My Uncle Karl

I recently talked a bit about my Uncle Karl here on the blog. It made me realize there's no one place I've collected pictures and some of my thoughts about him. The video I had of Greg, with Karl untying his shoe, was the first time I'd ever recorded one of Karl's many 'games' and 'pranks' and it left me with a desire to better document my amazing Uncle while he's around. I have hundreds of memories of Karl throughout the years. My Mom was always very close to her baby brother, and it was incredibly important that all of her children have similar relationships with him. She's made a scrapbook that has a few pictures of him when he was young, so I scanned in a few, and searched through the pictures I've taken since the girls were born to put together a small collection of pictures of my Uncle and my family.

Here's Karl as a baby.

He was always a bit of a miracle. My Grandmother had German Measles while she was pregnant with Karl, like many women that year, and an entire generation of children like Karl were born. With spastic cerebral palsy (which is defined as having one or more tight muscle groups that spasm or don't work correctly), Karl's body would never work the way it was 'supposed to'. In my Uncle's case, his legs have almost zero muscle and he lacks any ability to control them in any usable way. His hands are also tight and give him limited grasping abilities. He is also blind (which was actually unrelated, he had glaucoma at 6 years old which took his sight), and mentally severely handicapped as well, and has lost hearing in one ear. For the first four years he spent most of his time at Primary Children's Hospital -- before he was five years old he had pneumonia 28 times. He also had spinal meningitis twice. He spent years in and out of body casts and other contraptions as a kid, and my Mom says she remembers more times than she can count, the doctor's telling them he wouldn't live much longer. He ran horrible fevers often, above 105 degrees, and my Mom remembers her father being able to accurately estimate his temperature within a few tenths of a degree just by touch. (My Mom remembers him having to have frequent ice baths, and his body temperature going above the thermometer more times than she can count).

(Top: Uncle Mike. Next Row: My Mom, Aunt Judy, Aunt Teresa, Uncle Jeff. Bottom row: Uncle Kerry and Uncle Karl.)

Despite a very difficult, painful childhood -- Karl was happy. Karl is happy. It is his nature. He's also quite sensitive and sweet, and is easily upset or hurt by loud or forceful words. My Mom remembers her and her siblings arguments causing him to burst into tears -- so then they'd just glare across the room and mouth stuff like, "Now look what you've done!" My Grandparents would occasionally leave Karl in my Mom's care while they went on (very rare) vacations . . . so I actually have very similar memories of my sisters and I fighting, it making Karl cry, us promising loudly we weren't mad at each other and making a big show of just how well we were getting along for Karl's sake, all the while glaring and poking and burying our knuckles painfully into one another in silent warfare.

This is Karl at the Special Olympics. He's been actively involved for years -- and is a heavily decorated bowler. :-) He's also an Eagle Scout. (My Mom says, "we're still wondering exactly how he got the computer merit badge.") He's gotten to go to countless camps and activities, and as family we've gotten to be involved in some pretty cool events and causes. I remember helping host dances for the Special Mutual group that Karl attended through Church, and I have to say, I dance very, very well with someone in a wheelchair. :-)

Here's my Mom's very '70s family - Uncle Mike, Uncle Jeff, Aunt Teresa, Aunt Judy; Grandpa in the middle; My Mom, Uncle Karl and Grandma; Kerry at the bottom.

Because Karl is blind, sound plays a very important role in his life. He loves making noise. My Mom had on the radio once, and happened to have wheeled Karl up to the piano to bang around on the keys a little, when she suddenly noticed he was playing a very simple version of what was on the radio. That's the first time they discovered that Karl has an incredible ear for music, and can pluck out on the piano (one key at a time, as he can only really play with his index finger) any tune you play for him, despite having never seen the keys.
Karl also liked to make less pleasant noise. :-) One of his favorite things to do was, when left too close to the silverware drawer while in his wheelchair, toss the forks and spoons around the kitchen to hear them clang against the kitchen floor. Problem was, someone usually caught on pretty quickly and put a stop to his throwing of utensils all willy nilly. So, he would quietly get all the silverware out of the drawer and place it gently on the counter top -- then SMASH, with a sweep of his arm send the whole thing clattering loudly to the floor, laughing uproariously as his family came rushing in to investigate the sudden crash. When Karl was younger and smaller, he crawled around his house a lot, pulling around on his front arms, up on his elbows. He would drag the kitchen chair to the top of the stairs, if someone had forgotten to shut the door, and happily push that chair down the stairs to hear it loudly clang down the stairs.
As Karl got older, and I start to have memories of him, I remember his love of music and sound. He always had radios playing (Radio Disney is a favorite), and a TV (usually on a TV that had lost it's picture, so my sisters and I would sometimes have a hard time following what was happening on Sesame Street.) He loved the same cartoons and shows I did as a kid -- with an exception. He LOVES game shows. Wheel of Fortune is one of his favorites, but just a few years back, it was on before he got home from school. So, Grandpa would record it for him every day. Each day, Karl would listen to Wheel of Fortune after school. IF the person playing won the big prize, then the video played until the end. But if the person playing lost big, then somehow the tape always 'magically cut off' before Karl could hear them losing, as it made him so sad.


This is Karl and I on my first Halloween. I was about five months old. We were very much 'two peas in a pod' when I was growing up.

Here we are the next year -- it's too bad this is such a blurry picture!
We were cute matching clowns . . .

I try and remember back to when Karl was young like this -- I vaguely remember his crawling around at family parties, but for the most part, I remember him in his chair or lying in one place on the floor on some blankets. I do remember his old, regular wheelchairs, which my sisters and I would take turns racing around the halls of my grandparent's home. (He now has a much more comfortable and useful special wheelchair, designed to fit his body and his rigidness much better.) I remember thinking he knew MORE jokes than anyone else in the world! He could tell jokes forever, and we'd all laugh until it hurt. Only when I was older did I come to find out that Karl only knew one joke. "Why did the chicken cross the road?" "I don't know Karl, why?" "To get to the other side!" Then he'd laugh so hard for several minutes than everyone else would start laughing too -- it was contagious. And I'm not just talking polite chuckling, I'm talking we all had tears rolling down our faces we were laughing so hard. The funny thing is, as kids, we never understood any of Karl's joke -- we just knew that when he paused, it was time to ask "Why?" and then let him tell his punchline, and laughter would ensue. I loved having Karl tell me jokes. He was also pretty much the best audience ever -- 'cause no matter how cheesy your own joke was, he'd laugh like it was the funniest thing he'd ever heard.
I still to this day play the "Karl, you've got my finger!" game . . . where I hold hands with Karl, until he'll suddenly grab my index finger and squeeze (although with his limited hand strength, it's not much of a squeeze), and I cry out, "Karl, you've got my finger! Karl, give me back my finger!" and I howl and wiggle and play 'tug of war' with him as he laughs, for a minute or so, until he's done and gives me my finger back. I sigh a mighty sigh of relief -- then he grabs my finger again. And repeat. :-)
What I remember most though were the times he came to stay with us at our house while I was growing up. I remember the challenge of trying to feed him while lying on his blankets in our front room -- I remember ravioli being spilled throughout his beard, and water being squirted out of his mouth as the two of us couldn't stop laughing. It would be SUCH a mess, but the two of us would laugh the whole time. Getting him cleaned up after a simple meal was a bit of an ordeal. Karl loved coming to our house, but after a day or two would get very, very homesick for his Mom and Dad. And, I think, for his bathtub. See, Karl couldn't be bathed at our house. My grandparent's had an extra long bathtub, as Karl isn't exactly 'bendy' with those stiff muscle groups, and therefore had to be laid out almost completely straight in a tub. He loves baths more than anything, and I know it was one of the first things he always did after spending a few days getting coated in spaghetti oh's and yogurt at our house.
Like I mentioned before, I remember us kids fighting, Karl crying, us apologizing profusely, than carrying on silent revenge throughout the evening. :-) On a sweeter note, I remember family prayers with Karl. :-) We all liked the rare occasions Karl would say prayer at our house. You couldn't understand much of what he said (even my grandparents, his most effective translators, can only catch a small fraction of what he says if it's anything outside his recognized list of words), but I remember each of us listening intently for our names to be spoken, and counting how many times we got mentioned. :-) I also remember one time Karl went to Church with us. I got to take Karl to my Primary class with me, and I was beyond thrilled. I remember during singing time though, Karl loudly (and unintelligibly) sang along, and some of the other kids started laughing and mocking him. I was livid -- I was seriously ready to walk over and punch someone in the middle of Primary. :-) My teacher put her arm around me and wisely told me that I shouldn't be angry with the other kids, that they just didn't know better -- that not everyone was as lucky as me to have an Uncle like Karl, to teach me about how much God loved all his children, and how amazing and special we all were in our own way. And how kind it was of me to 'share' my Uncle with all these kids who didn't get to have the same experiences as I did growing up with Karl. I proudly put my arm around Karl and sang louder too (all the while kinda glaring at the other kids -- it was a lesson I learned bit by bit.)

This is Thanksgiving 2003 -- Karl hanging out with several of his nieces (Lacy, Talina, and my cousins Makayla and Marissa). Karl loves the company of his nieces and nephews -- he lights up just having us come into the house. He happily hugs us, calls us turkeys and hugs us until we have to yell for 'help!' It's a game, but he can get a fairly tight grip sometimes when your head is locked under his arm, and your only choice is to go limp and wait for him to be done squeezing you. :-)

I mentioned before that Karl took an instant liking to Greg. To a point I'm almost a little jealous. At times, I feel a bit usurped :-) Karl will find out we've come over and call out, "Greg? Greg?" whereas my entire childhood it was Karl calling out for me. It was one of the reasons I fell so head over heels in love with Greg so quickly though, he was beyond sweet and patient and funny with my Uncle, and that (along with how well he treated his Mom) was definitely a big flag for me that I'd really found someone special, who'd treat me and any kids we'd have together, with the same love and patience.
Here's Greg and I at our wedding reception with Karl, in 2004.

This is Christmas 2004. Karl LOVES Christmas. And birthdays. And pretty much any holiday, but present unwrapping ones definitely top the list.

Karl loves to rip into a present, tearing the paper to shreds, laughing joyously the whole time. And it doesn't matter if he gets a new toy with all the bells and whistles, or a plain t-shirt, inside the paper, he could not be more thrilled and grateful. Buying Karl presents is a highlight of the holiday season -- I think there's even a bit of competitiveness among the family at times, of who can buy the coolest present for Karl. He loves toys, especially ones that make lots of noise. Singing stuffed animals, toy keyboards, music boxes, whatever. I found a SpongeBob toy for him once at Big Lots that blew raspberries when you pinched its nose. That's solid gold right there. The one who took the prize though, had to be Aunt Judy, the year she was able to snatch a Tickle Me Elmo for him when they were sold out everywhere. Sesame Street with uncontrollable tickling and laughter = perfect.

Birthdays are a big deal to Karl too -- in fact, he remembers whose birthday is coming up next no matter the time of year. Which I loved growing up, 'cause my birthday is May 30th, and I was the ONLY May birthday for the longest time. So my birthday was over a month long. Karl would have Grandma get me on the phone so he could sing me "Happy Birthday", starting weeks before the actual event. Every time we'd come visit during the month of May, it was all, "HAPPY BIRTHDAY HILARY!" I loved it. I've told Greg that it shows how much I've grown up that I'm so OK with having our daughters birthdays both in May (the 19th & 20th), since it effectively shortened my birthday celebration to ten days, and yet I'm OK with it. :-)

Karl loves babies. He wants to hold them, and feel their little hands and feet. Babies aren't always thrilled about this, since Karl has no real ability to hold them with any real security . . . you basically place a baby on Karl's lap, and have several other adults hovering around in case the baby starts to slip off in one direction or the other. :-) Annie always handled it surprisingly well . . . she looks wary here, at 6 weeks old, but she wasn't screaming. Which for Annie at 6 weeks old, was a bit of an anomaly, as she was usually screaming bloody murder.

Here's Annie and Karl (with my Mom and Grandpa) on Christmas 2007.

This was Annie's second birthday party . . . Karl's been at pretty much all the important events and celebrations in mine, and my children's, lives.

It gets harder and harder now, to keep him as involved. A few years ago, my amazing elderly grandparents finally put Karl into a home when my Grandfather had to have shoulder surgery. The fact they were able to keep caring for him at home well into their 70s is amazing! (My Grandmother, bless her, spent well over 50 years, caring for her children who depended on her for their every need. After the rest of her children were raised and moved on, she still had her baby at home, who needed to be fed, bathed, changed, diapered and cared for as if still a toddler.) The fact their bodies could still pick up and move Karl around is remarkable. Especially, 'cause like many people, Karl packed on some pounds in his 40s. :-) Once my Grandpa had his shoulder surgery, he'd desperately hoped to bring Karl back home again, but we all knew that would be impossible. Once both of their bodies had even the slightest rest from their heavy labors, the 'muscle memory' was lost, and they are both too old and fragile to ever be able to work back up to being able to move Karl around like they once did. Although, a huge blessing has been that Karl is genuinely happy where he is now. It's not always easy, remember he mentally is a very small child -- a child suddenly living away from Mom and Dad. But he's in a home with several other residents in wheelchairs, and his caretakers are wonderful and protective of him. He has such a childlike, endearing quality about him -- coupled with the joyfulness that is just part of who he is, and people are naturally drawn to him once they've spent any time with him.


Here's Karl and Annie on Thanksgiving 2008. They are both equally thrilled about their stuffed animals.
(Thanksgiving is Karl's birthday -- so he's always got some fun new toys at Thanksgiving dinner!)

Karl LOVES taking hats off of people. He thinks it's the funniest thing ever. Sometimes Greg will specifically put on a hat when we're around Karl, even though he rarely wears them otherwise. Here's Annie in Greg's hat, so that Karl had something to pull off her head. Annie put up a good fight though, which Karl found hilarious :-)

This was taken at the Annie & Ellie's birthday party last May -- Karl had gotten ahold of some of the left over wrapping paper, and was having the time of his life.

This is how excited Karl is when he opens a present (like this one from this last Christmas), even before he has a clue about what it is. Seriously, he's like the funnest person to give presents to, 'cause he's over the moon excited about it no matter what it is!

Then, from this Easter, just this month, here's Ellie with Uncle Karl. I realized I don't have as many pictures of Ellie and Karl together, and that's something I need to do something about!

Karl's entire life has been a miracle -- a baby wasn't supposed to make it. A toddler who only had another week. A child whose family should say goodbye while they still can. And now, nobody knows how long we'll have Uncle Karl with us. He could live for decades more, or he could leave us at any time. It's important to me that my girls get to know him while they can. That they have as many fun, rich memories of him as I do. And that I record them somewhere, just in case he isn't always around. I watch my girls shyly smile at the other residents at Karl's home. I watch as they chase the puppy who lives there, as they weave between hulking wheelchairs like they're everyday household items -- and I feel incredibly blessed that my kids are growing up lucky enough to have an Uncle Karl to teach them things about life and love and people and compassion that I don't know any other way to teach them.