Perspective of Joy, Grief and Relief

There is a perspective that has come back to me again. 

When I am mindful about where I sit and who I am with, I take time to pause, watch and find out who I am, always and forever. 

Part of this came back to me as I remember the feelings that flowed over my soul many years ago. Here are those feelings for us to sit with for some time today, my friends. 

Look for what may be present for you as we go back in time to a previous yet always true perspective. 

Hold on gently as we begin, knowing that Dallin would now be 35 years old. He continues to show us that he will forever fly with us as the Tall One, and the bee who did things longer than others thought possible. 

Joy, grief, and relief. 

There are moments that are defined in my head with such clarity. The first is when our son, Dallin, was born 23 years ago. The joy that we felt at that time was incredible and new. The moments of each day went by with such ease that we were beginning to think we understood what was coming to us in the coming years. 

The joy of each day was brought to us as Dallin learned to walk and talk and start to become a fun and adventurous toddler. The next moment started the week before Dallin turned 2 years old: he started to have seizures with no known reason. The sudden grief at possibly losing our son to an unknown illness was overwhelming. 

Nine days were spent in the hospital doing blood tests, multiple MRI tests, CT scans, EEG test and neurological evaluations while Dallin was losing all his developmental skills including sitting up, eating, drinking, walking, and talking. He had become like an infant and was not expected to survive the illness. And then, he was walking the day after the doctors had stood around his crib in the hospital and said he would not be able to do so again. 

At this moment we began to understand how strong and determined he was!

At this moment we began to understand how strong and determined he was! An equal amount of relief was felt as this fact was sinking into our hearts and understanding: the relief of having Dallin with us still, the relief that he had survived a catastrophic illness, and the relief that we were going home as a family despite the seemingly huge grief of having lost the little boy we had before. The joy of having this new Dallin was, again, overwhelming. 

When we were sent home with Dallin, the seizures had been controlled with multiple medications, and he was given the following diagnosis at discharge: post infectious encephalopathy and ataxia. We were told that all of his skills would return in about the next 6 months and good luck. He wore a helmet while he was re-learning to walk and started to learn sign language so he could tell us what he wanted, like asking for the ever-important cracker. 

The following years included years of outpatient therapies, physical therapy, occupational therapy, and speech language therapy. Dallin was able to gain back many skills with hard work in those one-on-one settings, and then he let us know that he would rather learn in the ‘real world’ of doing things with other people than in the clinical settings. The fun we had playing as a form of therapy was joyful. 

He learned how to go horseback riding, downhill snow skiing, climb mountains, and ride adapted bikes. He liked to go to the store and follow a simple shopping list, interact with friends at school, help others who he felt needed even more help than himself, and we loved the moments and laughter that came to him and also, by association, us. 

This new obstacle was another thing.

Thirteen years after his initial illness, he started having difficulty with his muscles. As he had been progressing in so many areas in his life, this new obstacle was another thing we felt ill prepared to understand. 

This change in muscle strength not only affected his ability to do the many things he had enjoyed for years, but it also started to affect his mental health. We were seeing subtle signs of anxiety and occasional moments of what appeared to be depression.

Dallins’s loss of muscle strength led us to a new group of specialists including an additional neurologist who focused on muscle disorders, 

a blood specialist, 

a psychologist, 

a psychiatrist, and 

then back to genetic research. 

The diagnosis had then expanded to include static encephalopathy, intractable epilepsy, Factor VII blood disorder, anxiety, depression, osteoporosis, signs of early dementia, and still being non-verbal. The muscle wasting problem seemed to mimic a muscular dystrophy but one could not be found that matched the symptoms. 

How could this be happening? We looked for answers.

More questions came as we asked how this could be happening? What could be the cause? Who could help us find a way to stop it? There were many times we asked ourselves what to do next and what really was important. Many times we would do another procedure looking for an answer only to receive yet another phone call with inconclusive results. 

Each time we thought we found an answer to why Dallin could be losing muscle mass, we were met with unanswered questions and moments of grief as we considered what the future may hold for him. 

There were times that we would ask the ‘what if’ questions: What if Dallin needed a wheelchair at some point? What if we could not find a way to reduce his anxieties? What if he was not able to do the things he enjoyed? What if what if what if … 

Finally, this brought us to the moment when we remembered that Dallin was still with us and that we needed to and got to hold on to each incredible moment! Dallin was the one who helped us, again. He would literally hold our faces in his hands and look directly into our eyes as if to say: are you paying attention? Do you see that this moment is the one to be in? 

At last, we were back on track in seeing the joy that was right in front of us. The next few years were given to us as a time to find a bit of relief in the stressors that had built up. We were able to find medications that helped with new seizures and ones that helped with Dallin’s anxieties and depression. 

Could our perspective change even more? Accommodations were coming into place.

We were able to create a partnership with the school IEP team that allowed Dallin to receive home/hospital education services for the days when his loss of strength and endurance did not allow him to attend school. At one point, we knew it was time to find a home that was wheelchair accessible. Dallin had started falling and had missed steps while going into the lower level of our home. In a matter of months, we were able to find a home that was exactly the size we needed, including the size of hallways to support wheelchair use, bathrooms that had grab bars, and the ability to know those who could make other small accommodations to the stairway safety.

The relief of being able to work with others in our family, community, and disability organizations we know was immense and powerful. At each step during this time, we would sometimes look at our little family and again realize there were great things happening around us in spite of the muscle loss and moments of confusion that were still in Dallin’s world. What happened next was almost a blur and yet another set of moments that will always stay with me. 

Dallin continued to lose muscle, his anxieties increased as he seemed to lose cognitive skills, he had moments when he did not know who we were and it looked like dementia was being added to his list of things to be aware of, seizures increased and were triggered in almost every way including his favorite thing to do: going for a car ride to look for school buses and trains. It seemed that our world was getting smaller and more controlled by the medical changes in Dallin … and yet! 

We were truly finding the moments to pay attention to the things that mattered, being incredibly okay with the smaller world we were living and not being a part of many of the things we thought had been important before. 

Why would this be happening? A palliative care team had asked me one powerful question during an appointment. The question was: How long do you think you can do this? Meaning, how long can you make changes to your home, work, daily schedule, extended family interactions, community involvement? The answer that came to me was that I could do all of that and more for as long as it was necessary to help Dallin. And then the real question came to me: how long could Dallin’s body do all that it was going through? 

Intense grief washed over me. My perspectives were changed.

At that moment the most intense feeling of grief washed over me as we all realized that Dallin was almost done. Maybe weeks, maybe months but his incredible being was almost done. Within days we were in touch with hospice care and doing what we could to reduce the anxieties of this next phase of our journey with Dallin. 

We had planned for what would happen if Dallin outlived us with a special needs trust but now, we had to plan what we would do as we outlived Dallin. Of all the absurd thoughts to have come to us! 

80 weeks ago, a new reality did come to us. 

Our Dallin woke up one morning, gave a huge hug to his dad and used sign language to tell us that he was finished. What else do you say to this except that this was ok and not ok all at one time. Dallin was always in charge and had always been the one to tell us when he was done. Dallin passed away that evening, and we were able to be there with him at home for the entire experience. And then it was like the oxygen was sucked out of the room. 

The thought that has been with me and my husband since then is yet another sense of relief and not one that will sound reasonable to most people, but it may sound familiar to a few other family members of a child with a disability. 

Joy, grief and relief will stay with us forever.

The relief that we feel is not about having our time back, not about being able to sleep 6 hours in a row, not about being done with caring for a person who needs total care. It is the relief of having been able to be the ones to have cared for our amazing Dallin for all of his life. The ability to do all that was necessary for as long as we got to was incredible and powerful. The unbelievable amount of grief that has come to us since Dallin passed away has been life altering. The realization that the years of joy with Dallin were what it was all about helps us to do what we need to know for ourselves and others. The memories of the fun and hard times along with the things we learned from Dallin about joy, grief, and relief will stay with us forever. 

Previously printed in the NADD Bulletin in the Family Corner is an ongoing column in The NADD Bulletin and is published under the auspices of the NADD Family Issues Committee 2015.