Earlier this week........
It's quiet in our house this morning...no kids up yet, the blower on the wood stove is running...it's chilly, but not cold. Coffee is in the making! Last night, I spent the evening with our oldest...we went out and did some grocery shopping for next week, just us. Effie didn't feel like venturing out for that much yesterday, so it was a good excuse to come back into town with just Carson. I love that time when we get to hang out together...he's a cool kid. And, he grew a little cooler in my eyes yesterday too....
Without going into detail, his heart of giving and taking care of others...being kind in life, has met a need of a kid and our hearts are so full. Things that I know we often take for granted every day...food in our fridge, a warm home, clothes that fit...these are things that so many don't always have. As adults, I think sometimes we skirt around those needs, feeling awkward about helping sometimes, but Carson was insistent that we lend a hand..I'm so glad we did.
This Thanksgiving, my eyes are little clearer than they have been in previous years. I sit this morning in the bed with Effie, she's still sleeping, cuddled up with her Emily angel...her bed is where I've been since we found out brain surgery was imminent. I'm not sure who needs who most, Effie or me....often, I think it's the latter that needs her more. She pretty much tells me when it's time to go to bed these days:) . Props to my husband and kiddos for understanding, and being such a support and help at home!
She's recovering pretty well. She's able to be up and moving by herself, although she tires a lot quicker than she did. She'd been looking forward to making desserts, especially pumpkin pie with me for a week, and she did help, but last night had to take breaks intermittently due to back pain...something that has never been an issue before. I think it's just from her not being as active over the last two weeks, but it's a stark reminder that we have come through one hurdle only to face another. Trying to slow the progression of the scoliosis will be next...a brace fitting in two weeks, and close follow up. There's not a lot of hope that the brace will slow it enough to avoid surgery, but more to delay surgery until she grows more and is more skeletally mature. The next 6 months to a year will give us more information.
The number of phone call, texts, messages, gifts, meals, and especially prayers that have came about to us is surreal, and we thank each of you from the very bottom of our hearts. We've felt those prayers and Effie certainly did! Her faith and strength through this was so inspirational. On the day we were getting discharged, I helped her shower...she was sitting in the shower chair, I was standing in front of her. She was a little chatty that morning from the excitement of going home. While trying to bathe her, she giggled a laugh that I don't think I'd ever heard the sound of before...just giddy to go home. Then she looked at me...her eyes glistening as they were filled with tears and said "He heard everybody's prayers, He heard my prayers and we're going home!" Yes baby He did...she then said in a slightly cracking voice, "I know He has a plan for me." Choking back tears, I know she's right. Neither of us still know what that is, but we both believe it entirely.
The recovery process hasn't been easy...she dealt with lots of nausea and vomiting in the hospital...and watching her in so much pain while throwing up...just a feeling of helplessness. She was hooked up to constant monitoring...Matt slept on the couch in the ICU, while I pulled up a chair to the bed and just leaned over to catnap with my head as near to her as possible...every beep, every nurse visit, every wiggle I wanted to be there. Matt offered and tried to get me to trade...I just couldn't. A mama understands that. On the second day, we moved to a regular room, still on monitors, and as she would fall asleep, she would become apneic. Respirations that had been at 15-21, would slowly creep down....11, 9, down to 7 and even 6 at times....alarms sounding, and I'm reaching over to rub her tummy to get her to take a breath without waking her. Matt, so ever-strong and steady...."I don't like that." Neither did I.
Thank God, we made it home after a 4-day hospital stay, it was an adjustment for her to find a comfortable place, but if there's ever been any doubt before, rest assured the couch pretty much belongs to Effie:) She has no problem telling whoever to "scooch-a-pooch" so she can get in what's been her spot since she's been home. We saw the neurosurgeon on Tuesday and he said she's doing amazing. She's had a couple of episodes of numbness/tingling, but neither lasted very long and he wasn't really concerned about that. She's taking ibuprofen for some intermittent headaches, and she can expect those for a bit from what I understand. He said she has to be in a bubble for about 2 more weeks, then she can try and go for a run with me....Amazing, right?! I'm sure it'll take some time to build her stamina back up, but if anyone can do it, she can. I know two brothers that'll be right there with her, cheering her on!
There were so many times in her hospital room that Effie would be struggling with something....pain, nausea, vomiting, needing her bowels to move so we could go home...whatever it was, when she got emotional, you'd see her reach out her hand and ask me and Matt to pray for her right then...standing strong in her belief that prayer does work, and honestly I'm not sure Jesus has ever been celebrated more than over the poo that got us discharge papers!
Prayer didn't work to make the Chiari disappear, it won't work to erase the scoliosis...and actually, not once has that ever been my prayer. I knew from the diagnosis that this was what we faced, and we needed God's grace and Faith to get through it. My prayers were more to take care of Effie, to get her through surgery...to keep her with us. She has a connection to something so much bigger than I can imagine...it's different...it has been since she was around 3 or 4. That spiritual connection and some of the stories I could tell (and will tell at some point) makes me terrified and reassured all at the same time. I'm not sure that makes sense to anyone but me, but that's how I've felt for a long time.
This afternoon, when we have our Thanksgiving, we will go around the table and tell what we are thankful for...there will be choking back of tears, there will be laughs (because if any of you know Cullen, he will have something clever to say), and there will be celebration of life and answered prayers.
Happy Thanksgiving to you all!