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.

Every story has a beginning, middle and an end. 

You and I are going to go through one story to find each of these points. 

To do that we are going to try and do three things. 

Are you ready? 

This simple story has to do this well-loved, small, molded plastic reminder of where we’ll begin. 

Take a look at the details, if you will. 

Do you see the round bottom of the figure? 

This shows how well it is created to roll back and forth to create the first moments of finding a rhythm in life. 

That, my friends, is when this one green and yellow item began to bring joy. 

The things that told him they would wait for him.

It was also when our son, the one who found his rhythm, seemed to find that toys were the things that told him they would wait for him. 

Wait for him to be ready to learn and play again.

As if the steady step and beat of one friendly face could bring more. 

I’ll tell you it did because there is more to the story.

That is where the middle of the story comes into the scene. 

Of course. 

This one steady beat rolled into our world like the song from Mumford & Sons. 

Same title that shares about how I Will Wait for you. 

The middle of the story is when I learned how to wait for the joy to come back to us, when we were waiting for the rhythm to find all of us. 

This friendly face came with more that became the way our son found his way through moments of confusion and unknown. 

Ultimately, it is how he rewired his neurons when electrical storms known as seizures changed his rhythm for periods of time. 

You see, there were three more of these small, molded plastic toys that rolled with a soft click and clack after illness came to him. 

Four ways to restart joy.

Four little ways to restart joy. How did it happen in the middle of illness and what felt like stopping points in the middle? 

Oh, my goodness. 

Look at the edges of the friendly face with yellow and green. Do you see the rubbed off edges? 

Two little hands found every ridge and edge, including the top, and then found that each one could be rolled around a small space, and they could not be pushed over. 

Can you see it in your mind? Let me describe it a bit more. 

Our son would take all four of these small sized toys in his hands, find a space in our home with an open hard floor to roll them out then slowly push them around to watch each one wobble. 

A slight smile would then grow as calm came again. 

What a sight it was to see this in the middle of a changing life. 

Yes, the toys did wait for him.

Yes indeed, the toys did wait for him. 

Then came the sweetest thing in life. Incredibly, it was also when we started with the end of the story. 

We’re going to take one more look at this child sized molded plastic piece of joy. 

Do you see the plastic film that is tightly wrapped around the top? 

That is because of the time of a repetitive rolling and rocking of the toys meant that love met gentle use. 

Then one day, the toy popped in half as it steadily said ‘I will wait and be here’ for our son.

What do you do when a beloved toy is now in two pieces? 

Well, you fix it! 

That is exactly what I did and with the clear tape we had on hand. 

Then the two small hands held it again. 

Can you guess what happened? 

Yes, of course. The joyful rhythm continued with more clicks and clacks. 

And then one more thing happened. 

Perhaps you’ve found this in your life as a story with a beginning, middle and end is near. 

Another beginning came to us.

Another beginning came to us. 

More rolling and rhythms came to our son in a new space. 

I have wondered and wandered through time about how this came to him. 

Then I look at this small green and yellow, well-loved toy and remember how one end became a new beginning. 

Our son was quite like the toys that wobbled then popped up every time during a long time of his life.

One steady rhythm which included creating a harmonious time for him came to us because he listened to a click and clack that said I will wait for you to be ready to play again. 

Then our son played again. 

He learned more about how his life could be and we followed him. 

Imagining what can come is what I can do now. 

While I wander along with you. 

Let’s create the next beginning 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.

Some signs are here to help us find the way. 

Others are here to help us pause before taking the next step. 

I have a sign near the front door that reminds me of both points. 

Listen and silent have the same letters. Coincidence? 

Each letter is painted on the sign over a previously used canvas. 

There are colors that can be seen within each letter that include black, red, blue and brown. 

Over all of these is a bright white paint that covers as well as highlights the quote.   

This sign is near the front door for a reason. 

To find a way and to pause.

If I listen and observe, then will I be able to see each of the colors?

If I listen and observe, then will I be able to see each of the colors in the letters? 

The small parts of this are what I now pay attention to each time I walk around the table.

Staying silent is what brought me to another awareness with this bright white quote. 

Being silent doesn’t mean you have nothing to say.

In fact, listening to the silence is how I’ve come to the next question. 

Will I also be able to observe the words that need to be said as I listen for that? 

Being silent and with others in their silence has shown me how to go back to doing what I used to do. 

It has looked a few different ways. 

This could be restarting in the morning, replaying what was happening in your life with a tender memory or playing and having fun with those around you today. 

Knowing how to begin is what comes when you listen and stay silent.

I listen when I pay attention to what the rhythm of life is telling me, 

how my feet feel when I enter a space, 

what my heartbeat speed tells me with a quickened or easy pace and 

how my heart opens as I feel belonging with others. 

This could be another way to listen.

This could be another way to listen along with the birds that bring a melody to the sunrise. 

Or how the banter among lifelong friends reminds people of becoming extended family. 

As if friends can become like cousins if we listen closely enough to know about things that aren’t being said. 

Perhaps that is what we can see and hear when we are silent and we choose to listen.

Think about a time when this has become part of your open heart and easy pace of life. 

When listening and silence brings more to your life.

When listening and silence brings more to your life. 

Others have wondered if a person who is silent has nothing to say. 

When someone is not able to speak at times, they could be waiting for us to hear them through their body language, 

gestures, 

looks across the room, 

sign language and 

augmentative and alternative communication (AAC).

I was shown this through a lifetime of living with our Tall One, Dallin. 

Dallin was incredible at listening, knowing and observing.

Dallin was incredible at listening, knowing and observing and he was not able to speak throughout his life. 

He was also able to communicate through many ways, although others thought he was silent in some ways. 

One did not outweigh the other as he used everything at his disposal, including sign language and AAC to listen and say what needed to be said. 

This could be another way to look at the sign with bright white paint and that is not a coincidence. 

It is what I did then and what I now know. 

Having many modes of communication begins by being in the moment and the rhythm of life. 

His joy at being in an easy pace of life brought an ease to my heart and soul. 

This could be the true reason why the sign near the front door brightens my day. 

Listening and silence can bring more to life.

Let’s do this together as we look to become family while we play and find our rhythm.

Today I let the memories start again. 

With the food you see here, that is. 

Who knew that they would come with a sandwich? 

I didn’t know that this one thing was going to be a part of my day until a good food memory came to me. 

The feeling of an easier time came back to me with a simple egg salad sandwich. 

Food has brought me strength, tasty treats, joy, sweet moments and then memories like this one today.

And a time when a sandwich was all that was needed for the day to be perfect. Sitting next to a friend or a cousin or a sibling as a kid while we ate a sandwich. 

The sudden thought came along with questions that trailed along in quick succession. 

What will happen if I actually eat an egg again? 

Will this sandwich taste the same as it did when I was a kid? 

What’s the worst thing that can happen? 

Am I as brave as I was as an eight-year-old? 

Oh, the smile that appeared on my face almost demanded that each answer be found. 

Shall we begin? 

Yes! 

To do that I’ll let you in on a bit of history. 

There are some good food memories that have stayed as memories.

There are some good food memories that have stayed as memories because I do not eat the same things I have in the past. 

That would include meat and most other animal products. Yes, like eggs and milk. For some reason I totally lost the taste for each of them many decades ago. 

For me to even think of this simple memory based on food is like me going back to a person I used to be and who I was with before now.  

I even thought about different recipes of the egg salad and then went with the one I know. 

It was as if my memories showed me the way and kept it simple as the questions began to be answered. 

It’s time to start by asking about what will happen. Nothing will happen! 

Isn’t that amazing? 

This idea and choice are mine, if I’m going to choose it, so let’s keep going. 

Seems easy enough. 

Memories are what can be done as we step into the next piece because will the sandwich even taste the same? 

Perhaps that has happened to you! 

You have a good memory in your mind.

You think about something and have a good memory in your mind. 

There is a picture of how it was before and what it should be now. 

Then, there is the thought of what will happen IF it’s not the same. 

Oh Lands! 

What will happen if it’s not the same? It would be better to leave the good memory and the food in the past and not tempt fate, or the taste buds.

And then what will happen if it IS the same. 

Mmmm. 

Wait, wait, wait. 

The progression is building here, my friends. 

I picture the good memories of food, how it tasted in my childhood when I have the sandwich.

The worst that can happen also builds up in my mind as I picture the good memories of food, how it tasted in my childhood, how it could happen when I have the sandwich in my hand. 

Could it be better than I expected?

Now is the time for me to be present and also hold onto the memory. 

You’ll see that I am also building up to the bravery of an eight-year-old. 

The final step to being in this moment also brought me to other memories. 

Interestingly some of them were tied to food as well as other people who have been in my life.

Like when the popcorn was popping, and fries were being dipped in sauce with another tall kid. 

Was it about the food or about the people? 

I’m beginning to think the memories are about the people. 

That is something for us to continue thinking about as we continue. 

Now is when I decided that yes, again and again, the good food memory is what I can choose today and tomorrow. 

Here is what I now know. 

A good food memory doesn’t always need to stay in the past.

A good food memory doesn’t always need to stay in the past. Sometimes, we can bring it forward again to hold it gently again. 

Like the people who have been there along with the tasty treats. 

Holding the sandwich in my hand felt comfy and the smile returned to my face.

You see, each of these questions took only seconds to run through in my mind. 

Then being present returned and the first bite into a soft egg salad sandwich took place. 

The what-ifs were replaced with ‘oh yes, there it is’ alongside the tastes of what can be started again. 

What if that is the new part of being brave? 

Holding the good memory with what we have with us, here and now. 

I’m here to do it with you, my friends.

There are times when things are done out of order. It could be when you try a new way of doing what you thought was set then see it’s time to look at the details one more time. 

When a recipe asks for one thing to be done but you think it could be done another way. 

You wonder if it would make that much of a difference if one thing is changed. 

So, you try it. 

Then you notice that something is different. 

Perhaps it can be like making a pie crust and changing out the cold water. It is easily done in the moment, yet what happens when the pie is done? 

It is more easily broken. You notice that the flaky goodness that was there in the past is now not quite the same. 

What seemed to be a time saver in the moment turned out to be the one key part of the recipe that made all the difference. 

Who knew this was the case? 

Turns out many people who make pies know this. 

It was the cold water along with the flour, salt and butter or shortening that made a tasty crust. Promise.

That’s a pie crust promise. Easily made, easily broken.

Yes, the quote from Mary Poppins that says ‘That’s a pie crust promise. Easily made, easily broken’ that is true here. 

Pie crusts are both easily made if the steps are followed. If the ingredients are tracked. 

Let that sit with you as we look at even the basic four things needed.  

What I found out is that I’m the one who needs to keep track of the ingredients.

Even the ice water. 

Then, I found myself remembering that there was another time that pie was part of a promise. 

This time going back in time to see in my mind the time that our son enjoyed a piece of pie. 

It was just like this one you see. 

A flaky piece with small bite size apples eaten one bite at a time. 

Bite by bite until the small plate was clean. 

Yes, every morsel was delightfully gobbled up then he sat back with an even bigger smile as if to say ‘Well, that was the best thing I’ve ever had so far in my life!’ 

That pie crust promise was given and received.

That pie crust promise was given and received as it was meant. 

With love and joy, sitting side by side with others and noticing every crumb on the plate. 

What if that is the meaning of a promise at its core? 

That we sit side by side with someone and notice the details. 

Even down to the last morsel or item in front of us? 

That is what this quote gives me alongside the memory that seems to float with it. 

If we were to do these two things, sit side by side and notice the details then what else would come? 

I think there is magic that could come, and not the kind that Mary Poppins brings. 

It is the kind of magic that our son showed so delightfully. 

He only ate this one piece of apple pie with bite size chunks. 

With it, he showed what could happen when you sat with someone by their side. 

Or invited someone to sit by your side. 

If the moment came to him and someone was near, he would pull them to his side in a way that you felt a part of him so closely that you could feel his essence. 

Dallin knew that doing each thing was important and was like doing things that count. 

He was pulling people to him as a way to show you how to notice the small things. 

The crumbs were the tasty morsels of life. 

It could have looked like a broken pie crust but not a broken promise.

Yes, it could have looked like a broken pie crust but not a broken promise. 

Our son, Dallin, showed how to keep a promise by being by our side for as long as possible. 

My how he showed the magic of life. 

Inviting someone to sit by you, showing them that you have noticed them and their details of life is as if you are saying ‘You are the best thing in my life!’ 

That is the easily made part. Like adding cold water to a pie crust. 

There is another part that is more difficult and may feel like being broken at times. 

That is when life seems to be done out of order. 

For me, that was when our son died and was no longer here. 

How could that be when he was the one to show how easily sitting by his side had been for a lifetime. 

This one change did make many differences in my life. 

Now is when I need to ask the next question of ‘What are we going to do next?’

Will the pie crust promise of being side by side stay intact?

Will the pie crust promise of being side by side with others stay intact or will this be the time for the magic to disappear? 

Do you see that it is still time for the details to stay in place, like the crumbs on the plate when our son ate that one piece of pie? 

For me, deciding to continue to sit with others, and pay attention to details all around is what I now know will happen. 

It’s how I can say ‘You are the best thing in my life!’

Is there someone you feel the magic with as you sit by their side? 

Now could be the time to notice the small things of life with them as you look for love and joy. 

Let’s do this together. It’s a promise that is easily made.