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!

As previously written in other posts, I have struggled this past year with my strength. Let me start with saying how thankful I am for the function that I have!! My spinal cord was injured at the C5-C7 level and I have SO many friends with that same level of injury that would LOVE to have the function that I have! So, I am not trying to sound pitiful so please don’t read it that way. However…for me, I can tell a major change in what I was able to do and how much effort it takes to do it now. I have lost some pretty major upper body strength and so it has affected my daily functions. Physically, I need some help in the mornings with my morning routines, and even more at bedtime because I am very tired. Home chores take me SO long and most of them I cannot even reach so my family takes care of most things. Since I am the manager of this home, and I need much more help physically from them, I want to make sure that they are not being dumped on too much.

So, how do you know if you need attendant help or not?

This is a very personal decision! Trust me on this…it has taken me a really long time to get to this place. Like, 9 years to be exact and I have been paralyzed 9 years. 🙂 I am just at a different place this past year with my needs being redefined, and I feel my family is also at a different place. I need more help with some of my care. My oldest daughter went to college, my son is working a job, my other son has become a hobby farmer and that will be extra time he will need. My life is very full and I love it, but it drains a lot of energy from me. So, I am personally at a new place and feel this is the time.

I have friends who need 100% physical care for dressing, bathrooming and showering and to be put in their chairs. Once in their chairs, they drive to work and work all day and then come home and have assistants to get them in bed. Others, have assistants who come to work with them and take care of their needs while there. Others only have assistants come in a couple times a week to help. It is very personal to your disability and needs. Only you know your needs.

Some questions to ask:

• Do you feel that things are piling up because you just don’t have the ability to keep it up? Is your house messy? Is your bedroom/personal area out of control? Does deep cleaning ever happen?
• Do the daily things that always need to happen (meal prep, light cleaning, personal hygiene or health care) get put off because it is so extremely difficult?
• Do you spend more time in bed because getting up and ready is so difficult?
• Do you eat well because meal prep is too difficult?
• Do you find yourself not ever wanting to leave home because of how hard it is to maneuver out in society alone?
• Do you have family members who are happy to help, or do you feel that you cannot ask them because they make you feel like a bother? (mine do not, but I have heard awful stories that really hurt my heart)
• Do you withhold asking for help simply because you don’t want to be a bother?
• If you plenty of money, do you feel you would hire someone to come help you?

If you answered yes to any of these, you probably need to think about trying to get some help! Depending on your disability, your income and your insurance, there should be something out there to help you find help. I live in SC and because I am on Medicaid (for the aged, blind or disabled), I was able to apply for the HASCI waiver. This is all new for me, but we are almost through the entire process and I just applied at the beginning of this year. Hopefully, I will have help within a couple more months!

If you have anything to add to this, please share in the comments for other readers!

Chronic. Intimidating word isn’t it? Whenever I hear that word it gives me a mental picture of someone curled up in a hospital bed dying! However, that isn’t always the case. Chronic means “persistently for a long time or constantly recurring.” For those with long-lasting health conditions that just do not go away, life can get very discouraging.

When I woke up paralyzed in 2009, unable to feel or move anything from my upper ribs down, my arms extremely heavy and fingers slow to respond, I had entered the world of a chronic health condition. Caused by a virus, the swelling around my spinal cord had permanently damaged it. This wasn’t going away.

Nine years later, I am still here and living life from a wheelchair. There are hundreds of small things that constantly pop up as secondary conditions to paralysis and each time they do, it is an opportunity for discouragement. However, I am happy. Life is precious to me. I am still on the journey and learning each day, but may I share some things I have learned to combat discouragement and offer some practical help?

Emotionally

• Cling to Jesus!

I know we say it, but really DO it! I have spent many a night in fear of the future, in horrific pain, crying and having a panic attack…and I just ask Jesus to please come and hold me. I tell Him I am a scared little girl and I need my Daddy to hold me. I just pray. Do you know that most of the time I fall asleep praying? I KNOW He has rocked me to sleep comforting His girl.

• Keep your eyes on the bigger picture!

When you are in the moment of discouragement, it hogs the lens of life. Everything looks dark and gloomy. But step back. Take in the whole picture. God has been faithful; He will be again! Don’t get sucked into the emotion of now. Keep an eye on the reality of our tomorrows.

• Look for the fingerprints of God all around you!

When I see the sky, I remember how big God is, and He is in control. When I hear birds sing, I remember that He cares for the sparrows and He cares for me. When my heart is moved watching others show compassion, I remember that God is full of compassion for me! Intentionally look for ways to let life and others encourage you! Don’t look for the huge things. Look at the million little things that go on every single day. It could be a smile, a song, a hug, a call or text, a cuddly animal…anything good! Notice them. Appreciate them. Together they become huge!

• Dwell on what you can do!

There are many losses that can come with long-term issues. Grieving those losses is a natural process, however, don’t wallow in them. Instead, make a list of what you can do, or even what you can learn to do. Find your new niche and do it well. Find a sense of accomplishment that makes you still feel like a productive citizen. We all need purpose in our lives to thrive. Discover it and dwell on that!

Physically

• Quit Worrying About What Others Think

This was hard for me and took me several years to get to this place. Unless others live in your body and know what you deal with daily, their opinion of what you should or should not do cannot have much weight. My husband knows me more than anyone, and he is also the first one who will tell me his feelings. Sometimes that has been to say no to others, or to go to bed. He has also been a voice that has told me to stop pouting and to go do something. Learn who these people are in your life and give your ear to those who truly know your situation. If they do not, then ignore them.

• Prioritize!!

Having just said that people don’t understand, I must also say that we DO understand. I know when I want to skip out on something and blame my disability vs. knowing that I really cannot do it without serious consequences to my health. Some of this has been learned easy, and some of this has been learned because I have failed to prioritize. A rule I live by: If I can do anything else today, then I can do this. Meaning….am I too tired to go to church on Sunday? Will I also be too tired to go out to lunch? If I am too tired for Sunday, what did I do Saturday that wore me out? Did I have to do that Saturday? Can I change my schedule to make Saturday’s lighter, so I can attend church on Sunday?

I have had to learn to look at my life a week at a time. I must look at what needs done that week, what is most important that week, and structure my week accordingly. It is imperative that I schedule rest days, or I end up in bed 2 weeks at a time. Sometimes, a certain activity will absolutely cause me a tremendous amount of pain later and the entire next day. I avoid those things like the plague if I know I need to do something the next day and need to be able to move around! Other things, with my disability, are invisible secondary things that I cannot control. If my stomach is messed up, I will need to stay home where my accessible restroom is…and quite frankly, clean clothes. To deal with all of that while out and about is extremely difficult and embarrassing. Although I may look great and feel great (except for my stomach being messed up), I cannot leave my home.

There is not a one-solution-for-all when dealing with prioritizing for your chronic health condition as we are all unique. But, I would dare to say the unifying statement for all of us is that it is VERY easy (because things are so much more difficult for us) to use our chronic health condition as an excuse when we really wouldn’t have to if we prioritized and were wiser with our planning.

• Challenge yourself each day

I was told early on, to push yourself to do one thing each day that you just do NOT feel like you can do. Some days, this is honestly just getting up, getting a shower and getting dressed! It takes all my strength and I am done. Thankfully, this is not every day! Other days, it is taking on a project with the kids, a day of work, or a day out with a friend. Regardless of what that one thing is, do it.

The hardest day of my week is always Sunday. I must get up early to get my body ready for the day, and I am already worn out by the time it is time to go to church! I am in my wheelchair chair for hours, which make my nerve pain very close to unbearable. I don’t always feel well, but so desire to be an encouragement to others! So, I play this little game with myself. I start with the hard and just try to do it. I know that at any time I truly can’t, I can stop. But I push myself to try…one little step at a time. These are my thoughts to myself:

1. Get up. Literally, get yourself set up in bed. Don’t lay. Sit up. That is a job just sitting up with my morning spasticity! (Transfer into wheelchair)
2. Once up, go to the bathroom (transfer to toilet) and prepare to shower (Transfer back to wheelchair from toilet, and transfer from wheelchair to shower chair)
3. Take a LONG hot shower and get your body feeling better for the day. (When done, transfer from shower chair back to wheelchair)
4. Get your clothes and get back on the bed to get dressed. (Transfer from wheelchair to bed) Don’t just lay there or you will go back to sleep from being so exhausted from all the transferring already! (We are now up to 6 transfers!)
5. Immediately start the process of getting all your clothes on (thankfully, most of the time with help from my sweet hubby who cannot stand to watch me struggle doing this) and I gladly let him because I am beat!
6. Transfer back into the wheelchair to go blow-dry my hair and put on my makeup.
7. Unlock my door and let my kiddos rush in to show me how handsome and pretty they are and just hang out. This always makes my morning brighter!
8. Time to go to church and roll out to my van where I transfer again from my wheelchair to my driver’s seat, drive to church, transfer from my driver’s seat to my wheelchair, and wheel in the church ready for breakfast and a smile!
9. Want the truth? If I did what I “felt” like doing, or what is easy, I would have never left my bed!

This is not to say my life is so bad. This is totally my normal and I don’t think of it like “this is so awful”, but it is my reality. I just know what is important that day, and one step at a time you do the next thing you don’t always feel like doing. But would you like to know another truth?

Even though Sunday is the hardest day of my week, it is also one of the happiest!

 I am encouraged by serving and doing valuable work, I am encouraged by seeing others who I know suffer and are so faithful, I am encouraged by the singing and the preaching and teaching of God’s Word, I am encouraged by the friendship and fellowship of my church family and I am encouraged that I was a part and didn’t miss out because it was “hard.”

A lesson for me is that many times what has been physically difficult has been extremely rewarding emotionally.

You must find the balance. There have been times I have had to say “no” to afternoon company because I need to go to my bed all afternoon and rest so that I can go to the evening service. There are times, like this past Sunday, that I wondered if I would even be able to go Sunday evening. I woke up with a red pressure area on my tailbone that can quickly turn into a pressure sore. I went to church that morning with both Jimmy and I worrying it might get worse at church. I came home and stayed in bed all afternoon and by evening, it was looking better. Had it not looked better, I would have stayed home in bed and not went to church. Not because I felt bad, but to keep me from getting a pressure sore that could keep me in bed for months at a time!

The point of all this is to say that you know what your hard is. You know what you need to do to challenge yourself a bit more. We are always easy on ourselves. It is called self-preservation! However, when a long-lasting condition is part of your life, you can’t always live on easy. You seek the necessary and find the strength to push yourself from easy to necessary. It is a challenge we need to have for ourselves.

I have belabored this point, but I feel it is SO important for those of us who have health challenges that do not go away. This is our life, so we must fight ourselves with this very point, or it is just too easy to become lazy which leads to discouragement which leads to depression and it is a vicious cycle that is hard to get out of.

Chronic health conditions do not have to mean that life is over. It doesn’t have to mean you are dying. It means that life is not as it once was, and you must think through many things to deal with your own issues.

For most things, the quality of our lives is dependent on the quality of our choices. Therefore, we must choose wisely to help us emotionally and physically.

If you have thoughts to add, please comment below and let me read them! I always love learning what has helped others.

Here we are again – March 12th. This day, 9 years ago, I woke up from a 24 hour nap…completely paralyzed. No feeling or movement from my upper ribs down, my arms SO heavy and stiff and slow to respond. One day you are fine, and one day you are not. Just that quick.

Today is my anniversary. The day our world turned upside down. The day I choose to remember and to reflect on where this journey has taken me. Will you join me?

I think if I could break down the last 9 years it would look like this…

Year 1 – I barely remember! Becoming paralyzed while 5 months pregnant, a million doctor visits, hospitalizations, the birth of my healthy baby boy, multiple complications, and finally the start of therapy. It is all a gigantic blur with lots of tears – sad and happy.

Year 2 – Therapy!!! Occupational therapy, physical therapy, repeat over and over and over. This year was driving 500 miles a week with 6 children, 10 and under, and a precious hubby who would sit for hours in a waiting room with all of those kids while I had therapy. I couldn’t drive so he drove me. We didn’t live near family and you don’t want to ask people to babysit your 6 children (including a baby) 3 times a week for multiple hours a day. We drove  1 1/2 hours to therapy, were there for 2-3 hours, and then 1 1/2 hours home. I would be so worn out, I would sleep all the way home and the rest of the day once home. I was absolutely exhausted. I worked so hard in therapy trying to get every ounce of return I could. It did help and I learned so many new things and much independence to take care of myself. But…not much physical return. Which led to year 3.

Year 3 – one of my toughest years. Therapy wasn’t seeing anymore progress in me so I was done. And I was ready to be done. I wanted my “normal” life back with my family. But that normal was a new normal and now it felt really permanent since the paralysis hadn’t gone away after all that therapy. Emotionally, this was my toughest year although I was feeling much better physically. I was learning how my new body worked and how to read the signs it gave me. I learned how to deal with many of my physical challenges and some of the fear and anxiety had really calmed down. I also finally got a very good neuroimmunologist  that year that completely understood my spinal cord injury that had been caused by Transverse Myelitis and he taught Jimmy and I so much. I think Year 3 was a year of emotional transition for me from the old “able-bodied” world to becoming a full-fledged member of the disabled community. It was a rough year of getting through that process, but I finally found peace in that future.

Years 4-7 – Life continued. We moved from OH to TN to SC as Jimmy’s pastorate changed. We made new friends, kids kept growing up, we had victories and failures in our marriage, our parenting, and our Christian lives. Emotionally, things were very good. I became much more involved in the disability community and made many dear friends. Opportunities to speak and share my testimony started pouring in and kept me very busy! Physically, I had a few things come up that is common with spinal cord injuries but nothing major. Life is beautiful and we love living it!!

Year 8 – Some physical changes. I have always dealt with spasms, nerve pain and fatigue, but this past year has been the worst. And…it has really affected my upper body strength. My spinal cord was damaged at the C5-C7 level which is in your neck. It was caused by swelling and so I am considered an incomplete injury – which means some nerve signals DO get through. They can go through really slow, or really confused, or really painful, or they might even actually work!! If I had a complete injury and NO signals went through, I would have very little use of my arms at all. So, I am very thankful for all I can do with my upper body! But, I can tell a big change in me this year. It has been very troubling for me as we have been trying to figure it all out! Is pain causing the fatigue and weakness? Is fatigue causing pain? Is something going on in my body I don’t know about (because I can’t feel normal) and that is causing spasms? Are the spasms causing the pain or is the pain causing the spasms? Am I fatigued because something is wrong or because I am not sleeping good because of spasms and pain? See how confusing it is?!!! It is also really frustrating!

This past year has had me in bed way too much just because I cannot physically sit up in my wheelchair for too long. I can’t even sit in my living room chair because the nerve pain and spasms just get so bad. The only thing that eases it up is laying down. Thankfully, it is not every day!! But it has put a major damper on longer activities because I just cannot tolerate it.

My arms (especially my left wrist and fingers) are much weaker. So…my activity level has been down because I just haven’t been able to lift weights or do too much active because it causes such pain and just flat out wears me out and I am shot to do anything else. So, that has been a bummer. When I try to push myself and power through it, I end up paying dearly for days. So, Year 8 has been a year of many doctors visits and tests trying to make sure things are okay and trying to figure out what is going on and what we can do about it.

I am happy to report that that this year ending has been much more encouraging than it began with a wheelchair seating evaluation about 3 months ago. We finally feel that we have some answers. Also, I have a dear friend who is a physiatrist (a spinal cord rehab doctor) and he has been working with me to figure some things out. Dr. Chris is retired now, but is a wealth of knowledge and has helped me sort through some problem solving and solutions to try and work through with my family doctor. My family doctor has also been so supportive to explore all avenues.

I already wrote about what the physical therapist/seating specialist felt was my issue with my current wheelchair no longer giving me the support I need and this leading to overuse of my already weaker upper body muscles. This was backed up by what Dr. Chris told me he thought was going on. I felt that with both of them telling me, they were probably on to something. (You can read the full post about it here)

So, this year, Jimmy and I decided that I needed to take this year off and just rest. He has been saying it, several dear friends had been telling me to slow it down, and then my own body. No speaking engagements (other than 1 in the fall when we have family vacation and 1 local) this year. I think I have said “no” more this year than I have in my entire life! It has been hard, but SO wonderful! Our church has been amazing to just jump in and take such a load off of me. It is VERY hard for me to not be in the middle of everything, but it has been SO nice to not have to. 

The other change is that I have also started using a power chair more if I am outside on rougher terrain or for a long day or evening. Dr. Chris and the therapist both strongly recommended it. I was gifted with a very nice power chair that reclines and has a tilt feature. This may sound silly, but when you are in SO much pain you cannot endure sitting one more second (I feel like I am sitting on a huge pile of sizzling hot shards of glass from my lower back all the way to the heels of my feet) and your only option is to get in your bed, the power chair has been wonderful!!! I just tilt back and get all the weight off of my backside for a little while and it is just like laying in bed! The pain starts easing up to where it is bearable again and I am good to go! NO BED!! It has really been quite amazing for me. And…I can tell it has made a HUGE difference which further proves what the seating specialist says. I do believe that when I get my new manual wheelchair with better supports to hold my body in place that it won’t take such a tremendous amount of work to get me from point A to B which in turn should help my pain, which I now think causes my spasms to get worse,which makes sleeping very hard, which exhausts me. It has been a vicious cycle this past year but I truly feel there is a light at the end of the tunnel!!

So, to Year 9, I want to say….

• The first year of this ride, I didn’t think I would even live to see this year, so I am thrilled I did!
• I am okay with this being 9 years. It’s such a wonderful journey – even through the rough times. Life is a precious gift!
• You and I are going to make it just fine, Year 9, if the Lord wills.

Thank you, dear readers, for following my journey with me. Thank you for your friendship and support. Thank you, most of all, for your prayers for me and my family!

When I was first paralyzed, we lived in Ohio. The winters there were long and cold. We didn’t get huge amounts of snow at a time, but many little ones that just seemed to keep the air wet and the ground a frozen sludgy mess. I used to not mind winter at all. I enjoyed the slower pace, and bundling up with the kids to go play.

Until my spinal cord injury…

The cold just isn’t the same anymore. At all. It is absolutely unbearable and it isn’t just me. It is very common within the spinal cord injury community. So, what’s the big deal?

Here is a brief description of why the cold is not only miserable for us, but even dangerous:

“Thermoregulation is impaired with spinal cord injury, resulting in poikilothermism (adjustment of the body temperature to the environmental temperature) because the peripheral temperature sensations cannot reach the hypothalamus, which controls temperature. Additionally, the ability to sweat or shiver to control temperature is impaired below the level of injury. The higher the injury, the greater the problem with thermoregulation. Temperature must be monitored carefully and the environment adjusted as needed. Subnormal temperatures and hypothermia (<35 C/95 F) are common. Warming blankets may be necessary to maintain adequate temperature but heavy covers should be avoided. If fever occurs, cooling blankets may be necessary. Overexposing the body, such as during bathing, should be avoided.”

If you scroll to the bottom of this post you can see a few sources I have linked to and you can read a lot of good info. But I want to keep it simple here.

Simply…it is not that we don’t like the cold. It is that our bodies literally cannot help us with getting too cold or too hot anymore.

When I get cold, my nerve pain goes through the roof. My spasms and spasticity get really bad and my body gets hypersensitive. Meaning, if you touch or move my legs wrong, you will probably get kicked and I have zero control over that. My spasticity makes my body feel like I am wrapped in very tight rubber bands from my shoulders down and makes moving extremely hard and very painful. I lose all fine motor skills.

I. Am. Miserable! Sunday morning, it was very cold here. I only left the house to go to church! Just from the that, it took me until 4:00 p.m. that afternoon to get warm! Just in time to go back out for our evening church service at 7:00! 🙂 I don’t like getting cold.

Here are some tips that we do in our family to try to help me from getting too cold. I am also providing links so you can see what I am talking about!

Inside:

• Electric Blanket. This is my very favorite “warmth” tool. It is large enough to wrap my body up like a cocoon, but small enough to handle and not get stuck in.        Sunbeam Fleece Heated Throw, Assorted Colors and Patterns
• Layered Clothing. Because you can overheat (even in the winter with all the trying to stay warm), it is best to dress in layers. Multiple thinner layers are much better indoors where you can add to or take away as needed to help keep your body temperature in the comfortable zone.
• Thermostat Settings. In my dream world, my house would always be about 75 degrees. But, I live with my family and I am very outvoted! However, we do have to keep our thermostat on 70 degrees. That is the absolute coolest I can stand in my own home without feeling very bad. And even at that, I ALWAYS am sitting underneath a blanket – summer and winter. It may cost a little more in electricity, but keeping home temps bearable are very important.
• Space Heater. I keep a space heater in my bedroom on my side of the bed. My hubby is hot blooded and many times needs the overhead fan on to sleep. That air hits my body like knives so I keep the blankets over my nose and a space heater in my face!  Lasko CD09250 Ceramic Heater with Adjustable Thermostat Tabletop Or Under-Desk, Black
• Fuzzy socks/ Furry slippers. During the day, I wear warm fuzzy socks or furry slippers all the time. I rarely wear shoes if I am going to be home all day and I find the fuzzy socks provide more padding than regular socks to help not get pressure sores. Of course, they are both also warm which helps keep my feet warmer. (Make sure to buy at least a size larger to accommodate for the extra fur and for feet swelling throughout the day). Cozy Niche HomeIdeas Women’s Faux Fur Lined Suede Comfort House Slippers, Anti-Slip Autumn Winter Indoor/Outdoor Moccasin Shoes (5-6 B(M) US, Brown)
• Hot Tea. A hot drink warms up the insides and really helps to take the edge off the intense cold. I also like coffee, but try to keep my acid levels down. So, I mostly drink hot tea. Any herbal tea is delicious. My favorite daytime usually has a mint in it and at night I enjoy drinking a Sleepy Time Tea with valerian and chamomile to help relax my body and spasms.
• Hot Showers. If I am absolutely miserable, I will go take a hot shower. It is a lot of work to shower so I have to be really, really cold to go to all that trouble.
• My Hubby. Even if I am warm all evening, when I lay down at night, I will freeze for about 20 minutes. My theory is that the cold blood that pools in my feet and legs all day from bad circulation suddenly circulates when I lay down. It truly does feel like ice water running through my veins as it is a very deep freezing chill. My sweet hubby will put my legs and feet against his warm body heat and rub them until they get some warm blood flowing back into them! After about 20 minutes, I eventually warm up.

Outside:

• Stay In. This isn’t realistic for most of us, but trying to avoid extreme temps for long periods of time is the best prevention. When you have to be out, try to make the outdoor time as short as possible.
• Warm Your Vehicle. If possible, have your car started and the heat going before you get in. The metal of a car holds in the cold and it quickly seeps in! Get the car warm before you have to get in!
• Scarf. This has been my newest find this year and I am in love! The neck is the most important area for cooling down or warming up, and I have always tried to keep my neck covered, but this big scarf has been wonderful! It is such a large scarf, I can wrap it over my head, or I can bunch it up around my neck, or I can pull it around my shoulders like a cape, or I can lay it on lap as a blanket….did I say I love this scarf? I will never have a winter again without one! Get one already! Achillea Long & Wide Scottish Tartan Plaid Large Cashmere Feel Blanket Scarf Check Shawl Wrap 80″ x 29″ (Red)
• Furry Boots. I have a very warm pair of fur-lined winter boots that zip up the side so that I can get my feet in them easily. If I know I am going to have to be out in the weather, I always wear these boots to help keep my legs and feet warmer. Regular shoes don’t seem to keep my feet as warm.
• A Blanket. If I will be outdoors, or in any place I think I will be cold (like a movie theater or something), I take a lap blanket with me. If I forget, I always regret it! I also have one in my vehicle when we travel, as my family and I don’t agree on car temps either!
• A Hoodie. I don’t do well in coats as I feel very restricted to push myself in my chair. I always wear multiple layers, and wear a large hoodie with a front pocket to keep my hands in. If the wind is blowing at all, I love having the hood to put up around my face.
• Gloves. This is the first winter I have not had to worry too much about gloves. I bought RibGrips as my wheelchair handrims. They are soft and rubbery and provide a tremendous amount of grip to push my chair. Since I don’t have a strong hand grip to push myself, these grips have been a game changer for me! When I had other handrims, they would be extremely cold and very slick in the yucky weather. When I have needed a winter glove, I have always enjoyed a football receiver glove. It is full fingered and has a rubber side which provided much-needed grip. Now that I have the RibGrips, I don’t need a rubber glove for grip. A glove for warmth if I am out is enough. www.ribgrips.com (use code AR15 for a discount!)

These are my tips and helps for staying warm this winter – inside and out! If you have any of your own tips, I would love to learn them so please share in the comments!

Stay warm!!

__________________________________________________________________________________-

Sources:

http://www.rn.org/courses/coursematerial-10006.pdf

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4654076/

http://www.spinalcordinjury-paralysis.org/forums/viewtopic/11775/54840

Several years ago, I had a new friend and she had an adorable little girl who was trying to wrap her mind around my paralysis. She touched my leg and said, “So you can’t feel that?” I said, “No.” Then she rared back and kicked my leg – very hard!! And then she said, “Well, could you feel that?!!” Horrified, her mother scolded her for kicking me and informed her that I most certainly could bleed and get hurt. I just started laughing because in the mind of that little child – if I couldn’t feel something lightly touching my leg, than surely I could feel a big kick! She was disappointed as I told her I could not feel that kick either!

Apart from little children, I do get asked quite often exactly what I feel and do not feel, and what I can or cannot move. Since the general consensus seems to be “oh…you are paralyzed and therefore you don’t feel or move anything” is incorrect, I thought it would be fun to educate a little!

NO TWO SPINAL CORD INJURIES ARE ALIKE

One thing we must get straight, and has been mentioned in other posts on this site, is that spinal cord injuries are like snowflakes – there are no two that are just alike. What I am going to tell you describes me, but that doesn’t mean another person with a spinal cord injury will present with sensation and movement like mine.

UNDERSTANDING NERVES IN THE SPINAL CORD

I want to clear up something. It is incorrect to say that we have no feeling or movement. We are much more neurologically complicated than that. There are sensory nerves (that control sensations such as touch, pressure, pain and temperature) and there are motor nerves (that send the signals to move to different areas of your body depending on where they are located on the spinal cord). When the spinal cord is injured it affects both the sensory nerves and the motor nerves. But how much is affected? Why can someone move a toe but nothing else? Why can they feel vibrations but not a pin prick? Why can they feel deep pressure but not light touch?

MOTOR VS. SENSORY NERVES

Since the sensory nerves control so much varied sensations, a person with a spinal cord injury can have a variety of “feelings”. Also, when a spinal cord has been damaged, the nerves get very confused and they do not carry the appropriate signals back to the brain. So, at times, if someone taps my leg and says, “Can you feel that?” I cannot feel the tapping of their finger on my leg, but 9 times out of 10, I will feel a sudden electric shock down my opposite leg. My confused nerves have the wrong leg (called reciprocal pain), and it has interpreted a light touch as a bolt of lightning. Others may feel different as all of our nerves interpret with their own language.

The question “what can you move” is valid, but a word should be added. The question should be, “What can you move voluntarily?” If you could see my legs move at times, I would never be able to convince you that I am paralyzed. When my legs decide to move involuntarily, and on days of my worst spasms, my legs jump and thrash and kick wildly. My body stiffens up so tight and my legs will cross and my strong hubby cannot get them to bend no matter how hard he tries. Y’all…I have some powerful leg muscles!! But they are not in my control at all. They do their own thing and I watch them, totally disconnected, except for the pain they are causing me in that moment. It is very surreal to me – to see all the power that is had in the times of spasm and still not be able to connect it to my brain for voluntary movement. So, what can I voluntarily move?

My injury is high (C5-C7), but I am an incomplete injury which has left me with an unusual body (most incomplete injuries have weird nerve interpretations). If I was a complete, I would have very little use of my entire arms. However, I am not a complete. The difference in my sensory and motor nerves are varied all over my body.

If you look at this chart, you can see what areas a C5 level injury would affect. It would affect that level and everything below it.

However, if you look at this image, you can see how simplified the above photo is. This photo is all the sensory and motor nerves that are within that same level.

I think you can see now why spinal cord injuries (as most are incomplete) present as unique as snowflakes.

• What signals get through to which nerves?
• Which nerves are they – motor or sensory?
• Does the signal go through as supposed to or does it get a scrambled message and do what it wants?
• Does it then create normal sensation and voluntary movement? Or abnormal sensation and involuntary movement?

For me, I have better motor nerves in my arms and hands than I do sensory nerves. On my right arm, I cannot feel pin prick or light touch and I have decreased sensation for hot or cold. On my left arm, I can feel light touch but not pin prick. On my chest, I do not feel pin prick or light touch but can feel deep pressure. I lose all sensation from my chest down with the exception that I remember feeling some vibration in my legs when I was in therapy and they used high levels of electrical stimulation on my legs. I can also feel a little deep pressure on the tops of my feet when Elisha jumps on them. It doesn’t hurt at all, but I can usually tell he is on them. Other than that, my sensory nerves are pretty shot.

My motor nerves are better though in my upper body. I have good movement in my arms and hands, although they tire and get very heavy and burn horribly if used too long. There is not a time that has went by when I play the guitar or piano that my arms do not feel like someone has been sanding them with sandpaper. The longer I play, the worse I will play as my fingers will no longer go where I tell them. I cheat on many chords because my left pinky will not do much against resistant. There are weird moves I just know not to do or have learned to compensate. If I bend my wrist, it makes the grip in my fingers tighter and they work better. If my hand is facing down and I am trying to pick up or grab something, it is very difficult for me to do without bending my wrist to compensate. I have learned to grab and flip my hand over quickly to keep from dropping things. However, dropping things is a norm for me too. 🙂 These are really very minor in light of how it could be, however, I do feel these deficits daily.

The muscles in my back and stomach are very weak and I can have days where they feel like they are firing better, which makes all my transfers, rolling over in bed, getting dressed, toileting…much easier! And then there are days where they are just not having it. I need more help on these days and these are the days Jimmy helps dress me and gets me in and out of my chair. Typically, at the end of big days, Jimmy always has to help me undress and get me into bed. I welcome that help!!

From my upper ribs down, I pretty much have no voluntary motor nerves…with the exception of a big toe that I can get to move a couple of times on a good day . Don’t know where that nerve comes from!

This diagram shows where my sensory nerves (in blue) and motor nerves (in pink) are gone. However, if all my friends with the same exact level marked their motor and sensory, it would look different from this.

Motor

Sensory

MUSCULAR  AND NEUROLOGICAL PAIN

Apart from what is normal sensation or movement, there are many of us who suffer with chronic muscular and neurological pain. The muscular is from overuse of the muscles that DO work and we overcompensate with them for so many that don’t work. The neurological pain has to do with those confused nerves that fire and shoot and stay confused. Many of those signals get sent as pain. This can change based on our time spent in one position too long (either in our wheelchairs all day, or in our beds all night), the weather, stress, illness, fatigue, spasms and spasticity. A positive is that neurological pain can let us know that something is wrong in our bodies that we cannot feel normally. For example, if something is “off” my legs start spasming and won’t calm down and electricity starts shooting up and down my legs. I know to investigate for something wrong – a tight shoe, a wrinkle in my clothes, a full bladder…or other things. I always feel like I am sitting on sharp gravel, but the longer I sit in one place, that sensation turns into shards of glass and I become extremely uncomfortable and quite miserable. Although I HATE that pain, I am thankful that it reminds me to do pressure reliefs and to reposition myself so that I won’t get pressure sores. My spasms and spasticity has increased the last two years, and I am trying to learn ways to trigger them so that they can help me with other functions. For example, if Jimmy lifts me straight up out of my chair quickly, my legs will stiffen and can hold my body weight for a few seconds. That takes some of the load off of him while he can reposition. However, it is completely unpredictable how long that lasts and when they give in, I collapse so it isn’t dependable. I would love to learn how to make that a little more dependable. I am hoping PT could help me with that.

There are times though, that you cannot find an explanation for your pain and you just have to deal with it.

CONCLUSION

I hope that you have learned that people with spinal cord injuries:

• Can feel things in their bodies. It just isn’t what you normally feel.
• May have movement in their bodies. It doesn’t mean it is voluntary!
• Some parts of the body can have sensation or movement that is somewhat normal and voluntary, but still not be able to feel or move other things as incomplete injuries have confusing nerve impulses.
• Neurological pain can still be felt in areas where there is no sensory nerve signals.

If you have any more questions or comments, please share with me!