I have been a nervous wreck all day wondering how well she would do without her chair, but (as usual) she kicked AFM’s butt and crushed it in her walker! She even went to grab some mexican food (and Krispy Kreme, as promised) after school, walking at a pretty fast pace!
We had been praying for this day for so long that it felt so surreal to know it was actually happening.
Also, I spoke to the principal regarding the accessible playground. The school is already in the process of upgrading the playground to accommodate all kids with special needs. The new playground will be constructed over the summer and will be ready for her (and the other students) beginning the fall semester. I’ll update with the progress as it comes.
A few weeks ago, we rode by a local Mexican restaurant called Cactus Cantina on our way home one night. As Annadelle looked out the window, she said, “Mommy?”
“Yeah?” I said.
“The next time we go to Cactus Cantina, I want to walk in there,” she replied.
Chris and I looked at each other, smiling. “Okay,” I said, “The next time we go there you can walk in.”
Immediately, I started planning a time to go and decided to invite a bunch of friends and family to join us. I thought we could do it as a surprise and have her friends encouraging her to walk in. You see, she’s been a bit of a turd about walking lately. She tells us it is easier to use her chair so there are times she will whine and cry when we try to get her to use her walker. “It’s hard!” she says.
When we realized she could probably use her walker a lot better than she made it out, we started adding more walker time to our at-home therapy. We learned that if she is distracted, she can make it over 2 hours at a time in the walker. That’s when we decided to start trialing wearing her KAFO all day in preparation for transitioning to the walker most of the time (instead of the chair).
When it came time to leave for Cactus Cantina tonight, a huge rain storm approached and made it difficult to see to drive. Lightening and thunder struck as we made our way to the restaurant. The devil sure was trying to ruin the night, but as usual he did not succeed. We pulled up and Annadelle noticed a blue Jeep pulling in just like the Watson‘s Jeep. “Is that Barrett and Sims?!” she exclaimed.
“I don’t know,” I replied. “It could just be a blue Jeep.” I was trying hard not to ruin the surprise.
Then she noticed Uncle Keith sitting outside under the awning. I thought surely she would figure out the surprise, but she didn’t. Even when she saw Barrett and Sims walking up, she thought they were just randomly coming to eat at the same restaurant we were. “We sure are seeing a lot of people we know!” she said as we made our way to the door. 🤪
Once she turned the corner and saw the crowd of people looking at her, she knew what was happening and tried her hardest not to show her embarrassment. Her friends all stood at the front door and said hello, and Grayce even gave her a hug. Soon after the crowd began to clap for her and we made our way to our seats. All in all, I counted 32 people who showed up for her surprise and to encourage her, some of whom we didn’t even know.
I wish I could explain the feeling I felt as I watched her interact with her friends, and how wonderful it was to see the kids treating her as if she didn’t even have a walker. She fit right in with them as if nothing was wrong, and it warmed my heart to know that although kids can be cruel, they can also be very loving. I am beyond thankful for these kids and for their parents who I am sure have talked to them about Annadelle, kids like Annadelle, and the concept of inclusion.
I know there was a time when I was praying and wishing for this day.
My friends, it has arrived. God answered my prayers and is continuing to heal Annadelle. I knew that if we stayed faithful to His promises that he would give us what we asked for in prayer. I have no doubt she will continue to recover.
And when that happens, what on earth will I write about then? 🤓
We’ve had a fun weekend with friends and family in town for fall break. Annadelle’s fall break was Friday-Monday the week before, but she didn’t really get to enjoy it because she had strep throat.
She got some antibiotics and bounced back pretty quickly, though.
While our close friends Carrie and her son, Kade, were here, we took a trip to the Hangout in Gulf Shores only a few minutes from our house. Carrie wanted to get some photos of the big waves coming in from the approaching storm so we went to the public beach access at the Hangout because there is usually a wheelchair mat there that goes out to the beach. Unfortunately the mat has been removed from that location and I wasn’t able to find where it was moved to, if it was indeed moved. So Carrie and Kade walked out to the beach while Annadelle and I waited on the sidewalk. She was really bummed out that she didn’t get to go on the beach.
After Carrie and Kade came back to the sidewalk, we ended up over inside the Hangout and caught the “foam party” they hold on the weekends every hour. Annadelle has always wanted to go do that, but we’ve been hesitant not to mess up her wheelchair. The smiles and giggles that came from her playing in that foam were well worth the cleanup.
As you can probably tell from the photos, we have been practicing Annadelle wearing her KAFO brace on her left leg for long periods of time in anticipation of taking her walker to school on Monday. Last week we had another IEP meeting to modify her current IEP to include the evaluations from PT and OT. The team decided it would be best to discontinue using the mobile stander at school for an hour a day and just put her in the walker for that time period. The PT is also going to have her use her walker during P.E. one day a week.
She does well in her walker compared to a few months ago, but she has a lot of balance issues. She can’t walk in it without the side and back locks on because she leans to the left when walking. We are hoping the more she uses the walker the stronger she will get and the more balance she will have. I think a lot of it is just having confidence so we will see.
Today we took a trip to HomeGoods (my new favorite store, by the way) and didn’t take her wheelchair. She was able to walk into and around the store by herself (with the back and side locks on). It took forever but compared to a year ago at this time, she has made huge strides. Chris and I continue to be eternally grateful for the progress she has made and have faith that she will continue to recover. There is no doubt in my mind that she will one day walk with that walker with no problem at all, and no locks on.
We have hit a recent problem with therapy, as we have not been able to find a facility locally that will accept her as a patient. We continue to be told she needs to see a spinal cord injury certified therapist, but we can’t do that without traveling a good ways. Our schedules just don’t allow for it and it isn’t beneficial to Annadelle to travel so far for a 45 minute appointment.
We thought we had a therapist locally who would accept her (because she had agreed to do so the week prior), but that therapist decided not to accept her after all. I’ve been livid over her decision and have spent a lot of time praying about it. Two nights ago I made the decision to send her an email that I had initially intended to be an ugly one, but the Holy Spirit grabbed me before I could let that evil come from my lips (or fingertips, in this case). I ended up just telling her how disappointed I was in her decision not to accept Annadelle as a patient and urged her to reconsider. I haven’t heard back from her and doubt I will, but I feel better knowing I plead my/Annadelle’s case and did all I could. If it doesn’t work out, I know that wasn’t God’s plan and there will be another therapist who will be willing to fight for Annadelle.
Annadelle is doing very well in school and made all A’s and B’s on her report card! She has been working so hard in at-home therapy and at school to catch up. We are so thankful to the care team at school who have been working to get her caught up. We really are blessed for that.
We received her school picture proof this past week and I cried like a baby. She looked so beautiful and I just kept thinking about all the things that AFM took away from us this past year, included her first school photo from kindergarten. It’s stupid stuff to some people, but when you don’t get to experience it, it’s like the entire world ripped from you. I think not being able to experience some important milestones for us has made us much more appreciative of what we are able to experience now.
I was telling my FIL this morning that I thought I would dread seeing the Facebook memories from a year ago because our time at USAWC hospital in Mobile was quite traumatic for all of us. I would be lying if I said I had not woken up in sweats and crying dreaming about those nights in the hospital. But as time has passed, I realize I am able to look back on those times and see how far she has come, not what she can no longer do. Of course I still have moments of great sadness, but mostly I am just so grateful to God for what we still have. She’s here with us. She’s thriving. She’s loving life. And she’s continue to defy odds like never before.
She’s truly a miracle, and for that I couldn’t thank God enough.
I had to take a break from reality today, a little time to just stand at the shore as the waves crashed over and over. It was a time to talk to God and listen for an answer as I closed my eyes and took in all the sounds and movement around me.
How peaceful it was to just be in His presence and soak in the feelings of comfort and warmth. It wasn’t until today I realized I needed that.
We have finally begun to settle into life as we know it. Things are a little rocky now and again, but overall we’re getting our groove back. The days are a lot happier now that our grief has progressed and a good bit of time has passed.
I didn’t even update the blog after the yearly anniversary of AFM had reached us. I thought I would dread that day, but it was just like any other. It’s almost as if I had convinced myself that we were racing time, like if we reached one year and Annadelle wasn’t walking independently that meant she would never walk again. But after all this time I realized that was just a lie of the enemy and there is no cap on recovery. She continues to make progress every day and will continue to do so for many years to come.
I wish I could give you a description of her recovery thus far, but it is really just little things we notice. For example, she can transfer from her walker to her wheelchair by herself, or be in the walker and pull the seat down, then sit by herself. It just continues to amaze me how God is answering our prayers. And although it may be much slower than we have prayed for, God fulfills his promises. Always.
Last week Chris was able to convince a physical therapist locally to take on Annadelle as a patient which will be a huge blessing for us since it is so much closer to home than Fairhope (literally 5 minutes from our house). I have to call and check tomorrow to make sure all of the paperwork is squared away before she can get in for an evaluation, then hopefully get on a schedule several times a week. We will miss her therapists in Fairhope, but the drive there just was not worth it with her busy school schedule.
I’m quite tired so I’ll keep it short tonight. I think there are probably a lot of updates I have forgotten to write about so I’ll write again tomorrow. For now, please continue to pray that our sweet girl will walk independently again. Be blessed.
Although we didn’t do much today, Annadelle said she had a great birthday. We slept in a little bit and spent most of the day hanging out.
My mother-in-law, Dorothy, drove in from Alexandria and will be spending two nights with us. Annadelle was excited to see her Granna but asked where Eli and Asher (her cousins) were. Granna explained that they couldn’t come because they had school. Annadelle has no idea that they are going to surprise her next weekend when they show up at her birthday party. A few other members of our family including Maddie and Woods, two more of Annadelle’s cousins, are coming in from Calhoun county (5 hours away) for her party on the 23rd.
She had a lot of friends send her video messages wishing her a happy birthday. She’s about like I am when it comes to getting attention or receiving compliments. When told, “Happy birthday!” she usually replies with, “I heard you.” 😂😂😂
Annadelle was super excited to see this beautiful yard sign display outside of our house this morning! A friend of mine has a friend who runs Sign Gypsies, and that friend had contacted me about putting up the display. Apparently she had been following Annadelle’s story and wanted to do something special for her. Things like this are so thoughtful so I hope some of my readers will check out her services. Please give her a call if you want an adorable display like this for your kiddo or special event!
Annadelle has asked that I make her a birthday cake, not buy one. Of course I couldn’t turn down her request. She was able to help decorate with the sprinkles.
She also received many packages today from friends far away. She spent a lot of the day playing with all her new toys and riding her Barbie camper that she got for Christmas.
For dinner Annadelle requested that we eat at Desoto’s because she said they “have good chicken and fries.” It is about a block from the beach so we walked over to the handicap access mat in Gulf Shores and let Annadelle put her feet in the sand. Since being in the hospital for 5 months, it had been quite a while since she had visited the beach. When she put her feet on the sand, she told her dad, “I want to walk.”
On the ride home, we drove by Annadelle’s school since Dorothy had never seen it. When we passed the fire station, Annadelle told Dorothy, “We went on a field trip to the fire station. That was when I was walking.”
I had to hold back tears as I listened to her say it very matter-of-fact. It almost felt like she didn’t think she would walk again, like stories of before the hospital are “when she was walking” and the present day is “now that she can’t walk”. I am still praying every night that God touch her, heal her, and let her walk again. It is to hard to have patience when you are waiting on God’s time. Meanwhile, she’s missing out on so much.
I told her we wouldn’t do therapy today since it is her birthday, but I thought having her sit on a peanut ball wouldn’t be too much work once we got home. She wasn’t able to sit on the smaller ball we have a few days ago but she did well on the larger blue one. I put cushioning around her to make sure she didn’t hit her head if she fell, but she was able to hold herself up relatively well. Eventually we turned her around and put the coffee table in front of her and she did even better. I am hoping time on the peanut ball will help to increase her core strength through balancing and also her legs from keeping her stable.
Tomorrow she has a doctor’s appointment in the morning and her first pool therapy at 1:45.
Please continue to pray for our precious girl that she may strengthen her core muscles and her leg muscles so that she may walk. It is my constant prayer.
I’ve heard that too many times to count. I know that, indeed, life is not fair. I will never understand why some people face more struggles than others, but it doesn’t mean I can’t be angry about it.
To be blunt, I’m at the point in my stages of grief that I’m angry about what has happened to my family.
A few days ago, we went to the Orange Beach Arts Festival at the Coastal Art Center that sits right on the bay. There were many vendors, craft stations, and performances to enjoy, but I didn’t enjoy a second of it. Instead, I thought about this beach. Before AFM, Annadelle would have begged to take her shoes off and wade in this water. The sad thing is that I probably wouldn’t have let her.
But now? I wouldn’t hesitate to say yes if she could walk. I would give anything- literally anything- for her to be able to walk and enjoy life as she once did.
As we walked to the end of the pier, I was overwhelmed with sadness. It was a beautiful day with gorgeous weather, but all I could think about was that beach and how much I wished she could walk along and play in it.
It breaks my heart to know that the only way she can truly experience so many things is for one of us to hold her or carry her to it. She no longer has independence. She can’t brush her teeth by herself or brush her hair. She can’t get herself dressed or use the restroom on her own. Getting her dressed or giving a bath is a huge effort in itself. I try to focus on the things she can do, but it is quickly overshadowed.
We are exhausted. Mentally and physically, Chris and I both are worn down. We have spent so much time living in hospitals that it’s almost like we don’t know how to function outside of one anymore. Living our lives is now more a chore than a joy. We have lost ourselves. We don’t have many friends here and are both very lonely.
Of course I recognize this. I know there is a problem, but it does not feel like there is a solution. The solution would be for Annadelle to walk again, and I feel like we have been trying everything we know to get her to walk again, but God has not answered that prayer.
Every. Single. Night. I beg Him for her to walk. I don’t feel like he hears me. I see so many stories on the parent group from parents whose kids were affected like Annadelle was. Many of these kids are walking, playing, enjoying their daily lives. While I am truly overjoyed for them, a big part of me is so jealous. Why isn’t Annadelle able to do those things? Why doesn’t God fix it? Does he see all of these tears and hear these cries for help, for healing? It doesn’t feel like it.
I am so worried this is all of the recovery that she will get. I can’t help but battle this feeling that I have failed her already. I am not strong enough, mentally and physically, to do this for the rest of her life. I know that there are kids who recover with time, but I don’t feel like I am strong enough to do this for another year, two years, three years or more. Surely God knows this.
I am truly carrying more than I can handle.
Even still, we are continuing to try to get in enough therapy at home every day, praying that this therapy helps to strengthen her arms and legs. She is not tolerating the stander for very long at all and cries after about 30-45 minutes. We try to keep her motivated or distracted, but it isn’t working well.
We were finally able to order her SPIO vest, but I have no idea when it will be in. Hopefully we will get it soon because her posture is struggling and she has already developed scoliosis. The rep from NuMotion is meeting us tomorrow to measure her for her new wheelchair. I am praying that it comes in quickly and that insurance approves it.
Most of all I am praying for healing for Annadelle. I know that God has worked miracles in our lives while we were in the hospital. I saw it with my own eyes on several occasions. I am praying for another miracle, and that is for Annadelle to walk again.
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.