Tag: paralysis

Hmmmm…

Things that make me, a paraplegic, go hmmmm…

Handicapped Placards – Who decides who qualifies for a placard? I have sent in FIVE applications over the past two years and still have NOT gotten a renewed placard. Mine literally expired in March, 2017 and I cannot seem to get one. Yet I constantly see people who hop out of their cars from a handicapped space and stride into stores. I saw a woman come out of Target in 5 inch heels and get into her sports car parked in a handicapped space while I am driving around in my 12 year old, $63,000 Dodge Caravan retrofitted with a ramp, power seats and hand controls trying to find a space that will work for me to get out in my power wheelchair. Hmmmm…

Handicapped Dressing Rooms – Yes, I understand these larger rooms are spacious and prime real estate amidst the smaller rooms. But if you can stand, walk and don’t have children in a stroller, take your possible purchases into one of the many smaller rooms and leave the one large one for someone who actually needs it. This also applies to bathrooms. Because speaking for many people who have paralysis, if you feel you have to pee, you need to pee almost immediately or you will wet your pants. I can’t tell you how many times I’ve almost peed my pants while waiting for someone who just likes a taller toilet and more space to pull up their pants. Hmmmm…

Handicapped Hotel Rooms – Honestly this is one of the most frustrating issues I’ve dealt with over the past 27 years. If I am going away, I immediately begin the search for a “wheelchair accessible” room that includes either a roll in shower or a bath tub with a tub bench. Yet often I arrive to my destination, only to find out there is not an accessible room available any longer. Recently I was told my reservation was simply a request and did not guarantee me a room. I replied that I called the reservation department and not the request department. This hotel then agreed to place me in a room designed for a deaf person but not for a wheelchair. It had flashing lights on the telephone and doorbell but not an accessible bathroom. They also told me that they only had one wheelchair accessible room left but they didn’t know if someone checking in later might need the wheelchair room. Now remember… I am sitting in a wheelchair in front of them at the moment but someone who wasn’t there could possibly need it. But hey… while I couldn’t take a shower, I could do my disco moves to the doorbell. Hmmmm…

Wheelchair Friendly – This is a phrase often used in small print when traveling. It means… if you are in a wheelchair occasionally but can walk, this building might possibly work for you. It’s kinda accessible but not fully. And if you are unable to walk and use a wheelchair 24/7, you’re screwed. Hmmmm…

In Case of Fire – Every time I ride an elevator and see the sign, “In case of fire, don’t use elevator,” I have to shake my head. While I get the theory behind the sign, I have to ask… am I just supposed to stop my chair at the top of the stairs, drop to the ground, and roll down the staircase if a fire ensues above the first floor? Hmmmm…

The Companion Seat – Every theater, show, movie theater or concert seems to have a handicapped seating section nowadays. People in wheelchairs are resigned to sitting in that one small section. But there is often a companion seat next to it. While I am sure it is meant to be thoughtful, it also means that I can never sit with a group of friends or family members whenever I go anywhere special. Apparently the disabled are only allowed one friend! Hmmmm…

Curb Cuts – I am quite certain that it is a job requirement for non wheelchair users to design curb cuts. In busy cities, they are often steep, bumpy, and slightly dangerous but add to it a 20 second count down clock to get up/down and across the street with a throng of hurrying people to make your heart pump a little faster. In NYC and DC, it is quite exciting when you are still crossing when the “walking” time runs out. Driver’s will not wait for your chair to make it across the street before horns start beeping and the “international sign of displeasure” is given. Hmmmm…

These are just a few things that make me shake my head as I venture into the world in a sitting position. I didn’t even mention the things that make me say “hmmmm” that have nothing to do with my life as a paraplegic. Maybe the next blog…

What makes you shake your head?

Not Always Yes

Today my pastor, Pastor Russ Weidel, spoke about prayer and in his message he said that God has four responses to prayer…

YES

NO

NOT YET &

YOU’VE GOTTA BE KIDDING ME?

He added the fourth somewhat in humor but I found it quite possible, even probable, that sometimes God is shaking His head at our requests. Pastor Russ also said that God does not always say yes to our prayers. He always answers but the answer is not always yes.

It reminded me of when I became paralyzed 27 years ago. As a new wife, new mom, young woman and follower of Christ, I prayed for Jesus to heal me. I prayed that I would be able to wiggle a toe. I prayed that I would be able to lift my leg. I prayed for feeling when the doctors stuck a needle in my leg. I prayed to walk. I prayed for a miracle.

Others prayed for this too. I know many family members, friends, and even strangers prayed that I would walk again. They went to the throne of God on my behalf, asking for a miracle. I look back and am amazed at the people who prayed for me.

After a while I felt like I was letting people down. They would tell me they were praying for me to be healed yet month after month passed and no matter how hard I tried and how much I wanted it, I still wasn’t able to make my brain force my toe to wiggle. It was a terrible feeling which caused me to have many questions and confusions. I doubted if my faith was strong enough. I questioned if I wasn’t trying as hard as I could. I wondered if I had done something wrong and if God was punishing me. I struggled with guilt for not being healed.

But God doesn’t always say yes.

In my case, God did not say yes to those prayers. But that’s not the end of my story. While I have not been healed physically, 27 years later I can clearly see how much He has blessed me and used me as a paraplegic. Paralysis is my story and He always uses our stories beyond what we can imagine.

Instead of walking, God said yes to allowing me to grow closer to Him. Through all of my surgeries, pressure sores, muscle spasms and sleepless nights, God has used those trials to help me draw closer to Him. Nights spent alone in a hospital room caused me to cry out to Him for rest. Times of intense fear caused me to seek Him for comfort. Days struggling with unending pain had me calling to Him for strength beyond my own.

God said yes to giving me an opportunity to share my story with people that I never would have met if I wasn’t in a wheelchair. I have met countless people who are disabled or know someone who is disabled or just are struggling and need someone to talk to about their pain. He has given me a mission field of people who I can reach since I have endured so much physically and emotionally from my paralysis.

God said yes to giving me my deepest desire of more children. I loved my first son and was so grateful for his life but God blessed our family by growing it with a little boy from across the ocean and then surprising us all with a baby girl too. I never expected God to answer my heart’s desire with THREE beautiful children.

God said yes to letting me find humor on tough days. Not every day and every situation is funny, but God has given me a gift to find laughter in the midst of my trials. One day I had a terrible bowel accident when we were at Penn State University for a track meet. I sobbed that day, hating my life and mortified at the embarrassment of such an awful circumstance. But now it makes me laugh because it was the day I met my future son-in-law, Jaiden. (Crappy way to meet someone, huh? See what I did there.)

God said yes to building my character. He has allowed awkward moments, unbelievable situations and some difficult testing of my faith to grow me in many areas. I have grown stronger through my weakness; thankful when it’s hard to find joy; trusting when I am fearful; and dependent when I want to have control. As my pastor said today, God is more concerned about our character than our comfort.

God said yes to so many things which are better than walking. After 27 years of sitting in a wheelchair, peeing through a tube, having accidents at the worst times, enduring spasms that make me cry, experiencing 19 surgeries, countless hospital stays and even being on death’s door a few times, I have learned that sometimes the best gifts come from God “not always saying yes.”

And the best part… I don’t believe God said no to my prayer of walking. I believe He instead has answered with a NOT YET! Because one day I am going to be before God in Heaven and He is going to answer my prayers. He will say ARISE and I will immediately be healed and spend eternity walking down the streets of gold. (Plus racing Zach, pole vaulting with Alex & dancing with Morgan.)

What a glorious day that will be!

Unexpected gifts…

When I was 29 years old…

I had a very high risk pregnancy.

My life could have been at risk during both the pregnancy and delivery.

I had a husband and two small sons at home.

Abortion was suggested to me by my physicians.

I would like to share the story of my last pregnancy. But first you must know… I am a follower of Jesus Christ. I believe in life. I believe life begins at conception.

At age 29, I was a young mom of two little boys and found myself in a situation I never expected. Backing up a bit… at the age of 23, I gave birth to my first son, Zach, and due to complications I became a paraplegic. During surgery they discovered some life threatening issues, including an aneurysm and two spinal AVM’s. The specialists at Columbia University Hospital in NYC did their best to block blood flow to those areas but were not able to block them more than 40%. The paralysis was caused by the extra blood flow from the pregnancy so a future pregnancy would hold a lot of unknowns and possible risks.

After many discussions, we decided that we weren’t ready to take any risks with my life so we chose to adopt our second child. We adopted our second son, Alex, as a three year old from an orphanage in Romania. I can’t lie and say that there weren’t big adjustments, especially for Alex who had left the only life he knew to join a family of strangers in a foreign land but also for Zach who had been our one and only for five years and now had to share his room, his toys and his parents with a brother who didn’t even speak English. But as a family we began to adapt to our new normal and settle into a routine together. As a paraplegic, it took some time for me to acclimate to having two active, busy preschoolers but I truly loved being a mom to these two little ones.

As Alex’s first anniversary with our family approached, I began to notice that I was not feeling well. I had a lot of nausea and even bouts of vomiting. Never giving pregnancy a passing thought, I mentioned it to my friend, Cindy. She asked me if pregnancy was a possibility which I immediately laughed at the notion. Yet as days passed and the symptoms increased, the thought took root in my head. I mentioned it to my husband who promptly drove to Walmart purchasing a double pack of pregnancy tests.

The first test yielded a very faint pink line but it was not very clear one way or the other. The second test was similar. It showed a faint line indicating pregnancy but unlike our first pregnancy, it was not immediately positive. Steve hopped back in the car and back to Walmart for another test in a different brand. He came home with another two pack. This time the line was very obvious that I was indeed pregnant. I took the fourth test just because my insides were freaking out as my brain began to realize what the positive test meant.

This test meant a precious little life was growing inside me. But it also meant an abundance of conflicting emotions and thoughts.

I was overjoyed. I was terrified.

I wanted more children. I didn’t want to leave the two children I already had.

I wanted to shout it from the rooftops. I didn’t want anyone to know.

I couldn’t wait to have a newborn again. What on earth would I do with a newborn?

I wanted to live. I would give my life for this child.

God blessed me. WHY God?

These thoughts (and many more) were my constant companions. Once reality set in, I began to see various doctors trying to determine what this pregnancy meant for me.

One doctor sat me down and gave me some scary truths. My situation was unknown to all of my specialists. They had not had a situation like mine and were unsure of the complications and risks to my health. I had two children at home and I had to consider them because this was a very high risk pregnancy for me. He laid out the option of an abortion saying that I needed to consider all of my options since there were just so many unknowns. While he did not push it, I knew that it was a suggestion he thought I should seriously consider.

I had gone alone to that appointment. I needed to hear the truth, but I was frightened by all he said. Was I selfish if I had this baby? Would I die and leave my boys alone? What was the right decision? Yet as I left his office, peace settled around my heart and I knew that an abortion was not the answer for me. The peace didn’t remove all of my fears. Some days I would look at the faces of my little boys and just beg God to keep me safe so I could watch them grow up. But the peace gave me the assurance that no matter what happened, God was in control and I could trust Him with not only my life but the life of my unborn baby.

Once the doctors realized that abortion was not going to be an option, it was never mentioned again as they just jumped on board to make this pregnancy go as easily as possible. They still discussed concerns but I felt as though each doctor and nurse I met made it their goal to get both of us to the finish line healthy and whole.

As the pregnancy progressed, I spent numerous hours in one doctor’s office or another. I saw a neurosurgeon for the issues in my spine; I went weekly to my OB/GYN for monitoring; I went weekly to a high risk doctor for ultrasounds and testing; I had to see my urologist (this baby killed my bladder); and my regular doctors who just followed my personal health and my medications. Medications were another big issue because some I absolutely had to have, yet could harm the baby so I opted not to take them despite the added problems it caused me physically.

When I was 34 weeks pregnant, I went in to see my OB who was a believer and very compassionate man. He came in and he asked me how I was feeling and although I am a very strong person, I burst into tears and told him I could not be pregnant for one more second.

I was peeing my pants constantly. I was either constipated or had the runs. I had non stop muscle spasms. I was uncomfortable. I was nauseous. I WAS DONE.

(I also had rowdy four & six year old sons and had just packed and moved our entire home while my husband was out of town for work quite a bit. My rope was getting shorter and shorter and my grip was slipping.)

After an amniocentesis to make sure the baby would be safe, my doctors got together and made a delivery plan. I would deliver my baby (even after weekly ultrasounds, I did not know if it was a boy or girl) by C-Section four weeks early. The neurosurgeon did not feel it was safe to insert an epidural in my spine so I had to be put under general anesthesia for the delivery. The high risk specialist would be in attendance to monitor me while my OB would perform the C-Section.

Moments before I was to go into the operating room, my husband and I prayed together. We were both afraid. I was shaking. But we trusted God. No matter what would happen in the next hour, we had trust that God was writing our story.I knew I made the right choice. This unborn baby who I had yet to meet was as much my child as Zach or Alex and I could never take any of their lives. Even if it meant losing mine.

Praise the Lord my story was not yet over. After I woke up from surgery, I saw my husband standing there with our precious baby girl. Unspeakable joy filled me as I realized that I had two little boys and now a baby girl. My heart wanted to burst with gratitude for surviving the pregnancy and delivery and the realization that my deepest prayers were answered and the desire of my heart was given. Tears filled my eyes as I kissed my husband knowing together we would watch our sweet family grow.

My sons gained a little sister, Morgan, and other than an infection in my body, I was healthy. I did have my tubes tied because I didn’t want to risk my life again. I am still so grateful for these unexpected gifts from God. All three of my kiddos. My three kids-in-law. Realizing how valuable life is. Learning to depend on God. Discovering peace and joy amidst worry and fear. Trusting when your faith is shaky. All unexpected. All gifts.

My story may not be how I would have written it but I have learned to be thankful that God is the author holding the pen.

My story < His glory

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As New York passed the bill this week for full term abortions, I have seen and heard arguments from both sides of the debate. Personally I am deeply saddened by this bill as I value both life and adoption. I do not write my story to debate or argue with anyone but rather to be understanding of how circumstances and life can be frightening. I hope to encourage women to help one another, support one another, love one another. I also hope it encourages you to trust God when you feel hopeless and afraid.

Maybe choice begins with the choice to join our hands with less judgement and more love. Less criticism and more compassion. Less selfishness and more serving. Less guilt and more prayer. Less me and more Jesus.

The day Morgan was born & her big brother’s meeting her. (Steve lost the stache thank goodness!)

Zach, Morgan & Alex on Morgan’s wedding day

Photo by Cross Photography

God knows you and loves you.

 

No one to kiss but a dog…

My start to 2019 began with the ball dropping on TV and me in bed with my two grand pups. Steve had fallen asleep on the couch and I was tired so went to bed alone. As the clock struck midnight, I hugged El (my little grand pup) and she licked my face. So yep… I kissed a dog to celebrate the entrance of a New Year!

(To save face, we did have friends over but we were all tired so they left at 10:45 pm and my husband did kiss me at 11:30 before he fell asleep on the couch. He had been up at 5:30 am since he worked that day. So that left me alone and smooching the dog!)

The new year is like getting a brand new journal. Fresh and clean and ready for a new story. I always love getting a new writing journal… it’s just waiting to be filled up with a story, thoughts, doodles or prayers. As we begin a new year, it is a time to look back and evaluate our past but also to look forward and plan and dream about a new, fresh start. It’s a time to make changes and resolutions. (And probably break some or all of those resolutions by February 1st.)

Recently I was in a Sunday School class and the teacher (shout out to Joe Kak) spoke about what you would like to resolve (promise to yourself or to God) for 2019. I made a list of some things that I would like to work on in this new year. I don’t want to call them resolutions necessarily because to me those are a bit cliche and easy to break. I also decided not to do the “normal” resolutions like going to the gym every day or no longer eating sugar (which I would like to do except for this little devil called ice cream.)

So for 2019… I resolve to work on…

1. Prayer. This is my #1 because I would like to be a person who says “I will be praying” and mean it. Saying “I will pray for you” has become trite… something we say when someone is struggling or sick or hurting. If I say it, I want you to know that I am truly praying. I want to become a woman who talks to God. All. The. Time.

2. Encouragement. I can tend to get self focused and busy in my own life. Don’t we all?! I think of people often but I want to work on taking it beyond a thought and reach out in action with a note, text, phone call, visit or a gift. Encourage means to inspire, hearten, embolden, fill with confidence… I want to be someone who fills others up.

3. Hospitality. I love people and miss having people in my home. One area I would to change is to let go of my loneliness since becoming an empty nester and invite more people into my home. Admittedly, I do not enjoy cooking but I can be hospitable with a take out pizza. Everyone likes pizza (except gluten and dairy free folks but I usually have lettuce and carrots in the fridge because let’s face it, the cookies get eaten quicker than the carrots). So I would like to fill my home back up with laughter and talking and fellowship.

(Btw… I was just joking and would offer more than lettuce & carrots to my gluten/dairy free friends. Thankfully there are many choices now for those with restrictions.)

Those are my three big ones… a few little ones are…

Sigh less. I drop a lot and therefore sigh a lot. With little balance and sitting in a wheelchair, retrieving things I have dropped is a struggle which leads me to loud and often overly dramatic sighing. I have already failed every day at this but awareness of said sighing has to be some sort of positivity, right? (Be an encourager and agree with me.)

Just today I failed at this as I tried to carry all of my groceries into the house at once and of course, several bags broke as I was going up the ramp and food went rolling everywhere and I could not reach half of it and the other half blocked my entrance into the house. This ended with not only a sigh but me yelling out loud and outside for all the neighbors to hear… “SERIOUSLY!!!“

Look for the positive. Searching for the positive in a world of constant negatives is a habit I want to develop. I want to look for the positive both in people and in situations. Searching for the positive amidst annoying people or during aggravating situations is a goal for 2019.

Living life as a paraplegic creates constant frustrating situations. It also gives you an opportunity to see some very rude people like the woman who recently took the last handicapped parking space, hopped out of her car in high heels, and strutted into Target… can I please have her disability instead? I guess they now give placards for the chronic illness of ignorance.

So I am going to strive to look for the positive. For example… those annoyances give me fodder for my blog.

Establish better habits. Honestly my sleep schedule is out of whack, my diet is irregular and not balanced, my motivation level is low, my house needs organization and I spend too much time on my phone. Oh yeah… and that financial side of life is another area to work on. These are the resolutions that most people break by the end of January. So instead of resolutions, I just want to adjust, be more aware, more disciplined and more intentional in developing some better habits. (Crap… it’s currently 1:13 am so the sleep schedule is still a work in progress too.)

These are a few thing I personally would like to work on for 2019. I know like most resolutions, I will have good and bad days. Some moments I will succeed and some moments I will fail. As I look back at these first days of January, I realize I haven’t succeeded in any of these areas but thankfully tomorrow is a new day and His mercies are fresh every morning! (Lamentations 3:23)

And as the saying goes, I would rather try and fail than fail to try.

What would you like to resolve this year?

 

My New Year’s Eve date

A recent example of things disabled people have to constantly deal with.

Anyone else relate?

I will start on Monday.

Genius idea!

Happy 2019! Make it a good year!

Not on my Christmas List…

Christmas is just around the corner and people are making their lists for Santa. I have been fairly nice this year (with maybe a little naughty thrown in), but here are some things that did not make my Christmas list.

Fitbit

Treadmill

Running Shoes

Thigh Master

Foot Bath

Electric Foot Massager

Jump Rope

Pogo Stick

Snow Shoes/Skis

Tap Shoes

Soccer Ball

Stair Climber or Elliptical

Roller blades or Ice Skates

Skateboard

Bicycle

Ballroom Dancing Lessons

Trampoline

Butt Lifting Jeans (didn’t even know these existed)

Heated Seat Covers

Zip Lining Experience

Hiking Boots

Walking Stick

Foot Warmers

Ninja Warrior Backyard Obstacle Course

Hopscotch

Peddle Boat

And my personal favorite…

Twister

I have to be honest though… 95% of these items would not make my list even if I was not paralyzed (except for the butt lifting jeans… at my age, almost everything could use a good lift)!

Merry Christmas!

In everything…

Several weeks ago we turned the clocks back an hour. Now it is dark before dinner. I love the cozy moments of late fall/winter. Blankets, reading a good book, watching a movie on the couch, Christmas lights, holiday activities and falling snow are some great moments of the cold season in Pennsylvania.

But with those moments also comes seasonal depression. Not getting out of the house as often, lack of sunshine because of the many gray days, bitter cold temperatures that seep into your bones, snow that is counted in feet rather than inches… seasonal depression is a real thing for me. Sometimes the snow keeps me stuck in the house for days because I cannot maneuver my chair through the drifts. That leads to loneliness and too much time alone. And as a people person and extrovert, loneliness is not my friend.

A few years ago I was so tired of having the winter blahs that I was getting on my own nerves. I was feeling so down in the dumps that I couldn’t even stand my own company. I was sad, lonely, bored, cranky, frustrated and restless. One morning I read my daily verse and it said,

“Rejoice Always, Pray without ceasing, In EVERYTHING, give thanks, for this is the will of God in Christ Jesus for you.” 1 Thessalonians 5:16-18

The words IN EVERYTHING jumped out at me. I am called to give thanks when my car is broken (which was my situation most of this month); or when my wheelchair stops running (which is frequent); or when my health is bad; or when I am upset about a situation or circumstance; or even when I am just lonely and bored. I need to give thanks all of the time, not just when things are good but in everything. That’s not always easy for me. Sometimes I just want to sit alone, having a pity party and whine, pout and mope.

After reading that verse, I pulled out a notebook and decided to write down things I was thankful for because I wanted to focus on the blessings in my life. I started writing a list down every day and I found myself coming out of my funk. Amazingly when you start consciously looking for things you are grateful for, your head and your heart start to change. It isn’t as easy to be self focused when you intentionally become thankful.

With Thanksgiving being this week, we are often asked “What are you thankful for this year?” At this time of year we are quicker to share the things that make us thankful. While this is a great yearly practice, I think we need to make gratitude a constant state of mind.

We can’t always change our circumstances (I will most likely not wake up tomorrow able to walk), but we can begin to look for things in our circumstances that are good.

Depression is a very real thing and I do not want anyone to think I am saying that it isn’t. I take (and need to take) daily anti depressants to help me with my mental health. But I have found that intentionally looking for gratitude, especially in my moments of anxiety, depression and frustration really helps me refocus my mind which then transforms my heart.

With Thanksgiving tomorrow, I hope you take time to give thanks but also that you begin to daily become thankful in everything. Begin a gratitude journal and write down at least 5 things daily and watch it transform your attitude.

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A few excerpts from my journal:

I am thankful for:

Clean sheets that smell fresh like Tide

Laughing with friends until it hurts

Life chats with my sons, Zach & Alex

Worshipping God freely without fear

Target trips with my daughter, Morgan

Christmas lights that brighten up the darkness

Long phone conversations with my Mom or Jen

Craft times with my nieces

FaceTime chats with Camryn, my 4 year old niece

Homemade applesauce & the smell of apples and cinnamon

Getting my van back after weeks of it not working (thanks Steve for finding the magic place)

A power wheelchair that drives fast and doesn’t kill my arms

Sunday afternoon naps

My paralysis giving me opportunities to meet new people

Ordering pizza and not cooking dinner

Memories of Thanksgiving around my Grandma’s table

Wednesday night youth group with amazing kids & awesome teaching by Jaiden

Getting so involved in a good book that I lose track of time

It’s not always big things but little moments of thankfulness. Adopt an attitude of gratitude!

Happy Thanksgiving! Enjoy time with your family and friends sharing a yummy meal around the table! And wear your fat pants so you aren’t uncomfortable when you go for seconds! Stretchy pants should definitely make the thankful list!

Six of my biggest reasons to be thankful! ❤️

What Are You Doing In A Stroller?

One day I went to the local mall, entered the elevator and made room for a young mom who was pushing a preschool age boy in a stroller.

I pushed the button to the second floor and smiled at the preschooler. He looked at me, surveyed my chair and asked, “What are you doing in a stroller?”

His mother turned beet red, avoided eye contact and immediately began to apologize for her son’s question. I just started laughing. It was, and still is, the best question I have ever been asked! Reassuring his poor, embarrassed mom that I did not mind his question, I found myself chuckling about his inquiry throughout the day.

It did not offend me. It did not hurt my feelings. It did not make me angry.

Instead I appreciated the curiosity and honesty of this little one. He didn’t know what a wheelchair was… he didn’t understand paralysis… he didn’t care that I hadn’t walked in years. He just wondered why I, an adult, was riding on the elevator in a chair with wheels. Similar to his ride.

I love children and their questions. They are so innocent and inquisitive. Young children are trying to figure out their world and asking questions, especially “why,” is part of their discovery process. I think that it is normal to look at someone who looks “different.” And of course queries arise. When I see someone who isn’t the same as me, I want to ask questions too. Unfortunately as adults, it can come across as intrusive instead of inquisitive.

For me, I enjoy talking to kiddos because I think it teaches them that although I may be sitting, I am just a normal person. (Before anyone comments on that statement… normal is relative!) I also believe it is important to teach them to be kind and empathetic to others who struggle with a disability or a difference. Another critical lesson is to teach kids to be respectful of medical equipment. For example, my chair is not a toy. My joystick and buttons are off limits because my wheelchair is my lifeline to the world. If it breaks, I am stranded.

I was a substitute teacher for about 8 years at a local elementary school. I allowed time at the end of each school day for the kids to ask me questions because they were curious. I thought I would answer some of those questions to give a little insight to paralysis.

How fast does your wheelchair drive? I started out in a manual chair but after years of wear and tear on my arms, I was switched into a power chair. My last chair went 10 miles per hour which was almost too fast. Sometimes I would hit the joystick and the chair would tip backwards because it accelerated so quickly. My current chair only goes about 3.6 miles/hour. Back in the day, the faster chair was nice because I could take my kids on bike rides through the neighborhood and actually keep up with them. Now that I am an old lady, I guess 3.6 mph is fast enough. No… I lie… I like going fast!

How much does a wheelchair cost? Thankfully most of it is covered by insurance and I can get a new one every 5+ years, but they average about $15,000-$30,000 depending on what you need. I paid money on my last chair for the ability to raise my chair up about 6 feet. It is nice to reach things off the top shelves or just to look people in the eye!

Do you drive? Yes… I have a very expensive used Dodge Caravan that has a ramp for me to drive up and into the van. I took driving lessons to learn to drive with only my hands. While I have hand controls, my car still has foot pedals for others to drive it normally. One interesting fact is I had to be paralyzed for six months before they would teach me to drive so that I didn’t have the sensation to use my feet in an emergency. Also I had to take both the written and driving exam again to get licensed to use my hands.

What do you miss the most about not walking? As silly as it sounds, I miss swinging on a swing. Growing up, we had a tree swing and I always loved just going there to swing and relax. I also miss not being able to go to visit people because I can’t get into their homes. Stairs make visiting family and friends challenging. One of our family friends built their home entirely accessible on their first floor so I could visit anytime! That is still beyond touching to me! (Love you Swanson family!) I also have other friends who purchased or built ramps they put out when I go to their homes. That means a lot to me!

How do you you shower because you always look so clean? This question made me laugh because of the added comment of looking clean. I am not sure if she knew other people in chairs who were dirty but I loved her question. Anyway, I have a bench in my bath tub that I use my arms to transfer onto. I need to have a handheld shower head so that water isn’t just hitting me in the face.

Why are you so lazy & always sit down? (Asked by my niece, Kenzie, when she was 4 years old.) It was a good opportunity to explain that I am, in fact, not lazy but am unable to walk. It went a bit above her head but I always try to explain in age appropriate terms what exactly paralysis is. Or if I am too tired to come up with an explanation, I just say that yes, I am just lazy and enjoy riding around. Recently while I was babysitting my 3 year old niece, Camryn, she tried to teach me how to walk by exaggerating her movements and when I could not do it, she became extremely frustrated with me. It was literally the cutest thing ever!

How do you know you can’t walk? Have you tried recently? That was asked by the one and only Leah, who is in my youth group, and honestly I didn’t have an answer for her. Truthfully I have not tried lately. I am just assuming I can’t since I cannot not move my legs. Hopefully I won’t get to Heaven to hear God say, you only needed to listen to Leah and try! LOL

Do you sleep in your wheelchair? Nope. While my chair can recline a bit, I do not sleep in my chair. Once again I use my arms to get into bed and use my arms to adjust my legs into a comfortable position. I have to wake up every few hours, sit up and change my position. My brain and spinal cord don’t communicate together so I had to train myself to wake up to change positions in order to prevent pressure sores.

How do you get dressed? I always get dressed in my wheelchair and wiggle my pants on. It takes me awhile to do it so I do not like to change my clothes unless I absolutely have to. If I could live in my pjs, I totally would! Getting shoes on is the worst because I cannot bend my feet to push them into the shoe. Sometimes I have to wrestle them on and sometimes I end up throwing the shoe across the room in frustration.

And last but not least… two of my favorite stories are not questions yet they are too cute not to share.

Zach was not quite 4 years old and we were outside with my sister-in-law and her kids. I was sitting at the top of my ramp in my manual chair, not paying much attention to the kids and chatting with Jen. Suddenly I felt myself unexpectedly rolling down the ramp, totally out of control as I hear my little son shout, “THERE SHE GOES!” Thankfully Jen jumped to the rescue and caught me before I tumbled out onto the ground. Twenty-three years later and this is a classic among our family stories that still makes us all laugh.

Finally, when my daughter, Morgan, was 3 years old, she told me she prayed for God to make me walk. I asked her what God said back. And as seriously as can be, she answered, “He said… maybe on Thursday!”

So I am still waiting but hoping someday Jesus calls me home on a Thursday so that her sweet prayer is answered!

Sticks & Stones…

Some of my readers do not know my story but I am a paraplegic due to complications after childbirth 26 years ago. In one of my upcoming blogs, I will tell more of that story, but it happened from a congenital defect that I was born with but was unaware of until I ended up unable to walk after my first son’s delivery. But this blog isn’t really about that… that is just setting the stage for tonight’s musings.

This week my youngest child (who is now a married adult) celebrated her birthday. Still wanting to make her a special meal, I went to the grocery store to get the ingredients for her favorite meal (tacos). As I drove, I was reflecting on my journey to being a mother of three “kids.” I hadn’t thought about it for years, but I suddenly remembered something that was said to me shorty after my paralysis which led me to this post.

Always wanting to be a Mom, I had my first son at the age of 23. He was a 9 pound, happy little guy, Zachary Ty. Falling immediately in love with this little life, I was thrilled to be his Mom. I remember those first days of motherhood clearly, counting his fingers and toes; listening to him breath; looking into his bright blue eyes; and even wishing he would wake up.

Immediately after his birth, I knew that I would want another one. For me, childbirth was four hours from start to finish so I knew I would eventually be ready to go through labor and delivery again to have another baby and sibling for Zach.

Unfortunately, like I previously said, there were complications and although the paralysis came about gradually, I was unable to walk within two months of his birth. Doctors were baffled at what was going on so it took months to get any answers. In order to get a proper diagnosis, my neurosurgeon in Reading, PA sent me to a specialist at Columbia University Hospital in Manhattan. Thankfully this doctor finally discovered what caused the paralysis which helped to save my life, but a few years later he told me something that both angered and challenged me yet ultimately impacted my journey into motherhood.

While I did not stay in contact with that particular doctor, I contacted him when Zach was two years old to discuss my options for having a second child. My regular doctors were not familiar enough with my defect to feel confident in saying it was safe for me to go through a pregnancy, labor and delivery again. (My original issue had not been able to be completely repaired so a definite answer was unclear.) Since he was the renown acting head of neurosurgery at a top US hospital, I was unable to speak to him directly. I left a detailed message with one of his nurses, hoping I would hear back from him. Weeks later I did hear from him in the form of a letter.

I still have that letter. Here’s the gist of it…

Since your damage was not completely repaired, it is difficult to say if it is safe to have another child. Currently there is no research to give a definitive answer so my recommendation would be that you do not risk your health by having another child.

That would have been enough of an answer for me except that he added a little bit more.

Besides as a paraplegic, I think it has to be difficult to care for a child from a wheelchair so I think you should be happy that you have one child and focus your attention on trying to raise him with your disability.

Reading those words upset me. While I know this doctor, who was a brilliant yet kind man, never meant anything negative with his words, it still hurt my feelings. I already felt insecure in my ability as a mom because life with a two year old was difficult. The adorable little stinker had run away from me or darted out of my reach several times so I had moments of uncertainty in my abilities to raise a child from a wheelchair.

After I had time to process the letter and came to the conclusion that all two year olds are difficult, whether you are a mom who is paralyzed or a mom who walks, my stubborn streak kicked in and I decided…

CHALLENGE ACCEPTED!

No one was going to tell me that paralysis could or should stop me from being a mom to one, two or twenty kids!

With my new mindset, I was ready to try for baby #2…. or was I? Instead I found myself nervous and unsure if it was the right decision, questioning if it was foolish to risk my health to have another child; wondering if I could die leaving my husband and son alone; worried that more complications could arise and leave me in a worse situation than paralysis; or even if I would have the ability to raise another child as a paraplegic. Meanwhile, my stubborn side kept gnawing at me that I could do it, despite the concerns and fears of others. The question was… which was the right voice?

Thankfully Jesus intervened and showed me that there are many paths to motherhood. He completely guided Steve and I into international adoption and made it obvious that it was His plan for adding to our little family. (Another amazing story for another day.) When Zach was five years old, we adopted an almost 3 year old little guy from Romania, Alexandru Benjamin. Since I had immediately loved Zach, I prayed I would love my new son as easily. Every mom hopes that there is enough love in their heart for another child. Well I can truthfully say, there is plenty of room. One look into his big, sad brown eyes and I was a goner! I immediately and easily loved my new son.

Despite language barriers, emotional needs and a few discipline issues, it did not take Alex long to acclimate to his new world or Zach to adapt to his new role as a big brother. As for me, while I had moments of mom fails, I was settling into raising two active little guys. We kept busy going to the local pool, taking long walks, going on adventures around town and even having play dates. Unbelievably I even babysat a few other little boys, proving to myself that I could care for children from a wheelchair. Patting myself on the back, I was proudly proving that doctor wrong.

Months after Alex came home from across the globe, I began to get sick frequently. Loving my stay-at-home mom role, caring for my husband and two sons, it was frustrating to feel sick to my stomach often. It put a damper on our activities since I needed to run (or wheel quickly) to the bathroom and didn’t want to be too far from home. Finding out I was pregnant was a complete shock as well as a blow to my current state of contentment. Fear wrapped itself around both my heart and brain, allowing worry to settle in and doubts to crop up! How could I manage a high risk pregnancy along with my other health issues while continuing to raise two energetic boys? And how on earth would I manage a newborn, a preschooler and a first grader?

Honestly I don’t know how I managed it. But somehow I did! Giving birth to my beautiful, sweet 8 pound daughter, Morgan Elizabeth, is a miracle story in itself. Months of weekly doctor’s appointments paid off when both of us came through the C-section healthy without any unexpected complications (other than a nurse breaking my wheelchair after driving it into a wall). Growing our family from one child to three children in 18 months was not in our plan but thankfully God is wiser because I love my three children and their three unique stories of life.

Raising three children was indeed taxing on me physically and emotionally. I had many surgeries, hospital stays and health concerns while they were growing up. Many days I was exhausted, weary and lacking. Often I lost my patience, yelled too much and even said some naughty words.

Sometimes I thought back on the words of that doctor, knowing that I was much more than a paraplegic. I was a wife. A mom. A daughter. A sister. A friend.

So yes, it is true… I have physical limitations! As a mom of young kids, I could not kick a soccer ball when they wanted to practice at home; I could not swim laps in the pool on a hot summer day; I could not ride a bicycle through the neighborhood in the dusk of the evenings; I could not hike through trails with them to enjoy the crisp, fall air; I could not give “under ducky’s” to make the swing go higher and faster; I could not…; I could not… that list can go on and on of things I was unable to do with my children. And that does make me sad if I dwell on it. I wish I could have experienced those activities with my kiddos.

But was that doctor right? I don’t think so… I do not believe my limitations hindered my ability to be a mom. I hope that instead my children think back on their childhood and remember having dance parties in the dark to loud, thumping music; snuggling on my bed reading book after book; catching fireflies on summer evenings; throwing rocks and sticks into the creek to see how big the water would splash; doing crafts around the dining room table; riding on the back of my wheelchair as fast as it could go to the bus stop; or looking into the crowd and seeing that I was cheering them on at every game, concert, meet or recital. So while I may worry sometimes that they were jipped out of a normal childhood, I pray they know they were loved unconditionally and constantly by a mom who sat 24/7.

So my encouragement to myself and hopefully to others…

* Don’t let someone else’s words or opinions be a manacle around you, stopping you from pursuing something great. Instead use them as fuel to move forward, jumping over every hurdle in your path.

* Watch your words. Use them to encourage and spur on, not to tear down, belittle or hurt. The phrase “sticks and stones” is a lot of malarkey. Words are impactful and often get repeated as a mantra in one’s head. Let your words be a positive melody and not a negative clanging.

* Instead of letting challenges limit you, use them to build your character, your strength, your faith!

* Don’t focus on what you can’t do. Focus on the I can’s!

* And most importantly don’t let fear stop you from living a life of love and joy. Give it to God. Trust me, He’s got you!

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Lastly… I did have my tubes tied because while I wanted to prove that doctor wrong, I am not a fool! Three children was plenty for this paraplegic!

Standing in the hospital with Zach.

My little baby could often be found on my lap.

Alex still in Romania with those big brown eyes. Melt my heart!

Brothers meet the first day.

Little sister joins two proud brothers.

After a surgery, we had a bedtime snack in my hospital bed at home!

My three best gifts!

My three plus their three equals six of my favorite people! I love being their Mom!

(Left to right… Alex with his wife, Mandi; Jaiden with his wife & my daughter, Morgan; Zach with his wife, Katie)

18,262

I have been alive for 1/2 of a century today… exactly 18,262 days!

It took me a long time to do that math and then double check my numbers but I am willing to do that much work for the faithful readers of this blog post.

Okay… truthfully I just googled it but I am 50 now… my brain doesn’t do math anymore… or in reality it has never done math. Just ask my Dad! He tried so hard to make me understand math but my emotionally charged, imaginative, wordy right brain just never got it!

For many of my 18,000+ days, I have been a hot mess! Some of my mayhem is from being a sinner who makes bad choices and fails regularly. Self admittedly, I have moments of frustration, impatience, judgements, doubts, selfishness and so on… that sin issue sure can make my life messy.

My personality also contributes to my mess. I have voiced things I later regret; laughed at inappropriate things at inappropriate times; made assumptions before knowing facts; created problems that never existed… a lot of that comes from being a talkative, overthinking, excitable extrovert.

Another factor is that I have not walked for 9,669 days. That’s longer than the number of days I was able to walk. So needless to say, the wheelchair and paralysis is a very big aspect of my life. Add all of that together and it equals some chaotic, muddling moments!

Consequently, this has led me to the realization that the process of becoming a little less messy is all because of WHO I believe in and not what I do!

One of my favorite images of God is as a silver smith working on a piece of silver over a fire. The fire is necessary to bring out the beauty and the strength of the work. The artisan has to hold it over the heat, never taking His eyes off of His work. He watches it intently, knowing exactly what that silver needs to become pure and not damaged. He knows his work is only truly completed when He can see His own image reflected clearly in it.

I look at my life as God continually refining me. I accepted Jesus as my personal Savior 11,899 days ago. I didn’t know anything about living for Jesus at age 18. Who am I kidding? At age 50, I still have a lot to learn. But through many years of paralysis, 29 surgeries, three near death experiences, being life lined, and surviving other numerous trials that challenged me physically, mentally, emotionally and spiritually, I believe that God has been molding me into a better person.

Some learned lessons…

I have learned to trust Him, thankful that His eyes never flicker away from me during the painful moments.

I have had to have faith when I question why I am in the fire, fully believing that the craftsman understands the process so I don’t need all of the answers.

I have discovered I have strength to withstand the fire and trials as long as my Father is right there holding me in His nail pierced hands.

I have seen that beauty can be made out of something ugly. Thankfully the artist can see beyond what only human eyes see. He chips away the impurities, knowing underneath there is a rare treasure.

I know I am not complete yet. None of us are. But I desire to be a reflection of Jesus. I long to love like Jesus. I long to serve like Jesus. I long to give like Jesus. As inadequate as I am at loving, serving, and giving, Jesus is teaching me and fashioning my character to be more like His.

One great gift of refinement is gaining empathy and compassion for others who are going through their own process of refinement.

Being in a wheelchair has given me countless opportunities to talk to others. Many people are struggling and need encouragement to deal with their “handicaps.” (We all have handicaps; mine is just visible.) It can be physical trials or depression or family issues or financial troubles or all of the above… but all of us can say we have times of difficulty. With the platform of my paralysis, I have had opportunities to talk to people about their trials (or fires). Experiencing my own moments of distress has allowed me to feel more compassionate towards others. God takes our challenges and turns them into opportunities. Opportunities to pray, love, give, help, comfort, listen, encourage, share… take your lessons and turn them into occasions to be there for someone else.

God turns beauty from ashes. Messes into messages. Tests into testimonies. Trials into triumphs. But you cannot keep that transformation to yourself.

SO….

Pray unceasingly. Love the unlovable. Give of yourself. Help with a need. Comfort the hurting. Listen to the lonely. Encourage the weary. Share your story.

Today on my big milestone, I want to just say that I am thankful that Jesus, the creator of the universe, holds me in His hands, never taking His eyes off of me while He creates something beautiful.

And now after all this deep reflecting, I am off for my free breakfast at Shady Maple… happy birthday to me!🎈🎁🎂🎉

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My P.S.’s…

Special thanks to my family & friends who made my birthday so wonderful! I am thankful for all of you who “walk” this journey with me!

Dad… I added numbers in this post just for you! Usually I never mix numbers and letters… that’s too much like Algebra for me! 😘

My kiddos… missing Katie & Mandi, my fellow birthday girls!

My parents who rescued me from the wild dogs… a story for another day!

Some Steve look alikes!

Some of my special girls (Katie, Jenny, Kenzie, Camryn, Morgan, Danielle) The photo would be perfect with Donna, Becky, Zoey, Holly, Anna, Nova, Mandi & Ashley in it!

Just a few of many people I adore. Missing pics of special friends & family but count myself beyond blessed!

When it rains…

Rain, rain go away.

Everyone in my area will agree that this summer has had record rainfall. Downpours. Flash floods. Roads closed. Detours. Sump pumps working overtime. Activities canceled.

We have had rain in record breaking proportions. Several times I have gotten stuck on roads that were closed due to flooding and have had to detour completely out of my way to get to my destination, taking me much longer to get from Point A to Point B.

I have also experienced downpours and detours personally. I have had days, and sometimes extended periods of time, that it seems like nothing goes right! Like the saying goes, “When it rains, it pours.” There have been many times where storms just dumped on me!

I have had moments with my health that have been one thing after another. Once I underwent one surgery (a hysterectomy) where everything from the beginning went wrong and resulted with several unplanned consecutive surgeries, pancreatitis and my staples coming out leaving my entire incision opened. And the worst thing was they could not complete the hysterectomy due to complications so I still had all of my original issues plus a slew more by the time all was said and done. That time it definitely poured and I had many unexpected detours to overcome.

And then there are days like I had last week. Nothing major but a multitude of continuous, misfortunate events that led to my extreme irritation and a slight (actually more than slight) emotional breakdown. Looking back now, it’s amusing… but then… not so much!

To set the scene…

My youngest child, Morgan, was married six weeks ago so I no longer have children living at home. Since the wedding, my husband has had to go on a few week long business trips. This left me completely alone at home which I am convinced is a recipe for disaster. We were also having a week of seemingly endless rain. I used the time inside to clean out a few closets that needed attention. But this left me with several large garbage bags that needed to be put outside for pickup.

Raining lightly on Tuesday night, I decided to run the trash out before the skies opened as my weather app showed was coming. I dumped the entire cat liter box into one of the trash bags so it would be gone and not smell. I took several bags out and that was the last one I took to the curb.

On the way, the bag ripped spilling its contents all over my lap, clothing and wheelchair! I had cat liter dropping on the sidewalk and driveway as well as clumps of excrement on my lap, down my legs and on my foot pedals. I tried to shake it off and had to try to get it off my foot rests by bending over and using my hands to shake it off. It was disgusting and smelly. I wanted to quickly get inside to shower off the stink!

I went up my front sidewalk to go up my ramp. Now I had been frustrated with my ramp because when it was wet, I noticed my chair would slide on it. I was always able to get up but my wheels would slip and spin. This evening my wheels did indeed slip, and I went backwards with my back wheels going off the sidewalk into the mulch and my front wheels not touching the pavement, but now up in the air.

With my front tires inches off the ground and my back tires in the mulch, I quickly realized I was stuck. My tires were digging deeper and deeper into the muck of dirt and mulch. Getting nervous, I moved my body up in the chair, rocking it back and forth as I hit my joy stick forward. It took a decent amount of time, but finally I was able to get the back tires to push up onto the sidewalk. Now my chair is covered with cat liter and mulch! I was wet, stinky and disgruntled!

Back to the ramp. My tires were damp, slippery and dirty and would not give me enough traction to get up to the front door. So now I am stuck outside. I wheeled down my sidewalk to see if any neighbors were out and about. But it was raining so everyone must have been warm and cozy inside. Plus everyone has steps to their doors so I couldn’t knock to ask for help. Waving my arms in the air, I tried to flag down passing cars to see if someone would stop to help me. No one stopped.

Now I am crying because I have been outside for quite awhile without a viable plan to get back inside. I knew I had to call someone for help but who? Steve was in South Carolina. Zach and Morgan live close by but still would take about 20 minutes to get there so I decided against them. I decided to text Morgan’s close friend, Emma, who lives about five minutes away. She answered me immediately and her and her mom were actually driving home and close to my house.

A few minutes later they pulled in and pushed me up the ramp within seconds. Emma even took out my dog so I wouldn’t have to go back outside that evening. I was so thankful and grateful for their help. After Emma and Mary gave me hugs and left, the heavens opened and it was a deluge of torrential rain outside. But inside it was also a downpour of my tears.

I was a stinky, disheveled mess leaving cat liter and muddy tracks throughout my house.

I was alone and depressed, missing my once full house and hating the silence.

I was weary of living my life in a wheelchair and all the inconveniences that constantly come up.

I was angry that simple tasks like taking out the trash or going into my house was a grueling effort.

I was questioning myself because I had just read my devotional about when storms come you need to still trust God. But instead a small storm was rocking my world. I have been through so much worse but for some reason this night’s events had me an emotional wreck. I cried as hard as it rained and probably for as long. I was just so weary… bone tired, worn out, spent! I wanted to drive my wheelchair off a cliff and never get in it again.

After sleeping, I woke up and realized that it was a funny story and that God really had been with me through my “storm.” He helped me get out of the mulch; He had me get in touch with people who helped me physically into the house but also emotionally supported me with hugs and love; and He held the total downpour until I was safely inside.

I honestly do not know why I cried so much that night. Like I said, I have been through much worse. Usually this story would make me laugh but it didn’t. Not right away anyway.

But I am comforted by the fact that…

I follow a God who can calm the storms! (Mark 4:35-41)

I have a Lord who collects my tears in a bottle. (Psalm 56:8)

My Savior has also cried. (John 11:35.)

God knows our troubles. (Psalm 34:17)

I believe in a God who cares for me and reminds me to give Him my worries. (1 Peter 5:7)

Downpours, detours and storms are going to come our way! Expect them! Jesus says, “In this world you will have trouble.” (John 16:33) Prepare for them! Just like people order sump pumps or generators, we can prepare by drawing closer to God, learning and imitating His character, studying His Word, and having a group of trusted friends to support you. Preparation will help you when the tough times come so that you can stand firm when the winds shake you, the rain dumps on you and you need to take unexpected detours.

I may have emotionally lost it last week but thankfully His mercies are new every morning. I was able to wake up and laugh about the preposterous events. And even more, I was able to see His hand taking care of me even in my distress, anger and weariness!

And just to wrap up the story… I showered and cleaned off the cat liter, finally smelling better, but mulch fell out of my chair for the next 3 days!