
Ezra Sept 2011. This was the first time I went to a restaurant in my wheelchair. Mommy stayed home to entertain Ezra. He played in the car.
I never cried when I lived in the hospital. I have read some accounts that people noticed my eyelids were wet, and my face crumpled up like I was crying when Ernie & Ruthie went home but there were no tears – and these incidents were before I woke up. After I woke up I was too “arms akimbo” to cry. I was busy scoffing at the situation and wondering why I was surrounded by people who insisted on prolonging it.
But once I came home and began to understand that it really happened I started to cry. I never cried at Rehab – I might have sniffled a little afterwards, but not during. Okay, I might have gotten a little choked up when I talked to S (OT6) about leaving, but that was a loaded situation. The first time I really cried during Therapy was with M(37). She was holding my belt, trotting me around Planet Rehab’s “Independence Square” with the fake ATM, kitchen, diner, gas station, etc. and I suddenly lost it a little bc my legs felt like jelly and I sensed that control was slipping away so I panicked and whimpered/boo-hooed while M resolutely kept moving forward.
She could tell that I wasn’t crying all-out and I just needed to hang in there and my legs would start being more cooperative. So she just gripped my belt and said comfortingly, “You’re okay,” as we kept trotting along.
A couple seconds later the ridiculousness of the situation hit me and I started laughing uncontrollably. This time it really was all-out and I had to lean on the diner booth’s table as we passed to pull it together and M murmured something apologetic to some doctors on a tour.
I went from crying to laughing in a blink of an eye because I knew I was safe. Since then I’ve heard friends use the “You’re okay” line on their kids. Usually the child will get a boo-boo or have a run-in with another kid and they’ll turn to their parent for guidance on how to handle it. If it’s not a big deal the parent will go, “You’re okay,” and the child, having sized the issue appropriately, will resume playtime.
My parents were advised to tell me what happened before I woke up so I wouldn’t freak out when I found myself in the hospital, attached to machines. Sadly, I had no recollection of them telling me what happened so I did freak out – but I couldn’t verbalize anything – I was just thrashing around in my bed and having scary dreams.
I’ve “met” a few people who have loved ones who had an AVM rupture and were still sleeping and they stumble on my blog or we meet at AVMSurvivors.org. I’ll tell them that I was unsure and just plain scared when I woke up so I need a LOT of reassurance. Essentially, I needed someone to say, You’re okay. My family and friends did this for me by staying with me and doing things like putting Vaseline on my cracked lips (thanks, Mom!) and putting lotion on my feet (thanks, Ai Ai!) PS. I never let anyone touch my feet before I got sick (I have a thing about feet). The only reason I let Boo Boo put lotion on my feet was bc I had just asked her to cut off the “invisible tape” from my legs. (I thought my lower limbs felt weird bc they were bound up in “invisible” scotch tape.) When she informed me that there was no tape on my legs (turns out they just feel like that because) she still wanted to help me so she rubbed lotion on my feet. 🙂
I didn’t read Dad’s emails until about 1.5 years after the bleed. Dad is less hands-on in terms of caretaking but this excerpt from an April 28, 2011 (3 weeks post rupture) email shows he was telling me You’re okay in his own way.
Her facial expression shows discomfort and sadness. The staff is administering some pain medication. As informed previously, we have been anticipating that as she comes around slowly and regains her wakefulness in measures, she’ll probably realize her disappointment over what has happened. Things were progressing so well and so confirmatory of her exercise to serve the Lord in Burundi. We weep with her as we discern her sadness. She is an obedient daughter and we are confident that she is willing to accept all as in her Lord’s sovereign will. We prayed and read the rest of John 15-17 to her tonight. The words “in a little while,” “your grief will turn to joy” linger in our hearts and we trust, by His grace, in hers as well.
Thanks for the vote of confidence, Dad! Actually, he wasn’t saying You’re okay – he was saying By God’s grace, you WILL be okay. And I am.
“You’re okay.” I say that to babies/toddlers ALL THE TIME. Even if it’s kinda my fault that we played too rough. Haha. Plus I think I need to start using it on myself sometimes…
I can totally hear it in your voice!!
Another tear or two shed as I read this post, Ning. Had not seen/read that update of Dad’s in a long time. Brings back a lot very clear thoughts and emotions from that time. So thankful for you! Love you.
Xxoo
Yes, exactly what AiAi said! And I am touched to remember that your Dad’s email spoke mostly of the dissapointment and hurt that he felt you were feeling, though I’m know he felt a different kind of hurt keenly himself, as a parent watching his child suffer.
P.s. Aaron Copeland’s “Simple Gifts” is playing on the radio right now. 🙂