1 Year + 173
1 Year +173
Friday night we were given tickets for a Rockies game. It was a beautiful night and we had a perfect view to watch the sun set over the mountains. We got to see some of Tate’s Regis softball girls who came to say Hello and saw that Brent’s Place was there too. Denver is huge, but baseball brings everyone together. Tate made it most of the game before nausea and fatigue caught up. It was a nice night.
Fatigue has been off the charts the end of this week. Saturday, Tate slept all day. Sunday, she and I attempted church. Nausea hit and Tatum fell asleep sitting next to me. So we didn’t last long. I’m assuming the sudden sleepiness is due to the ongoing inflammation, but with Tate’s complicated neuro hx, makes me nervous we’re missing something. Tate has been having more trouble with her vision and increasing headaches as well. There’s always appointments on tap to deal with both the old and the developing.
Keira and I took a tour of Front Range Community college on Saturday. She signed up for one class and it appears she’ll be well supported there. An option that is a huge answer to our prayers! We’re not sure that she’s physically ready as just the couple hours there laid her flat for the rest of the day, but she wants to try and we happily support that. The whole experience happened after an extra tough week and did supply a dose of hope and gives Keira something to work towards.
We’re entering another week feeling cautiously optimistic for Keira and rather defeated on the Tatum front. Grateful to be able to balance some optimism with a whole lot of blah, but really mourning the fact that we can’t just experience a “normal” back to school. This isn’t what Keira wants. She wants to be headed back to her college dorm with her friends. To be near her brothers and to take a full load of classes to one day be a nurse. To play soccer, attend sports games and hang with friends. To order late night pizza as fuel for late nights of studying. And to just live the college experience that she got such a brief taste of.
Tate is now supposed to be a junior in HS but hasn’t attended an actual in class school day since her 7th grade year…and there were only a couple. She mourns all the teen stuff…friends and dances, boys and HS sports games. Theater and music, and anything outside of the identity of only being a medical kid. Trying to come up with a curriculum that fits the cognitive changes and physical challenges for her is a lot. So much of her healing is focused on daily living and weekly therapies.
We’re trying so hard to just “live.” There are good moments and we have so much to be grateful for. But the big picture is daunting. We’re so tired. We hear daily how “good” the girls look. Smiles cover so much. Thank you for continuing to keep our whole crew in your prayers.