What is your comfort zone? I have spent years in a lively and lovely comfort zone. 

With my feet propped up, reading to learn more about a need of the day and leaning into what comes next. 

I also realize that walking alongside each of these were times when I could find discomfort as I also saw myself standing up to do more than I thought possible. 

What did this look like over the years? 

Propping up my feet could look like I was taking time out from a checklist of things to do, or it could be making time to act on one or two things that became second nature to me. 

Meditating is one of those things that became a part of me.

Meditating is one of those things that became a part of me.

It became part of how my comfort zone came to show that it could become a way of every moment in my day. 

There were three steps I took to bring this part of me forward. 

First, I learned to calm my breath. 

Breathing in then breathing out with consistency as the world around me swirled and whirled. 

I found that breathing was key to meditation while I ran the roads in the city. 

Then, taking a breath was what helped me create a walking meditation as I flowed in and out of medical appointments with a small one as he grew. 

As he grew and the medical world became more complex as our son recovered from his first illness and the walking meditation became a part of my breath. 

Finally, I found that meditation is in each moment. 

Even when standing in place with my feet planted and next steps tentatively taken. 

Taking a step seemed to take me back to my first calm breath and the three steps would begin again. 

This is how walking meditation began and continues.

This is how walking meditation began and continues for me. 

This second nature stays with me now.

Regardless of how uncomfortable I am as our son is no longer with us. 

Alongside the discomfort that also props me up when deep moments of learning come to show me what I can do next. 

With the grief that is here, ongoing, tentatively showing me what can happen with love, missing and resilient joy.  

Resilient joy is now not something I create with a checklist in front of me. 

It is something created and found with small glimmers of everyday moments. 

When I take time to look up to see clouds float over a mountain, blue sky with bright white light just after sunrise, or one bird that stops to say hello in the morning. 

Moments that come through when I’m in a zone of learning, leaning in with curiosity.

Moments that come through when I’m in a zone of learning, leaning in with curiosity and possibility. 

Could it also be a time learning the power of yet? 

When I don’t know how to do something then that is a time to say I can learn more knowing that there is still time. 

That I am resilient, can embrace challenges and persist. 

Doing this with a walking meditation is what I now know can bring more to a comfort zone. 

It is also what I am doing now as I remember that strength is built in more ways than physically.

Being strong allows me to be strong physically, mentally, emotionally and spiritually.

Amazingly and joyfully, this all has brought me to a place where I am living with daily walking meditation in a comfort zone. 

A zone that also allows me to walk through whatever comes next. 

May you also find your space and place with resilient joy and strength.

I stood back recently as the experiences from a lifetime came back to me. 

This quote came next and allowed me to sit with moments that I’ve lived with in more than one setting. 

Perspective is what allows us to step back and see the entire forest instead of just the same old tree we keep running into again and again- Bill Crawford 

This writing is what came next as I stepped into the room with other parents. 

Even when I was asked if I would be taking off my parent hat. Exactly now that I’m in my 3rd act of life and I’ve learned more about how to answer the questions that come when I stand back. 

The answer then, and now, was that my parent hat is always on. Yes, even when our son passed away and I was not living in the role of a parent right now. 

Step into this with me as we look at the perspective along with the discussion about silos, advocacy, Human Service agency work and work in the disability field. 

Let’s see if there are more blooming moments to come. 

New perspective from those I work with each day.

I have had many opportunities to volunteer with parent-to-parent organizations and to work in the disability field for over twenty years. I have been able to continue to learn new ways to support people with disabilities. I have been able to talk with people from across the United States and Canada, and I have found new perspectives from those I work with each day. 

We all come from different backgrounds and different regions, and the people with disabilities in our lives have different diagnoses. And yet, many times there is a word that comes up again and again. Silos. Silos between agencies. Silos between professionals and family. 

A word that held our collective attention with friends.

Not a very exciting word and yet one that has held our collective attention at conferences, meetings, and dinner with friends. 

There have been times when the talk of working to build bridges between agencies starts, 

and then the reality of different funding streams, 

agency directors who may have different views on how services should be delivered, legislative oversight, 

restrictions about which people with which diagnosis can access services, and 

suddenly the best intentions of a group can be derailed. 

The power comes when each of these concerns and realities is discussed with input from families and professionals. 

Recently, I have been involved with meetings in our state to talk about ways that our Human Services and Mental Health state agencies can work together to provide needed services to children and youth with intellectual/developmental disabilities and mental health needs, also known as having a dual diagnosis. 

Silos between professionals and families.

This group of focused and dedicated families and professionals is working to create a training curriculum and a system to support individuals with a dual diagnosis in urban and rural areas.

This is an exciting and hopeful development as conversations continue with families and professionals as we work together to find solutions to current needs for people with disabilities, including those with a dual diagnosis. Silos between professionals and families. 

There is a feeling or a thought that I have been watching develop for over ten years. It takes place in almost every meeting or conference or event where parents of children or adults with intellectual and/or developmental disabilities are in attendance with professionals in the disability field. 

The start of most of these events includes a registration table, a sign in sheet, or introductions where the following choices are requested: Name, Contact information, the Organization you are with, and then a box to check if you are 1) Parent 2) Professional 3) Student 4) Person with a disability 5) Other. What I have seen is that each of us check the box for the area that we most identify with at that time of our lives. 

An underlying feeling from both the family perspective and the professional perspective.

And yet many attendees could check more than one box. The question that comes to me is: why is only one box checked? 

Many times, we have family members who are professionals and professionals who are family members in attendance. There is an underlying feeling from both the family perspective and the professional perspective that has had an impact on many of us.

It often happens that a professional in the disability field is also a parent or family member of a person with a dual diagnosis. 

I have been in meetings where the discussion includes topics that are important to all in the room. 

If we go back to the sign in, the roles we sign is as is how we contribute in that setting. I have been in meetings where I find myself wanting to put on both ‘hats.’ 

I have ‘changed hats’ to talk about both perspectives.

Sometimes I, and others, have ‘changed hats’ to talk about both perspectives. 

Other times, I have come out of a meeting and been met by someone who did not feel they were able to do the same.

When I have had an opportunity to talk with them, this is what I have been told. 

There have been times when putting on the family perspective ‘hat’ has been met with constraints on future conversations as a professional. 

I was told that wearing both ‘hats’ would somehow reduce their knowledge and legitimacy in their work. 

This is something that I did not understand completely until recently. 

A few years ago, I changed jobs from being with a group who knew my son and his multiple disabilities to working at an agency where only one or two of my co-workers know that I had been a parent to a young adult with changing medical and mental health needs. 

I then found myself saying less with my family hat on.

I would be in meetings and conferences where both hats were on, but no one knew it. I then found myself saying less with my family hat on and saying more with my agency hat on.

It took a few months to realize that my perspectives as both a family member and a professional were welcome, and I also found that many at the agency were open to talking about both perspectives as we created plans to support people with disabilities. 

The experiences of life with our son have led me to learn about and work with many good people in volunteer organizations and state agencies in different silos. 

The realization that has come is that silos may be in place in some areas of our work, but we can create new ways to work with any and all interested family members, parents, and professionals to find the best next steps for the people with disabilities and mental health needs that we love and serve each day.

Our collective experiences and perspectives are the power we have to start where we are, use what we have, and do what we can. 

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 March/April 2017 Volume 20 Number 2

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. 

A plot twist is here in the story of life. When I look into the sky and I see, hear and feel the mighty change that is coming. 

Or did these changes already come to me when I needed to use all of my imagination to see what was coming? 

That is part of the twisty times before me. 

Each one is what can add to a story line. Every one is what can be part of the difficult words to be said.

It will now take all of my imagination to see what there is to see. 

When I look into the sky, the way that I see the changes that have come to me include a changing world and then a changing storyline. 

Starting there is how I came to find a few lines from Albert Einstein:

‘Logic will get you from A to B. Imagination will take you everywhere’. 

What I came to see as I began to look up more and more in recent days with these words in mind is that logic is where my mind tries to find the edges that make sense.

It’s where the world that I see with my eyes begins to take shape when I also see the world with more. 

What more is there? 

My heart, my soul and truly my imagination to see with more warmth in what could be there. 

I learned this as the second piece is taken into the story.

Imagine it with me. 

Imagination is what will take you with me.

It’s what will take you everywhere. 

Logically, I know that what I see is right here and right now and yet I have a memory of more being here. 

When the sound of a bird giving a double call lets me know where the feathered friend is right now and where they were before.

The bird call is what let me know where the family was to help me along my way. 

Before, when looking for birds while looking up was the only task or goal of the day with a Tall One who became more from a small one.  

This then combines with the sounds to bring me more. 

Imagination is now in front of me.

Imagination is now in front of me. 

Yes, and brings me to the third piece. 

The piece where the feelings come into the storyline. 

Can you feel the emotions welling up within you and blooming at times like this pure orange flower? 

How is it that one space can actually hold many feelings and shades with such pureness? 

I’ll let you in on this part of the story with this simple bloom. 

The orange in the flower and emotions it brings comes to me with a final plot twist. 

Orange is the favorite color of one who taught me to look into the sky while pausing. He was drawn to it with a smile. 

It’s why I can also notice things that grow in the dirt with a bit of water and the sunshine. 

Like this small sunshine inspired blooming flower.

Like this small sunshine inspired blooming flower with each petal arranged to look like the rays of a crayon-colored picture. 

Perhaps it was the brightness that is captured in the color orange that brings out the feelings for me when I see it now. 

It could also be that I take a breath, find my feet, and remember that imagination is what will take me everywhere when I dare to feel the emotions that well up within me as I see the color. 

Orange is what makes the world pop with joy and hope and a promise that more is here. 

A promise that there is more than logic in the everyday world.  Even now, without our Tall One here to show me how to do life every day.

That I can indeed feel joy and grief, hope and yearning, a desire to learn more about what is possible and sit still with others. 

All together. With warmth, compassion and flow with life.

Another story on a different road. 

With the birds and the clouds and the growing blooms that come up around me. 

Still. Even now. With the imagination to take me there.

What do you see in your spaces and places that sparks your imagination? 

Let’s go into this with a hope for each twist in our stories, together.

Summer plans and long days have arrived. 

When it becomes more reasonable to watch the ladybugs meander across the blades of grass than to stay with the previous goals that seemed important during the long winter months. 

It’s as if I can push a button and I enter that mode to get through the day then I find flow.

The goals to achieve something on paper or lists that can be checked instead of watching a cloud go by. 

Or snip at rose bushes as more buds find their full bloom while watching brilliant paprika red pop out along a rock path. 

Then someone asks: So, how’d it go with your professional development goals? And you roll back into a mode of being that must somehow coexist with that outside world of growth. 

Can both be in place together? 

There is a space of work and of being in summer mode while sitting next to a loveliness of ladybugs for me. 

It involves being able to reflect on the moments while I’m in them. 

Letting memories come and sit with me, especially when summer plans are in the mix. 

Good, difficult, grief, joy filled memories. 

Being in the moment, remembering that summer is the time of year that brings me things that go together. 

Those things that go together for me are like a pool and splashing.

Like a horse and one more trail ride.

Like watching the clouds go by high overhead and then going inside to clean with the favorite vacuum.

I anticipate every summer beginning with a splash coming again, but how can it ever be the same.

My grief calendar works backwards as I watch the clouds go by and walk a new trail.

Summer and anticipatory grief.

They walk side by side now with me.

Let’s walk together this summer.

So, how’d it go?

Have you found that being in the moment, reflecting on what summer mode is for you, is a time for you to ask that same question? 

So, how’d it go? 

A question to think about as we are with people and ourselves each day. 

Watching the sun roll across the sky or a clock tick off the hours as another project is completed. 

When a time in our life seems to be never ending or suddenly at the end when we least expect it. 

This is when others may pop up with deep looks and ask more probing questions. A time when we may desire complete stillness or nearness as new mode comes upon us. 

It could also be the time to wait. Wonder and lean in for more while listening to what may be coming. 

This is when I love to pause and wait again. 

There are times when I want to keep talking and give more reasons for the ‘work’ that happens when all that is needed is for me to stay in summer mode.

It’s as easy as pushing the button to enter into the needed mode.

Wait. Listen. Pause. 

Watch the loveliness. 

Each of these times has come to me over many years. 

One time included watching a sunrise as I gathered with one other person as the true love of our life was escorted from our presence for a time. 

The air grew thinner in that moment and all we could do was stand, listen to the morning chirps of beloved birds and wait. 

There was no talk about how still the world was as it had completely changed in such a way, at such a time. 

Anticipatory grief had become complicated grief in a blink of an eye.

And then the question was asked: How’d it go? 

The loveliness that came with a look was astounding. Truly, some questions can come with grace and compassion. 

It was then that reflecting brought it together, again, for me. 

‘Summer will be on its way soon’ I thought at the time.

Splashes of water would somehow return with the summer mode of wonder along with watching clouds go by overhead. 

There would also be other modes to find, create and flow in and out of for the coming years. 

Yes, even modes to complete the goals with professional development when needed.

Summer mode is here now and continues to be one that gives me the pause needed to walk through my calendar of life and grief. 

Joy and loveliness. 

To watch for the pop of color and the blades of grass with more surprises. 

That is what I now know. 

Summer mode and goals as the question is asked: So, how’d it go?

Summer mode and goals can be together as the question is asked: So, how’d it go? 

The time to reflect on what this can be for you is now, or in ten minutes or when you are creating a splash with those you hold near. 

Find what is part of your loveliness today.

There is a path that I have traveled many times out my back door. 

It was created when I first received a gift from someone who taught me how to make room for more, including big and little plants that needed to be transplanted. 

Who knew that plants could be transplanted? Not me until I was shown more. 

This mentor showed me how to divide beautiful blooms, 

dig deep to gather the roots in a wide circle to include their strength and 

share what I had learned with one more person when the time was right. 

“We never touch a person so lightly that we do not leave a trace”

It was only recently that I realized she also was teaching me about the quote from Peggy Talbot Millin that says 

“We never touch another person so lightly that we do not leave a trace” 

The far-reaching truth of this is sitting in my heart and bringing soft emotions of gratitude now. 

Another person is indeed the one who has touched me with grace, kindness, warmth and patience for years.

This person who became my mentor took time to teach and guide. 

Gratitude for my mentor who showed me how to create and dig deep is also the one who listened and laughed with me as grief began to surface in everyday life. 

This person is how I continue to follow the path before me with blooms that have increased from the first ones given to me years ago. 

You’ll see them here. 

The purple one with soft, broad leaves reminds me of the kindness shown to me as the plant spreads across the flower bed. 

One season at a time, carefully tended and nurtured as it grows. 

The roots have taken hold in one space then gathering more strength each year. 

It was a regeneration of energy every time. 

Increased how the touch of gratitude for my friend as grown

Being able to watch how more of the broad leaves show up over time has also increased how the touch of gratitude for my friend and mentor has grown. 

I have come to realize that she was a mentor to many. 

That she divided and transplanted plants such as these for others.

I love that she shared her joy of life with countless friends! 

Giving the tools to gather roots and share for years to come. 

She touched the world for good and left a trace that is still sending ripples.

She touched the world for good and left a trace that is still sending ripples beyond her reach. 

Her path of life was broad and colorful. 

Does this remind you of the life you lead? 

If I take a look along the path out my back door, I can see other plants that came to me at the same time. 

It is when I pause to look at each one that I see what comes next. 

Surprisingly, what came next had very little to do with plants and more to do with life. 

Life brought a pause after the purple plant was in place along the path. 

Pause came as I began to dig deeper. 

Their incredible trace of goodness, kindness and hopefulness was with me.

It was as if I had been touched so lightly by many people and now their incredible trace of goodness, kindness and hopefulness was with me. 

The circle of growth that came in this renewing pause was alongside other friends, mentors and inside the backdoor. 

Life became a time to let the roots rest. 

Gentle gifts of guidance came as grief encircled our life, yet blooms of joy were gathered as well. 

Friends bloomed along the way, leaving their trace with me.

Showing me when to share what I have learned with others around me.

It is what I now know as grief, love, joy and compassion stays while I watch the plants lovingly transplanted from my friend. 

You can think about what is on your path as we go along together.

Sitting, waiting, watching. 

These are the things that I’m doing today as the sun pops over the mountains to the east of my home. 

The things that I decided to do along with a day of lists. 

A day of rushing and then a moment of realization that came to me as I saw golden strands of light being pulled across one long cloud. 

This did not happen by chance. 

The moment came as I decided to sit beside the opened window. 

One decision that led to another as it came to me that the question of my day is continually about what we are going to do in this minute and, 

In this minute,

And this one. 

As now the golden hues are changing, and I am waiting for the orange to highlight the room. 

Watching what happens next. 

This is how a day can unfold when I sit. 

It also can come as the fullness of a day boggles my mind with awareness and beauty. 

Right amid the wondering of a weekend ahead. Such brightness that I’m tempted to close the window that shows me the breathtaking view. 

Yet I know that this is how I bring the oxygen back into my rooms. 

Opening a window is what I can do on days when the lists feel overwhelming. 

Add a bit of warmth in the room again. 

Perhaps joined with compassion and kindness towards myself and others around me and you. 

Back into life as I ask the question again.

Back into life as I ask the question again. 

What are we going to do? 

This, this is why I continue sitting, waiting, watching. 

To wonder and ask questions alongside others. 

Others who I have known as a former self and now greet with a gentle hello. 

‘Good to see you.’ 

‘What would you like to say today?’

While I watch for the full brilliant rays to flow around me in this room that now holds more that I can believe is here for me. 

It holds more for you, as well. 

Can you wonder about it with me? 

The joy that comes with wanting to squint into the brilliance is what I live with now. 

Now that others who showed me how to live with missing, longing and yearning are no longer here. 

Joy, grief and saying difficult words can live in a room filled with such light that it makes us look forward with kindness and graceful compassion. 

My friends. It’s for all of us. 

This life of breathing as the oxygen in the room is seeping in like the softness of a sunrise. 

Are you beginning to gently ask what am I going to do?

As you are beginning to gently ask what am I going to do? 

Feeling the gentle hues change in your time is a start. 

Letting the breath in one space for 

One

More

Movement 

And moment 

And then create joy. 

That is the resilient, the warmth and the possibility that is here. 

Together we can feel the air flow over us. 

Let’s begin here.

Life is before me to live with what I’ve been shown alongside love and grief. 

I can choose to find meaning and do what comes next as the rhythm of the day comes to me. 

It comes with what I was shown by two people about living and dying. 

These are the days that I’ll remember alongside the two people that taught me over many years.

Some days were to live with what can be imagined. Other days were to let things, ideas and people die when it was time.

They are also the days that showed me that some days were to live with what can be imagined.

Other days were to let things, ideas and people die when it was time. 

Think about this as we move along.

When ‘it was time’ can become the thing that is exceptional for each person. 

As it was for the two people you see here. They brought grand moments of living 

This is Brandon and Dallin, dad and son, the two who were joyful and tied so tightly together that when the day started, it was usually with a smile. 

The smiles are what we lived with as we found meaning and love.

The smiles you see here is what we lived with as we found meaning and love. 

This is how living came to us as we bounced along as if the day were like this trampoline and we were here to greet it with a steady rebound. 

Bouncing in sync, doing it with a smile as broad as what you see here and keeping a steady gaze into the other person’s eyes was a part of life. 

How can we look steadily at another person when life seems to bring the ups and downs that may come?

Perhaps it can come when you hold up your hands to balance yourself as life comes to you. 

You’ll see it here as Brandon raised his hands high to gain more height during jumping. 

The goal was to add more height to the bounce during each lively time on the trampoline and to keep a steady look into Dallin’s eyes. 

This look was to make sure that we saw what was coming next. 

Not all parts of life were fun and games, even if that was what we held as our main goal

Imagine that with me as we go into the next part of the music.

Dance with the parts that led us to live and let die along the way.

It was one part that continued to come as we began to dance with the parts that led us to live and let die along the way. 

This can be strummed and drummed within the song with the same name by Paul McCartney that came to us many years later in the movie Shrek the Third. 

As the song plays, there is a frog king that is near death as he is surrounded by those who love him.

Being surrounded by people who love was important during the scene supported by the music you can hear with a steady beat. 

A soft melody line is followed by a short boom, boom, boom then flowing string musical section. 

Showing that ‘it was time’ for the frog king to die and for other parts of the story.

Showing that ‘it was time’ for the frog king to die and the other parts of the story to come into play. 

What does this mean when I am looking for meaning with these two? 

Could I look for a time when a soft melody of life with love and joy, bouncing and finding balance turns into when ‘it was time’ for something different? 

This came to me when the bouncing changed and a trampoline was put away. 

Indeed, when a trampoline and a steady gaze was changed for an I love you being set in stone that became unimaginable. 

And then, this was also taught to me. 

It’s what I now know. 

Sometimes it’s an idea that love ends when a person is no longer seen bouncing in front of you that needs to die and be changed. 

Or the idea that a rhythm of life will go as before, when grief is present, is what needs to be changed.

Imagine that. 

It came through a steady rhythm that these two in the picture always showed through their ability to bounce through each change, in life and in death. 

Through love and loss, grief and mourning. 

Will I be able to hold onto the essence of all of it that Dallin held throughout his life?  

That is the continual goal. 

One that Brandon and I create each day with every bounce and jostle with a steady gaze. 

Today, we can each choose to do one thing that will help us through today with meaning. 

What is your one thing? 

Let’s do it together. 

The layers of my grief look like a couple of things I’ve come across in life.

Over the years I’ve attempted to make a few things that seem to make me shake my head and stand back. 

Recently, I made a pie and that’s where the similarity stood out. 

Grief is like layers of a pie.

Grief is like layers of a pie. The bottom or beginning of grief is new and it seems ok.  

Then there is the middle with all the emotions that can pile up like ingredients. This is where it can feel mixed up, as if life will never be the same again. 

Finally, there is the top which can be disguised with a light crunch or sugar topping and then it is finally discovered that grief here is bumpy and ever changing!

As I watched the pie being made I found that while I thought I knew what I was doing it was surprising to find that a little adjustment was needed throughout the process. 

This pie is in the middle with the ingredients piled high. 

There are dots of butter to add more flavor, and that edge of the first layer can still be seen. 

Seems to be okay from this view, doesn’t it? 

This is where we can stand back and start to see more, my friends. 

The grief that comes in layers made me pause.

The grief that comes in layers made me pause as I made this pie. 

What if the ingredients inside were to change as another person wanted smooth chocolate filling instead of apples? 

How would those changes be seen by others in grief? Could they be adapted to be like a chameleon? 

Or is there only one way to make a pie and to grieve? 

Here is what I explored the day I rolled out the bottom layer that looks like it fits in the pie plate. 

I thought about how I didn’t know what I was doing at all in the first years after our son died, when I showed up for work and hoped to remember my password or where a file was on my computer. 

What I also hoped for was that others around me were kind and would help me seem ok. 

That world of seeming ok with all of it rolling forward did happen for me.

I sat with the messy middle of grief.

So, I sat with that for a time and then went into the messy middle of grief. 

Have you felt the messy middle while others were with you? 

The pile up of emotions ranged from chunks of disbelief that Dallin, our son, was no longer in our home, to gratitude for a life with our son. 

Then to sudden memories of who we were with him slipping down my cheeks as the tears would jump forward. 

Mounds of emotions needed to be felt and seen even when it seemed like life would never be the same again.

Truth came with this, as life never was the same again as part of the messy part, the piles of feeling continued and I felt them all. 

I began to be interested in this part of grief that I didn’t need to understand it all. I only experienced life and grief and wonder here and now.  

For me, there are many ways to make a pie and to experience grief. Being present with it was part of feeling and being then. 

The top is where I am now at times. 

I sit with the thought of ever being complete with grief, as I have found that it is truly ever changing.

For me, grief means I have loved and I will love our son forever. 

So, I will grieve and remember forever.

Loving and living with a bumpy ever-changing life is how to roll out the top of the pie.

Loving and living with a bumpy ever-changing life is how to roll out the top of a pie. 

Will it sometimes cover a delicious layer of ingredients piled high and dotted with more flavor? 

Yes, most likely. 

I will also most likely continue to have a pile of emotions with the grief that comes in layers. 

For me that means that joy, resilience, confusion, wonder, and sadness all create this life that can bring experience. 

Some days are smooth like that bottom layer or like different filling. 

Other days are bumpy like a top layer of pie that is part of grief and love, life and sorrow. 

What are your layers of grief bringing you? 

Let’s discover them here together.

A few months ago, I was looking up and I saw it coming again, then I realized I needed to wait. 

The view before me was new yet came every day. 

Bright colors seemed to be popping open from a sunrise about to blossom with the day. 

I am one who was known to stop as often as possible to watch it happen, like that morning. 

Orange stained the tops and bottoms of clouds as a gentle blue held the deep gray of one more cloud right in the middle of the sky. 

It seemed to come together right before my eyes as the brilliant rays then fully engulfed the blue during one more sunrise. 

At that moment, I realized that I also have two thoughts that come to mind, like the light posts in the side view in my vision. 

They have stayed with me since then to reflect on. 

The first is a quote I heard years ago. 

You have to be good for something.

“It’s not enough to be good, you have to be good for something” – Gordon B Hinkley

Here’s where we will begin during this month of love and the bright orange clouds that started my day. 

It was great to gaze into the beautiful heavens and feel the wonder that came with it. 

What was I going to do with that moment and pause that I was given? 

Enjoy it for myself only? Share the reason that I knew how to breathe and take in the good that I could see or hold it tightly to my own heart? 

When I saw the sunrise, the quote my mind became part of my daily reminder in the second way. 

I was given a way to pay attention to good things like a sunrise.

I was given a way to pay attention to good things like a sunrise, the incredible colors and being able to pause during times of my life when I thought it was impossible. 

In fact, one of the first times I remember seeing a sunrise in this manner was when I was on my way to work right after helping our son get onto his school bus. 

There were days when he wasn’t able to attend school due to unexpected illnesses so when he could climb the four steps and wave through a window to be with his friends for the day it was part of something good. 

Then my choice was to make it good for something.

Then my choice was to make it good for something. 

I had about 12 minutes to hop into my car, dash down the road and get to my job to start a meeting. 

On that particular day I happened to race the sunrise to the office. 

Can you imagine the colors right there before me? They were similar to what you see here. 

I sat at one or two traffic lights and realized these moments were meant to be seen and savored. 

Not rushed through or forgotten. 

Each day was a gift for me and our son as was each moment of looking up and seeing the colors around the clouds. 

I chose to be good for something along with doing a good thing.

I chose to be good for something along with doing a good thing for others that day and moving forward. 

It changed how I saw the people I worked with, the people I met in the schools and most importantly, how I sat with our son each day of his life. 

Anticipatory grief was something else I sat with ongoing illness looming like a storm around corners. 

Another thing I learned during this time was that there is a difference between being mindful and having a mind full of things. 

Who knew that learning about being good for something would be part of changing me.

Who knew that learning about being good for something would be part of changing who I was and how I looked at the daily moments in life. 

Turns out it is what I now know to be true. 

It also turns out that this is what each sunrise, each orange cloud and every bright moment I get to have with people around has brought me. 

There is one more thing I’ve come to know about being changed.

This change is the one I’ve loved. 

It is directly related to the boy I was able to help onto the bus those many years ago. 

He taught me how to be changed while looking up when he was a young child then as he became more that we could imagine, as grew taller and wiser and more medically involved 

Dallin was good for something by his very essence.

Dallin was good for something by his very essence, and I now strive to do more than being good. 

What are your thoughts or hopes? 

Let’s look for the bright options together.