A species of talent
Matt and his Daddy, happy together from the very beginning, 1986.
“…happiness is a species of talent, for which some people have superior aptitudes.”
— George Will
Our younger son Matt was born with a rare genetic disorder that would not be diagnosed for many years, at which time there were only about six known cases in the world. At birth, what we knew immediately was that he had a raggedy mess of a heart; four separate defects that would require repeated open heart surgeries for as long as he lives. The need for surgery in infancy was balanced against the risk of undergoing such an extensive procedure on so tiny a baby, and the cardiologists waited as long as they could. He had his first open heart surgery just before his first birthday.
Because of the limits on physical stamina his heart condition created (and also because of the developmental disability that goes along with the genetic disorder we did not yet know about) he was late with many of his milestones in infancy, but a few of them he reached quite early. In particular, he began smiling what all witnesses agreed were genuine smiles at just one week old, and has not stopped smiling since.
Those smiles decorated countless photos taken in childhood, and continue into photos taken in adulthood. The severe limitations of his physical heart were apparently compensated by heart of a different kind. I can say honestly that I have never known a person more forgiving, more ready to love people and life itself, more gifted at the rare talent of happiness. May we all value and imitate those who have this gift.
This post was originally published seven years ago today. The original post, comments and photo are linked, along with two other related posts, below. These links to related posts, and their thumbnail photos, do not appear in the blog feed; they are only visible when viewing the individual posts by clicking on each one. I have no idea why, nor do I know how they choose the related posts. That’s just the way WordPress does things.
Defeat Despair 
Good morning, Julia!
I hope that you and Matt are safe and well.
Yes, Matt’s smile seems almost ceaseless. Even when there’s gravity in a situation. Still, it’s so much better than not being a smiley person. He also knows that smiling can be infectious, and uses that tool often.
I’m smiling right now, thinking about it!
I was trying to figure out when there’s ever been gravity in any situation where you have been with Matt; it seems like we had nonstop fun activities the few times you’ve been together. There have been a few times in his life when the smile totally vanishes– such as the days just before and after Jeff’s death. One of the hardest aspects of that horrible time was not only suffering such anguish myself, but watching Matt suffer too, and being powerless to do anything about it. When Matt’s smile is gone, you know the situation is dismal indeed. In fact, the only other time I can remember his smile going missing for days, was after his first open heart surgery, just before his first birthday.
Oh, how heart wrenching that surgery must have been for you, too! Do you think he was in much pain? Do you think he may have taken cues from your and Jeff’s concern? I would imagine such a surgery would be exhausting for the patient. It sounds as if subsequent surgeries didn’t rob him, and you, of his smile?
That first open heart surgery was worse than the subsequent four put together, and not just because Matt was so tiny. Heart surgery has come a long, long way just in Matt’s lifetime. As an infant not yet a year old, he could hardly take any cues from us, but he was strapped down in an immobile position for about five days after the surgery, with the tube in his trachea and all kinds of other tubes coming out of his body. And yes, he was obviously in tremendous pain and very frightened, not least because being tied down like that and rendered immobile is terrifying. Before surgery they sat down with us and showed us a baby doll with various stitched-in openings where they inserted various tubes, telling us what each one would be and what it was for. By the time they got finished the little doll was covered in medical tubing and looked truly pathetic. They said it would be less shocking if we knew what to expect when we first saw our baby after surgery. But it was still a shock to see our 18-pound infant with all those punctured places and tubes coming out. (He only weighed 18 pounds due to the heart failure which had kept his weight low in the months before they finally knew they had to do surgery.) They also warned me that when he first woke up, they might need to tell me to get out of his line of sight because typically, the babies would go through all the motions of trying to scream (which they could not do with the trachea tube down their throats), crying out to their parents to rescue them, and often that would play havoc with the heart rhythms. Sure enough, the minute Matt spotted me he looked at me as if to say “HELP ME!” and began to try to fight his way out of the restraints that had him strapped down, spread-eagle style, and his heart rhythms shot way up and they yelled “get out of his sight!” I was “prepared” for all this but still it was one of the most horrible experiences of my life. I still get upset when I think about it, so I don’t think about it much. The worst part was he very nearly did not survive the surgery. He went into tachycardia post-op, which is not uncommon, but all their interventions were doing nothing to improve it. At one point they told us they had done everything they could do and we would have to just hope that he continued to survive it until it passed. Later Jeff said, “I kept thinking, why did he have to go through all that pain if he was just going to die anyway?” (It’s a question I later asked myself about Jeff, but of course I think we both would have said that in Jeff’s case, even two or three extra years of life were worth the suffering.) I will never forget how relieved I was when they loosened all the straps and let me hold my baby again and walk around with him. The nurses said “You were so happy you were just floating down the hall!” But it would be many days before Matt would smile again. I have others stories about how I managed to get him to do that, but this is too long and painful already.
Oh, Julia, that is so sad. And you and Jeff were so young then, too.
However you coaxed Matt into smiling again, I’m sure glad that you did!
Sending big cyber hugs!
The two things I discovered that helped Matt smile again were: 1. a jack-in-the-box in the cardiac surgeon’s office that had totally cracked him up when we went in for his pre-op visits. I never see those toys anymore, and seldom saw them even when Matt was a baby, but he totally loved it and laughed at it to the point of hysteria every time the clown would come popping out. Remembering this one evening, in sheer desperation and a horrible fear that he was never going to smile again, I put him in one of the cardiac ward’s strollers and trekked across the hospital and into the adjacent darkened clinical building to the clinic, to find that jack-in-the-box in the deserted, after-hours quiet of the waiting room where Matt had first seen it. It worked! He didn’t get hysterical or even laugh at all, but I did see a smile. The other thing that first made him smile a bit was seeing Mr. Rogers’ face on television, singing to him. No wonder Fred Rogers became my hero.
Great picture; so precious!
Thank you, Chris. Obviously, it has become even more precious as the years have passed.
What a great photo! Happiness shines!
Thank you, Mary Ann. Matt was such a precious baby. I’m glad I didn’t know then what lay in store for him (or us) in the years to come.
How beautiful is the soul that God can see the true essence of His creation yet, how sad that most are hampered by their own eyesight. A wonderful sharing Julia…thank you!!
Thank you, Steve. I’m always happy to “see” you here. How are you and your loved ones doing during this shutdown? Hope everyone is well and (reasonably) happy. I appreciate your being here! BTW I thought of you recently when I was going through some old photos. I found one of me (a black and white shot) that you had taken that time we went out taking photos in the woods. WOW, that was nearly 45 years ago! I guess we should feel lucky to still be here, still taking photos!
I still have a couple that you took of me. Those were taken up by the Vanderbilt Observatory if you recall. Fun day and I can’t believe you talked me into it but, so glad you did. Especially showing me all you went through to develop them…so very interesting. Please send me that shot you found, I’d love to see if I even kept you in focus 🙂
Thank you for the honor Julia, of just being able to catch your wonderful post and how transparent you are in sharing them. It is always a blessing for me to read them and gain a deeper significance on another’s world/life.
Staying safe and vigilant!
Steve~
I didn’t remember where it was except that it seems like it was somewhere close to campus. I was always bumming rides off people to take me to places where I could take photos! I don’t remember where I found the photo or where I put it, or even if I kept it at all, but if I come across it again I’ll scan and send it to you. I think I did send you the one I found a few years ago, which I took of you and Greg B. in political science class? He and so many of our classmates went on to very impressive jobs in politics or government, working for the big names in both parties. I’m glad you enjoy the blog!
Amazing, Julia. I can’t imagine the strength this took — but also the rewards. And what a great picture of Jeff and Matt ❤ .
Thank you Susan. It truly is bittersweet to see such photos and posts. For a long time I just avoided all such encounters as much as I could — each one was like stepping on a land mine of fresh grief — but I finally realized the only way out was through, and I try to focus on gratitude.
I have no doubt of that. You had heartbreaking losses so close together, and lost your husband so much younger than most. I realize that the loss is just so, so deep. Thinking about the permanence of such things just shocks me and takes away my breath sometimes — and I haven’t even been through it myself, to truly know the depth. I admire how you have kept going. And I hope the pictures will increasingly bring comfort and happiness as the years go by.
Thank you, Susan. Being a relatively young widow is very hard. Of the hundreds of friends Jeff and I made through college and every military assignment, many of whom I’m still in touch with, I am the first man or woman among us to be widowed. So I’m left basically without a peer group, as my same-age friends are all busy with their families, as they should be, and we have less in common but the memories. Grief aside, it’s a very difficult position in which to find myself. Widows are not part of anyone’s target demographic (except for scam artists and sales people) and widows with disabled adult sons are even more unwanted. So, I’ve learned to be alone most of the time. This is something I’m naturally well suited to be able to do, so that makes it a bit easier. But having Matt with me 24/7 during the shutdown has been a blessing.
Matt has a way of being the brightness in a day! I’ll always remember Jeff’s service and Matt and Drew at the gravesite and then afterwards when the family and friends shared “celebrating Jeff’s life”. That was a most special day for Bill and me! 💛🙏🏻
Sheila, I’m so glad you could be there. I missed so much of what went on during the service, but I have it all on a very good, professionally filmed video. Hopefully you were able to see it when I posted it three years ago.
Yes, I did see it and we also have some really good photos that Bill was able to get, as well. And the snowflakes…..
The sky was crying with me, but softly.