I feel both removed and also covered in the same sort of feelings.

5 years ago seems like a lifetime. When I think about the things that we've done since then, where we've been, who I have known, who I have lost, who I have kept, and who I have gotten rid of... the places we've been - the vacations and road trips. The time we have spent at soccer or dance or girl scouts...



...I *almost* forget about the years that we lived in the hospital. The once a month stint of days pumping chemo into my 2, 3, 4 year old. The 2 weeks after that when Reese inevitably got a fever with a zero ANC and had to stay in the hospital for a few more days. The passing around of children between me, EJ, my parents, friends so we could get to where we needed to be without leaving Reese ever alone.




I almost forget about the bad coffee inpatient, the fear of eating the hospital sushi, the runs down to the cafeteria at 10pm while R slept so I could finally eat for the day. I almost forget about how I would watch Everybody Loves Raymond, then Friends, then King of Queens on TV every night that I spent Children's because it was my timeline of how late it was while I watched Reese finally close her eyes after a stressful day.

I almost forget about her encephalitis while I was 38 weeks pregnant with corbin - or her sepsis a few months later.



I almost forget about Reese not walking. At all. The years she didn't walk. The amazing granny walker that she finally used to get everywhere as opposed to scooting that I still have in my garage is some of my favorite times in our journey. Bald Reese, puff head Reese, spike hair Reese, bob hair Reese, and now she needs regular haircuts.



Now we wake up and take meds, get ready for school, and send her off for a day on her own with the most amazing teachers around. She goes to parties with her friends, she does her homework, she takes care of her sisters... but she prefers to still sleep with me. She still fits on my chest in my arm nook the exact same way that it did when I would rub my face on her hairless scalp. She gets bigger, but apparently that space does, too.

I don't know if I really have anything poignant to say except that I haven't blogged first day of school pics, didn't write about our trip for our 10 year anniversary to vegas, haven't put down all of the amazing photos of daily life that I usually do and it makes me feel sort of stressed inside. I have to get better at that again. Kids getting older seems to be the goal when you're in the thick of toddlerhood for so many at one time - but older kids brings so many more time consuming events. I have been really trying to savor the hour (lol) at night that I get alone-ish. I am trying to let go, catch up on tv, drink some wine and chat with friends...

Regardless, I will catch up on those things I have put into a folder to post eventually. Corbin is home from school because she hasn't been feeling well, Miller was home last week for the same germs. Aidan has a broken wrist and thinks she broke the thumb that is already in a cast, but I tried to wrap it last night and apparently made it hurt worse. Sawyer lost her mind this morning because I had the wrong fruit bars for breakfast. Reese was mad bc the rest of the kids wouldn't wake up quickly enough and she had been coloring at the kitchen table since about 5:45am.

5 years ago, I was hoping to see today with Reese. I was praying that I'd have a fight over her hair and whether or not she needed a jacket. My next 5 years will be full of different types of worry, but for now her meds are working well and so, like I usually do, I will relish in that feeling and wait 2 more months for the next scans.

Reese's FB page: www.facebook.com/gingerfight
Instagram: www.instagram.com/theskelteseven


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