To more fully appreciate the miracle in this story here are some key facts about Joseph.
Joseph is three years old. He has a very fun sense of humor and a heart melting smile. He loves music, lights, and books. He is very aware of his surroundings and whose company he is in. He typically takes a long time to trust new people. Joseph has been diagnosed with a neurodegenerative disease called Leigh’s disease. This is a complex disease that, among other things, has left Joseph unable to talk, walk, swallow, or have purposeful movements with his arms and hands. The doctors believed Joseph would only live to age two “at best”. We have been very blessed to now have a very cheery three year old. This also places us in unknown territory for treating the symptoms of his disease. We’ve been able to manage side effects like seizures and nutrition issues but have maxed out our medical options for his anxiety. His limited communication and mobility has made cognitive testing difficult and brain scans have confirmed damage which leads one to wonder just how much he is able to comprehend and understand. One thing remains very clear. Although he is unable to verbally or physically express his emotions, they are still very real. He, like all of us, has opinions and preferences. He feels anger, worry, pain, and love. The tricky part is finding ways to express things to him in a way that he can understand. His anxieties stem from many possible reasons and trying to explain to him, in words, who doctors, therapists, family, and visitors are; as well as, why he is undergoing various treatments has proven unhelpful. He is taking a list of medications, a few of which are targeted to helping him relax and calm down, but we have reached our limit of what would be safe to give him. Many of these medications have less-than desirable side effects…. After failed attempts with herbal, aroma, music, water, and various other remedies- my husband and I were convinced that there must be a better way to help Joseph…
This is where Therapy Animals of Utah comes in.
I began wondering about animals… My husband and I have both felt powerful connections with pets growing up and have seen service animals able to aide their human counterparts- even at the hospital where Joseph receives his treatments. Could there really be an animal out there that could be reliably gentle with Joseph? One that would tolerate an involuntary fling of his arm? Wouldn’t get distracted by his wheelchair? Or one that could even patiently withstand the chance of his grasping a handful of fur and being unable to let go? Could there be such an animal that could visit Joseph in the comforts of his own home to limit the threat of over stimulating him with a new animal in a new environment? Attempts at finding such an animal through friends and their beloved pets proved not only ineffective but damaging as Joseph now had a growing fear towards animals from these encounters… Maybe this was a bad idea. But wait…. Maybe there is an agency that provides services with well trained animals…? I began looking around online. After weeding through some crazy looking sites, I narrowed my search to “therapy animals”. I came across the Therapy Animals of Utah site and my heart leapt! But from everything I could find there were only mentions of animal visits to hospitals, libraries, and schools… not in home. I decided to stalk them out on facebook to see if I could learn more… they have a facebook page! Yay! It was a long shot, but I had nothing to lose, so I sent a private message to the facebook page asking about the possibility of an in-home visit with Joseph and one of their animals. I received a very kind response back directing me to their director Deborah Carr, with her email address. Well, they didn’t say yes, but they didn’t say no! I emailed Debbie explaining our situation. The interchange of emails back and forth with Debbie are ones I plan on keeping for forever. The amount of love, understanding, and willingness to accommodate and help my son was astounding to me…. We had a few therapists coming out to our house to work with him at the time and it was mutually agreed with all parties involved that a therapy team would come to the house along with his therapists and we would see what happens.
Here is where Lesly and Chelsea enter into our story. Now, just to warn you… I have gained an immense respect and love for these two and am bound to gush out some gratitude in their specific direction, but I don’t mean to neglect any of the incredible work every member or TAU selflessly gives. I’m confident Lesly beautifully represents the love shown by everyone working to help others through the incomparable human/animal bond and just want to be clear that anyone associated with this amazing organization has my absolute love and respect.
I will never forget when we first met Lesly and Chelsea, nor Joseph’s reaction! He saw that beautiful collie enter our front door and…. he couldn’t look away fast enough! He became very uptight and anytime we brought Chelsea alongside his chair he would turn his head away and pull his hands, as best he could, away from touching her. I remember thinking it would be a huge success if we could even get Joseph to look at her! We did have that success, and so many others in the visits to follow. I remember the first few times Joseph’s arm would suddenly fly into Chelsea and the look of terror on his face, no doubt fearing how she would react. Her consistent reliable demeanor began to work its magic on Joseph. He knew her. He trusted her. I would show pictures to Joseph of him and Chelsea in between her visits and loved watching him smile and try to touch her. He remembered her. As time went on I began noticing the therapist’s reflecting my own observations when mentioning in their therapy notes the undeniable impact Chelsea was having with Joseph and his improvements. With his disease- digression is always expected. Chelsea enabled progression in ways that has shocked Joseph’s doctors. We had hoped Chelsea would help lessen Joseph’s anxiety, but hadn’t considered the doors of capabilities that his new found calm confidence would open. His head control improved, eye gaze tracking smoothed, and he was even able to bear his own weight through his legs with stability assistance for the very first time in his life! Joseph’s hands are very sensitive and Chelsea has helped him increase tolerance to touch by not only feeling her soft fur but being allowed and aided by Lesly to feed Chelsea treats. Chelsea is an incredible dog. The more I’ve thought about it the more I’ve come to realize that where I try to use words while communicating with Joseph Chelsea has formed a deeper level of connecting with him that requires no words at all. A speechless understanding, if you will, has taken place between them. Not only has Joseph shown his trust of Chelsea but she has shown no sign, that I’ve been able to detect, of nervousness around Joseph. She knows the cushioned mat that Joseph likes to stretch out on, finds her place next to him, and has even rested her head on his side, which he absolutely loved. On a selfish note, Chelsea turned Joseph’s therapy sessions into “mommy therapy” for me. Her presence brought a peace into our home that was felt by all. I had to fight the temptation to not curl up in her pillow soft fur and take a nap every time they came to visit. I know Joseph was their focus, but they just couldn’t help but bless us all. All of our children know Lesly and Chelsea by name and are ever wanting them to come and visit.
Lesly won’t like the spot light but the entire success of this story has been because of her. From training and caring for Chelsea to taking the time and work she has to come to our house- she is the very embodiment of compassion. It quickly became common place for Joseph to gaze back and forth from Chelsea to Lesly and to smile at them both. When Lesly would speak Joseph would eagerly turn her direction and either look into her eyes or watch her beautiful nails flash about with hand movements as she spoke. Lesly and Chelsea are truly a team in every sense of the word and have been a powerful force for good for our family, not to mention an absolutely irreplaceable influence in Joseph’s life. The fearless love that Lesly has shown us from the very start has honestly changed the person that I am.
I too have a speechless understanding of the miracle Lesly, Chelsea, and TAU have brought into our lives. I don’t have the words to express what it means to have such love and individualized help so freely given to my son. Nor can I begin to explain the worth of the changes taken place within Joseph and myself. Never once were we asked who our healthcare insurance provider was, what our income was, proof of doctor’s documentation in order to qualify us for visits, and we have yet to receive a bill for these life altering services. (I’m sure no amount of money would pay back justly) I know the words “thank you” don’t begin to suffice, but thank you. Thank you… so very much for all the sacrifice, work, time, and love you all put into blessing the lives of others in a way that simply cannot be accomplished in any other fashion. I too, like Joseph, have developed a feeling for Lesly, Chelsea, Debbie, and TAU that I am unable to express, but please know- despite my inadequacy to communicate it, the feeling is very real. We love you! – Contributed by Joseph’s Mother
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