POST 13 – Special Needs/Special Love

The Teacher and the Dragon

By
Douglas A. Sharp, from his book NIGHT BREEZES

It’s fair to say you taught me. There are some things I’ve learned
A gift that is freely given often cannot be earned.

I’ve seen you take the world on
With nothing but a grin
And whenever that was not enough
You’d take it on again.

I watched you face the dragon
That filled me full of fear
I saw you climb onto its back
And whisper in his ear.

I saw the dragon look at you
Much as I have done
It seemed to me he smiled a bit
Before he ambled on.

I don’t know what he heard from you
Or what it meant to him
But there’s never been a dragon
I have feared since then

Ashley before the Rett Syndrome regression

As I indicated in Post 8 – Ashley and Henry, at 18 months my daughter, Ashley, lost use of her hands, her face became pale, and she quit vocalizing. She sat on the floor rocking in her own world and would not make eye contact. She had one screaming episode where she grabbed her head. Rett Syndrome is a developmental disorder that causes loss of much physical function. There is no telling what Ashley felt during the regression period.

Rett Syndrome was not known in America at the time of Ashley’s regression. Judy and I took Ashley to a specialist who did not know what was wrong, but he said she would never talk and would require total care for the rest of her life. He suggested we institutionalize her, this child we cherished, and to get on with our lives.

It is hard for me to describe how I felt after hearing the doctor’s words. Perhaps “shock” is the best term, but coupled with sadness and fear of a long-term problem beyond anything I had imagined. It was like I was in a world of confusion that had changed in color and form that seemed to pervade the infinite.

When we later read this doctor’s report, we saw that he did not believe what we told him. He wrote that she never had use of her hands and never “vocalized”. Rett Syndrome was not known in America at this time, so I do not blame the doctor, but it showed he did not have the answer. Who did?

Judy and I thought we had a narrow window of time to help Ashley regain her function. We spent many a night studying everything from Edgar Cayce readings on health to academic journals devoted to child development. This focus on Ashley had a price. At this time our oldest daughter, Kristin, was around 13 years old, and while she was not totally ignored, she was not getting the attention she needed.

Because Ashley sat on the floor rocking, ignoring her environment, Judy suspected autism. She found some criteria for autism, for which Ashley satisfied more than half. It was the best diagnosis we could come up with. This led to us meeting the Kaufmans, by way of a movie.

In 1979-1980 I was head of the U.S. economics division of a large bank in San Francisco. We lived in Walnut Creek, where Ashley was born in February 1980. Ironically, when Judy was pregnant, she watched a television movie about a couple who cured their autistic child. Neither of us could have known how important this movie would be in our lives.

Our daughter, Kristin, with Ashley before the Kaufman program

Ashley before the Kaufman program

Judy with Ashley before the Kaufman program

The movie was Son-Rise and told how Barry and Susie Kaufman, also known as Bears and Samahria, cured their autistic son, Raun. They engaged in an intensive but fun and happy program designed to keep Raun engaged and to make eye contact, keeping him from retreating into his own world, and they kept him on a healthy diet. At the time this was a radically different approach to treating autism.

Barry and Susie Kaufman and their mostly adopted children, early 1980’s, Raun is third from last

Bears, who long ago quit his work in advertising in New York, is the author of 11 books and one more with Samahria. The couple adopted some abused children and gave them a great life. They co-founded the Option Institute in Massachusetts, where they help empower people using the Option Process and, also, head up an autism treatment center.

When we first met the Kaufmans in the early 1980s they were still in New York, prior to their establishment of the Option Institute. Judy, Ashley, my mother, and I went to Long Island, New York to meet with them, after reading their books (4 at the time), as they required, to make sure we understood the nature of their program. When we arrived on Long Island, we were anxious for the Kaufmans to assess Ashley. Big surprise – they spent the first entire day with us, not even wanting to see Ashley.

Some days one never forgets, and that is one of those days. Bears spent the entire day walking and talking with Judy. Susie and I headed in a different direction, and she did the same with me.

After reading their books, Judy and I should not have been surprised that we were their focus. From Happiness Is A Choice, “Unhappiness follows from certain beliefs and judgements, which we choose and which we can change.” (p. 60) In A Miracle to Believe In, Bears wrote, “…the single most important part of the program is our own personal comfort and attitude…not simply what we do, but how we do it.” (p.124)

In our walks that first day we were each questioned extensively to get at the root of whatever beliefs might stand in the way of us always having a genuinely happy and positive attitude. Simply put, their questions were usually:

What are you unhappy about?
Why are you unhappy about that?
Why do you believe that, or do you believe that?
What are you afraid would happen if you weren’t unhappy about that?
(from To Love Is To Be Happy With, p.39)

All day they questioned us about how we felt about Ashley’s situation, with another question usually following each answer we gave. Here is a sense of the day’s questioning.

Q: How do you feel about Ashley’s situation?
A: I don’t like it. I am sometimes unhappy and angry about it. Not around Ashley, but I have those moments.
Q: What about Ashley’s situation makes you unhappy?
A: For example, I don’t like that she cannot talk.
Q: I understand you want her to talk, but what about her not talking makes you unhappy?
A: I don’t want her to have this condition; I think it is normal to be angry and unhappy about it.
Q: Why do you believe that is normal?
On and on and on the questioning went, all day long, until Susie asked me,
“What do you think would happen if you were not unhappy about Ashley’s condition?”

I realized then and there that even if Ashley’s condition would not change, I would be happy. From that day’s discussion, it became clear that I could better help Ashley if I was happy rather than unhappy. I learned in a profound way that we choose happiness, and this is the Kaufman’s gift. I am grateful for the Kaufman’s insight into the power of the Option Process.

Back in Houston the Kaufman’s “program” involved multiple three- hour shifts each day to engage with Ashley. There was no way Judy and I could do this alone, so we interviewed and hired people of all ages to help. The criterion – they had to be happy and loving. We wanted Ashley to focus on us and constantly engage with her environment.

Ashley’s “work” room was located on the second floor of our house on Mooremeadow Dr. on the west side of Houston. Ashley sat on one side of a small table, and Judy or I or one of our helpers sat across from her. At that time Ashley was motivated by grapes. We would hold a grape right in front of our eyes to induce her to make and keep eye contact. A two-way mirror in the door allowed us to observe. We and our helpers spent many an hour over a three-year period in that room.

We met with helpers once a week in the evening, and everyone shared what they were observing. All helpers treated Ashley with unconditional love and acceptance, and a willingness to join Ashley where she was, meaning to relate to her in a way that she could understand. Many toys, flash cards and books were introduced once we had eye contact.

We wanted Ashley to have a “will to live” or motivation, that power within that enables us to overcome severe challenges. We could not give her that, but maybe we could help her find it. We loved her with joy for wherever she was in her struggle and tried to go with her on the next step forward. We worked on her hand use, and after many months, with great difficulty, she was able to pick up a grape from the table using her whole hand. She lost this ability once she went to public school.

Rett Syndrome proved more physically severe than autism, and she still cannot talk or use her hands. However, she is very aware and conveys some of her wants in a non-verbal way.

Ashley with Kristin after months in the Kaufman Program

Ashley is now 43, and she smiles almost all the time. There is a light of love and joy in her eyes, and that is her gift to us. She feels loved, accepted, and her high self-esteem is secure. She is like the light of God in our home.

Here is my message to young parents. It is important that you love your spouse and work out any difficulties. One of the best things you can do for your child is stay together. Love each other and love your child.

A special needs child will challenge you to be your best, to become loving and accepting, but that is true for all children. From a state of happiness, you can better help your child. Do not show unhappiness, for your child will think he or she is making you unhappy. In order to provide a happy environment, you genuinely must be a happy person.

The following pictures were taken in 2023 of 43-year-old Ashley.

By love serve one another. Galatians 5:13God is love. 1 John 4:16

You can hear more about our journey with Ashley and our visit with the Kaufmans in an interview I gave with Heidi Dixon of Allumine Health. (After the first minute the video clears up.) Toward the end you will see Ashley, and I sing her a song that Doug Sharp and I wrote for her in 1979 and one I sang to her every night for many years. I now say the Lord’s Prayer before she goes to sleep.

https://www.facebook.com/alluminehealth/videos/389343866075785

The Kaufmans are now in Massachusetts, working with people from all over the world at their Option Institute.

https://option.org/

Here are some quotes from their web site about the importance of beliefs to our wellbeing.

“For instance, two parents watching their daughter getting married can have different experiences – one is happy and the other is distressed. How do we explain 2 people witnessing the same event (the same stimulus) having diametrically opposed responses? Simple – each one holds different beliefs that filter their experience of the wedding. One sees it as wonderful – believing that their daughter will be happy and the family will grow. The other sees it as terrible – believing they are losing their daughter and that they will be lonely without her. This simple illustration is a microcosm of the myriad ways our beliefs determine every response, from joy to anger, from kissing to shouting.

“The good news is: our beliefs are changeable. Our experience with thousands of people from across the globe has shown us that, when people use the tools that we provide, known collectively as The Option Process, they are able to uncover the beliefs fueling their responses and the underlying reasons for their beliefs. Moreover, they are able to change the beliefs that may be generating unhappiness, dysfunctional relationships or ineffective behaviors.

May God bless us all as we journey through life’s challenges.

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Post 12 – Art for the Hagler Institute For Advanced Study

Featured Posts, Posts, Scholars, Uncategorized

One of my favorite quotes about art is by Alberto Giocometti, a 20th century Swiss sculptor and painter. He said, “The object of art is not to reproduce reality, but to create a reality of the same intensity.”

One intense endeavor is the search for new knowledge. I never thought much about what kind of art would portray this search, but it “plopped in my lap”, as the old saying goes. Three drawings now hang on a wall outside my office that capture the intensity of the quest for new knowledge.

The art came from the A&M Foundation, that raises major donations and estate gifts for Texas A&M University. The drawings appeared in a feature story about the Hagler Institute for Advanced Study in the Foundation’s magazine, Spirit.

I have loved these pieces of art since I first saw them, and I want to share them with you in this post. They are best seen on a computer monitor.

A little background is helpful. I am Associate Director of the Hagler Institute. The Institute brings world-class researchers, called Fellows, to Texas A&M for from three to twelve months to collaborate with our faculty and students. These relationships foster an enrichment of ideas and solutions to tough problems. Texas A&M is good place for these Fellows to work, as it is the largest research institution in Texas at $1.153 billion dollars in research funds (2022 data).

Briefly, here is the way the institute works. The institute gives each college at Texas A&M the same basic allotment of nominations. Any member of A&M’s faculty can nominate a scholar located anywhere in the world with whom they would like to collaborate. On a two-page form the nominator describes the nominees’ accomplishments and explains the importance of having that person at Texas A&M. Because there are resource implications, the college deans forward the nominations to the institute and agree to our policies.

The nominations, which are secret, go to a revolving committee of nine University Distinguished Professors, who evaluate the nominees over several months to ensure they meet the high standards of the institute. If you are a scientist, for example, you must be in the National Academy of Sciences to be considered. The nominee must also demonstrate an ability to work with others and be currently productive. These high standards enhance the prestige of being chosen for the Hagler Institute.

The institute’s staff helps recruit the approved nominees. Once a Fellow is recruited, the institute pays 70% of his or her compensation. It also provides two fellowships to Ph.D. students (per Fellow), allowing students to work with Fellows and their hosts. The nominating college pays the remaining 30% of the compensation, as well as the cost of travel and housing.

I joined the institute after its first year of operation, and I have worked there for ten years. During that time, we have brought to A&M more than 100 of the world’s finest scholars, in everything from Shakespeare studies to quantum theory. We attract a new group of Fellows each year. Although the institute was not designed as a recruiting arm for A&M, 23% of Fellows have joined A&M’s faculty after completing their time in the institute.

The institute has brought in several Nobel Prize winners, a three-time recipient of the State Prize of Russia, awardees of the National Medal of Science, the National Humanities Medal, many recipients of prestigious research honors, and members of U.S. national academies and exclusive academies around the world.

With that background I invite you to now enjoy three pieces of art used by the A&M Foundation for their 2017 “Great Minds” Spirit article about the Hagler Institute for Advanced Study.

Aren’t these just “too cool?”

Post 11 – Prior Posts and the Federal Debt

Blog, Economics, Posts

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POST 11 – Prior Posts and the Federal Debt

Hello to all. I hope you are enjoying my posts. I always welcome feedback.

Here are couple of comments I want to make about prior posts.

Regarding my post called Grief: When Mary Forest Engel shared her article about losing her son, the spacing in her writing was beautiful and consistent. When I reproduced her writing, that was not the case. I am still learning the program used to send out these posts.

I am grateful to my cousin, Bob Loyd, for calling to my attention that the 67% growth in government spending during 2020 took place during President Trump’s administration, not President Biden’s. During President Biden’s first year, 2021, government spending declined by nearly 28% from the high point reached the previous year. Federal government spending increased by 9% during 2022.

The key point made in Post 10 holds true. There is a well-documented connection between rapid money growth rates and inflation rates.

We may see this connection again in future years because recent Federal deficits (new Federal borrowing within a year) have added to total Federal government debt. For 2020, 2021, and 2022, the Federal deficits were, respectively, $3.13 trillion, $2.77 trillion, and $1.38 trillion, for a total of $7.28 trillion. As of June 23, 2023), total Federal debt has increased to $32.1 trillion.

In case you have not personally encountered a trillion dollars lately, I will remind you that one trillion dollars is equal to 1000 million dollars. We are talking about a serious amount of money, don’t you think?

Here is the immediate problem. Interest payments on this debt will likely occupy a greater portion of future Federal government spending than they have historically. Since neither cutting Federal spending nor raising taxes is uniformly popular, the Federal government may take the short-term easy way out and finance some of the interest payments with issues of new government securities, digging the debt hole even deeper.

Whether we see a rise in inflation rates in the future depends on the extent to which the Federal Reserve chooses to buy government securities. Unless the Federal Reserve changes its focus from interest rates to control of the money supply, the large and rising Federal debt enhances the threat of rising average inflation rates.

Well, that is all for today, and all for economics for a while. I appreciate so much that you chose to subscribe to my web site and receive these posts. Best wishes to all.

Post 10 – Inflation

Blog, Economics, Featured Posts, Posts

Post 10 – Inflation

“By a continuing process of inflation, government can confiscate, secretly and unobserved, an important part of the wealth of their citizens.” —John Maynard Keynes

“It is a way to take people’s wealth from them without having to openly raise taxes. Inflation is the most universal tax of all.” —Thomas Sowell

Prices are the exchange rates between money and goods and services. If rates of money growth exceed growth rates in the production of goods and services, prices will rise.

Inflation refers to a persistent increase in prices. Inflation is caused by too rapid growth in the money supply. Since the Federal Reserve controls the money supply, inflation is caused by the Federal Reserve.

When I was in graduate school in economics, this connection between inflation and too rapid growth in the new money was so theoretically and empirically well-documented by Milton Friedman and others that any student forgetting this relationship would have failed. Astoundingly, the current Federal Reserve leaders, to our detriment, are incorrectly focusing on interest rates rather than on money growth. There are economists who are trying to call attention to this. One is Professor Steve Hanke of Johns Hopkins University, and you can see him discuss these issues at

Inflation Just Got Lower, What’s Next? Economist Steve Hanke’s 2023 Forecast – YouTube

Inflation is different than increases in prices due to a key input, such as energy, becoming more expensive. Once prices adjust to the more costly input, price increases stop.

Prices do not stop rising during an inflation. For an analogy, consider water going into a bathtub that is full (economy at full rate of production) at the same rate that water drains from it. The bathtub will remain full of water. However, if you increase the rate of water (money) inflow, then water will overflow the tub and cause damage (inflation).

Unless other policies interfere, if the economy is not at maximum production (bathtub is not yet full), an increase in money (water) growth will induce real production to expand until it cannot increase any faster (until the tub is full). At that point any higher growth rate in the money supply will translate into a higher inflation rate (overflow). An inflation rate will persist as long as the accompanying rate of growth in the money supply persists.

When I was a professor at the University of Houston during the late 1970s and 1980’s, I co-authored an article in the Journal of Finance demonstrating that a quarterly increase in the money supply (M2) will influence the dollar volume of national output each quarter for about two years. This impact over time results from the new money circulating through the economy. Assessing the lagged effects are tricky because future variations in the money supply will also be influencing the economy during the impact periods of earlier changes.

Here is the source of current inflation. In the year ending January 1, 2020, the M2 money supply had grown at a 6.69% annual rate. The Biden administration, which came into office at that time, increased government spending by 67% in one year, some due to sending people money during the Covid lockdown. This spending was financed by borrowings through issues of government securities. The Federal Reserve chose to buy a heavy portion of these securities, injecting new money into the economy, rather than allowing interest rates to increase with the borrowing. I said as such in the Wall Street Journal, May 30, 2023 issue.

The Federal Reserve increased the money supply in the first five months of 2020 at a rapid rate. Its growth rate for the year ending May 2020, only five months later, had increased to 22%, and for each of the next ten months money grew from a year earlier at greater than a 20% pace. The “tub” was overflowing.

Here is a broader view. The two-year average growth rates in the M2 money supply ended January 1 for 2018, 2019, and 2020, respectively, are 5.59%, 3.18%, and 5.18%. The two-year averages for the consumer price index ending the same periods are 2.13%, 2.37%, and 1.87%.

For the two-years ended 2021, 2022, and 2023, the money supply growth rate was 19.52%, 16.27%, and 4.66%, respectively. The slowing for the two-years ended January 1, 2023 was due to reductions in the money supply in late 2022. Declines in the money supply are continuing as I write (mid-2023), The two-year inflation index for the same periods are 1.26%, 4.96%, and 7.87%, respectively. Note the lag in the impact of the rapid money growth on the inflation rate.

Due to lagged impacts, the inflation rate will likely decline to the 3-5% range for 2023. Since prices are not perfectly flexible downward, when money growth is abruptly decreased the real output growth in the economy will likely decline, also. The abrupt slowing in the two-year averages of money growth, from the high teens in 2021 and 2022 to 4.66% for the two-years ending January 1, 2023, along with the declines in the money supply during 2023, raise the prospect not just of slower economic growth but of a recession.

The government requires us to hold our retirement funds in liquid assets, such as cash, short term securities, bonds, or stocks. This is why inflation so easily damages our retirement funds. Unless our rate of earnings on financial investments exceeded the inflation rates in recent periods (if yours did not, don’t feel alone), our retirement funds have decreased in purchasing power during that time. For example, over the last two years, your rate of earnings on financial assets had to be 7.87% per year to maintain purchasing power.

Government finances its debt with new money (don’t you wish you could??) and you and I pay in loss of purchasing power of our retirement funds. The same is true for our wages, interest earnings, and dividend income, if any of these apply.

“Inflation is taxation without legislation” —Milton Friedman

“Inflation destroys saving…” —Kevin Brady

Post 9 – Grief

Blog, Featured Posts, Posts, Rett Syndrome

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Post 9 – GriefGrief has to be the least sought after aspect of this worldly experience, yet it hits us all. In A Grief Observed, the Christian writer C.S. Lewis documents his emotions and thoughts after the loss of his wife. The book documents his journey through his initial anger and grief to thankfulness for the time with his wife.

My cousin and his wife lost their daughter in a car wreck when she was a junior in high school. I saw then that losing a child is the worst.

In my last post, I told you about Ashley Fry and Henry Engel, and their unique positions in the Rett Syndrome community. Due to Richard Engel’s presence on television, the public shared in the Engel’s Rett Syndrome journey. Mary paid honor to this public by communicating her experience at the loss of Henry in document that is as emotionally charged as it is well written.

I am sharing Mary’s text with you. Grief is powerful when love is powerful.

If you have not done so already, please first read the post about Ashley and Henry that I sent a few weeks ago, as it will give you the context for this one. You can find it on my web site at the link below.

Rett Syndrome (cliffordlfry.com

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I am happy to report that Richard and Mary have a new child, Theo. My bet is that Theo is very loved.

By Mary Forrest Engel

I’ve been thinking a lot about a photo recently. It was taken in southern Turkey after the

horrific earthquakes

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left the area devastated. In the photo, a father sits next to a pile of rubble that contains the body of his daughter who had been killed. He is holding her hand. The rest of her body is trapped under debris. It’s a haunting, gut-wrenching image.
I kept going back to look at it. It resonated with me and touched on so many feelings that are constantly swirling in my head these days. I’m not comparing my situation to his; our losses are clearly different. Last August,

our son Henry passed away

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from complications brought on by a neurological condition called Rett Syndrome, which he valiantly fought for almost seven years.
When I look at that photo of the dad in Turkey, I am reminded that the innate desire to have physical contact with your child is universal from the moment they are born — and if they tragically die before you do, when they are dead as well.
Courtesy Mary Forest Engel

The photo brought me back to sitting with our son Henry’s body after he died. As long as he remained a physical presence on this Earth, I wanted to be with him. We sat with him in our home for hours. Changed his clothes. It was summer. I put shorts on him, and a T-shirt out of habit. I chose one of his softest, coziest ones.

That evening when the people from the funeral home came to get his body, I carried him to the car. It was the last time I would ever carry my beautiful Henry. How many times had I carried him in his life? Hundreds? Thousands? He was almost like an appendage to me; we were physically intertwined due to his disability and him needing me to move him around, to be his legs.
My crowning achievement of this was at a birthday party he went to at an indoor play facility. We almost didn’t go, as I thought, “How the hell am I going to do this?” But then I thought, “How can I deprive him of the chance to go to a birthday party?” I carried him myself through the maze; his smiles were the best thank you I have ever received.

Ever since Henry was born, I had clung to routine and schedules to feel a sense of control over a situation that really couldn’t be controlled. And then he died, and so much of my routine went out the window. But without even realizing what I was doing, I created one last routine for us.

Courtesy Mary Forrest Engel

The people who worked at the funeral home — two of the kindest people I’ve ever met — said I could come see Henry’s body in the days leading up to the cremation. I went to sit with him every day for a week. I went at 9 a.m. and 5 p.m.
They would have him ready for me, and I’d go into the room and cry, stroke his hair and face and rest my head next to his. I brought a different assortment of books and toys each time. I’d push the buttons on the toys and listen to the sounds, which I had heard so many times when he had pushed them. Henry loved music. I sang some of his favorite songs and played others on my phone. “Who Let the Dogs Out” and a variety of Katy Perry and Lizzo songs felt disjointed … and at the same time, perfectly right in the little room where I sat with him.
That period of my life is a blur, but those hours with Henry’s body are vivid in my mind. I would wake up feeling anxious to see him. Longing for him. Each time I went I would stay for about an hour, then leave the room and head to the front door of the funeral home before turning back for one last goodbye. It was so hard to leave, but we also have a younger son, Theo, who needed me, and he was in the forefront of my mind as well.
A few friends asked to come with me one day. We were all crying. They took turns stroking his gorgeous hair (Henry had the best hair) and speaking or singing to him. We hugged. Then someone said something, which I can’t recall, but it was funny, and despite ourselves, we all laughed. It was so awful, surreal and beautiful at the same time. The human spirit is truly amazing. I like to think that Henry was enjoying watching all of us crying, laughing and talking together surrounding his body. He always liked to be in the mix.

Grief makes you do some seemingly weird things. Or maybe grief makes us behave in a way that is our truest self.
My husband, Richard, was a bit hesitant about what I was doing at first. This kind of grief is unlike anything either of us had felt before. There’s no roadmap. He didn’t know if it would cause me more pain to have this ritual that I had created, but he came with me. He realized the value in having this time to do the impossible: attempt to say goodbye to Henry.

One time we were there together, and I stepped out of the room for a bit. When I came back, I heard Richard talking as I was about to open the door. I didn’t go in. I let him have time alone with Henry’s body. I didn’t ask him what he said; I didn’t have to.
Grief makes you do some seemingly weird things. Or maybe grief makes us behave in a way that is our truest self, because every impulse I had felt completely organic.

As I sat with Henry, I noticed that his nose was running. I hadn’t had reason to think about this before, but of course bodies leak fluid. There’s something I never thought I would write in an essay, but here we are. I would wipe Henry’s nose while I sat with his body, and I kept some of the tissues. They are now in a drawer in my dresser. Will I keep them forever? I don’t know. But any part of Henry in any form — be it hair, teeth, runny nose tissues — is precious right now.

Courtesy Mary Forrest Engel

Shortly after Henry passed, I listened to an excellent Ted Talk by author and podcaster Nora McInerny called “We don’t move on from grief. We move forward with it.” At one point, she shares that she licked her hands clean after scattering her husband’s ashes, because she was afraid of losing more than she had already.

While I didn’t do that with Henry’s ashes, I understood her impulse completely. We scattered some of the ashes at a tree in a park that Henry loved. For months afterward, I could see remnants of ashes when I visited. It had been a very dry summer, and the ground was hard. I didn’t expect to see them for that long, and it was comforting. “He’s here,” I thought.

Six months later, I’ve now come to realize that he’s everywhere. Wherever I go and whatever I do, he’s with me.

The funeral director said I would know when it was time to say goodbye and give the go-ahead for the cremation. She was right. I thought I would never be able to let his body go, but there came a time when it was clear.

The day of the cremation, we went multiple times to sit with him. At one point, we left for a little while to get a coffee. I remember feeling like an alien mingling with these people who were going about their everyday lives while we were preparing to take our son to be cremated.

Then we drove to the cemetery in complete silence, his oddly lovely rainbow-colored casket made of woven willow in between us in the back of the hearse. We sat in the church for 45 minutes. Just us. It felt like five minutes. Then it was time to leave the crematorium and walk away from his body — this body I knew so well, loved more than life itself and fought to keep alive for years.

Courtesy Mary Forrest Engel

I am thankful to have had that week. I know not every grieving person has the ability to do this, and not everyone wants or needs to. It was surreal, heartbreaking, gut-wrenching … and also filled with so much love. There’s just so much love, and that’s what has gotten me through.

I keep thinking about the father and his daughter in Turkey — and the love that was radiating out of that photo. I know that kind of love, and I know that it never fades, never goes away. There’s a saying: Grief is the price we pay for love.
Would I go back and do every second over again with Henry, knowing that there would be this much pain at the end? Yes. A million times, yes.