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His ‘n’ Hers

This post describes, my recovery from the loss of my wife to a degenerative neurological condition called Huntington’s Disease. She was healed of this condition when she went to live with our Heavenly Father at 2:30AM, the 10th of January 2021. You can read the announcement here.

Or if you would like to read our story from the beginning, you can start with: How We Got Here…

As we continue getting settled in, the place is really beginning to come together. This afternoon (Sunday) we will be getting our washer and dryer delivered. They are both made by LG and while I have never owned one of their appliances before, I did have a couple LG phones that I really liked, so I’m hopeful.

I mentioned last week that a dear friend’s daughter died of HD. Well this week there were visitation hours over in the Dallas area so I attended. I am so glad I did!

In business there is the term, “flying the flag” that refers to attending a meeting with little or no expectation of really doing anything useful, but you go because you feel you need to. As I was driving to the visitation I was feeling on some level that this was a bit of a “flying the flag” kind of trip. I was going because she was a dear friend and I wanted to be there to help support her but I had no idea what that would look like. Plus, to be honest, there was a certain amount of apprehension as well. After all, we had never actually met so I guess on some level you never really know, do you?

But what I found was very different from those worrisome thoughts. Jean is as wonderful a lady in person as she is online, and her family is great too. Turns out that her daughter taught at a local Christian school and a lot of former students were stopping by to pay their respects – which says a lot about who she was during her life here on earth. But more importantly, attending the visitation really did accomplish some things that were very positive.

In case you didn’t know, Janet donated her body to the local medical school to help train future doctors in anatomy. Consequently, when Janet died, her “final arrangements” consisted of calling a pager number and telling the school where they could pick up the body. There was, therefore, no visitation, no memorial service, and no funeral – just a phone call and a pickup by a local mortuary. In six months to a year when the school is done with Janet’s body they will cremate what is left and send the ashes to us via UPS.

Now don’t get me wrong, her body donation made the time immediately following her death much more bearable. Moreover, I am so glad that she made that choice because it was a perfect expression of her life and attitude. But there were also negatives to that decision. For instance, seeing her body in a casket would have provided a certain kind of closure, which Frannie and I missed.

But in the end, while I benefited from this visitation greatly, this visit wasn’t about me. The primary goal was still to support Jean and her family. I have never met IRL (In Real Life) someone that I had first met online. Hence, one thing I became aware of was that, for me at least, the initial meeting felt a tad awkward. We had talked so many times, about all manner of things, so in one way it seemed like we were old friends, but in another way we were just meeting. Still, we had time to share blessings and challenges, and I felt very blessed by the time together – and hope Jean did too.

On a completely different track, this week I realized a couple of other nice things about living in a small town like Mineral Wells. First, at night it gets really dark so you can see so many stars, it is incredible! Second, it is quiet. When we were living in Pearland, the TV volume was typically set around 30 to 40 on a 100-point scale. Here in Mineral Wells, with the same TV displaying the same programming, I have the volume set between 10 and 12.

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Many years ago, a common gift idea for newlyweds was “His ‘n’ Hers” gifts. At one time, nearly anything that both members of the couple could use came in special monogrammed versions. However, linens were often the most common of such gift idea – and the most practical. When Janet and I were married, Janet’s best friend (and Frannie’s future godmother and namesake) gave us a set of monogrammed towels and washcloths from LL Bean. Amazingly, some of the towels survive to this day.

That towel serves as a reminder to me that as a married couple there are certain things that we should share. However, one thing that we should not share is symptoms – and sometimes when caring for someone 24/7 it is hard to avoid that sort of “togetherness.”

The first time I ran into this effect was with my first wife’s mother. All mother-in-law jokes aside, she was one of the most emotionally hardened, manipulative, bigoted people I ever had the displeasure to meet. She would come home at night laughing about how she had twisted a person’s words and manipulated situations to accomplish what she wanted – oh, and did I mention that she worked in Child Protective Services? Sweet, right?

From day one, she angered me and I was offended by her warped sense of ethics that allowed her to do things like tell her daughter that if her future son-in-law had a black best man she was going to walk out on the ceremony. It’s a long story, but I didn’t find out about it until years later. When I did, I blew my stack, and had to deal with her retribution for years. Which is another long story.

The point is that the more I thought about what she had done, the more emotionally hardened I became. When I realized what was happening, I was confused. How could I become like the person I disliked so much? But then I was going through some counseling, and the therapist explained it to me. She said that at the subconscious level our mind doesn’t understand right and wrong, so if it sees me focusing on something a lot – like what a jerk my ex’s mother was – it would figure, “Oh, that’s what Mike wants to emulate,” and start moving me emotionally in that direction.

But this principle also appears in other places – like in the Scriptures where Paul gives us the prescription for preventing the problem: “Focus your mind on things above, not on things on the earth.” Col 3:2.

In other words, concentrate on the good stuff, and the best of the good stuff is our Creator.

While this is an important lesson for everyone, I think that it is particularly critical for caregivers. On the support forums you are inundated with people asking for help with a loved one who is becoming increasingly argumentative, judgmental, and accusatory. Sometimes you see that the original poster has started mirroring their loved one’s emotional state – which the loved one sees and can, in turn, react to by amplifying their behavior.

So ‘round and ‘round she goes,

and where she stops, nobody knows.

Compounding this tragedy is that the emotional responses that started the cycle in the first place weren’t even real, but the symptom of a disease. So they end up with His ‘n’ Hers symptoms. What is needed is a way to break the cycle of ever-worsening actions and reactions – and Paul’s prescription is an excellent tonic. But it will require letting go of some stuff before you can experience its salutary effect.

For example, there’s the attitude that says, “Well they started it! They have to say, ‘I’m sorry’ first.” Of course there are two immediate problems with that perspective.

First, you probably aren’t five years old any more. Do I really need to go into more detail here?

Second, the person who you are wanting the apology from is ill. Often things like repentance, logic, and even “common sense” are all things that they simply don’t possess any more. Sometimes expecting them to behave in a different way is akin to asking a paraplegic to run a 100-yard dash.

The other factor that plays in here is forgiveness. Very often as a caregiver you truly have been wronged by the person that you are caring for, and that injury must be dealt with. Thankfully we live in a world where our Creator has also made true forgiveness available, and it is only that forgiveness that has the power to wipe the slate clean and give us a fresh start – both with Him, and with our fellows.

In Christ, Amen ☩

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A prayer for when you are feeling short of patience…

“Blessed are You, Lord God, King of the Universe. It is right that I should at all times and in all circumstances bless You for Your compassion and forgiveness. I know firsthand how healing the words, ‘I forgive you,’ can be. So today I want to bless You especially for the gift of being able to forgive others. Thank You for making available the blessing of forgiveness to all. Amen.”

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UNambiguous Loss

This post describes, my recovery from the loss of my wife to a degenerative neurological condition called Huntington’s Disease. She was healed of this condition when she went to live with our Heavenly Father at 2:30AM, the 10th of January 2021. You can read the announcement here.

Or if you would like to read our story from the beginning, you can start with: How We Got Here…

This week we are preparing for our move, and as you read this we are making our final preparations for the movers who, if everything goes as planned, will arrive bright and early tomorrow morning and start packing us. The movers estimate that it will take eight hours to get everything in the truck, so the day after, we will start our migration north.

Getting ready to move means going through a lot of old papers, especially in our garage. I have told you before that Janet was a school teacher. However, she was also something of a pack rat. In our garage we have boxes with her grade books from classes she taught 40 years or more ago. Likewise, there were boxes of canceled checks that were not only written on accounts that don’t exist anymore, but in some cases on banks that don’t exist anymore!

However, I also found other things… One such find was a note that she wrote sometime in August of 2019. I know that because in it, she refers to the shooting that took place on the 3rd of that month where a deranged man shot and killed 22 people at a Walmart in El Paso. I don’t know why she wrote it or who it was for as she never showed it to me. She was apparently worried that I would be “inspired” by his actions and go on a similar killing spree.

I well remember those times. She was constantly worried about anything and everything. It was then that I started having to censor the radio and TV programming. I also had to be very careful about what I said around her because there was no knowing what news item or bit of conversation she would pick up on and start obsessing over.

For example, if I came home from work upset about something trivial that happened at work, she would right away jump to the conclusion that I was about to get fired, and she would go on about it for days. Ironically, by the time I eventually did get fired (for not communicating well!) her condition had degenerated to the point that she only asked me a couple times if we had enough money, and that was about it.

Thankfully, I had been putting a bit of money aside and we had enough for two months, which I was able to stretch to three months. Still, God brought this job along just in time.

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Several months ago I wrote a post entitled Ambiguous Loss. As I wrote then, this sort of loss can take two forms, the most common of which is feeling you have lost someone when in some way they are still there. A typical example of this type of loss is when dementia turns your gentle, loving spouse into a harsh, judgmental stranger. Or when your bubbly, outgoing loved one starts becoming sullen and unresponsive.

UNambiguous Loss is the old-fashioned, familiar kind, where the bed is empty and you are now officially a widow, widower, or orphan.

(Which, by the way, makes me wonder why isn’t there a word for describing someone who has lost a sibling? We really should have one…)

Even when the loss is finally unambiguous, the ambiguity can nevertheless continue in other ways. For example, a few days ago I got a care package from Houston Hospice that included a couple of books on the topic of grieving. Unfortunately, the books were not written with the world of caregivers in mind. Reading them, you find that the books do spend a page or two talking about death after a “prolonged illness.” The problem is that as you read further, you see that they define “prolonged” in terms of weeks and months – not years or even decades. Not surprisingly then, these books were written assuming a timeline that proceeds something like this:

  1. Loved one becomes ill, injured, etc.
  2. Loved one dies.
  3. Grief starts.

To be fair, this plan works fine for the majority of deaths – like if Janet had been hit by a bus, or had suffered a sudden heart attack. But it falls apart when the illness takes years or decades to reach its solemn conclusion. The problem is that in the sort of scenario many caregivers face, the three steps are no longer discrete points in time delineated by sharp edges separating one step from the next.

Rather, the steps get smeared out in time like a rain drop running down a window, or a tear running down a cheek. As a result, the steps start overlapping, getting smeared together. Or to put it another way, each step becomes a process. Sometimes it felt as though all three were happening simultaneously.

To begin with, it is not at all clear when Janet became ill – or is that even the right way to formulate the question? Perhaps I should say it is not at all clear when Janet became symptomatic. Remember, HD is a genetic condition so there was never a time in her life when her genes weren’t messed up. But even determining the onset of symptoms can be fuzzy. Her jaw used to “pop” shut. She said she had TMJ (temporomandibular joint problems) but maybe it was the HD.

But surely death is an absolute, isn’t it? Well in one sense, yes. But in another, I’m not so sure. As I look back, I try to figure out when the Janet I knew started dying. For months, my vigil by her bed had not been about waiting for death, because she seemed to be drifting back and forth between two worlds: the one where we all live, and the one where she is now. So even the concept of death became indistinct and cloudy.

In the end, about all I do know for sure is that, for me, the grieving did certainly not start the 10th of January 2021. For me, and I suspect many others who are caring for loved ones that truly have “prolonged illnesses,” the grieving starts a long time before the person you love and are caring for stops breathing.

In fact, if you look at any list of symptoms of grief you will see that the list is largely indistinguishable from the normal everyday experience of being a long term caregiver. Depression? Check. Feelings of guilt? Check. Exhaustion? Loss of Control? Loneliness? Check, check and check again!

I guess the point here is that things we read can serve to set out expectations of what is right or normal during grieving. So what happens when someone who is already in a precarious state emotionally reads a book that models grieving in a way that is so very different from their own experience? I’ll tell you one thing that can happen: the feelings of guilt that were never very far away, jump out and, taking center stage, start yelling at you.

“See your wife is dead and you can’t even do that right! Man, you are a piece of work! There is nothing that you can’t mess up.”

Needless to say, those sorts of comments are a load of what my Dad used to put on his roses.

Beyond the guilt, the other big issue that has been making itself known is anxiety – especially the fear of being alone. It suddenly struck me today that things are getting more and more serious between Frannie and her boyfriend. His mom and aunt are calling her regularly on the phone and she has met most of his family – of course everybody loves her. So Frannie could be moving back to Houston in the next few months to get married. Which, to be clear, would be a good thing. I have always wanted Frannie to have a life of her own, but still…

So, day by day, the battle goes on and along the way I am learning a few things. For example, it is pretty clear to me that Frannie and I have a lot deeper understanding of love than we would have had otherwise. I remember once, a long time ago, telling Frannie while I was helping Janet get cleaned up after a pee accident, “Don’t even consider telling a young man ‘I love you’ unless you would be willing to do this for him.”

By George, I think she has been listening.

In Christ, Amen ☩

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A prayer for when your grief seems overwhelming…

“Blessed are You, Lord God, King of the Universe. It is right that I should at all times and in all circumstances bless You for the gifts of strength and wisdom that You give so richly to all Your children. But today I want to bless You especially for eyes and ears that are learning to work better and better. Many times when he was among us in the flesh, Jesus talked about needing eyes that can see and ears that can hear. The lessons are hard, but I am learning to develop both. Thank you. Amen.”

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Taking Time, Learning to See

This post describes, my recovery from the loss of my wife to a degenerative neurological condition called Huntington’s Disease. She was healed of this condition when she went to live with our Heavenly Father at 2:30AM, the 10th of January 2021. You can read the announcement here.

Or if you would like to read our story from the beginning, you can start with: How We Got Here…

This week has been spent getting ready for the big move to our new home. We were approved to take possession of the property on the 7th and met with a couple of moving company representatives on Saturday to get quotes.

Frannie will be glad to leave the apartment and the town we’ve been living in for the past several years because there are way too many “ghosts” inhabiting the area – memories of places we frequented with Janet, and things we did in better times. Perhaps, moving is the best thing after all. We need a clean break, and the job is requiring us to make one.

The name of the town is “Mineral Wells,” due to the numerous mineral springs in the area. Back in the day, I guess the area was quite popular for people wanting to “take the waters.” The town has a population of about 17,000, which is about the same size as the town I grew up in.

Another nice confirmation that this will be a good place for us is that I discovered St Mark’s Lutheran Church, only a five- to ten-minute walk from our front door. That is significant, not because we will be going there, but for the name. St Mark’s in Abington, Massachusetts is the first church Janet and I joined after our wedding 35 years ago. And it was also the church where our son was baptized.

I did, however, find the church we will be attending, about a ten minute drive away. It is named Divine Mercy Lutheran, and the services and the people are wonderful. Plus, I really like the name, as “divine mercy” is what is getting me through each day. Thankfully, that is a resource that is in endless supply – all you have to do is ask, and you shall receive.

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A few days ago I was driving and (as people do when they are new to an area) was tuning around on the radio, looking for a good station. I came across a radio program where the people were talking about the tragedy of doctors recommending aborting babies that are “imperfect” in some way. This got me thinking about the birth of our son, so I did something I hardly ever do – I called in.

While on hold, I discovered that the program was on the nationwide Roman Catholic radio network, Relevant Radio. So if you also happened to be listening and heard “Michael from Texas” – yep, that was me. And I even got in a quick plug for HD awareness. In any case, my story was very simple: When Janet was pregnant for the first time, we had an amniocentesis done and the results were not good. They showed the potential for a condition called “trisomy 13.” Babies with this condition are born with very severe deformities that are always fatal. We were told that these babies rarely see six months of age, and that we should abort “it” as soon as possible.

This was a situation Janet and I had not considered, but after calming down from the panic that the doctors had done their best to instill, we made the decision to not abort and that if the baby lived six months, six weeks, or six days, he would be loved every minute of that time.

As I said on the radio, to make a long story short, the tests were wrong. Our son did not have trisomy 13 and if we had gone through with the abortion, as the medical “experts” had advised, we would have killed a perfectly normal, healthy baby – our son who is, today, a Major in the US Army with three daughters of his own.

The point of my telling you this is not really about abortion per se, but the title of this post: Taking Time, Learning to See.

While I was still taking care of Janet, it seemed like every day was filled with the fine details of caring for her, and appropriately so. But one of the things I have had time to do now, as a part of the grieving process, is to slow down and consider the big picture of life – the larger story arcs of the past 35 years. And I have begun to notice some interesting patterns.

For example, people sometimes asked me how I could do what I was doing. It was, after all, clearly taking its toll. To be honest, when I was in the middle of it all, the answers I gave tended to be the kind that resulted in the person not asking that kind of “fool question” again. Now I would be more gentle (I hope) in formulating my response.

When Janet and I met, she was living with the results of growing up with a father that was feeling the effects of undiagnosed Huntington’s Disease. Due to his abusiveness, she had grown hard and cold. She said that the engagement ring I gave her (which had a lot of frilly gold work on it) was the first piece of feminine jewelry she had ever owned. Her choice was between staying stuck in what she grew up with, or with the help of God, moving on. Likewise, I could have looked her over and decided she was a train wreck on two legs. We chose life.

After we were married, we had the choice of following the advice of doctors or accepting whatever happened as a blessing. We chose life.

Finally, when she was diagnosed with Huntington’s Disease she still had choices – there are places in the US where it is now legal to murder yourself. But again, we chose life.

Get the point? There was a pattern in our lives together that I had not really seen before. I was much too close to each individual decision to see them as being connected. But now I do. I understand that no decision is ever made in isolation, but forms a part of a pattern that runs throughout our life. I have met people who have had huge shifts in their lives but looking back later realized that their “big change” was part of a larger reality that they hadn’t seen previously.

This is what I meant a bit ago when I talked about the “big picture” or “long story arcs” in our lives. During this grieving process, I have come to see the value in: “Taking Time, Learning to See.” The thing I have discovered with my new vision is a clearer view of who Janet and I both are, and (especially) who God is.

The other arc I have come to recognize is one stretching back generations. There’s my father who, despite the horrific conditions in which he was raised, chose life in the US Army over a probable death in prison. There’s his mother, who, after the death of her first husband, chose life by marrying my grandfather. There’s my great-grandparents who chose life in a new country over war in what is now the Czech Republic. And the story goes on and on.

To be clear, none of the stories were “fairytales” and nobody “lived happily ever after.” They were all, on one level, imperfect and flawed in some way, but they all resulted in something good that led to a new and better future. Which is not too surprising given The Hand that is at work. The hand of a Workman that is an expert at taking broken things and making them beautiful: broken hearts, broken lives, broken homes – even broken worlds.

By examining the bigger picture in which I have a part, I see that even in the times when I didn’t know which way to turn, I was never really lost. Moreover, problem resolution may take decades or even generations, but in the end, hopes are fulfilled and promises are kept.

In Christ, Amen ☩

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A prayer for when you are feeling aimless…

“Blessed are You, Lord God, King of the Universe. It is right that I should at all times and in all circumstances bless You for the blessings of life. But today I want to bless You especially for Your eternal perspective. It is at times frustrating to have to wait, but by faith I can know that life in Your presence is always brimming over with hope – even when, for a time, I can’t see it. Amen.”

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Okay, Now What?

This post describes, my recovery from the loss of my wife to a degenerative neurological condition called Huntington’s Disease. She was healed of this condition when she went to live with our Heavenly Father at 2:30AM, the 10th of January 2021. You can read the announcement here.

Or if you would like to read our story from the beginning, you can start with: How We Got Here…

This is the section where I would normally give an update on my Janet’s health condition, but that is clearly no longer of any significance, given her change of residence to heaven.

So now come the adaptations and the wondering about how to be a widower. And the first step in that process is figuring out how to tell someone what happened without breaking down in tears. I got a lot of opportunity to practice this week because I started a new job on Wednesday and, because the job is in a different part of the state, I was looking for a house or apartment for Frannie and I to rent. The conversation would go something like this:

“So, Mr. Porter, how many adults will be living here?”

“Just two, my daughter and I.”

“Oh?”

Nothing judgmental there, all she said was, “Oh?” So why do I feel like I’m being interrogated?

“Yes, my wife just passed away Sunday from a degenerative neurological condition called Huntington’s Disease. It has been described as having Alzheimer’s, Parkinson’s and ALS simultaneously…”

“Oh, I’m so sorry for your loss.”

At this point, I would typically just say “Thank you,” and try to move on with the conversation. Occasionally, they would say something about how “brave” I was. I know that such comments are intended as compliments or reassurance. But, in this context at least, being “brave” simply means continuing to move forward and refusing to die too. Most people have no idea how many ways a person can be dead and still continue to breathe.

Semper Prorsum.

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I know what you’re thinking: “Didn’t he say last week that he wasn’t going to be posting for a while?” And you are right. The only problem was that when it got right down to it, I couldn’t keep myself from writing. The title is really what I have been going through this week: “Now what?” Of course that simple question could be answered in a number of ways:

  • Now what, for our family?
  • Now what, for Frannie and me personally?
  • Now what, for my writing and this blog?
  • Now what, for my job?

But as I contemplated it, I had a thought that this question, as simple and as common as it is, may actually be part of the problem – or at least, part of my problem.

When Janet was still ill, I used to ask myself this question quite often because I was trying to understand where things were going. What was the next symptom? What was the next challenge to be faced and overcome? I wanted to know what the future held. And now I am feeling the same desire – though for a slightly different reason. So what, in the final analysis, has Janet’s transition to the next life fundamentally changed? As it turns out, not a whole lot.

You see, we all like to tell ourselves that once our loved one has gone on or the present predicament has passed, life will calm down and be more predictable. Sounds good in theory, but the truth is that life remains stubbornly UNpredictable. The exact nature of the unpredictability may change, but at the end of the day, I’m still left trying to figure out what is coming down the road so I know what to do about it. I still think that I can prevent more “bad stuff” from happening – all the while ignoring the fact that there isn’t anything I can do. Not really.

Oh, I can take action based on projections and predictions of likely future events, but those are really just guesses – and sometimes not even very well-educated ones. So what should I do? Well, stopping isn’t really an option. Likewise, hiding and licking my wounds sounds oh so comforting, but is likewise out. All that is left, really, is for me to do the same as I have always done: take it one day at a time, doing what God has put before me for that day. Or at least, that’s the same as I have always done on my better days…

In any case, this week I started my new job and I think I am going to enjoy it, as there is a lot of work to do and solid support in the company to get it done. Can’t ask for much more than that! I also found a house for us to move to in Mineral Wells, Texas. It will be a long drive to work, but as compensation, it will be a long drive through some of the prettiest country on earth: the Texas Hill Country!

To give you a sense of my new work, this is a picture of the morning rush hour in beautiful downtown Cisco, Texas.

This is going to be great!

In Christ, Amen ☩

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A prayer for when you feel directionless…

“Blessed are You, Lord God, King of the Universe. It is right that I should at all times and in all circumstances bless You for being there to guide and direct the steps of Your people, and through them, the world. But today I want to bless You especially for the grace that keeps my feet moving and guides their path. You know that sometimes I feel like stopping and hiding. Thank You for the faith to keep walking. Amen.”

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Mary lost her son, a story of Holy Week

This post describes, in part, the effects of a degenerative neurological condition called Huntington’s Disease. Any negative behavior on the part of my wife should be attributed to that condition. Any negative behavior on the part of myself should be attributed to my need for God’s ongoing grace.

This week I’m doing something that I have never done before. You can call it a mindful memorial, a tribute, or just trying to deal with the reality of being surrounded by death from various neurodegenerative diseases – the actual label doesn’t really matter, I guess. On any given day, the various support forums carry a litany of death from a multitude of causes that have nothing to do with viruses, and so unfortunately draw little attention.

These brief notices are typically written by the deceased’s caregiver and naturally talk about how wonderful their late loved one was – which is as it should be. But something can get lost with that approach to memorialization: the caring people left behind. These short obituaries talk about the deceased’s challenges and bravery in the face of adversity, but rarely mention the sacrifices that the caregiver makes to allow their loved one to reach the end of their days with some dignity. Neither is it mentioned that these extraordinary measures are undertaken knowing that they won’t change the long-term prognosis even one single bit.

So this week I want to talk about one particular HD-related death from the standpoint of the patient’s caregiver – his mother. Please don’t see this choice as in any way denigrating the contributions of people with other relationships. Fathers lose daughters, children lose parents, and spouses lose each other, and they all perform noble service.

Rather, my choice of subject to stand in for the hundreds of thousands of caregivers worldwide was simple and pragmatic. It is someone that I know personally, and her son is also the fourth family member with HD that she has cared for.

The mother’s name is Maria and she might be familiar to some of you. She lives in Italy and over the past month I have posted several prayer requests for her and her son Giuseppe. So many of you have responded that Maria was, at one point, left speechless. She thought she was the only asking God to give her strength. Not quite! And for the record, I am incredibly proud of the family we have assembled here.

To make a long story short, Giuseppe had JHD and like so many of his countrymen, contracted the coronavirus. Maria spent many long hours living at the hospital helping to care for him. In fact, at one point she went 48 hours without sleeping or eating, and ended up collapsing on the floor. She said the nursing staff was initially afraid that she had suffered a heart attack, but she was just exhausted.

Then during Holy Week, the end came. Since then, there has been an unending stream of details to be managed and arrangements to be made. As I was thinking about this today (Wednesday, April 15th), I started writing. Even though I never met the young man, I had come to feel very close to him, despite his being on the other side of a very large ocean. So the writing was initially to clear my own head and help deal with my own sense of loss – though, to tell the truth, I felt a bit embarrassed to even mention my feelings.

Eventually, my feelings fell to the wayside and the writing morphed into a series of thoughts on motherhood in general, and Maria’s loving dedication to her family in particular.

I have been thinking about it and it seems to me that, for mothers, raising children involves a long series of “letting go” events. For nine months you carry them in the womb but even here, at the very beginning, they are a separate person, so there is a relationship with the child, a connection. The paradox is that they are at once, in you and yet distinct from you. They have their own gender, their own blood type, and their own heartbeat. While this heartbeat may from time to time synchronize with yours, it is unique.

This point becomes obvious at birth when the umbilical cord connecting the two of you is severed and they can become a fully independent human being. But still, you feed them from your breast and change their diapers. Then one day you have to let go of that connection because they no longer need the same degree of attention. I well remember the poignant moment when my Janet realized that she had just breast-fed our son for the last time. But he made it clear that, while milk was all fine and good, he wanted solid food – and lots of it!

After that, life seems full of letting go events that strain, redefine and restructure the connection: potty training, starting school, dances, dating, graduation, college, marriage, and parenthood – each with its own unique set of letting go moments.

But sometimes something goes wrong with that neat plan, and there are other things that a mother has to let go of. When Maria realized that Giuseppe had the Juvenile form of Huntington’s Disease, she had to learn to let go of his laughter and smiles, and eventually the personable young man that he was. Then in a kind of hellish regression, she had to return to feeding and changing him, and doing her very best to care for his most basic physical and emotional needs. But then, doctors and nurses became involved.

I will always remember the message I got from Maria when Giuseppe was being taken to the hospital. I am just learning Italian, but even without running the text through Google Translate, I recognized the words or phrases for “my son”, “hospital”, “intubated”, and “panicking”. The resulting online prayer request is when many of you became acquainted with her name, and there were dozens of you. (Thank you Pamela at the Huntington’s Disease Prayer Support Group!)

Eventually, in the final stages, Maria had to face letting him go completely in death. But even then, her mother’s love was so strong that she continued hanging on, becoming a living “la Pietà” mourning a son, not of marble, but of flesh and blood. She cradled him, craving one more moment of human contact. Soon even that was gone, as people explained to her about “contagions” and the necessity of cremation. She had to let go of even his physical body. In the end, it appeared that all she would have left to show for a lifetime of love and commitment, was just a few handfuls of ashes.

But no, God does not leave His children so destitute. Maria also has memories: The warmth and intimacy of suckling him that first time in the delivery room. The look of brave determination on his face as he headed off for the first day of elementary school. The pride he showed at graduation, and many, many more treasured moments that “moths cannot eat nor rust destroy.”

But in addition to the memories, God also has promises for the future. Promises of renewed hope and love that can, frankly, be so hard to hear while we are in the midst of the mourning. However, we can be confident that these promises have no “expiration date” and their time will come. For example, as people of faith, we have the assurance that death is not the hopeless end to an essentially meaningless life. Rather, one of the great lessons of Easter is that, as strange as it may sound, in death there is healing. When Jesus appeared to his disciple following the resurrection, He still bore the marks of the crucifixion. The difference was that they were no longer bleeding wounds, they were healed and Jesus was none the worse for wear. And so it is for Giuseppe and all our loved ones: There is no HD in heaven.

But for right now those around Maria are supporting her, and while she is so tired and full of grief that she doesn’t at times know which way to turn, she is not the kind to stay down. The life of a Christian in this world is not about “either/or” but “both/and”. We aren’t confronted with the alternatives of either sinner or saint, or either being faithful or grieving. In both cases, we are “both/and”. Always remember that the opposite of grief is not faithfulness, but rather apathy.

So if you have been praying for Maria, please continue to do so – which if you thinks about it is another case of “both/and”. She is both in need of prayer and already under infinite God’s care. To protect her from total despair, God is continuing to fill her heart every day with fresh hope, and the rod of steel that He placed in her spine means that this time of pain and sorrow will not leave her permanently bowed down.

This loss will not be the end of her, and the testimony of her story is yet another assurance that ours won’t be the end of us either…

In Christ, Amen ☩

A prayer for when you mourn…

“Blessed are You, Lord God, King of the Universe. It is right that I should at all times and in all circumstances bless You for your wonderous promises. But today I want to bless you especially for understanding and sanctifying our grief. In scripture we see Jesus first weeping at the tomb of his friend Lazarus, and then reassuring the two grieving sisters that in Him there is life regardless of how things look at the moment. And then again, we have Jesus’ reassuring words, ‘Blessed are those who mourn, for they shall be comforted.’ Thank you for the opportunity to experience the grief of separations so we might experience an even greater joy at our reunions. Amen”