Before Elizabeth was even born a group of doctors stood around my hospital bed and asked me to make a decision about a child, my child that no parent should ever have to make. I didn’t have months or weeks or even days; no I had minutes literally minutes to decide if my child would live or die. And it’s the one question I get asked more than any other – if you could do it all over again would you do it differently? The answer is no, the answer is always no. I wouldn’t change her for the world, but I would change the world for her.
I have 4 children and growing up the sibling of a special needs child will be the most challenging task I will ever ask of my kids. As parents we want the very best for our children, a better life than what we had growing up. We make sacrifices, we give in when we know we shouldn’t. We worry, we pray we do the very best we can. We fail, we apologize and we start over again. This rings true as much for Elizabeth as it does for her sister and brothers. I have always said that I would raise all 4 kids the same; no special treatment and everyone will have the same opportunities, the same attention. So how do you make that work? How do you give a child like Elizabeth the same life you have planned out for your other kids? I will never forget the first time the doctors told me Elizabeth will never …. and then they rambled off a long list of activities every child should have a chance to be a part of. Medically, they were right and to their credit they did not know me very well yet but it wouldn’t take them long to know Elizabeth would live a life like no other even if it meant doing so from a wheelchair.
It was easy at first. She was so tiny, her chair was little and getting her around didn’t come with a lot of challenges. It was really no different than the others kids and their strollers. Elizabeth was also very happy as a little girl. She loved being out and around other people. Her medical needs were minimal and honestly I think she thought she was just like everyone else. But as she has gotten older this has drastically changed. She’s grown which means her chair is bigger. We have diagnoses which limit her to her surroundings. She has sensory issues and she cries, she screams, she has seizures. We have dozens and dozens of medications to help keep her calm but she lives in a total fog still crying, still screaming and still seizing. I just see this girl in front of me drugged, zoned and needs my 24 hours a day, 7 days a week attention. So what do we do? We become prisoners in our home isolating Elizabeth from a life she once loved. As the other kids come and go she knows. She knows she’s different and can’t have the same life I set out to try and give her. In this moment it would be so easy to give up. To just live life in this house, in a constant medicated fog watching things go on around us. I had a plan for her life but what happens when the plan no longer works? What happens when all the science we have to offer fails her? Sometimes what we need is a new plan.
Once again I found myself surrounded by a team of doctors telling me I had a choice to make about Elizabeth’s life. Specialists, nurses, therapists all distraught and completely worn out from years of trying to figure Elizabeth out; trying to help me give her that life I promised her and she deserves. This team knows me. They know I will fight for Elizabeth at all costs. This team knows we don’t give up … ever. It had to be an out of the box plan. No more medications, no more therapies, no more surgeries and no more doctors added to this already full team. We have spent 17 very long years in and out of clinics and hospitals and this needed to be a plan that did not involve any of the above. It needed to allow Elizabeth a life of inclusion without limitations. It needed to give her a sense of independence but still keep her safe. It would be my last effort in fulfilling the promise I made that would allow her a life as equal to that of her siblings. It wasn’t going to be easy and it was going to take both a huge physical and financial commitment. I could provide the physical part but there are very few people that could take on the financial side of this. I don’t ask for help, ever and that I think I have well established with y’all. It’s ironic – the majority of my adult career life I have spent listening to others and their stories of need offering help and being able to provide it without much hesitation from others. I was recently told that I am persistent; like really really persistent! I loved helping people. I loved being able to call someone who truly felt there was no hope left and tell them that we were able to give them the one thing they thought they would never have. I had a sign in my office that said “everyone has a story” and it was my job to listen to it. But now it’s me … I am the story. Actually, it is Elizabeth’s story but I have been give the responsibility to tell it.
The plan, the out of the box idea would be for Elizabeth to have a service dog. This is not as easy as it sounds although I was completely delusional to how this would work. Here’s how it went in my mind; buy a dog and train it. I am going to pause here for a minute because there are some reading this who just fell out of their chair. Gather yourself, maybe get a drink because it sounds like you might need it if that’s what I thought was going to happen! I set out to find the perfect puppy for Elizabeth as it was going to take a very unique and special dog to take on this important role in her life.
Last summer a silver lab was born in Blue Grass, Iowa by a sweet Mama name Kiara at River’s Edge Labradors. She would be the tiniest of the bunch and I knew I had to have her. There was question if she would even live through the night so I watched and waited for updates before reaching out. They would call her Tinkerbell. There were days it sounded like Tinkerbell would live and others when I would be thrown back 17 years to when we would sit and wait for Elizabeth to make it through the night hoping that the promise of a sunrise would mean we would have another day with our girl. I couldn’t wait any longer and finally reached out and shared Elizabeth’s story with a woman by the name of Wendy and told her I wanted Tinkerbell. Elizabeth and Tinkerbell’s story was so intertwined that I knew they belonged together. Wendy explained to me that it was too early to know if Tink would even live or if she would have a life of health issues that may be too much to take on. We agreed that she would update me as much as possible with the good, the bad, the ugly and would not sugarcoat a thing. If and when the puppy looked like she would survive we could talk more about the future. Wendy and I became more than just a breeder and a potential dog owner. As she heard more and more about Elizabeth’s story it seemed as if she had been given a specific purpose with Tinkerbell. She shared about the long nights she sat holding and feeding this tiny puppy; warming her and taking all measures to make sure she lived. When it was time for a weight check Wendy posted that Tink had weighed in at 1 pound and 3 ounces; the same weight of Elizabeth at birth. I knew at that moment she was going to one day be ours and she and Elizabeth were going to accomplish great things together. I told Wendy of my plans to make Tinkerbell Elizabeth’s service dog and 2 months later I found myself in the middle of a living room in Blue Grass, Iowa holding the greatest gift Elizabeth has ever received.
To honor the name Wendy gave to this miracle puppy I chose to call her “Bella” and what an adventure it has been with this girl! Her bond with Elizabeth was instant! She loves to jump on her chair, lick her face and makes sure she is the first one to greet Elizabeth every morning. So let’s go back to the statement I made earlier, the get dog and train one! I don’t admit defeat often and rarely back down from anything someone tells me I can’t do but this one I was way out of my comfort zone on. I was going to have to ask for help and thought again, just a few sessions and Elizabeth will have her service dog and all will be well again in Elizabeth’s world. I reached out to a seriously amazing group called Joint Forces K9 Group for some direction. As I rambled on for over an hour about Elizabeth and Bella and their story I was asked to come in, bring them both and let’s just see if Bella would even qualify for such an important task. I knew taking Elizabeth was going to be challenging and was really fearful of how she would act in her new surroundings and how this team would react to her. As I sat trying to talk Elizabeth did exactly what Elizabeth does. She began to cry, scream and become extremely agitated. I tried to hold her hand, to talk to her and apologized more than I should have. I felt completely defeated. I felt that familiar sting behind my eyes and just wanted to grab Bella and wheel Elizabeth right out of there. But something happened that I wasn’t quite expecting. One of the trainers brought in a dog that is already in training to see Elizabeth. As the dog approached her and sat next to her chair Elizabeth immediately quieted down. I was able to move back and allow Elizabeth to feel comfort and safety from her new friend. This is something I have never been allowed to do as usually by this point we are minutes away from a massive seizure and 911 call. I couldn’t believe how calm she had become and how she didn’t even look to me for help. The team explained that they needed to see Elizabeth react this way to know if she would benefit from a service dog as not everyone does. The atmosphere in the room and the conversation shifted to total work mode and what areas to train Bella. They asked me what was most important for Elizabeth and I and then added their ideas. My new plan, my out of the box plan was being put into motion and for the first time in a long time I began to feel like the promise I had made to Elizabeth was going to become a reality. It was such a rush of emotions to know that Bella could be trained to give Elizabeth a life that would allow her to be a part of our community.
Bella will begin training on May 4. She will be gone for 10-12 months and after her initial obedience training our trainer will work very closely with Elizabeth, our family and her school. Bella will be trained to provide comfort for Elizabeth by applying pressure at different points on her body when she becomes upset. Because Elizabeth has no use of her arms, Bella will be trained to open doors for Elizabeth and also place Elizabeth’s arms in her lap to ensure she is not harmed when going through doorways. Bella will be trained to alert me or other caretakers when Elizabeth has a seizure and then protect Elizabeth from hurting herself during the seizure. Bella will allow Elizabeth to come off the dozens of medications I have been forced to use that keep her in a medical induced fog and is causing kidney and liver failure. Bella will go to school with Elizabeth, will allow Elizabeth to join her family in a restaurant and help ease her anxiety when we attend doctors appointments. Bella is going to change Elizabeth’s life. However as I said earlier, training Bella comes with a great financial responsibility and I need help with that. It will cost $30,000 to train Bella. A GoFundMe account has been set up and let me tell you this is by far the most difficult and humbling thing I have ever had to do. I have spent 17 years making sure Elizabeth has everything she needs and that at times has come with great sacrifice. But I can’t do this by myself. I believe I live in the most giving community there is and would invite each of you to become a part of this amazing journey. Elizabeth and Bella are going to change the way we see people with disabilities. They are going to be the example we all need to accept everyone for their differences. So ask me again, if I had the opportunity to do it all over again would I change anything? Would I have made a different decision about her knowing that this is the life she would have? The answer will always be no.
Included for your convenience is a link to Elizabeth and Bella’s GoFundMe page. Thank you for your support of this incredible journey!