Back when we learned about Eloise’s deletion and what it would mean, I was devastated. There was almost no literature out there because Eloise’s syndrome was so rare. From what I could tell, Eloise would never be able to speak, read, write, or just do normal “stuff.”

My heart was broken.

Eloise would never say “Mom.” Eloise would never be potty trained. Eloise would never care about celebrating holidays or birthdays. Eloise would never have friends. Eloise would never care about picking out her own clothes. Eloise would never have a love interest. All I could think about was all the things Eloise couldn’t do.

It felt like Eloise’s life — or, rather, the life we had pictured with Eloise — was over before it had even begun.

Then in stepped Ron and Jan, an incredible couple in their 80s who reached out to us after they’d seen us post about Eloise in one of the groups with kids who have a similar deletion. They’d begun following Eloise and her life and wanted to share their experience of raising a kid just like her, Tami.

So, a few months after Eloise’s diagnosis when Brian and I were still heavy in our grief, we had a phonecall with Ron and Jan, all the way from Arizona. They shared their hearts, they shared their struggles, and most of all, they shared Tami with us. And she blew us away.

As I write this in October of 2022, Tami is the oldest case I know of of someone diagnosed with 2q24.3q31.2 deletion. Tami’s deletion starts a little after Eloise’s (thankfully Tami’s deletion missed those pesky sodium channels that induce Dravet-syndrome-like epilepsy) and ends a little before Eloise’s. Tami is also the highest functioning case I know of in this deletion — probably helped in large part by her incredible parents who put their whole hearts and lives into helping her succeed.

Will Eloise follow in Tami’s footsteps? If she does, we’d be honored. The reality is there will be some things Tami could do that Eloise never will be able to. But the reverse might be true, as well. Eloise may very well surprise us in unexpected areas.

But it doesn’t really matter. Even though Tami passed away a few months before Eloise was born, I feel like, thanks to Ron and Jan, that we know her. What Tami did was open our eyes to pieces of a life Eloise could someday live. And it helped us to see that life was far from barren.

Tami became our north star of a life well lived. And a child well loved by her parents.

I want that for Eloise.

Today is the second anniversary of her death, and so I wanted to finally get this published.

You see, after talking with Jan and Ron, it impacted me so much that I tried writing up my own version of Tami’s life from our conversation with them last summer. It felt important to fecord these precous bits of her life. For Tami. For us. For parents of kids to come who don’t know what a full life can look like.

But it never could do Tami justice. So, today, I’ll tell two of Tami’s stories.

First, I am re-posting Tami’s eulogy that Ron and Jan wrote for her funeral. It is both beautiful, and heartbreaking. And fills my heart with such appreciation for their tender love for her.

And then, second, you can read my clumsy re-telling of Tami’s life story. Becuase her story isn’t one of all she couldn’t do but, in fact, of all she could.

Tami deserves to be remembered.

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Tami’s story as told by Jan and Ron

Tami Kay Lohrding was born on June 6, 1966 in Manhattan, KS.  Tami was born with birth defects and needed special care, especially with her feeding. Two days later on the 8^th, a terrible tornado hit Manhattan. KS.  Jan was still in the hospital with Tami during feeding time while Ron and her brother,  Brad, were at friends having dinner in the Kansas State Univ married students apartments.  The nurses flew in the room and rushed the babies to a secure place.  Meanwhile, Ron and friends huddled in the bathroom seeking protection.  Thankfully everyone survived, but the roof was partially missing and there was terrible damage.  That meant that Ron had to quickly find a new place to live and Jan’s mother, who was coming to help, had to be met at the train station.  Jan and Tami were kept in the hospital for a week until there was a home ready for them.  That was Tami’s exciting entry into this world.

Tami was born with a cleft palate and conjoined fingers and toes due to a chromosome deletion.  She faced several surgeries and illnesses.  There were times that we didn’t think she would survive, but she was a fighter and amazed the doctors.  During the stress and struggle to feed her, Ron continued his studies and received his PhD.  The family then moved to Los Alamos, NM where Ron worked at LANL.  Tami started special ed when she was 6 yrs old, riding in a little bus.  From grade school special ed she advanced to High School special ed and graduated in her little cap and gown.  At the age of 21, Tami moved into the Las Cumbres  group home in Los Alamos.  Ron retired from the lab in 1991, started a new company and moved to Albuquerque.  After 4 years, Ron & Jan couldn’t bear the thought of Tami being in Los Alamos and applied with ARCA for Tami to move here. Lohrdings were fortunate that ARCA had just gotten an opening and Tami could move within a few months.  A new and improved life started for her as she moved into her new group home.  Tami worked for a while at Goodwill, putting puzzles together making sure all the pieces were there before they were sold.  Tami has always had an amazing knack for puzzles and was known as the “puzzle queen”.   She was then promoted to the La Paloma Greenhouse doing more work.  She enjoyed filling the pots with dirt for the thousands of geraniums and poinsettias.  

Tami enjoyed a lot of activities until her neck was injured and she had trouble raising her arms.  She participated in Special Olympics, did cross-country skiing in our back yard, shooting basketball hoops, ping-pong, riding her big wheel tricycle (crossing the street going to the park without Mom’s knowledge), riding on a bicycle for two with Dad, helping Mom with laundry, yard work, putting a golf ball in the yard or riding a golf cart with Dad, riding the Tram, swinging for hours in her hammock chair, doing games on her iPad, and playing her version of Dominos and Uno.  Tami enjoyed her daily walks while at home.  Her goal was a long walk to the stop sign and turn around.  Tami was comforted with a deck of cards in her hands and would want a deck to put under her pillow at night.  Some nights we would hear her awake shuffling the cards in her hands.  There are still decks of her cards in each car.  It was also important for her to have a small Readers Digest to flip through the pages. 

Oh how she loved to be pampered!  It was important to have her hair washed and curled.  Every morning and night she had a routine of washing her face and getting Mom’s Olay cream out of the drawer.  Clothes were very important and she insisted on choosing her own.  When she was at Mom & Dads, she would pick out her clothes and make sure they were out for her to wear the next morning.  That meant the clothes in her suitcase wouldn’t come out for return to her house.  Tami loved to go out to eat and wanted to get dressed up.  She had a little book with photographs of her favorite restaurants.  It was important to get her book and show us where she wanted to eat.  

When the COVID-19 self-isolation started on March 17, ARCA sent us a letter stating that we could no longer bring Tami home.  We were hearing of problems in other Sr. living homes and were consumed with worry for Tami’s safety.  We asked ARCA if there was a way Tami could come home and not lose her bed at the Group Home.  They agreed that we could get Tami for a couple of months, April – June.  We are so very grateful to ARCA for allowing us to have Tami home with us for those 3 months.  We were so blessed to have those last days to cherish and remember Tami.

Tami knew her Lord and Savior.  She knew when to say, “Amen” at the end of the Lord’s Prayer.  She was given weekly instructions for Communion in Los Alamos and was excited when she saw the altar prepared with the bread and wine.  Tami would sign “bread” and then “drink” followed by signing “Jesus loves me”.  She insisted on wearing a necklace every day and a cross was her preference.  As we said our nightly bedtime prayers, we would ask God to bless each member of the family.  Then we would say, “God bless….” and in her own way, Tami would say names of her friends at ARCA.   Some nights she had a long list of friends and some nights no one came to mind.

Tami taught us a lot about life.  She taught us love, compassion, and joy in the little things in life.  She would get so excited when she saw a prism rainbow on the wall, the moon, or little flowers along the walk to give to Mom.  How frustrated she must have been at times being very limited with a vocabulary.  That didn’t stop her.  She used what signs she had been taught and if there wasn’t a sign, she made up her own and people understood.  We will miss her hugs, sweet smile, her coming in our bedroom very early in the morning with a wake up kiss on the cheek, and her nightly phone calls.  She would end the call by saying, “I love you.  Bye Bye” 

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“She’s only alive because she’s so stubborn”

“She’s only alive because she’s so stubborn,” a doctor told Ron and Jan when they took their little 18-month-old to get checked out by a medical professional, yet again. That first year, their sweet little babe had been hit with illness after illness after illness but this time they weren’t sure she was going to make it. 

In the doctor’s eyes, it was a miracle their little baby was still here, so it must have been her innate stubbornness that kept her alive. 

Ron and Jan didn’t know at the time how true that statement really was.

A special baby was born

In June of 1966, a baby was born to a Kansas couple named Ron and Jan. She was the pair’s second child — their eldest boy was 2.5 years old at the time — and they were delighted to welcome her into their family.

The doctors noticed immediately that she had a cleft palate, her 4 smallest toes were fused together, and 2 fingers on each tiny hand were also fused together. But, no matter. She was tiny and adorable and they loved her.

The couple named her Tami.

Early feeding troubles begin

Tami had a cleft palate, but not a cleft lip. And when Jan and Ron left the hospital with her, they had no idea what they were in for because doctors offered no instructions nor help – they had to figure it out on their own. 

In order to feed their precious little 18 inch (45cm) 5lb 11 1/2oz (2.7kg) baby girl, they had a tiny cup that would bend and slowly pour milk into Tami’s mouth drop by drop. If she got it too fast, it would come out of her nose. The problem was getting enough milk into Tami. They sat in a big soft chair with their feet on a foot stool while Tami laid in their laps with her head elevated on their knees so that her head was up high enough to make swallowing easier. However, because of Tami’s cleft palate, their tiny daughter would choke far too often. Each feeding took one to two hours. Which meant Ron and Jan were not only exhausted, but often felt afraid their baby girl might not make it.

You would have thought doctors had some suggestions on how to help feed Tami safely and efficiently back then, but nope. Ron and Jan were on their own. 

One day, though, Jan and Ron found that if they mixed Tami’s formula with a little Gerber baby rice mix and put it in a bowl, that they could spoon-feed Tami. And, luckily, the thicker liquid went down better so little Tami stopped choking nearly as much. As time went on, the pair added more and more vegetables to the mix and Tami’s feeding troubles eased some. But it still took a long time time to feed her.

While the couple felt relieved that they had at least problem-solved some of Tami’s feeding difficulties, there were still more hardships to come.

The first signs something was different about Tami

Ron and Jan had already had a son. He was walking by 9 months, potty trained at a year, and started school early. But by 6 months, Tami still wasn’t even showing signs of sitting up on her own. So, as many worried parents do, they took Tami to the doctor to see if he could figure out the root cause.

Tami at 6 months.

When they arrived into the tiny office, the doctor looked at Tami briefly, looked back at Ron and Jan, and then bluntly stated, “Well, if she isn’t sitting yet, she must be retarded.” And left.

Ron and Jan were shocked. Retarded? Their little girl? Was he sure? This wasn’t even something they had considered. By 9 months, Tami had begun sitting on her own, unsupported. But, still, they knew something wasn’t quite right.

So, with a broken heart, they took their little baby home to begin the long road of trying to figure out how they could best help her develop. As normally as possible.

Patterning

The first major therapy Ron and Jan received for Tami was something called the Doman-Delacato Patterning treatment for brain damage. A team came into the family’s home 2 times each day. They put Tami on her tummy and would move her right arm and left leg forward, then switch to her left arm and right leg to simulate crawling. Over and over again they would move Tami’s limbs in an effort to imprint the physical movements into her brain and get her to eventually do the movements herself.

It was rough on Jan as they did these exercises twice each weekday for a year. Because Ron was travelling a lot for work by that time and no family was close by, a lot of the exercises sat on Jan, while she still juggled Tami’s health and feeding issues on top of it all. And still, as months passed, it felt like patterning might not be helping little Tami’s motor skills. But it did seem she might at least be developing better hand eye coordination, cognitive skills, and, well, it stimulated her.

Tami’s toddler years

Tami’s toddler years were rough on the whole family. Even though she took her first steps unassisted by 22 months, Tami had a big personality and let everyone know when she was frustrated or unhappy — which was often. Jan and Ron struggled to understand what she wanted and Tami was unable to express herself. And if she lost the argument, she was not a good loser. To Tami, things needed to be her way or no way. Which was rough on her family, as you can imagine. 

When Tami would become upset, suddenly she would be on the floor, crying, kicking, and making her unhappiness known. Naturally, this made it quite hard to take their little girl almost anywhere, yet Ron and Jan managed. Because even though the rough times could be rough, thankfully it wasn’t a majority of the time. 

Despite the stress, the couple was determined to make outings with Tami happen. So every Sunday Tami went to church with the rest of the family. Not only that, but they all even managed to go on quite a few vacations together. Over the years, Tami flew many a flight and knew the routine. She traveled all over – California, Florida, Minnesota, Wisconsin, Indiana, Hawaii, Kansas – Tami traveled more than many Americans in her 53 years.

Potty training Tami

It wasn’t that Ron and Jan didn’t want to potty train Tami, or that they hadn’t tried, it’s just that there were still a lot of accidents. And there was a lot they were juggling. On top of their struggles with Tami’s occasional stubbornness, Ron and Jan had to keep up with Tami’s regular schedule of occupational therapy and physiotherapy and patterning during the day to stimulate her. 

But when even the special education section of the school refused to take Tami unless she was potty trained, Ron and Jan dove headfirst into their own stubbornness — potty training Tami.

Someone told them to use the sign language letter “t” for Tami’s signal, which was pretty tough with Tami’s unusual fingers because it was hard for her to put her thumb between her two fingers. So, instead, she would make a fist when she needed to go. And, after months of working with Tami diligently, it worked! By age 6, Tami was potty trained and ready to go to a special education school. (Although Jan always sent an extra pair of panties to school with her, and carried around a pair in her purse just in case of accidents.)

Starting school

The first year of school, Tami attended special ed three mornings a week where Tami also now had access to speech therapy and sign language classes, in addition to her normal OT & PT. The second year she moved to 5 mornings a week, and then by the third year she was fulltime. 

Even then, though, it was clear that Tami possessed more than a few traits of autism. She often avoided making eye contact or touching others. And struggled to interact with other kids her age — Tami struggled to control her movements and understand limits. Tami had a huge heart, but when she’d give hugs, she’d hold on tight. And when the child inevitably felt uncomfortable and wanted to break away, Tami would pull them back in. But Tami gravitated to adults, who seemed to treat her “Tami-isms” with tenderness.

Although Tami did love babies. She always wanted to hold babies when she saw them. Just one sign of many that Tami’s heart was gentle and kind.

Thankfully, raising Tami wasn’t all tough. The therapies that Ron and Jan and the school put so much effort into did pay off.

Tami can communicate

Tami had years of speech therapy and sign class. And, eventually, the babbling that started in her early years eventually turned into a few recognizable words.

• Hi (she would practice saying “hi” in the car as the family drove to church each week so Tami could greet her favorite people there)
• Uh oh (one of Tami’s classic and most used phrases)
• Yeah
• No
• I can’t
• It hurts
• Ma (mom)
• Da or Pa (Dad)
• More (Tami eventually learned to recognize this word on billboards and loved “reading” it aloud and used the word  when she wanted more food or whatever she was doing)
• Oh NO! (she would say when something went wrong – Jan would know if she heard that phrase then Tami had lost a puzzle piece under the table or something more serious happened)
• I love you (In her own way, 3 sounds)
• Ho Ho Ho (when she saw Santa Claus)
• Guck guck guck (it was a bit of a struggle, but Tami was able to make a sound in her throat that sounded like a turkey. When Jan or Ron asked her what the turkey said, this is what she did and everyone would laugh.)

In her later years, Tami would call her parents on the phone usually every night after dinner. They’d ask her “yes” and “no” questions and she would answer. “Did you have a good day at work?” “Did you eat chicken tonight?” Some nights when she was talkative and didn’t want to hang up, Jan would ask her if she had something to tell her.  Sometimes she’d jabber on and on and I would say, “Is that so?”  Those talks always made Jan and Ron so happy.

Tami learned many more signs than the words she could speak, but often teachers and others around her weren’t able to understand American Sign Language alone, and definitely couldn’t understand Tami’s modified versions. Because of her fingers, she often had to change them a little. Even so, Tami’s memory for signs was incredible. It could be months or years since she had used a sign like “cracker” but Jan would ask her if she remembered, and Tami would remember right away. 

More therapies began paying off

It wasn’t only Tami’s speech that developed. Tami’s motor skills developed, too.

Tami played putt putt golf, rode horses with her dad, played ball, and even rode her own tricycle. She had both a push trike without pedals and then later a big, low tricycle. In fact, one day she scared her parents when she was still young when she drove across the street all on her own so she could play at the park by herself.

Tami riding a horse with her dad, Ron.

 Tami riding her tricycle along with her older brother.

Tami grows into her own person

Regardless of what Tami did, though, she made it clear she had a mind of her own.

Tami loved clothes. And she especially loved picking out her clothes herself, sometimes to the amusement of her parents as Tami would pick outfits from her closet that were not the best suited for the occasion or the weather. Tami had a closet full of beautiful clothes and people would always tell her how pretty she looked. Later on in life, when she was living apart from Ron and Jan, her love of clothes was apparent in the fact that she had a full closet both at her group home and at home home. Sometimes, when she’d go visit her parents, she would decide she wanted to wear nicer things from her home and not what was in the suitcase she’d brought with her. Sometimes Tami would pick things out of her closet for that day that weren’t exactly suitable for doing things outside, so Ron and Jan would have to sit with her and discuss what might be a better choice. 

Shopping for Tami, however, wasn’t so easy in part because Tami was tiny. She never grew past 4’6″ (137cm), even as an adult. So, through the years, Jan would go shopping on her own. Tami would often fit better in kids’ sizes than adult sizes. Which meant Jan was always so excited when she found something adult looking in the kids section. But finding grown up looking clothes wasn’t always the end. Pants were still often too long, so Jan would then need Tami to stand still while she measured how short to hem the pants. But, depending on her mood, Tami was usually too curious – she often wanted to do other things. But, still, they managed.

And Tami loved so many things, too.

Music

Tami had a record player where she would spend hours and hours listening and putting on record after record to listen — all of which she scratched. She eventually got her own tape cassette & MP3 player. 

Books

Tami loved books, especially Reader’s Digests because they were small and fit in her hands.  She brought them with her everywhere and would “read” them. Though Ron and Jan weren’t subscribers themselves, friends knew to bring their old Readers’ Digests to Tami sho would then “read” each one and carry it around with her. She would even take one to bed every night until they fell apart and she needed to get a new one.  

But, really, Tami loved all kinds of books, even a big old encyclopedia with pictures, children’s books, work books to write in, etc.  She’d take her spending money on vacation and want to go shopping. Top on her list was a special T-shirt,and then followed by a book – she was very particular about what she wanted. If she didn’t find either of those two, then it was a deck of cards. If her family didn’t find what she wanted, they would take another trip to a store until Tami was satisfied.

Cards

Tami was never interested in dolls or stuffed animals to carry around, it was cards that were her comfort. Tami couldn’t go anywhere without a deck close by. She always knew where they were. She’d move the top card to the bottom, and then move on to the next one. Tami had them in the car for travel, in her bed at night, on the table or sofa next to her – it was important that she could always put them in her hands. Jan and Ron noticed Tami needed cards to be okay, so they always made sure she had them. At one point, Ron and Jan counted nearly 30 decks lying around their home. But it wasn’t just card decks, she also loved to play card games like Old Maid and a simplified version of UNO. 

Writing & coloring

Tami learned to write her first name. And so, all her life, in the deliberate writing of a child, Tami would write her first name over and over and over again on pieces of paper. Her last name was a little harder, so she could only ever get the first 2 letters, but still. She was proud. In later years she discovered it was much easier to type her name on a computer than write it out, so Ron would help her use different color fonts to type out T-A-M-I over and over again.

And, even well into her adulthood, Tami insisted that Jan put up her coloring book pages at home. Tami was proud. She colored well.

Puzzles

And puzzles. Boy did Tami love puzzles. At first, her family gave her the wooden puzzles meant for toddlers. Back then, there weren’t little wooden knobs on the pieces, so Jan and Ron put a big, thick pushpin on top of each piece of these 4-5 piece puzzles. That way Tami could pick up each piece with the pushpin. From there, Tami gradually started doing harder and harder puzzles, until Tami got to the point that she could do 60 and sometimes 100-piece puzzles. By the time she was an adult, Tami could put together puzzles at lightning speed that amazed everyone around her. No “normal” adult could figure out as fast as Tami where those pieces went.

Finding out about her genetics

Tami was tested several times to find out if she had any genetic issues. Though in theory technicians should have noticed years ago that something was wrong, her diagnosis didn’t come until a few years ago. The technology to test for some of these genetic and chromosome abnormalities really hasn’t developed until the last few years. So there are many others out there who should also be diagnosed with the same deletion, but Tami is just one of the few of her age that was tested so late in life.

One symptom that often comes with kids from this deletion, even without missing sodium channels, is seizures. And Ron and Jan believe Tami also had these, but it took them many years to realize what was happening. Growing up, at the dinner table for example, Tami would just suddenly stare off into space. “Woo hoo! Hello! Earth to Tami!” Her family thought it was just a quirk, but then later realized this likely was seizures. 

Tami in her adult years

Tami might have been little even as an adult, but she had a huge personality and always wanted to be in charge. She needed her stimulation, but she also needed her quiet.  

Tami had an incredible memory. So Jan and Ron would sometimes need to be careful of what they told her and when.

Later, when she moved to a group home, she would see cars of a staff member she didn’t like and say, “No.” Because she could tell who liked her and who didn’t. Tami definitely had staff favorites. She sometimes liked the strictest staff members because she knew they cared.

Tami even had an older boyfriend at her group home, Freddy. When Tami had made up her mind that she wasn’t doing something, Freddy could get her to do things that others couldn’t get her to do. 

And gosh did Tami love to go out to eat. She wanted to pick the restaurant because, well, Tami often wanted to be in charge. One group home staff member remarked that they often forgot Tami was nonverbal because she was just so good at communicating.

At her group home, unsurprisingly due to her love of music, Tami was a resident DJ. She had a job at a greenhouse filling pots for flowers – she was so proud.

Tami’s life was full of joys. She knew what she wanted, which meant at times she could be rather stubborn and loud. But she won over so many hearts. Tami loved the hammock. Tami loved swinging. Tami loved dancing, happily swaying her hips from side to side. Tami loved shaking hands – maybe in part because she didn’t like being squeezed tight. Tami always wanted to hold babies. Later, Tami even learned to really work an iPad. 

Tami was full of life. And her life was full when she passed away suddenly at the age of 53. 

Tami lived a life where she loved and was well loved. A life we should all aspire to have when we go.

I hope the resemblance Eloise bears to little Tami goes well beyond facial features, and reaches far into their heart and love for life and the world around them.

Hugs.