Update from Megan:
As of today, Michael and I have been home for 4 weeks. Home has been healing and home has been hard.
The healing: I continue to see small improvements in his memory. Mike has gotten better at recalling some details from a day before. He'll recall an activity that we did or a person that we spent time with. He can't fill it in with many details but this is an improvement from forgetting what he did just 10 minutes ago. His sleep is good and he took one nap this week. He finally recognized his speech therapist yesterday and got his name right on the 3rd try! Those are definitely things to celebrate.
Speaking of celebrating - it's all Michael wants to do these days. Plan a party for everything, everyone, and every milestone big or small. If you've spent any time with him lately, I know you have been roped into some party he wants to throw. My imaginary calendar is very full.
Michael was gifted an alternative cell phone with a local number while he is still healing. God bless the handful of people who text him back. Michael's next obsession (second only to party planning) is to get a truck. We get photos all day long of trucks he wants. We regularly discuss Ford F-150s versus Chevy Silverados. If you ever see us in the ballfield parking lot snapping a photo of your pick-up truck, I apologize. He just wants to ensure he remembers what to get one day. He doesn't remember that he already took 46 photos of a similar vehicle and he gets upset if I ask him to stop.
It's been quite a learning curve for me. I am learning what is worth getting embarrassed about in public and what can just be let go. It's very revealing about my own pride. Michael asks many questions that typically are acceptable for our kids to ask but when an adult does - it's just weird: At a coffee shop counter "A Latte?? What's a latte?? Mocha? Oh my gosh it's chocolate? Heck yes! Why is this taking so long?" I've debated making a hat or a t-shirt that says, "Have extra patience with us. He lost his memory," but he can still read so I don't want to offend him.
Michael says "Go HOOOOS" to anyone sporting anything UVA. Literally anyone. Even those people that you or I would catch the vibe that they don't want to be spoken to. Michael does not catch vibes.
I have learned that memory matters when we are eating. I cannot leave food out on the counter for grazing or else Michael will eat every last bit of it. He does not remember eating it. Cookies on a plate? Gone. A bottle of orange juice? Gone in one morning. I fed him a big plate of enchiladas the other night before baseball and 10 mins later as we hopped in the car he said, "You don't have to feed me dinner tonight. I'm not really hungry." I just stared at him. I've got to pay double attention to everything or he's going to be upset that his 30 lbs lost in the ICU are back on in no time.
On the medical front, living in a rehab facility was nice because there was this cohesive umbrella of care. Now that we are home it feels like I have to be that person and I have no idea what I am doing. I attend therapy with him but the therapists are separate from his cardiologist who is separate from his neurologist (who we haven't even gotten on the schedule to see yet?!) who is separate from the neuropsychologist. I feel like I don't know how to pursue advocating for Michael. He has some clear problem areas still: memory & attention, he does not experience emotions nor is he able to empathize with another individual, he doesn't experience the feeling of hunger - so something is very off. Not to mention we still don't know why he went through sudden cardiac arrest in the first place so there's this haunting question of will it happen again?
Making decisions and being proactive takes a lot of effort for me. It feels like that sensation of attempting to run in your dream but you can't go fast. I feel stuck most days.
Where I need help:
Our kids still need your prayers. I have some really helpful tools that I learned from my counselor this week to navigate some of the mess. Hopefully I can be faithful to putting those skills into practice.
The meals you have been providing us are a huge blessing. I cannot do it all in this season and the cooking has struggled.
I think I need some Apple ID tags. Yesterday, Michael was trying to prove he could keep his driver's license in his wallet and as he was saying "I will keep it in my wallet," he interrupted himself with, "wait...where is my wallet." We then spent 15 mins looking for a wallet. An empty wallet save for an old Costco card and a prom ticket from 2004.
People spending time with Mike is amazing. I love it and need it, he loves it and needs it. Playing tennis, card games, chess, going for walks, going out to lunch, sitting in our backyard - all of it helps.
And lastly, I need someone to knock some sense into him about running. He thinks he can go for runs daily but he cannot. It elevates his heart rate way too high and he is not medically cleared for it. In this very moment, he is stretching in our front yard for a run after not agreeing with me about exercise so I need to get out there and chase him down. It's quite a sight to see.....send help.
Psalm 102:18-21
[18] Let this be recorded for a generation to come,
so that a people yet to be created may praise the LORD:
[19] that he looked down from his holy height;
from heaven the LORD looked at the earth,
[20] to hear the groans of the prisoners,
to set free those who were doomed to die,
[21] that they may declare in Zion the name of the LORD,
and in Jerusalem his praise,
