Walking

Walking
Maddi also will post on her perception of learning to walk again. I have actually had questions about how the walking process went. Maddi doesn’t have many clear memories of the details of that process but I certainly do. Those of you who know us personally know that John and I love parenting together and wanted more children than we were blessed with. We have filled out all of the paperwork for adoption but life has dealt us a different hand than we expected. It is ironic that Maddi’s experience has required us to go through every developmental stage again. We love to be part of the growth and learning of each of our children but this was one journey we never desired.

When Maddi was still in her coma there were two things we were longing for; her to speak and for her to regain mobility. We were encouraged to accept what was and work towards little tiny improvements. If you know me I am a do-er. I believe that hard work can improve any situation! We had so many days in the PICU (Pediatric Intensive Care Unit) where the only movement she made was when we physically changed her position. I had plenty of time to formulate a plan. One thing that creates balance for me is a plan. I was trying to learn as much as I could from the experts so that I could see what my parameters would be.

During this early time, I was praying to know what my role needed to be and how to best help Maddi in whatever state of recovery she achieved. I was learning how to care for an extremely disabled child from the amazing staff but I was being taught through the Spirit the skills that would be needed for Maddi’s ultimate physical and cognitive recovery.

I was already doing the range of motion exercises every hour to help Maddi’s muscles from getting stuck in the spastic position that a coma places the limbs. When the brain gets severely injured the arms and legs go into a spastic position with the arms bent upward with the hands in a tight fist and the legs go out straight at the knees and ankles. Without the range of motion exercises the mobility in those areas would be lost. I was religious about doing those exersise. It was at least something I could do for her. Mobility could only happen when her joints and muscles relaxed. I considered that as step one on the mobility journey.

Once Maddi was taken off all the tubes and machines the hard work began. I participated in every therapy session so I could learn! I instinctively knew that the experts could only work with Maddi so much. I knew from working with my Autistic children that overcoming sensory issues are a pretty big deal and that it was and every day, ALL day job. The Spirit prepared me for that journey. I knew what was required and I was willing to give every ounce of effort left in my person to fulfill that capacity!

Learning to walk began on the side of the bed and in the chair. Gaining head and neck control was a huge effort. At Christmas time I asked my closest friends and family to pray specifically for Maddi to find her neck muscles. The specialists told me that the neck was a very tricky skill to relearn and it usually comes last. I had the strong and distinct impression that I needed to help her find neck muscles and for me not to delay that work. So I began to stimulate her neck with essential oils and to massage her neck and shoulders. I also made sure that anytime she was in the wheel chair she was expected to hold up her own head.

At first she could only hold her head for less than 5 seconds. It was discouraging work. So I did an alternating time plan. I pushed Maddi’s head back and told her to hold it there and then I would count. When she couldn’t hold it any longer, I gave her minute break. Then we would begin again. I can’t even begin to calculate the number of times I said,” Maddi, in the chair your only job is to hold your head, you can do it. I know it is hard. Keep trying.” I would remind her of the prize of walking at the end of this one journey. That was just the neck development; the other part was for Maddi to find her legs.

At that time, Maddi was moving her left arm and leg in a reflexive manner but nothing intentional but the Spirit spurred me on. She was trying to figure it out and I could tell by the look of panic in her eyes that she was so confused by her inability to control her body.

Every hour when I did the range of movement exercises I would sit her up on the side of the bed. I would kneel behind her to provide trunk support. I would position her hands on the side of the bed and lock her elbows, hoping activate the muscle memory of sitting on her own. Then we would start on the head again.

We didn’t stay at this for too long because the look of terror in her eyes would quickly tell me to stop. It was an intuitive feeling to see how far to push her, but as time went on the expectations and time increased. The theory behind the “plan” was that if Maddi can only do teeny tiny increments at a time then we will just provide those smallest of increments multiple times a day.

After doing the sitting, we would move into the “dancing”. Maddi would start sitting on the side of the bed and then I provided her support and made her stand, think of a strong hug! We did this face to face for many, many days, and we would dance, shifting her weight from foot to foot and leg to leg. It was so hard at first, but little by little her strength improved.

Eventually, I stood behind her and she began helping us during transport from bed to chair. Finally one day she picked up her foot and took a step! I was screaming with joy inside but I had Maddi to stabilize so the happy dance was out of reach.

After that she was extremely determined to walk. It took a dedicated, consistent month, every day, all day long to build her strength. I would have been physically and emotionally easier to let her just lay in bed until the “experts” came into work with her but the Spirit carried me and gave me the strength to continue when all I wanted to do is go fetal in the corner. The night would come and my broken ribs and muscles would be screaming at me all night long just to begin again in the morning but it was completely worth it!

The Physical Therapist at South Davis came in one day during our “hourly” therapy session. He was amazed that I knew what to do. He, in jest, asked where my PT badge was. I said, “I don’t have one.” He said, “Well you need one!” He then asked me what other things I was doing with her and so I showed him all she could do. I can’t speak for him, but he seemed pretty impressed at Maddi’s skills. He caught the vision that day with her and became such a motivating factor in her success. Prior to Matt catching the vision, I had a little, tiny bit of guilt because I really wasn’t “supposed” to be doing all of that with Maddi but I couldn’t help myself.

I knew that every day that past was a day we couldn’t regain. I also knew that a rapid recovery meant a better overall outcome. I had to follow the plan that the Spirit showed me and then regardless of the outcome I could be at peace with the results. I figured if God can show Nephi how to build a boat, and divide the Red Sea for the Israelites, he could teach me to rehabilitate my own daughter. I just needed to roll up my sleeve and get to work with Faith as my guide.

To work we went, Maddi and I. I truly believe that the most dedicated athlete doesn’t stand a chance at beating Maddi in her efforts. For some people Maddi got hurt, went to the hospital, stayed a while and now she is all better. I wish it has been that easy but honestly she has proved her ability to work hard and push her body beyond its threshold so much more than I have ever done. She may not be able to run a 4 minute mile or beat someone to the ball in a team sport but she has kept her eye on the goal and pursued it with a vengeance.



Learning To Walk (by Maddi)

Learning to walk again was hard but I did it. I don’t remember much, but I remember that I was telling my legs to move and they just wouldn’t. It was very frustrating because walking was one of the many things that came automatic. I really had to think and focus to walk, but before it just happened and I didn’t have to think.

My mom started by sitting me up on the side of the bed and “dancing” with me. She made me put weight on each foot and when we would move from the bed to the chair she would tap my heels to remind me to move my feet. That’s what got me walking. Thank you mom!

She told and showed Matt what she was doing and he said, “I think she can walk.” and she said, “Let’s try it.” My PT (physical therapist) Matt was the one who pushed me to get walking. At first my parents had to help me and then they gave me a walker, I was mad at first because I didn’t want to need the walker. I didn’t want to be like that forever. I got so mad that I flung the walker against the wall, but it helped me gain independence, confidence, and my balance.

Thank you Matt and mom for helping me walk. Walking is becoming automatic again.