14 Years ...
Part 1 THE BEGINNING
The evening is hard wired, etched in my brain, indelibly written in bold, dark letters.
Fourteen years ago. Another life ago.
The wife was propped up in bed, partially under covers, reading a magazine. I was just walking into the bedroom having been at my home desk this evening.
I sat down on the edge of the bed as we exchanged a few passing thoughts about tomorrow and what we planned that coming weekend. “Best laid plans of Mice and Men” as I describe it now. All was about to change with the phone that was ringing. Who was calling us at 10:30 this night?
It was a truck driver. He saw the wreck happen a few hundred yards in front of him. Just north of the Livingston overpass, northbound on I-275. The pickup truck had quickly swerved from the far-right lane of the Interstate and tumbled like a toy, didn’t know how many times, across all highway lanes into the medium grass. He could hear a baby cry, but couldn’t see the child that was in the rear seat of the pickup. The truck is really messed up. No, it was the only vehicle involved. Spoke to the driver, she gave me your number, and you need to come quick. I’m sorry.
My wife was staring at me asking, who is it, what is going on? Her voice was high pitched and I could hear her fear, but sensed it even more. I was trying to stay calm, levelheaded, be in control. My mind said Take Action! We just need to go! Get your clothes on! I practically yelled, no, I commanded. I didn’t know what to say or how to say it something to cover my fear.
Multiple emergency vehicles were already there. A State Patrol officer was waving cars right to an outside single lane. I went left to the inside lane a little too fast and very quickly got out of the car. My wife wanted to get out but all she was able to do was open the door. Her will to get out was not there. A First responder rushed to her door and told her to stay in the car. Strange, I thought, no one said anything to me. Or maybe they did and I was too focused on finding my four-month-old grandson who I heard still crying incessantly. I went by my daughter’s pickup she had been driving and hardly recognized it! It was flattened and twisted. I found my grandson not in what remained of the truck, but still in his car seat but being held by a fireman. I got close to his face and he quit crying for a short moment as I called him by name and told him everything was alright. I really didn’t know. The fireman told me everything was OK with the baby as far as he could tell but the medics will soon be here to check further. He pointed to a gurney with my daughter lying down but talking to other responders. I walked close enough to see her and saw no blood. I then walked back to the car and told my wife I saw no blood and our daughter was talking. It was OK! We were very lucky by looking at the truck parts and debris strewn over the road. Everything was OK! Yes, it was all OK!!!
Then one of the guys was yelling; Med-Vac coming in! My wife looked at me and asked… WHY? I didn’t know. The responder told me where they were taking her. Why? I felt confused and powerless. Maybe it wasn’t OK.
By 5 am the following morning, sitting in the ER with some of our best friends, the ER Doctor told us that there were multiple fractures. Arm broken, elbow broken, collarbone broken. Both lungs collapsed at hospital. Ribs broken.
“But I want you to know,” he said, “our concern is that her neck was broken in three places. Some vertebrae are crushed, spinal cord is severed. As a result, she is paralyzed from the neck down. We don’t know at this point if she will make it through the next few days.”
The only good news was our grandson had no injuries; only a small scratch. God protected him!
To you in the SCI community, you will remember that the first news you heard of your family member Spinal Cord Injury was like a glancing blow from a very large blunt instrument that ricocheted off you. You knew something hit you but what was it? What does it mean? Then it pounds you over and over as realization of what just happened clarifies in your mind.
I have always been athletic, always active, always optimistic, and moving past minor injuries or even a broken arm. My daughter was the same. She was a U10 state record holder in swimming. A record that held for three years. She ran cross country in high school. Made state her sophomore year. She will be alright. Hard work and she will do it. It will all be fine.
Still, the doctor stated she was in deep trouble.
My wife and I along with two close friends, all four, knelt in the consulting room of the hospital ER and prayed. And cried. Cried hard!
There is an expression…. You don’t know that you don’t know.
We didn’t know.
Part 2 REALITY OF WHAT HAPPENED
Three weeks after the accident our entire family was still in a dull shock. Lack of sleep and overloads of information from doctors and nurses was mainly to blame. Relatives called often but we had no real meaningful conversation. After a few days I didn’t want to answer the phone. We were living day to day.
The doctors told us to start getting ready to take her home in a few weeks. We had NO PLAN! NO preparation for what was to come; we had no idea what the next step was? Well-intentioned advice was just so much meaningless chatter. We were too tired to think straight. The only time I saw my wife was when I relieved her or she relieved me from doing shifts at the hospital. Our income had all but stopped. (SCI family, I know you have experienced the same.)
A stranger called. He told me briefly that he was a friend of a friend and his wife had suffered a spinal cord injury several years ago. He invited my wife and I to his house to talk with him and his wife.
I cannot emphasize enough the importance of having timely advice! His first question to me was, “Do you want to care for her?” Of course, we did!!! She is our daughter!!! (I will mention that Molly’s husband vacated 11 days into the new life. So many people I have met with SCI have the same story. Care givers are a strong and courageous type person. The weak melt away). Looking back, this is the most important question someone new to SCI should consider. Maybe he should have phrased it, do you want to care for her the rest of your life. This would have been a more accurate question. He told me our lifestyle would be different; we didn’t know we now had no life except that which revolved around her care.
We still didn’t get it! My wife and I had plans to buy a small cabin in the north Georgia mountains for summers and maintain our home in Tampa or sell it for a condo on the beach. Perfect plan, right? Best laid plans of mice and men!
The next step was a visit to our home by our new friend and advisor. We were overwhelmed by what he said. Tear out your carpet, replace with wood or tile. Tear out this wall and that wall, make your doors wider with easy entry, drop the light switches down, and most important have a bath area for her that is BIG, with a roll-in shower and low sinks. Get rid of half of your furniture; it’s just in the way.
What small savings we had for retirement was quickly used. (Again…Best laid plans of mice and men!) We had fund raisers and many people stepped up to assist. Our new “guide” happened to be a member of the church we attended. He enlisted construction people, some company owners and some construction workers, to help with the plan of remodeling the home. Appx $80,000 over the last 10 years has been spent on the home with most going to making the house SCI friendly.
I never had to accept charity before this. Daddy always said you work hard and make a living; if you fall, pull yourself up by your bootstraps. It was a hard thing to accept these “blessings”. It was hard to know how to thank those helping. People really wanted to help, yet I didn’t want to make it look like we were working a system to get as much as we could.
I know I appeared ungrateful to some.
To pay it forward, we tried to connect and help other families with a SCI member. The takeaway to this was that every family circumstance is different. One story was a daughter (close to my daughter’s age) who had a spinal cord injury; she lived with her mom in a mobile home. The mom did not want to care for the daughter. Mom was quick to wash her hands of responsibility and said the daughter could live in a “facility”.
Our home renovated, we “settled” into an ever-changing pattern over the years. Our needs change, circumstances change, but our desires don’t. We still pray that one day soon our daughter will be able to get up to walk, run, and jump for joy and give praise to God. We want to be givers, not takers!
PART 3 NOT GIVING UP
Our relationship with our daughter as we approached our 10th anniversary living with SCI is one which held a mixed bag. There are major struggles and times of sweet family love. One struggle is to include our daughter in all activities for her children. Another struggle is meeting desires of all family members. How best to live a normal life... if it is possible.
Most inclusion issues to try to live a normal life means extra effort from the caregiver, getting up an hour or more before the rest of the family does. Getting the proper clothes put on her, doing hair, brushing teeth, finding shoes that match (finding anything that matches), transferring her to a chair, then to the car… all the while making breakfast, finding the soccer shin guards and the red shirt, not the white one!
We want a little peace, some down time that seems to come far too seldom. All this effects the individual family relationships. Not only caregiver to caregiver but between all family members.
You learn to be flexible when you are a caregiver. A caregiver is made of tough fabric. Many obstacles try to tear the fabric of your soul, your spirit! You cannot allow this!!!
I once played on an athletic team that lost every game in the season… heck we only scored once all year! Yet I remember each game we lost the coach would say, “Boys, we’re going to win the next game!” We believed it and went into the next game trying our hardest. It wasn’t until the following year and the year after that we were the victors! We turned into a good team, only a couple of years later!!! So, we must evolve!!! Victory will come!
Your family, your loved one will win. You just don’t know when or how. But it will be a great victory.
During WWII England was on the verge of capitulating. Germany had beat down the English people; all resources were scarce, food rationed. The English army was being demolished on the field of battle. Morale was low for those on the home front. Constant bombardment from the enemy day-in and day-out was taking its toll. Many English were saying that they were defeated and should simply surrender to the Germans and get the war over with.
Does this sound like you? Your family? Your loved one with SCI? Are you wanting to give up so the battle will end?
This is a war! This is a day-to-day fight. Most wars have a few big battles but most of the war is made of skirmishes, day to day worries or aggravations.
Let me give leave you these quotes from Winston Churchill:
“Never give up! Never give in! Never, never, never, in anything great or small, large or petty, never give in except to convictions of honor and good sense. Never yield to force; never yield to the apparently overwhelming might of the enemy.” (My question…. Who is the enemy in your situation?)
And if that does not inspire you, Winston Churchill also said,
“If you are going through hell; keep going!”
Part 4 14 YEARS, and, WE HAVE KEPT GOING! A CAREGIVER’S CONCLUSIONS
For what purpose have we continued to continue up this rocky road? Why does our family continue to fight, to make do with what we have been given?
It would have been… ummm, easy is not the word, nor is better the word. Although some would count it to their advantage to be ‘the easy or better way’ just to walk and never come back. Those people will not see the victories that will come with persistence and dedication.
So, what are our victories? Where do we triumph?
Molly has not gotten out of that bed, nor out of that chair a single time on her own. So, there is no victory you say?
Molly has become a ferocious reader. And with this reading has come new ideas, new desire, and hope in what can be, not what is present to our eyes. She has taken action through a transformation of her mind!
The question we now see is not how limited she is and what she is limited to do, but we are thinking beyond these boundaries!
Molly participates in a lot of activities a fully able person might not want to do. She has been sky diving three times since her injury, her last being a tandem jump at over 13,000 ft. That’s 2 and a half miles high folks!!! Old mom and dad jumped too but we were both sick to our stomach during the flight and after the jump. Molly was a happy jumper!!!
Molly was an instigator in starting a single mom’s Bible study along with a number of other women in her son’s Christian school. The group is growing.
Molly also keeps busy with numerous other events and organizations. These activities keep her busy volunteering within these organizations. She is composing a post explaining all that she is doing.
What victories can the caregivers claim? Although all is not smooth, neither is life. Although all is not love, neither is life. We claim our victory in running the good race, not a perfect race. We claim our triumph to be that we have run the race with the help of generous people who have become too numerous to list. We have learned to trust that God will provide. We have learned how to accept a generous gift and how to be
thankful. Thankful not only for gifts but that we too have become more generous in what we do.
Victories are numerous and we triumph, however short it may be, in the small as well as large victories!
Yes, as Winston Churchill stated, “If you find you are going through hell, keep walking.” We have chosen to run when we can and walk right on through this mess!!!