Karen's Story: The Birth of 4 Paws
A Dream Begins
I can still clearly remember the day I envisioned 4 Paws For Ability and began the journey toward a dream that would help people like me who had to live with disabilities. It was fall, and my service dog, Ben, and I sat behind our Ohio home watching the leaves drift lazily from nearby trees.
My despair as a young woman with Myasthenia Gravis (MG) had finally disappeared because of this amazing dog’s qualities. The struggle to get Ben was worth every shed tear and every gut-wrenching disappointment along the way.
No longer on a ventilator all the time, I watched him play, and began dreaming and planning for an agency where anyone with a disability would not be turned away.
I thought of the long waiting lists many agencies had. I knew there were people with disabilities who would rather work to raise the money for training than sit on a three-year list waiting for a free dog.
And who could have known the rest of my dreams...the silent ones?
Children. A family.
In 1987, I was a carefree young woman, going to school to become a social worker. In addition to my full class schedule, I worked full-time in the field of developmental disabilities. Like most college students, I existed on little sleep and was always tired. Looking back on that time, it is easy for me to see the progression of the disease, but at the time I shrugged off the symptoms, blaming them on my full schedule.
Slammed by Myasthenia Gravis
All of that changed when difficulty breathing became respiratory arrest. From that day forward I began a life journey far different than the one I envisioned in those early years. The disease hit hard and fast. It quickly robbed me of any meaningful life. Long hospital stays wore heavy on my relationships with others and all but my closest friends disappeared from my life.
In 1994 I had been dealing with what was diagnosed as Myasthenia Gravis, a rare neuromuscular disease, for almost seven years. Treatment had not been effective, and the disease hit again, this time robbing me of the will to live.
A friend of mine tried to find an agency to place a service dog with me, but agency after agency turned us away. It seemed that these agencies with their long waiting lists had developed guidelines that often excluded those they deemed too disabled or not disabled enough.
I spent much of my life at that time respirator dependent. The responses from the agencies were always the same: there were others who had more ability than I, or others they felt their dogs would assist in reintegration into the community.
Finally, one agency accepted my application and placed me on their waiting list. Eighteen months later they called to tell me they had a match, and they sent a woman out to see what tasks the dog would need to learn. Two weeks later I received a letter in the mail:
"We are sorry," it said, "but our agency guidelines prohibit the placement of service dogs with people who use ventilators."
Why bother staying alive?
Prior to the meeting I had allowed myself to feel a little hope. It was exciting to think of a dog that could, at the very least, allow me some time alone, with the dog being able to accomplish many of the tasks being performed by my personal care assistants.
When that letter came, I gave up all hope. I had often thought of ending my life. In fact, I had saved enough morphine to accomplish the task easily. When I looked at my life, all I could see was death, a long slow death, with each day robbing me of some little pieces of ability I had held the day before.
I now refer to those times as the days of death; it saddens me that I lost such a large chunk of my life. I also see how lucky I was. I had a close friend who refused to watch me die. She dragged me from place to place looking at puppies, trying desperately to get me to once more cling to life and to find the courage to fight for that life.
Ben: The Magic Begins
I had no desire to get a puppy. I couldn’t care for myself; how then could I train a puppy? I’m not sure what happened the wonderful day that my service dog entered my life, but when I spotted him and he looked at me from the back of his pen, the magic began. I took that thirty-pound, black bundle of fur home and gave him the name “Ben, My Courage and Friend.”
I did not jump right back into life, but with Ben supporting me I inched closer and closer to life each day. As Ben grew, I faced new challenges. I learned quickly that very few agencies are willing to train an owned dog.
Ben and I had been attending classes at a local dog training school and he was quickly approaching the need for advanced service dog training. However, the club was helpful. Some of the volunteers worked with me, teaching me how to train for retrieval work. I applied to a dog training school in Columbus, Ohio, and they were willing to help.
One of the student trainers worked with Ben, and taught me to train him at home, and train we did! In 1996, I returned to work, with Ben right at my side!
With every day that passed I gained more confidence in living with this disease. I know there is no cure and I know my days are numbered, but with Ben I began living each and every day, and not missing a second. As I grew spiritually strong and looked back on the days since that first respiratory arrest, I found certain sadness there.
Each nigh,t as I watched Ben sleeping at my feet, I wondered how many others there were who needed the same miracles that Ben offered me. I wondered how many others were turned away because they didn’t fit the service dog agencies criteria.
Envisioning 4 Paws for Ability
4 Paws for Ability, Inc. was created with Ben at my side. He was there when I got the incorporation papers in the mail. He was there at the first board meeting, when I looked at those 12 people who would help make my dream a reality. He was at my side when I went to Children’s Hospital to tell a twelve-year-old child who’d had a spinal stroke that left her paralyzed that she would not be turned away because she was a child.
4 Paws grows daily. We’ve watched many dogs become service dogs and have placed many dogs with children. The results have been miraculous. Families have gotten their lives back. In those first years, we saw the following:
- One child with autism is now safe from the dangers he might face when he wanders because Patches can track him within minutes.
- A woman in New York traveled to 4 Paws, here in Ohio, to get a dog for emotional support. Ben was there when I read the letter, which said she had made her first trip to the store alone, and had no panic attack, but then she wasn’t really alone: Pepper was at her side.
- Katie, a ten-year-old with seizures, slept in her own bed for the first time with Roxie beside her keeping watch. Roxie will bark if Katie has a seizure so Mom and Dad can come to help.
- A mom in Anchorage, Alaska says, “Our family is absolutely overcome by how much Halo has changed our lives. I just wanted to thank you for making our lives so much better, for putting the joy back into our days. You really did. My goal for Leo is just that he can be happier. Halo does that, she makes him happier. I don’t know if I told you this yet or not, but he is sleeping in his own bed the entire night. For the first time in four years.”
With each new ability I lost to MG, Ben learned a new skill to help in that area of need. I credit Ben for saving my life twice.
- The first was when he came to my life as a puppy and brought with him the magic, which gave me the will to fight again.
- The second was after open-heart surgery when I returned home on a morphine pump and a deadly combination of medications left me barely conscious and fighting for life. When the phone rang, Ben, who is trained to retrieve it on command, picked it up and lay it beside me. He then began to bark. It was my dad who called and he knew right away that something was wrong. If Ben had waited for a command from me, the answering machine would have come on and most likely, my nurse would have arrived the next morning to find me dead.
Ben diagnosed with Degenerative Mylopathy
After almost eight years, my Ben was diagnosed with Degenerative Mylopathy, a neurological condition that causes progressive paralysis in the back legs. There is no real treatment and no cure. We spent a horrid week at Ohio State University only to walk away with the words, “There is nothing we can do. Retire him.”
Holding to the hope that it would slow the progression, I followed their advice and retired him. When he walked he dragged his feet and the toenails were ripped open. I saw no alternative. Ben, stepped up to the plate. He had walked beside me as I fought my disease and the lessons he has taught were not to end there.
In April of 2002 I took Ben on a week vacation to experience his final moments of life with joy, and then, with a final walk through the 40 acres of woods which had been his kingdom for most all of his life, I helped Ben return to a place where all dogs run and play, where there are bones growing on trees, and treats fall from the sky.
Ben lives on in the hearts of everyone who met him, yet none so strongly as mine. While other dogs have come to walk beside me, none will ever quite be able to walk in his pawprints, and none will ever fill the gap in my heart waiting to be filled once more when I join him at the “rainbow bridge.”
Time to Adopt
My turnaround as far as Myasthenia Gravis took about three years, between 1997 and 2000. New meds played some part in it, but I believe the largest factor was my desire to learn to live with it, as a lot of success with this disease depends on the people learning to budget their energy and manage their day.
As I became stronger and better able to manage my energy, I began thinking about adopting a child in 2001. I started the process the next year. I had always wanted children and I believe God had a huge hand in it.
I never thought I could do it financially, but we had a client come for a dog for her child, who was adopted from China, and seeing this child (Maddie) and hearing her story about adoption, I realized I could do that!
Benjamin Aaron came home in June 2003. I first met Aaron in 2002 when someone from the agency sent me about 20 pictures and bios of children, along with her picks on who would be best.
When I saw Aaron, who was Bulgarian, I knew he was my child even though he was not one she picked: they believed he needed extensive surgery. It ended up he did need minor surgery, but nothing else.
Aaron’s full name is Benjamin Aaron Shirk. My sister thought it was weird to name him after my Ben, but I feel it was an honor for him to have Ben’s name: the name of a hero. However, once we met I ended up calling him by his middle name, a strong Quaker name with important family ties.
Aaron was an extremely bright boy, with a very high IQ only four years into the adoption (he came at four years speaking fluent Bulgarian). As second grader, he read at almost a fourth-grade level, and tested into third grade in almost every subject. His reading testing placed him in the top 5% in the country!
Of course this made him challenging to raise...but then, I love challenges.
He is so much like me it is scary. I don’t think I could have a biological child that was this much like me!
When I decided to adopt again, I wanted to adopt a healthy baby; they told me Bulgaria would not allow me a baby referral because of my disability.
That stunned me, until they explained that the only reason they gave Aaron to me with my condition is that they felt no one else would want him.
From Bulgaria to Haiti
I started looking at other countries, and ended up with Haiti. Haiti is a country few choose. Most families adopting internationally want white or Asian babies, and do not want to deal with Third World countries.
I discovered that the number one cause of death in Haiti is starvation. No Haitian child has any chance for a life there.
Elijah was referred to me when he was four months old. We did not know then that the political unrest would delay my adoption almost two years.
I expected him to be home by 18 months; by the time he was with me, he was almost three.
He was a delightful child who knew very well how to throw a proper two-year-old tantrum! (That was quite amusing to everyone but him.) I started visiting him when he was nine months old so I got to watch him grow up.
His mother still visits sometimes. She could not feed him and wanted him to have a life in America where he could get an education and be someone.
She wanted him to be my son...and he is very much my son.
Isaiah & Nerlande. On a visit at the orphanage with Elijah, a little boy kept coming up to me and sitting beside me. I looked into his face and felt strongly I should adopt him also.
I can’t explain the feeling.
There were 270 kids there and no others caught my heart like Esaie (Isaiah in English). They had warned us not to fall for the children, since they almost all had families already. So I just spent time with him and played with him.
However, the feeling would not leave me. It got stronger and stronger. Isaiah left me for a few minutes and came back bringing a quiet, shy girl to meet me. I thought it was cute that he was introducing me to his friend. Then I heard someone say they needed Isaiah and his sister for a picture, and when I saw him beside the quiet, somewhat older girl, I knew he was asking me to adopt him and his sister.
Sometimes language is not needed.
The three of us could not communicate verbally, but he knew that he and his sister belonged with me as much as I knew they did.
So, I got up the courage to ask, and the translator spoke to the children and then said to me, “They already have a mother coming.”
I was devastated that my feelings were so wrong. I was sure God had led me to them and that they were my children not some other mother’s.
About 15 minutes passed and I saw the kids talking to the translator. He came to me and said “I was wrong. I thought the children said they had a mother coming but they do not. They actually said they wanted you to come for them as their mother.”
I was elated.
As soon as I got to the U.S. again, I started the procedures to add Isaiah and his sister Nerlande (I gave her the name Isabelle) to my family. I visited with them three times and they were awesome kids.
Isaiah was athletic and a sweet, sensitive boy whose feelings were easily hurt, and he loved his Mommy. He loved to sit with me, sometimes on my lap, and snuggle. He was very good with his little brother, Elijah, always sharing his candy and toys with him. Isaiah and Aaron are only three weeks apart in age.
Once a little girl who did not do her hair or take pride in herself, Nerlande transformed with the knowledge she now had a mom who loved her. Soon, beauty shone from her and her pictures showed a beautiful girl with a smile full of joy. Nerlande loved school in her home country, and loved going to her new local school in her adopted country.
She also loved being in charge of her brothers!
Isaiah and Nerlande are biological siblings. I knew nothing of their background, but I knew their life was difficult. I could see it in their faces when we first met. They had been in another orphanage after being brought in from the street.
I don’t know why they were on the street, but the death rate is high, so I assume their parents had died or abandoned them.
The orphanage they lived in was run by a man who was murdered, so they asked Foyer De Sion to take the kids. No records were available/kept, so there was no history on these two precious children.
Hopes and dreams for my children
My hopes for my children is that they will grow up and have a place in the world where they can make a difference in other people’s lives. I want them to have the opportunity to be who they are meant to be. To foster who they are and to see that all their needs are met. Here in America I know they have that potential.
I personally did not feel I wanted to have children myself when there were so many unwanted, starving children who needed families.
There is no way any child I might give birth to could be more loved than my children or be more a part of me than they are. I believe they have always been my children, but that they just came to me in a different manner.
God sent them to me just as he would a birth child, and they were meant to be mine as I was meant to be a part of them.
Today my older kids are grown. Aaron and Isaiah have their own homes and their own lives. Nerlande while still at home has a job and her own life. Elijah however, has Autism, Severe ADHD, and MH issues. Living and learning with him every day has given me a whole new perspective on our families' lives. Nobody understands more than I do of the struggles they face every day, the looks from people in stores when their child is throwing things off the shelf, the frustration of having an almost adult child who needs supervision 24/7. The cameras throughout the house, the endless IEP meetings and calls from the teachers. Watching their kids and fully understanding they have no friends as your heart breaks for them. It has renewed my conviction in how important it is to bring a service dog into homes like mine so ease a parent’s heart a little and help a family cope. There is no question that service dogs change the lives of their partners and with the child placement they change families too!