Holly & Alicia – April 2018

In this season of being thankful, I find myself thinking back over the major transitions that have happened in my own life in the last two years. Since the age of 19, it had been in my heart to travel and share the Gospel, but growing up as a diehard Georgia girl, I always figured that I would call Georgia my home base. However, in the summer of 2016, my life changed dramatically. After a very painful family conflict, I found myself living in the Carolinas, waiting for my house to sell back in Georgia, and wondering what my future held. I could not see an hour into the future, much less a week or a month or a year.

Over the course of the next few months, I faced an intense internal struggle. I greatly desired to live an independent life, yet I was so dependent upon the help of others for pretty much every daily activity. At 15 months of age, I had been diagnosed with spinal muscular atrophy (SMA), a neuromuscular condition that was predicted to kill me before the age of three. But God had other plans! So now, in my early 40s, I still have to depend on the help of others because my body is weak, but my spirit and my soul are very strong.

But in those first few months of transition, although surrounded by people who loved me and who had chosen to be a part of my life, I still battled my deepest inner fears. What if these people who had so willingly taken me into their lives changed their minds? What if I became more than they wanted to handle?

As winter passed and spring came, my house sold and I moved into the home of my best friend. Her granddaughter had just moved out into her own apartment, and both of us were single and very involved with ministry. It was a good arrangement for both of us. For over a year, I was able to find a new level of peace and rest. During that time, things that had been hidden came to light in the comfort of a place where I was finally safe to let my vulnerabilities be exposed.

I realized very acutely that it wasn’t the physical disability that had been my biggest challenge. Having a significant physical disability is not what causes trauma and suffering. It is only a visible canvas upon which a picture is painted.

See, trauma and suffering are peculiar things. In and of themselves, they are nothing. It is in our response to them that we see what we need to see.

And during that year of growing and healing, I began to see the value of perspective more than I ever had before. What I chose to focus on would become the reality I’d create. If I chose to allow trauma and suffering to paint the picture of my life, I would be handing over the paintbrush to the results of a fallen world. Instead, I had to re-frame the experiences of my life in order to let the picture become a reflection of the One in whose image I was made.

And what could be the key to the re-framing of my perspective? Gratitude.

Being grateful to the Lord for His blessings instead of amplifying my painful experiences was a game-changer.

I began to see the Lord bring miraculous provision into my life. It was so powerful. My friend, Sandy Renner, says it like this: “Faith moves God’s hand, but gratitude moves His heart.”

When His eyes rest upon us and He sees our response of gratitude to Him for His blessings, He is moved. On the flip side of gratitude is a dangerous reality. Romans 1:21 (NKJV) says: “…although they knew God, they did not glorify Him as God, nor were thankful, but became futile in their thoughts, and their foolish hearts were darkened.”

When we do not acknowledge God as God, glorify Him and give thanks, our thinking becomes futile and our hearts begin to lose the Light that His love so freely gives. In other words, gratitude is what helps us think clearly and respond with a healed heart.

So as I continued to grow, that season began to change as seasons always do. Change is necessary to take us to new levels. One level of glory must always yield to the next, but that means we must be pliable in God’s hands. When we remain pliable in a spirit of gratitude, what would have been a traumatic brokenness under our old perspective becomes only a reshaping, and what would have been suffering becomes merely a bend in the road on the great adventure God has planned for us.

Hi, my name is Amy Foster. On April 3, 2015, our family was in a car accident that changed our lives forever. My husband and six small children (8 1/2 yrs. old down to 9 mo.) came away from the accident with only minor cuts and bruises, but my neck was severely broken. I was in the hospital for almost three months before getting back home.

It was hard not picking up where I left off before the accident. For the first two years, I was bedridden due to stage 4 pressure wounds that I received during my hospital stay after the accident. My baby boy hardly wanted anything to do with me for those two years. He would cry when my family put him on my bed. I remember putting a tune to the Scripture verse: “In everything give thanks for this is the will of God in Christ Jesus concerning you.” That helped during some of the more difficult times. Three and a half years later, we’ve come a long way. Garrett (my baby) loves to sit on my lap now and runs to me for kisses.

With each day comes its challenges though, and I often have to pray to God for help and strength. Life is definitely different than it was before the accident. I can’t do the things I used to do. God knew all along my life would change. It is helpful to me knowing God is in control and accepting His plan for me, though I am still learning to give it all to Jesus. I am thankful to know God is forgiving and His mercies are new every morning.

Oftentimes, it is a daily or even moment by moment surrender. I have the choice each day to go down the road of negativity or cheerfulness, discouragement or thankfulness. I have six children watching me seeing the way I choose. They are depending on me. I may not be changing diapers, cleaning the house, making the meals like I used to, but I AM guiding our home and shaping their lives. I am thankful to have the chance to still be able to read to them, pray for them, teach them to read and write, play games with them, hug and kiss them, teach them to sew and bake, and so much more!

God requires of me to give thanks in all things. Even if and when I don’t feel like it, God wants me to be grateful.

It is amazing how much happier I am when my mind is on God’s goodness to me rather than on what I don’t have or how I am feeling. Thinking of others and doing something for them or praying for them is helpful. God has many verses in the Bible that mention our minds and thoughts. It is so important to keep my thoughts pure and clean and right.

Elisabeth Elliot said,“Refuse self pity. Refuse it absolutely. It is a deadly thing with the power to destroy you. Turn your thoughts to Christ who has already carried our griefs and sorrows.”

I find joy now in the things I used to take for granted: being able to feed myself, feeling the sunshine on my face, warm blankets, not having to stay in bed all day, being able to see, read, and write. I am so blessed to be home with my children, watching them grow. I have a wonderful husband who loves and cares for me. I have family and friends who pray for me. God has been so good to me! I pray that I will please God, so one day He will say, “Well done!” We may not understand it all right now, but in heaven it will be worth it all!

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Read more thoughts on Thankfulness…

Alicia Reagan…Thankfulness In Suffering

It is the season of Thanksgiving…a season that should never stop in our hearts, but is especially celebrated right now! While we work our way towards Thanksgiving, I want to  write on being thankful…especially when you are suffering in life.

Suffering is universal. No one escapes it. We suffer differently, but we all have suffered, are suffering or will suffer. Suffering is hard. Real hard. It can get real ugly. Especially if it doesn’t go away. When I get ill, I don’t like it but I am okay with it for a little while. I will take meds to get me through the worst symptoms knowing that in a week or so, I will be back to my old self. But what about when suffering isn’t going to go away?

How do you “get over” a loved one dying? How do you “get over” your spouses continued unfaithfulness? How do you “get over” your own painful consequences to sin in your life? How do you “get over” a chronic health condition that constantly changes? You don’t get over these kind of things. They are now a part of your daily life.

As we are in this season of thankfulness, I am often reminded in my suffering of this verse: “In every thing give thanks: for this is the will of God in Christ Jesus concerning you.” This is SO hard!!! I don’t FEEL thankful for suffering. I don’t want it. I want to be rid of it. When I think of my suffering being so very daily and never going away, it can consume you and destroy you. But…God didn’t ask me to feel thankful. He told me to BE thankful. Not only did He tell me to be thankful, He told me to be thankful in EVERY thing. What?!!! Then God takes it even farther. He tells us that this thankfulness in every thing is the very will of God for my life.

God’s will…for me today…is to be thankful in every. single. thing. Tomorrow, I do it all again. THIS has me in God’s will.

So how do we do it? How in the world can we choose to be thankful?

1. It IS a choice. Do NOT wait on your emotions to “feel” thankful. Over time, in some cases, you do feel thankfulness. But many times, I cannot say “I am thankful for….” but I can say “Thank you Lord for this in my life because I know You are allowing it for my good.” The longer I live and grow in my walk with the Lord, the more I realize how very much He pulls us away from emotion and to intentional choice.
2. It CAN BE a habit. Over time, this will become a good discipline in your life. If you will just obey this verse, when you suffer, you not only start listing the blessings in your life, but you already say thank you to God for allowing this in your life.
3. It WILL BE rewarding. The point is not so we will eventually like suffering. That will never happen! The point is so that we will learn to obediently live in a thankful heart to God for every single thing in our life because He has already ordained it to be so…for His purposes and glory through our lives.

I will have two guests in the next week who are going to share their stories and God’s goodness:

• Amy Foster – a precious wife and momma that was in a car accident that left her with a serious spinal cord injury.
• Holly Payne – a sweet friend who has a condition called Spinal Muscular Atrophy that doctors said should have killed her before the age of 3.

Both of these godly women have chosen to be thankful in their lives and I think it will be a blessing to you all, as it has been to me, to read their stories. I can’t wait for you all to meet them. So stay tuned!

This year has been a year of learning for me. Obviously, when I became paralyzed my whole world was turned upside down as Every. Single. Part of my life was affected. But…over time, you find a new normal…until your spinal cord injury plays a trick on you and decides to add more changes! That has been what I have been dealing with for over a year now with less function, and much more pain and spasticity. I have already written about this several times over the past year and I am not going to again, but what I want to write about is how to handle it when your world squeezes you just a little tighter…and you feel like you can’t quite catch your breath. When your normal…isn’t normal anymore. Maybe your health is declining…or you are just at a new level you weren’t at before. Regardless, I think you will know what I mean.

I have multiple friends with disabilities, and at least in the spinal cord injury world, I have learned this past year that changes ARE part of the norm. Knowing what I was able to do, and now knowing how I struggle to do them, and feeling held hostage by your body has been SO frustrating!! So what do you do about it?

One solution:

Curl up in bed. Cry. Get angry. Quit Trying. Be done with it all.

Although I have had the times of being in bed angry and crying, I have never been ready to just quit trying. I am always afraid of getting to that point and I refuse to let my mind go there. That solution just won’t work, and since ALL humans – disabled or not – have absolute value, this isn’t a good solution for any of us.

I have asked some of my friends to join me in a few helps I would love to give for when your world starts feeling smaller. Here is what we recommend:

1. Know Jesus.

When you know the Lord, and you truly believe that He has planned and ordered our days, then whatever happens in your life, you can cling to the fact that this IS God’s plan right now. This doesn’t mean you like it, and it doesn’t mean you understand it, but it does mean that you can know it is truth and that you can have faith that somehow these things are working for your good. It gives you a hope that your life story has a greater purpose and the lie in your head that is telling you that you have little value is just that – a lie. You can trust that your story is valuable in the Kingdom story that God is telling through your life.

2. Keep your mind busy.

I remember in the early days when I was still bed-bound and suffering from terrible panic attacks, I would truly think something was wrong and I was dying. The problem was that I really couldn’t nail down symptoms to even go to the ER. I just knew I was dying!! I wasn’t dying but that was what I thought. Those attacks were so debilitating and discouraging on top of everything else. I asked my hubby to buy me some old funny sitcoms so I could keep my mind engaged. I was really too ill then to read much of anything or to do any type of work on my computer. So, having something to just watch and entertain me helped me. I also believe in Scripture and there is a verse in Proverbs that said a merry heart helps like medicine. I took that literally and asked for comedy. Dick Van Dyke, I Love Lucy, The Real McCoy’s, and Just For Gags on YouTube became my daily routines. And it totally helped!! Laughing feels good, and not having to think about how bad you feel feels really good! So, that became part of my prescription for health! I still absolutely love to laugh and on my worst days, I try to find something that makes me chuckle. Having six kids in this home sure help with that!

3. Take care of yourself with no guilt….

I have really struggled with feeling selfish with this one! Because of my health struggles, I felt STRONGLY to turn down almost every speaking engagement last year. I only accepted two – one in Florida because our family likes to take vacation time there and I can work it around a meeting, and one that was only a couple hours away here in South Caroline. I knew that I had to take this year and figure some things out for me. I felt strongly that God wanted me to do that and so I had no guilt about that.

However, other decisions left me feeling some guilt:

• I started taking some meds (I have tried for 9 years to stay off all meds). I felt like I was being defeated and felt guilty, but it has truly been a blessing for me to get rest at night. My neuro system had to be made to calm down at night and not spasm all night long keeping me awake. It has been wonderful finally getting to rest!
• I started using a power chair…a lot…especially outside or for longer days outside. I felt guilty that I was being lazy, but I just do NOT have the strength to maneuver independently off of smooth level floors much anymore. So, I just wouldn’t go. The power chair has really opened up more independence for me to get out and around by myself and not be absolutely exhausted and in bed the entire next day. I just want to go around singing “I’ve got the power…” when I am out now! 🙂
• I applied for a waiver to get attendant care at home to help me. This one was HUGE! I was SO emotional about it and once again, felt like I was losing SO much independence. But…I realized that I could be more of a help to my family to GET help to have things get done around here, then to try to do it all and be no count, or things not get done because I felt so guilty asking my family for all the extra help. The waiver gives me 40 hours a week for help. I hire my own attendants and they help me from whatever I need help with personally to helping with cooking, cleaning, shopping, exercising, etc. It has been WONDERFUL! My friend, Kattie, helps me and so does my daughter Briley. They get paid to help me. Knowing that they are getting paid keeps me from feeling guilty for asking for help. It has been such a huge blessing to me.
• Good doctors and Physical Therapy. The only guilt I have here is that there have been a LOT of appointments and it makes me feel like a hypochondriac! However, I cannot stress enough how important it is to be proactive with your health. Especially when you really can’t feel most of your body, you have got to stay on top of things. I have been blessed with a new neurologist and neurological PT’s who have been working with me all this year to help eliminate any more decline and to try to help get my quality of life better. It has been a slow process, but it is working. I am not being promised any improvements, but they feel confident that if we are proactive and cautious, we have slowed this down.
• Rest. Ugh. I HATE holding still, but my body demands down time. This has been one of the hardest things on me honestly. I feel SO useless when I have to rest! But, I know budgeting what I have to work with is important. One doctor told me that I have to pretend I have $200 in my account for today and I have to be wise how to spend that day. So, if I have a busy evening, I MUST rest in the day. If I have a busy day, I MUST rest that evening. If I have a busy day ALL day, I MUST have the entire next day or two to chill. I watch people…and remember…how I used to go and go and go and I feel SO lazy!! But…I just can’t. No more than I can move my legs on my own anymore, I also cannot go. I have to rest. 

Do you see a recurring word here? GUILT!! But you have to let that guilt go. We have quality AND quantity of life. To have both, we must let guilt go for what we need to do. I assure you of this: PEOPLE DO NOT UNDERSTAND, AND WILL SAY THINGS. It will hurt your feelings and make you feel like a dog…only if you give them that power. I have given them that power, and it still didn’t change anything. So, I decided a better way was to just say in my head “until you have a spinal cord injury and deal with what I do (and I hope you never do) then you have no clue about my life and therefore what you say doesn’t matter a bit to me.” I can’t tell you how freeing that was!! Now, if people say something, I just smile inside my head and go on with my life. I really don’t care and I mean that!

4. But don’t lose sight of others….

Having to focus and take care of yourself so much…on a daily basis…truly can lead to selfishness. So, make sure to combat that, you find a way to be helpful to others. I firmly believe that we find purpose and value in serving others. It IS more blessed to give than to receive. Find a way to give back! In this day of online connections, there really is NO excuse not to find a way to give back. 

Are you stuck in bed or inside a lot? Can you find an online community for your specific disability and just decide to be an encourager in there? Can you volunteer to make phone calls for your church or a non-profit? Can you pray with and for others? Can you do online research work? Can you do graphic design for others? Are you able to get out and about? Can you volunteer? Can you serve in your church? Can you just be the community smiler? Do you know how many people just need a smile and a kind word? 

I have a couple of girlfriends who also are struggling with health difficulties. They have spinal cord injuries and they are strong Christian women. We have a private messenger thread where we stay in contact with one another, we pray for one another, we check on one another, and we encourage one another with truths from God’s Word. This is one way we can serve one another and gives us encouragement and purpose in our pain. And, we are each reaching out in our own ways to serve and give back to those around us in whatever capacity we can.

Find something to reach out and help others. I promise you that this helps.

In conclusion, they say when God closes a door He opens a window. I know that many times, we can feel that when that door closes, we are stuck in a tiny room without oxygen. But…we must remember to go open the window and stick our heads out in the fresh air. We may still be in the room, but there is still a big wide world out there.

Go open your window and take a big deep breath. It’s okay.

The MRI. I am getting some questions why I needed the MRI so I thought I would just post an update.

My spinal cord was injured because a virus attacked it. The virus caused swelling and the swelling damaged the spinal cord. My spinal cord was damaged at the C5-C7 vertebrae level. It was not severed by trauma like a bone or a bullet. It was damaged by swelling. Therefore, I am an incomplete injury. Some signals from my brain still get through to my body parts…some are great, some are weak, and some are extremely scrambled and confused.

I have always had a deficit in my arm strength (mostly my triceps) and would only have more trouble in my fingers when I was really tired, but overall I had good movement. If I had been a complete injury, I would have had very limited arm movement and no hand function at all. So, from my shoulders down, my muscles were weaker, but I was totally able to overcompensate weaker muscles with my stronger ones.

For 9 years now, I have tried extremely hard to not only be independent, but to learn every possible wheelchair skill I could. I have taken much pride in “doing it all by myself.” I wanted to work hard to be healthy and strong for my long-term health! I have always enjoyed being active and have enjoyed finding new activities from my wheelchair.

But…it is possible I just may have overdone it.

The past year…really well over a year now…I have had a lot of issues. My pain levels have been much higher, my spasms have been much more intense and more often, my fatigue was overwhelming and I have had much more trouble with my hands and arms…especially my left side. I am able to move but I am not able to do much with any sort of weight or resistance. I was doing adapted cross-fit at one time, I loved weight lifting…and honestly, I really struggle with just light therapy bands right now and even getting 3 pound weights over my head. It has been really frustrating!!

I am thankful for a good neurologist, a physical therapist who has expertise in seating systems, a neurological physical therapist who is working with me every week, and a personal friend who was a spinal cord rehab doctor before he retired. Together, everyone has come to the same conclusion…they think that I have overused my weaker muscles all these years and they have just sputtered out from being overworked. Bummer. I am still an incomplete. I am just much less incomplete. I still have much function to be thankful for!

In rare cases (about 2%), people with spinal cord injuries can develop a cyst or syrinx in their spinal cords in the area of the original damage that can cause loss of function over time. So, my neurologist just wants to make sure that is not what is going on and that is the reason for the MRI’s on my cervical and thoracic spine. He does not expect to find any problems, but to be safe, he wants to rule out the cyst or syrinx.

Things that have helped me function better lately….

• Hasci Waiver. I swallowed my pride and applied for the HASCI (head and spinal cord injury) waiver. It gets me help in my home. My hubby and children have been absolutely wonderful for all these years, but I have needed much more help this past year and I don’t want that falling on them. Jimmy is a busy pastor and my kids are growing up and moving forward in their own lives. They love and adore me and would do anything in the world for me and never once have any of them every complained. So, this is something I can do FOR them! My friend Kattie Hallman, who has always been willing to help me in so many things already, asked for the job to be my attendant and I gladly agreed! Also, my daughter Briley is over 18 and is allowed to also be paid to be my attendant. Between Kattie and Briley, I get 40 hours a week of help. Kattie has been a huge help to continue to help me with therapy both at the house and in the pool, and she is a working machine with anything I need help with here at the house. Briley has been so wonderful to help with evening suppers and anything I need during the daytime or evenings. They both share in helping with my daily stretches (which take 30 minutes! Ugh!), but that is SO helpful to my spasms the rest of the day. I had just lost heart to ask my Jimmy to do this every day and take so much of his time. He is so happy to do it, but I just couldn’t do it anymore. So, it has been very helpful to be stretched again daily.

• Baclofen. This muscle relaxant has helped me tremendously! I have not been on any meds long-term since I have been paralyzed. I was told early on by my neuro at the time to try to stay off all you can and I took that seriously! But, my spasms at night had gotten so intense, I was getting very little sleep and the pain the next day was keeping me in the bed more than out of it. So all of my medical team strongly recommended that I start a nightly dose to see if it would help. It has most definitely helped! I still have spasms, but they are not so violent and I am most certainly getting sleep now! I always wake up multiple times in the night and have to re-position because of pain, but I am able to go right back to sleep and that has been such a blessing.

• A power chair. The seating specialist barely even allowed me to get a manual wheelchair. She was very concerned with the overuse that had already happened and I am not pushing with good dynamics anymore and so she gave me a one year probation to try a new manual chair. To this day, I am still only able to be in my manual chair about 4 hours without intense pain and discomfort which triggers spasms and the cycle just gets worse. So, I have to get out of my chair. A power chair was given to me and it has been wonderful. I will confess right now that it was once again a pride thing for me. Why? I have no clue. I do think in the disability world, there is a little bit of old school wheelchair philosophy that science and research has now proven wrong. The idea is that if you are able to use a manual chair at all…even if your body dynamics are awful…that you should do it. The old school thought…that I certainly bought into from peer mentors…was that if you don’t use what you have, you will lose it. There is truth that power chairs take less effort…no doubt about it! But…you don’t have to throw the baby out with the bath water. I use a manual chair almost every day in my home. It doesn’t take a lot of effort to roll my chair on my smooth wood floors and I certainly don’t live in a mansion so I am not rolling miles a day in my home. However, let that flooring be carpet, or have a grade to it at all, or be a rougher uneven surface and that is another story altogether! I can’t keep my balance, it takes all my weaker upper body muscles to even push myself, and I can have some strength for a few minutes and then I totally tap out and I just can’t do it! The muscles won’t work. And in just a couple hours, I am SO exhausted I literally cannot even keep my eyes open, my entire body is burning and lightning bolts are jolting through me making my body do crazy things. So instead of getting exercise and movement in my manual chair, instead I am in it shorter times, which means I am in bed or not out and about enjoying my life. But in the power chair, I can go where I want with very little effort. I can tilt it back taking pressure off my backside which eases my pain. I can lift my legs up and keep swelling down and stretch out my legs when they start acting up. All of these things have enabled me to be out and about and enjoy my days so much better! It truly has helped my fatigue tremendously and my pain which has also helped calm my spasms down during the day. To me…pride can hit the road because the end result has been well worth it.

• Physical Therapy. PT has brought back some emotions I haven’t felt in 9 years! When you are in PT, they isolate muscles and work on them. I don’t see every individual muscle in my upper body and how they work. I just know they aren’t working right. But when they isolate certain muscles and I am not allowed to overcompensate with other muscles, it really amplifies what I cannot do and that has been pretty emotional to me. I haven’t felt depressed. It is more like a sick feeling in the pit of my stomach that is quickly followed by a sense of anxiety wondering if I will get any of this back or not. But…it has been good to get a good refresher, learn how to do some things a new way for where I am, and to be able to consistently work on things at home that can only help and not hurt me. They keep telling me that it is not the big quantity workouts that I need. It is the small and precise quality workouts that work specific things. The athlete in me has a very hard time wrapping my brain around this, and many times I feel like I am doing piddly squat in my therapy routines, but I am going to trust the professionals and just obey.

In conclusion, no matter what, I am going to be okay. When I start to get gripped with fear of my future, I remind myself of the truth of God’s Word and how He already has my days planned and that He doesn’t allow anything to come into my life that He has not carefully decided would be for my good. I can trust Him.

Sometimes, the struggles of a disability can be pretty lonely and it truly encourages my heart to be prayed for and so I truly appreciate your prayers for me and your love and care. It truly helps to know that my friends care enough to pray for me. Thank you!!

An email was written to my husband this week asking for advice for someone in his church who had asked for help. This person is disabled and is trying to raise her children. She is finding it very difficult to manage her children because of her disability. I certainly understand her plight!

Can we rewind about 9 years? I was newly paralyzed. I couldn’t even take care of myself, let alone take care of my 6 children who ranged from newborn to 10 years old. I will never forget the day my sweet little Macey, who was barely 2 years old, was being very naughty. I told her to come to me and so she ran the other way!! I wheeled myself to find her and she had squeezed her little body between the wall and the refrigerator. I could NOT reach her!! My arms weren’t long enough and I couldn’t stand or get in any other position to reach her. I thought right then….”THIS is going to get interesting!”

My family about 4 months after I was paralyzed in 2009

One thing that was extremely emotional for me in the early days, was that I just wasn’t going to be able to be a good Mom anymore. A good talking to by my hubby one day got my head on straight. He told me that the greatest thing a mother can give their children is love and that my disability did not break my ability to love. He was right. Once I got my head around the fact that I could still be a good Momma to my crew, I decided that no one else was ever going to take my place – not my hubby, not family members, not church family, and not caregivers. I was their Momma and they needed me…disability or not. All of these people help me, but no one replaces me.

Since we were written for advice, I thought I would just make it a blog post in case there are any others out there who may want my two cents about it.

Some Philosophy…

• Your Word Must Have Final Authority

When you are limited physically, your word has got to carry power. I would have this vision in my head of rolling along a sidewalk, unable to hold my child’s hand (because I need my hands to wheel myself) and my child would break away from me and run towards the street. In my vision, I could see myself rolling as quickly as I could to catch them, but then what? How could I steer myself or stop myself or control my chair with my hands if I was grabbing at my child? How could I stop my child and not myself? How could I grab my child and not fall out of my wheelchair? ALL these horrifying visions made me determined that if I told my child to stop, that they would obey me immediately.

I took that vision to heart and I would seriously sit on my front porch with my younger ones and tell them not to get off the porch. I would sit near the porch entrance and pretend I was reading a magazine. If they got one little toe off that porch, I would sternly correct them on the spot. Again, I would pretend I wasn’t watching, and they would test me to see what I would do. Every single time their disobedience was dealt with immediately. There was not an ounce of inconsistency. I needed them to know that when Momma spoke, she meant it. I needed to know that when I spoke, they would be safe.

My word had to have absolute power because my body was no longer capable of rescuing them.

I don’t think I can stress this first point enough. Thankfully, we have always believed in being obeyed promptly by our children and so I was already of that persuasion. However, it is REALLY easy to get lazy and inconsistent with children because you are outnumbered and it gets really weary day after day to be a consistent disciplinarian.

My disability no longer awarded me the luxury of being lax in the discipline of my children. Truly, their life could have easily depended on my consistency in this area and I very much took that to heart.

• Enjoy Your Children

You may be asking what enjoying your children has to do with discipline? EVERYTHING!

I would definitely say that I am a firm disciplinarian. I don’t take much lip, disrespect or attitude from my children. I am Mom and I will be respected. However, I have seen SO many firm disciplinarians that seem to truly dislike their children. They act like their kids get on their last nerve, they are hateful and grumpy, they are forever pointing out all of their faults and talking to other people about them, they can’t wait till they “finally go back to school”, and they discipline their children in front of everyone! It always hurts my heart when I see these things.

I have also heard people say that you cannot be friends with your children. They say you must be parents and not friends. If they mean to never be a voice of authority, I guess I can see what they mean, but I wish they would just clarify that instead of saying you cannot be friends with them.

My children are my dearest friends. They make me laugh. They help me. They love me. They forgive me…oh how often they forgive me! They worry over me. They fuss over me. They are SO funny! They are kind. They are compassionate. They are smart. They are witty. They love Jesus. They compel me to be a better person.Why in the world would I NOT want to be their friend? They are amazing individuals and I am SO blessed to be able to not only be their friend, but to call them my children!

If I ONLY ever wear the “I am the Mom – your boss, critic, guide, disciplinarian” hat, my children would have a very hard time not resenting me or being bitter towards me. Who likes people who only correct you?

One of the blessings of my disability is that because I use a wheelchair all the time, my lap has been available most of the time. Especially when my children were little, it was always available for a quick sit, or cuddle or hug. Another thing that my disability has brought me, is that I have times when I must rest. Those rest times have proved to be wonderful times to watch cartoons, read stories, lay and giggle together, or even cuddle up and take a nap. I learned to embrace those opportunities with my children instead of getting frustrated at my inability to be up and getting things done.

The point of this point, is that many times, the frustrating parts of our disabilities can often be the very thing that can give us more time to bond and love on our children which blooms into precious friendships.

My children are now between the ages of 8-18 and I promise you that those years of much time spent together because of my LACK of ability, have been so rewarding. They are growing into fine children and I am crazy about them. I am pretty sure they are about me too.

• Quality and Quantity

I mentioned this a little above, but want to make sure it isn’t missed. I worried early on at the lack of physical things I wouldn’t be able to do with my family anymore. We LOVED hiking and state parks and creeks and trails and playgrounds and historical homes. All of those things are very much NOT wheelchair accessible. I loved everything active – volleyball, bike riding, basketball, trampolines, tree climbing….stuff I thought was over forever.

How would I ever be able to be involved with those things?

Have you ever just sat and watched children play? Have you every counted how many times they say “Hey Mom!!! Watch this!!” I realized that my kids needed my presence more than they needed my involvement in that activity. They needed me to be cheering them on, asking them to do it again, challenging them to something just a little bit “riskier” or acting like I was scared to death. They needed my quality attention and they needed my quantity of attention. That is what they needed MORE than they needed my actual involvement.

Don’t get me wrong, there have been plenty of things that I have tried because I wanted to try to be involved, and there have been times I would have rather been home in bed, but they needed my attention. There have been times when I wanted to try something, and they begged me NOT to, and there have been new things we have learned to love to do as a family that we never did before. There are some things we truly cannot do much of anymore because I can’t be out in the heat or cold that long, or because there is physically no way to get my wheelchair to certain locations. There are some things I BEG them to please go and do without me and I will wait (like to hike on down to that waterfall), and there are other times they all refuse to go and do unless I can do it with them.

The point? Our kids need our presence and plenty of it. Our disability does NOT stop that and shame on us if we let it.

Practical Tips…

Now that the philosophy is behind us, what are some practical tips? I am a full-time wheelchair user so my tips may look different from those with different disabilities.

• Keeping Them Safe With You

Help Push You

With my little ones, I used to ask them to “help push Mommy” to keep them hanging on to my wheelchair without them always realizing they were staying with me. Children LOVE pushing wheelchairs, and my kids have always had no issue staying with me when they are “pushing Mommy.” Sneaky right? Having said that, I always had someone else with me (other adult or older sibling) when out in dangerous areas like parking lots or near roads. I never wanted to risk their chance of disobedience. But…I also didn’t want them to know I had that backup because I wanted MY word to stay with me to have weight.

Use A Child Safety Leash

In safer places, like a mall or indoor area,  I had a child leash that I would put on them and attach it to my chair so they could feel they were a little more free but I knew they wouldn’t get away from me. It enabled me to use my hands to wheel myself, and keep them in my sight.

Use A Therapy Belt

The little ones also rode on my lap quite often and I would use a therapy belt to help strap them to me. This kept them from sliding off of my lap while going down ramps or over bumps and it also kept them sort of restrained from constantly fidgeting away from me. A power chair was easier to keep them on my lap than a manual chair as I could keep one arm around them in a power chair. If you have limited arm strength, then a belt helps keep them in place.

• Creative Discipline

Do The Opposite

I always ask myself “what are they trying to accomplish by not being good right now” and then I would try to find ways to do just the opposite so that they would never gain or be rewarded by that negative behavior. For example, if they were not wanting to stay with me when I said, they now had to sit on my lap and could not get up at all. If they were asked to do a simple chore and had a bad attitude about it, they now had to do two chores. If they are argumentative and can’t get along with anyone when asked to, they can now go to their room and be alone. If they can’t play well together, they can now just take a nap. If they break something that belonged to someone because they were mad, they can help do chores for that person to pay them back. See the idea? Instead of getting what they were trying to accomplish, they got just the opposite. This takes some creativity sometimes. Of course, this doesn’t always work, but for the most part, it has been pretty effective.

Take Away Their Favorite

Whether spanking is your thing or not (not abuse, but a spanking), not everything needs a spanking. We do believe spanking has its place, but we think it ought to be for the most serious offences of all and used very wisely and calmly and not when angry. We refuse to bully our children and many times spanking is nothing more than an adult bullying a child in anger. I think that is disgusting. Spanking should only be a part of loving discipline for the times when every other discipline is not working. That is my opinion and this is my blog so….:)

I learned that many times, taking away something they loved hurt worse than a spanking. If they loved TV time, they lost it. If they loved video games, they didn’t get to play for a time I chose. If they loved their phones and texting their friends, they lost that. If they wanted to go somewhere, they stayed home. If they cried over candy, they didn’t get anything sweet that day. If they were hard to get along with all day, they went to bed early before anyone else. Actually, there have been times our kids have asked if we would PLEASE give them a spanking instead of one of these things!

• Teach!

I am convinced that information + application = transformation. I think the book of Proverbs in the Bible (which is the book of wisdom) is saying this when it often talks about knowledge and understanding equaling wisdom. I don’t want my children to do just DO what I say (although prompt obedience is important). I want them to also understand why I am saying it so they can apply that to their hearts. This will help them their whole lives and not just that moment.

Now, my children will tell you that I talk WAY too much (and I know I do); but I would rather be guilty of that than just barking orders at them “because I said so.” My friend, Brian, who is also paralyzed told me that he believes that the less we are able to do physically, the more we need to teach. I think he is right.

Teach through positive things our children do

“I LOVE the way you took time to help with your little brother. Did you know you are going to make a great dad some day being patient like that?”

Teach through negative things our children do

“How would it make you feel if your friend didn’t want to play with you? Would that make you happy or sad? Isn’t the golden rule to treat others like we want to be treated? Do you want to make your friend sad? How would Jesus treat your friend right now?”

Teach through their heart-breaks

“I know you are hurting. It hurts me to see you hurt. I can’t take your pain, but I am here for you and will always be here for you no matter how old you will ever be! It is wonderful and very important that you do right – even when you don’t feel like it.”

Teach through their joys

“I am SO proud of you!! You have done a great job! God has given you such a gift and talent to accomplish that so let’s thank Him for using you to bring Him glory.”

Teach to ask forgiveness 

“Kids, I am trying to be a good Momma, but I am learning how to do that just like you are learning how to be good kids. I mess up and so do you. Will you forgive me for messing up today when I __________________________?” We don’t say “I’m sorry.” We say “Will you forgive me?” This is biblical. We must lead by example. Trust me, they know we aren’t perfect and mess up so we might as well admit it to them and ask them to forgive us.

Teach confidence

Having a disability brings SO many insecurities and parenting is just one more. Children do not see or understand our insecurities. They won’t even know we have them unless we tell them. If we become a victim or martyr about everything, they will too. If we think less of ourselves, they will think less of themselves. If we talk bad about our bodies and disabilities, they will look for all their flaws also. If we constantly say “I can’t”, just give it time and you will be hearing that from them all the time. If you use your disability as an excuse in life, they will find something to use as theirs.

Our children follow our lead. We must lead them to become responsible, independent, productive citizens in this world. Our disabilities are a platform to teach them that no matter what they face in this world, they can handle it with confidence and creativity.

In conclusion, parenting with a disability can feel overwhelming and impossible if you only think about it from the physical standpoint. But the physical side of parenting is so minimal compared to all the rest! My children are the only treasure I possess that I can take with me into eternity. You are the only Momma or Daddy that child has, and that is what you will always be to them. Be the best there is!

You’ve got this!

My family this past Christmas – 2017

Disabilities are so vast, I am not able to deal with all of them. I have a spinal cord injury and am paralyzed so I will deal with my particular view of mobility needs. I would LOVE it if you want to add your own ideas that are unique to your disability in the comments.

When I attended Roll On Capitol Hill in Washington D.C., one of the things we were working on was asking them not to do away with the funding for our specialized equipment. I asked one of my Congressman if he felt that all of the congressmen would be okay wearing size 8 shoes from Walmart. He assured me that would not work as they all wore different sizes. I told him that he made my point. We also are all different shapes and sizes and have different needs depending on our disabilities and a one-size-fits-all wheelchair will never work. He agreed.

When you talk about the mobility needs of a person who is paralyzed, it is easy to say, “Duh…they need a wheelchair to get around!” True! But what kind? A manual chair? A power chair? A manual chair with a power assist? A standing chair? A 4×4 all-terrain outdoor chair to hit the yard, sand and nature trails?  I would love to say YES to all of these!! But unless you are very rich, that won’t happen. 

Many times, your injury decides which chair you get. A high cervical injury will almost always use a power chair because of the lack of upper body movement. My injury is located at the C5-C7 level. If I was a complete injury, a manual chair would not even be possible. I have used a manual chair for 9 years and have had an older power assist for longer days and outdoor use. That power assist has not worked for over a year now and with some issues this past year that has caused a lot more pain, spasms and loss of strength in my already weaker upper body muscles, I am now using a power chair part of the time also.

Pros of a manual chair:

• Lightweight
• More versatile to travel around with others as you can throw them in any vehicle – even if you need help with the transfer into the car.
• Minimalist in design so easier to maneuver in tight spaces.
• Self-propelled
• Easier for others to help get you where you need to go in the presence of stairs, or no curb cuts.
• More affordable

Cons of a manual chair:

• All pushing is on you.
• Will need help pushing on steep areas, over rough terrain, or when you are too tired.
• Long days/distances are fatiguing.

Pros of power chair:

• No assistance is needed as the powerful motors can take you where you need to go.
• Energy and upper body wear is maintained.
• The customized ones tilt, recline, elevate your legs and lift the seat height to eye level which allow much more access to things in your home.
• Long days/distances are not as fatiguing.

Cons of power chair:

• They are very heavy and can only be transported in vehicles that have a lift or ramp to carry them.
• They have batteries that must remain charged so they take more maintenance.
• Much more expensive.

I have always used a manual chair which served me well for about 7 years. I have been fighting insurance for about 3 years to get a new manual wheelchair with a power assist added on to help me. A power assist is a power feature that is added to a manual chair. It has tried to bridge the gap by giving you all the pros of a manual and power chair without the cons. I just now finally got approved of all funding for my manual wheelchair (about $6,000) and the power assist ($5,000) and so now you know why I had to wait until insurance could pay! I could not afford that.

I was also just given a power chair that is not a jazzy style chair. I have been given the jazzy styles before and while I am very thankful for them, they are not custom to my body and are not made for people with spinal cord injuries. They are made for those who can walk but need help with a long day. This power chair is a high end custom chair that fits me perfectly! It has many features and it has felt SO good for my body!! I do always have this fear that the batteries will die while I am out and I will be stranded! But so far, it has been fine!

My opinion, is that everyone with a spinal cord injury should have BOTH a manual and a good fitting power chair.

Having the freedom to go with friends in their vehicles, or to go to places that aren’t accessible, or to keep up the exercise that your upper arms need (if you have the strength to propel yourself) is why you need a custom, lightweight manual chair. However, enjoying a long day out and not being so exhausted, or a rough day of pain when your chair can keep adjusting you without having to go to bed, or wanting to go out on rougher terrain that is very difficult in a manual chair, make a power chair a valuable piece of equipment.

There are SO many cool mobility products on the market and I love it when friends send me messages telling me about them. The reality, however, is they are very expensive and insurance won’t touch them. Insurance hardly ever pays for both a manual and a power chair!

When you are trying to decide to get a power or manual chair, there is much wisdom in a manual chair with a power assist…if you can get insurance to pay for the power assist. They don’t like paying for them. Vocational Rehab is paying for mine and insurance is paying for my chair. Because of my level of injury, I now need a power assist or I will have to use a power chair all the time, so Vocational Rehab paid for my power assist to help me be able to continue working. That may be an option you want to look into!

Some things that have helped me and that we are hoping will continue to help even more:

Ribgrips – very grippy handrims for my manual chair since my hand strength is not strong at all. I can just touch these rims with the front or back of my hands and they go. I will never be without them again! Big game changer for me! (if you want to order some for yourself, use code AR15 for a discount from me!)

New Smart Drive power assist – this has to be on my on my chair all the time now because my arms have gotten much weaker this past year. Hopefully, new seating and a new manual chair will help heal some of the overuse and damage. This power assist will be SO helpful for that wear and tear on my upper body.

Quickie QM 710  – I just can’t tell you what a help this power chair has been to me. This is a silly pic, but this was a LONG day at the park with my kids. By this time, we had been there for hours and my nerve pain was awful. While they played on the playland, I laid back to get all the weight off of my backside and legs. After about 15 minutes of laying back, my nerve pain was back to manageable again. I could have cried it was so wonderful! The other way would have been to be miserable while trying to let the kids play and then having to call them to go home so I could go to bed. This has brought me SO much more up time and freedom from my bed. It may seem little to some, but this has been HUGE for me!

Let me know your thoughts about your mobility equipment!