There’s a small oak tree visible from my bedroom window. The leaves are wilted and brown from the cool winter weather; acorns scatter the ground beneath the tree.
When we first moved to Orange Beach, I would lay in bed each morning and stare up at the beauty of this tree, watching as its limbs waived in the warm gulf breeze. Chris had not yet moved yet so it was just Annadelle and I sleeping in the same bed, snuggling with a few eskimo kisses before getting up to prepare for school.
This morning as I woke up and stared at that tree, a tear faded down my cheek and onto my pillow. I looked over at Annadelle, still asleep in our bed and snoozing like it wasn’t already 8:30am. Chris had gotten up early to go to Lowe’s so once again it was just me and Annadelle. When she woke up, she asked me, “Can you turn me over?”
And that is the difference from a memory I never knew would be so significant.
We’ve been out of the hospital for a few days now. We were finally released last Saturday as Annadelle’s SATs went back up (and stayed up) to her normal level. We came home on antibiotics that she is still taking for another day.
Since we left the hospital, we haven’t done much at all. Chris has spent the last few days tearing down a part of our fence to repair it, as months of overgrowth took over and ruined an already fragile fence. Annadelle and I have spent most of each day watching TV, taking a very small amount of time to do therapy. She fights me when it comes time to do it and whines a lot.
To be frank with you, I’m engulfed in emotion, so much so that my desire to do much of anything has faded away like the tear from my pillow. I say “I’m overwhelmed” because I don’t know how else to say I am drowning in worry, uncertainty, and hopelessness. It feels like our lives have stopped while everyone else has moved on, like we’re on a treadmill while our friends are walking on a path. I don’t know if Annadelle will ever walk again. The not knowing is killing me inside, ripping away what tiny amount of joy I have.
And of course I feel guilty about that. I should have joy, right? Of course I should. I should have joy in Christ, joy in knowing Annadelle is here with me, joy in hope for the future. But to be honest, the joy is overshadowed by the burden and responsibility I now have, and I’m terrified I will let her down.
Tonight my friend Frances called me. Frances’ son, Matthew, also has AFM. We spent a lot of time together as roommates in Baltimore and I can honestly say I consider her family now. She has probably seen or heard me cry more than any of my other friends I have ever had and she’s pretty good at making me feel better.
I explained to her that now that we’re home, the reality of how life is now is setting in. I am exhausted from doing every little thing to keep Annadelle occupied or working on therapy or eating or bathing or literally anything. Frances knows exactly how I feel, as she is having to do the same with Matthew.
We talked at length about how we feel dealing with AFM. It was such a relief to know she feels as lonely as I do, despite us both being surrounded by friends and family. When we first went in the hospital, my phone was blowing up with people checking on us or sending us well wishes. I don’t guess I appreciated that as much as I should have at the time because of how unstable Annadelle was. I was preoccupied with every single aspect of her care that I didn’t take the time to really listen to many people calling or messaging. Now that it has stopped, I wish I would have waited to open the letters or texts. I know that sounds strange, but it feels like everyone else’s lives have gone back to normal as we are here still dealing with trauma that seems never-ending.
I know this post seems like a big ol’ pity party, and in essence it really is. I am trying to be painfully honest so that when I’m passed this feeling I can look back and laugh at the worries I have now. Talking to Frances made me realize I wasn’t the only person feeling like this. She helped me to realize how far Annadelle has come and how far she will go with continued work. Frances basically gave me a slap across the face and told me to get my ass back in gear, something I didn’t even know I needed.
Anyway, would you pray for us? I would ask that you pray specifically that we see improvements in Annadelle’s legs so that she may walk. I would give anything for her to walk again.
Thanks for everything, and I promise my next post to be more uplifting.