Monthly Archives: July 2019

July 27, 2019 The Long Saturday

We’ve had an eventful couple of weeks, some of which I can’t remember if I have written about or not. If I repeat myself, forgive me.

Last week we were visited by several friends from out of town. My friend, Carrie, and her boys (and mother) came down and stayed at my mother’s house (only a few houses down from mine) so we got to see them a good bit. Carrie and I have been friends essentially our entire lives. Our mothers are longtime friends, and believe it or not even our grandmothers were friends. At this point they all just feel like extended family.

One of Carrie’s sons has a rare disease called Tuberous Sclerosis Complex (TSC), a genetic disorder that causes tumors to form all over the body. Carrie and her son spend a lot of time at the doctor and have navigated the world I now refer to as the “sick kid universe”. She has obviously dealt with this world for much longer than I have, and to be honest it was quite refreshing to see someone living a “normal” life with a sick kid. There are so many days I wake up and wish my life was back to normal…because I guess I haven’t quite come to terms with the fact that this is my new normal.

I had another friend in town, also, named Holley. I wouldn’t say she has been so much my friend as she has my husband’s. They went to school together and have known each other for years, although admittedly they were never very close. Holley reached out to us while we were in Birmingham, brought us lunch, and let us know she had been praying for us. She has a daughter close in age to Annadelle and ironically enough they even look similar, almost as if they could be cousins. Holley told me before that when we were going through the worst of it, she would look at pictures of Annadelle and see her daughter, and obviously felt terrible for us. She has been keeping up with our story since inception and told me during a recent lunch date that she has felt a strange connection to us throughout all of this.

I don’t believe believe we meet people by mistake; I know that God places people in our lives to mold us, shape us, and guide us. We learn from everyone we encounter whether or not the experience is positive or negative- it’s still a learning experience. I think God brought Holley to us as a prayer warrior.

If you think I’m nuts, that’s cool with me. I know it sounds crazy when I jump on the Jesus train, but if you only knew the things I have seen happen with my own eyes since October 1, 2018 you may feel differently. I quite literally saw miracles happen right in front of me, like when I watched Annadelle struggle to breathe. Every breath was agony for her, her skin purple and her eyes bulging, with doctor after doctor trying to prepare us for the worst. Then I sat down on a little metal stool next to her while she had her first MRI and held on to her foot so that she could know I was there. I put my head down and felt tears stream down my face and off my nose as I prayed the same prayer over and over again, begging God to save her.

And I’ll be damned if she didn’t come out of that MRI machine breathing on her own, stunning every doctor and nurse in the room.

I have felt God’s presence over my family so many times since our story began. Like the disciples of Jesus, I saw the miracles happen. I read the red letters, just as they heard them. I know the promises. I have the faith.

But have you ever wondered what they felt on that Saturday? You know which one I’m talking about- the day after the crucifixion. Jesus performed miracles as his disciples were there to witness and heard him say he would return. As he died on Friday they knew he would return, but don’t you ever wonder if they doubted it on Saturday?

That’s me at this exact moment. I know the promises, but I feel stuck in the never-ending Saturday. Life is just in limbo. I’m (not so patiently) waiting for what is next, for the big reward.

This is what I spoke with Holley about in detail at our lunch date. I held back tears as we chatted, although I know she wouldn’t fault me had I let them fall. She knows I needed the talk and the reassurance that Sunday is coming.

Fast forward to today. Our friends have all returned home and we’re continuing life in Orange Beach. Going to therapies, doing some school shopping, and just living. There are many days I doubt the promises, but I’m working to keep faith.

Then today I get a little reminder from God after having Annadelle spend a little time on her tummy on a mat that Holley bought her. She wants to get up on the couch with me and I tell her to climb up there. She laughs as she prepares her legs to get her knees under her, then I help her a bit with her arms as she pushes her legs up into “tall kneel”.

She hasn’t done that before.

Showing off “tall kneel” as she got down to her bed.

Y’all, I cried. I laughed and clapped and cried. I wish I could have taken a snapshot of the smile she gave me, like she was so proud of what had just happened and the realization set in that she could do it. It wasn’t perfect, but it was that little push we needed to know that everything is going to work out in the end.

She will walk again; I can feel it.

July 9, 2019

Since my last update, there have been a lot of changes in our lives. First, Chris’ youngest son, Hayden, moved in with us. He is 17 years old and is starting in to his junior year. He’s been doing summer workouts 3 days a week and got a job at a car wash, so he has met plenty of people and made friends quickly. Annadelle loves having Hayden here.

Updates are few and far between nowadays because progress is much slower. Although we see therapists or doctors pretty often, each day is pretty much the same ol’ same ol’.

It wasn’t until today that I was able to see the visual representation of the progress she has made. To be honest, I don’t see the progress like others do because I see her every day. But for those who go months without seeing her, the progress is much more evident.

In June, my sister-in-law, Heather, came down with her two boys, Eli and Asher. The boys are wonderful with Annadelle and they are really good about including her in whatever they do. They each love to be her little helpers.

While they were here, we all went bowling for the first time since Annadelle’s AFM onset. It turns out she really loves to bowl with help of the ramp. She was able to pick up a 6 lb ball easily and put it up on the ramp which is a big improvement. She is slowly getting stronger.

Our family also had a family reunion in Orange Beach during the month of June. Several of our extended family members have been keeping up with Annadelle’s progress on Facebook and were excited to see her in person. Some of our family members gave Annadelle some money while we were there. Later that week, we spent it on a Nintendo Switch which is something the recreational therapists used while we were at KKI in Baltimore. We were hoping it would help Annadelle with her left hand coordination and fine motor skills. And alas, it did because a week later Annadelle was able to give a “thumbs up” on her left hand for the first time since she got sick.

Later on, Annadelle and I traveled back to our hometown to attend VBS at my mother-in-law’s church. Annadelle used to go there with her Granna on Wednesday nights so the church members know her very well.

The first day I dropped her off, I felt very overwhelmed. Taking care of her all by myself was extremely difficult because I am used to sharing the duties with Chris. Needless to say, the first day of VBS I was an emotional (and physical wreck). As I watched her struggle to fit in on the first day, my emotions got the best of me. I went to my car and cried. I don’t even know how to explain what emotion I felt. The closest thing I can think of is “powerless”.

As a mother, all I wanted to do was to make sure she fit in. I didn’t fit in a lot as a kid. There were times I was picked on and left out. Even as an adult I have been left behind by friends as they find newer, better friends to hang around with on more than one occasion. It’s an ongoing issue that I really struggle with, and I guess I projected a lot of that fear from what happens to me to it happening to my child, especially now that she is disabled. It was always a fear of mine and is now a billion times worse so my emotions simply engulfed me in worry and sorrow as I sat there in my car.

Luckily, I was able to call one of very few friends I have and let it out. She reminded me of God’s promise and helped me to calm down. I think I really did have a panic attack.

By the end of the week, my fears proved to be nothing as Annadelle made many friends. The VBS staff were wonderful with her and I’m so glad she had such a wonderful time.

While we were In Calhoun county, we were able to see a lot of our family again. My cousin/more-like-a-sister Robin and Heather, along with our kids, went to see Toy Story 4 at the new cineplex in Pell City. The kids had a blast just being kids.

Annadelle is continuing therapy 3 times a week until school starts. We don’t have a schedule for when school starts but we are hoping to go at least 2-3 days a week. She will be evaluated for PT and OT at school after a few weeks. Right now we are working on her IEP and will meet with the team on the 18th to discuss the draft. Annadelle is so excited to be going back to school. As for me, I’m an absolute mess over it.

At the end of June, we were blessed to receive Annadelle’s new orthotic braces. She got an AFO for her right leg in the hopes it would help her with the hyper extension of that leg. She also got a KAFO for her left leg since she is not able to bear weight on it very much. He quads and glutes are firing in that leg, but she is still very weak. The KAFO just helps her to support the weight of that leg.

While in therapy, one of our goals is for her to be able to walk with the assistance of a walker. Getting used to walking is one thing, but learning to navigate and support yourself on a walker is another. It is a very slow process but we are praying that in a few months she will be walking with the walker. I wish I could express what an absolute blessing that would be for Annadelle. I have prayed for that continuously and respectfully ask that if you’re reading, you do the same.

The day she was fitted for the braces, she stood by herself for about 45 seconds to a minute. This was the first time she had stood by herself since the onset. I did not realize just how tall she had gotten until then. My little girl isn’t so little anymore. I feel like I missed so much of her growth while in the hospital. When she was admitted, it seems that she was so tiny. Now she’s a “kid”. I’m having a hard time with that realization.

We have ordered a Crocodile walker for Annadelle. We think it will arrive within 2 weeks.

Annadelle was also approved for an Amtryke (adaptive bicycle) through the local AMBUCS chapter. I’m not sure when it will come in, but I was told the chapter is covering the entire cost of the bike which is over $600. What a blessing! She has used the bike before at KKI and Children’s for therapy. The bike will allow her to spend some time outside having fun while also getting in a little therapy for her legs to help strengthen them.

Lastly, I’d like to share this amazing progress Annadelle has made after receiving chiropractic treatment. In conjunction with therapy, you can see in the comparison XRay just how much her posture and core strength have improved. The first X-ray was taken at the beginning of May, the second one was taken yesterday. I am just in shock of how much these treatments have helped in a relatively short period of time. I am so thankful to our friend John who referred us to GCFC.

I’m hoping to have another update soon of Annadelle walking in a walker independently! I am praying it will come soon. Please help me to pray for that. As always, thank you for the continued support.

Until next time…