Category Archives: Have a Heart

Please help us get a new van.

In 2008, I got my first motorized wheelchair, and we were blessed with an opportunity to buy a twice used 2000 Chevrolet Express 3500 wheelchair van, which was first a prison van and then a medical taxi (I call it our “Paddy Wagon,” since the expression came from stereotypical Irish cops collecting groups of stereotypical Irish drunks in police vans).
20170705_130533
The van has served us well for almost 9 years as our primary vehicle.  “We’ve” had to put some money into it to keep it going, but when it all adds up, it was less than we’d have paid even for a regular van in payments, much less for a handicapped van that can fit our family.

Me and kids at Roper

Me and my kids in 2013, after my aortic graft surgery

Our economic situation simple: we make a little less than enough to get by in modern America.  Unless I should obtain the time and inspiration to write a best-selling book, we strike the lottery or get a really good  investment, we’ll never make much more than we do now.
So when a major expense arises, we need help.
Every few months, something malfunctions in the van.
We had to purchase a second vehicle, using up the small amount of room we had in our budget to add another monthly payment, so we only have to use the van when we need the power chair and so we have a backup when it fails.  The very day we went to pick up the “new” car, the lift stopped working.  When my abdominal aneurysm ruptures or requires surgery, if I survive, I will most likely lose my ability to walk completely.  In the meantime, I need to be able to keep strain off my aorta to delay that surgery as long as possible.
It won’t be long before our eldest daughter has to use a scooter or power chair–technically she already should because she subluxes her ankles every time she walks very far, but we can’t get insurance to pay for one.
As communities, Muslims, Mormons and Evangelicals seem to be very good at rallying around their members.  We Catholics, as a community, need to show the same generosity with ourselves as we do with strangers, to provide the “safety net” that keeps people from falling completely into destitution.  On an individual basis, we have many wonderful Catholic friends who have helped us more than we can ever thank them for.  We know someone out there can afford to help us.
We’re hoping to get a used, 2015 or 2016 Ford Transit Wagon XLT 350, medium height, for around $25,000.  I figure we can modify it ourselves for around $3000-5000.
So accounting for fundraising fees, taxes, etc., we’re trying to raise about $30,000-35000 just for that, though if a generous benefactor wants to help with about $80000 in other expenses we expect to face in the near future, we’d be very grateful.  If someone out there reading this happens to own a car dealership or know a car dealer (I recently heard a rumor that a major Catholic donor in our state owns a dealership), I’m going to be bold and ask if, in the name of Our Lord, you could please donate a van directly?
Please share this post. Please share the link to our fundraiser.  Most of all, please pray that God opens people’s hearts to share, and that He profoundly blesses all those who have helped us.

Please click here to donate.

Advertisements

Scars and Self-image

As I approach the 19th anniversary of my first heart surgery, meaning that I’ve had my artificial valve now for half my life(!), the “me” I think of when I approach a mirror is still the “me” without the scars.   Now, the original “zipper” is less noticeable both from age and from the others that now surround it.  Every now and then, one strikes me.  A few weeks ago, I suddenly “saw”/noticed how big and dark the scar in my side from two years ago is-the one from the drainage tube and the chyle surgery, which healed wrong so Dr. Peterseim cut it back open in the CVICU–I can still feel the sensation of his fingers in my side–removed the infected tissue and partially stitched it back up, but it had to heal with mainly biodegradable gauze.  Every 2 days for my last month and a half in the hospital, a wound care nurse would come in and change my bandages.
They give my wife, the schoolteacher, a crash course in wound care and showed her how to do what a specialized nurse had been doing–but it saved us getting a home care nurse.
There was a lot to reflect on in that wound alone.  Then there was my  feeding tube hole, which required a slightly *different* kind of cleaning and dressing, and my trach hole–all three requiring slightly different treatments, and different healing times. . . .
Tonight, I looked in the mirror, and somehow the scar from my carotid-subclavian bypass, which prepared the way for my arch-abdominal aorta repair, struck my attention just now and inspired this post.  The bypass is kind of cool in and of itself–you can see my pulse in the tube that runs up my collar bone to my neck–but right under it is the scar, slightly curved, more like a fossilized centipede or a lightning bolt in a movie.
I can make an effort to see the beauty and the meaning in my scars–thankfully, my wife doesn’t need an effort to do it–and it’s much easier with the ones from two years ago–but still, after 19 years, I still expect to see my unscarred “self,” and I’m different.   And maybe it’s different when one chooses it, but I don’t understand how anyone can voluntarily do that–whether it’s piercing, or tattoos, plastic surgery or whatever–to make a permanent change that will be there, not just for the rest of this earthly life but possibly in the Resurrection.
While Catechism paragraph 2297 comes into play in these matters, I’m not really thinking in terms of morality here.  I’m more musing on the emotional experience, but that is  seen with a view to the resurrection of the body.  Presumably, the resurrected body will be free of worldly defects, though some of the Saints suggest those “defects” would instead be glorified.

Rare Disease Day #RDD2015 

February seems to be the month of choice for everything-awareness, including Marfan syndrome.  I usually do a whole series of blog posts (or re-posts) in February but didn’t this year.  Meanwhile, I learned February 28 is also #RareDiseaseDay, and there’s a Twitter thing for rare disease awareness.  Click on either of the category tags for this post to see a list of my posts related to #Marfansyndrome or what used to be called the “Have a Heart for Marfan” campaign.

Rare Disease Day #RDD2015 

February seems to be the month of choice for everything-awareness, including Marfan syndrome.  I usually do a whole series of blog posts (or re-posts) in February but didn’t this year.  Meanwhile, I learned February 28 is also #RareDiseaseDay, and there’s a Twitter thing for rare disease awareness.  Click on either of the category tags for this post to see a list of my posts related to #Marfansyndrome or what used to be called the “Have a Heart for Marfan” campaign.

Are you being Saved?

The person or persons who write “Coffee With Jesus,” the popular webcomic, hit another one out of the ballpark (much like Casting Crowns, they’re pretty Catholic in their thought, even though they insist they’re non-denominational).

I “got saved” almost every week in sixth grade at “Chapel” at Thomas Sumter. Almost every week, some speaker or Christian rock group or something would come with often truly inspiring and sometimes superficial cheesy, “testimonies” (or performances, as the case may be) and finish by saying, “Now, I want you all to bow your heads and give your life to Jesus,” and they would always have us recite the same words in unison, and my thought was always, “And these people would take issue with liturgical prayer. . . .”

Me, circa sixth grade

Almost every week, that is, except the two times my dad, the school’s first Catholic teacher, had his turn (each week a different faculty member would plan the program for Chapel). The first time, he had Fr. Anthony Rigoli, OMI, come, and the second time, he had a panel of students, myself included, speak about treating each other with love and respect (and speaking against bullying). This was inspired by one of his students unwittingly writing a paper about me. She wrote of this thin boy in sixth grade with glasses who was always being picked on and never seemed to notice when everyone laughed at him in the halls (I did), knocked his books out of his hands (I thought I was just clumsy), etc., and yet always seemed happy.

Interestingly, our headmaster once made the same comment.  He passed me in the hall and said, “That’s what I admire about you, John: you’re always smiling.”

I was honored that Mr. Owens, known for his very strict personality, took the time to say that–though at the time I was actually squinting.   This gets to any interesting side note about body language, Asperger syndrome and Marfan syndrome, since a) I have a hard time understanding other people’s expressions, and b) people have a hard time understanding mine.  Even after 14 years, Mary can’t read most of my expressions since they rarely indicate emotion and usually indicate some sort of pain, eye strain, trying to see, etc., though I do try to make a point of smiling.

Anyway, it’s interesting to me how people constantly want to engage in “institutional reform” of things that are just human nature.  As Joe Sobran put it regarding attempts to legislate against “hate,” “some people are just jerks.”  The Reformation supposedly started about “sale of indulgences” and yet many Protestant denominations require their members to tithe.   They criticize Catholics who seem to live a superficial religion but aren’t “Christians,” and yet so many Protestants seem to live the same way.

Salvation is always a process.  The greatest Saints refused to say they had achieved spiritual perfection, even if they had.  The only times in the Bible when Jesus makes definitive statements about people’s salvation are a) to Dismas on the Cross and b) to Zacchaeus at his house, when Zacchaeus promises to give just about everything away (and even then He doesn’t say “You are saved,” just “salvation has come to this house,” which is still an indication of process).

“Work out your salvation in fear and trembling” (Philippians 2:12).

Have a Heart for Marfan Month

You can’t know what it meant to me to see this description ca. 1995 when I first read this.  It is exactly what I used to feel/hear all the time.

<blockquote>“I’ve got a good deal to say,” our prisoner said slowly. “I want to tell you gentlemen all about it.”
“Hadn’t you better reserve that for your trial?” asked the inspector.
“I may never be tried,” he answered. “You needn’t look startled. It isn’t suicide I am thinking of. Are you a doctor?” He turned his fierce dark eyes upon me as he asked this last question.
“Yes, I am,” I answered.
“Then put your hand here,” he said, with a smile, motioning with his manacled wrists towards his chest.
I did so; and became at once conscious of an extraordinary throbbing and commotion which was going on inside. The walls of his chest seemed to thrill and quiver as a frail building would do inside when some powerful engine was at work. In the silence of the room I could hear a dull humming and buzzing noise which proceeded from the same source.
“Why,” I cried, “you have an aortic aneurism!”</blockquote>
–Sir Arthur Conan Doyle, _A Study in Scarlet_, Chapter 6 (emphasis added)

Give Kids The World: Ice Cream for Breakfast

Give Kids the World Village is having a special fundraiser/awareness campaign called “Ice Cream for Breakfast.”

Ice Cream For Breakfast is a grass-roots awareness and fundraising campaign inspired by one of the more unique traditions of our thousands of visiting wish families. At Give Kids The World, families are treated to complimentary, all-you-can-eat ice cream in the Village’s Ice Cream Palace from morning until night- even for breakfast!

We hope you will help support the Village by setting a goal, creating a mini-campaign online and asking your friends and family to join you in your efforts. Once you meet your goal we encourage you to host your own ice cream social or just meet your supporters for a scoop at your neighborhood ice cream parlor.

You can read more and either make a donation or start a mini-campaign by clicking here.
Give Kids the World Village is an amazing entity: an all-inclusive, self-contained resort for “Wish families” in Orlando, FL. The resort itself has enough to fill a week, especially for families with disabilities. While we were there last November, we encountered families who ended up spending most of their vacations in the hospital, although we were all blessed with relatively stable help. Families are supposed to come through sponsoring “Wish” programs like Make a Wish, though I’ve read of at least one family that raised their own funds independently. It’s a “once in a lifetime” vacation, and a particular child can only be sponsored once, but families with multiple children with severe illnesses have been known to come back for other children.
In any case, the wish child and immediate family are always welcome to return and visit the resort for “day use,” play miniature golf, ride the carousel, etc., and eat at the restaurants (below) for a nominal fee. The child gets a “star” in the Castle of Miracles:

Allie's Star is somewhere in this "constellation"

Allie’s Star is somewhere in this “constellation”


Many of the volunteers we encountered were relatives of past wish children. They say that the staff is like over 90% volunteers, and they ranged from teenagers to college students to working adults to retirees.
The Make a Wish process is a lot simpler than one might think. The child no longer has to be terminally ill: just a diagnosis of a condition that may likely cause death before age 18. Indeed, I saw on my Facebook news feed the other day an article from Make a Wish about how “Wish children” tend to have better prognoses. We applied for Allie, got a letter from our primary care physician, and within 2 weeks got a letter that she was approved. This was about a year ago. Two local volunteers met with us, talked in detail with me and with Allie about her wishes, her interests, etc., and with me about our family’s overall situation. I explained that while it was Allie’s “wish”, the urgency pertained to my health, and they put us on a fast track to get in for November.
I hadn’t blogged much about it because I’d intended, and still intend, to write a book about our experience, based around selections from the literally thousands of digital photos we took.
Anyway, a week at GKTW includes 3 days at Disney World, 1 day at Sea World and 2 days at Universal/Islands of Adventure. It includes all the Make-a-Wish amenities (like cutting in line and free professional photos), plus things that are specific to GKTW: every morning and evening at the resort has an “event.” The family gets a food card for 3 meals a day at one of the restaurants (the Ginger Bread House, all you can eat buffet, sponsored by Perkins, a sandwich shop sponsored by Boston Market, or an “Express breakfast” at the Ice Cream Palace). Then there’s all you can eat Ice cream from early in the morning till like 11 at night, and the possibility of having pizza delivered to the villa: an option we used one evening just for the sake of trying it, but they feed you so much you don’t need to.
In addition to the “cutting in line” and free photos at the amusement parks, GKTW has characters representing the various parks almost every morning. There is some sort of party almost every evening, and the family gets copies of all photos taken by GKTW photographers, along with options in the going away package to get different albums, posters, etc. We have a nice poster hanging on our wall of our family with “Belle.”
"Tale as old as time . . ."

“Tale as old as time . . .”


The founder of GKTW, is Henri Landwirth, arguably one of the most amazing “unsung heroes” of the world. A Holocaust survivor, Landwirth got his US citizenship and was immediately drafted to the Korean War, later using the GI Bill to get a degree in hotel management. He worked his way up in the hotel field and got into the hotel business in Florida right when NASA and Disney World were getting started. He also made friends with some of the astronauts. Eventually, he started a number of charities, including an astronaut scholarship, a charity to provide clothes for homeless and abused children, and, of course, Give Kids the World. He had been involved with Make-a-Wish since the seventies, serving as one of the main providers of hotels for wish families. When he learned that a little girl passed away before her arrangements could be made, he started GKTW to expedite travel arrangements. Over the years, it grew from free hotel rooms to the villas to the full resort it is today.
We made ample use of the unlimited ice cream, stopping every day right before we left for the parks to get shakes and/or sundaes “to go,” and having “ice cream for breakfast” on our second to last day. However, we didn’t many pictures there.
Our last meal at the Ice Cream Palace

Our last meal at the Ice Cream Palace