Speaking out for People with
 Intellectual and Developmental Disabilities

Melinda Kirksey's Eulogy

MELINDA MARIE KIRKSEY

“An Angel on Earth”

Every life has a story. This is Melinda’s, just ask Me.

Download the PDF here

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Melinda was born on the same day as our Blessed Mother, September 8, 1969, in New Orleans, Louisiana as the first child to two very novice parents. Johnny was 20 and Marsha was barely 21. (She obviously liked younger men. That was for you, Daddy. You can pay me later.)

Johnny had no experience with babies and Marsha had never even babysat for heaven’s sake! This 8 pound 9.5 ounces (head full of jet black hair) baby girl arrived earlier than expected, allowing Marsha (his “little sister”) to beat Lenny and his wife Suzie to having the first Nielsen grandchild. Yeah, Melinda! But, don’t worry, cousin Mark was exactly one week behind by birth. And, that, my friends & family, was the last thing he would ever come behind Melinda in.

Although Melinda was a beautiful healthy baby, she never quite hit the milestones of infancy like Mark did. She rolled over later, she sat up later, she walked later, AND – she wasn’t speaking. Not even baby babble. Verlin (a/k/a Grandma to us, Aunt Verlin or Aunt Pearl to the cousins, and Great-Granny Pearl to my children) knew something wasn’t right. After numerous suggestions, and then constant urging, Marsha relented to her Momma and took Melinda to the doctor. For months, they consulted with different doctors and specialists and Melinda had test after test after test. The results were always the same: “Something is wrong, but we can’t tell what it is?” Of course, Marsha and Johnny were terrified. And, by this time, Melinda is almost 3 years old and Marsha is pregnant for their second child (guess who?!). A local pediatrician gives Melinda an EEG (electroencephalogram) which is a test that detects electrical activity in your brain using small, flat metal discs (called electrodes) attached to your scalp. Thank you Google! (As many times as I’ve heard my Momma tell this story, I never knew what an EEG was.)

Anyway, while we won’t mention the name of said Pediatrician, he decided it would be a good idea to call a very pregnant Marsha on the phone and disclose the results: “Marsha, the test came back negative. Melinda is profoundly retarded and will never progress mentally past the age of 18-months.”

Obviously devastated, the frightened young couple embarks on a journey that takes them to THIS day. Saturday, January 14, 2017.

For roughly 44 of Melinda’s 47 years of life, my parents have fought tirelessly, passionately, tooth and nail, to make sure Melinda was taken care of, protected, loved, and most importantly – NOT FORGOTTEN. She was their “Angel on Earth”. Just ask Great-Granny Pearl because she coined that phrase and used it frequently.

Come seizures, come sleepless nights, come frustration, come disappointment, come anger, come embarrassment, come fear for the health of the next child born to them, come Melinda’s Houdini escapes out of windows and being missing in action for 24 hours, come Melinda getting stuck in windows constructed to keep her safe, come multiple hurricanes which cause displacement, come budget cuts to the mentally handicapped, come eradication of state facilities, come CANCER!!!

The ferocious fight to provide Melinda with the basic needs they could no longer provide at home because of her severe mental retardation and behavioral issues came when she was around 7.

I’ll never forget the day my Big Sister left. So what she couldn’t speak?! So what we had a new baby brother?! He can’t speak either! But, I can! I can talk for all of us! [If you’ve had the pleasure of meeting my favorite brother, Lawrence, you know he doesn’t say much and that’s my fault. I never let him talk. Just ask Momma & Daddy.]

The harsh reality was Melinda became too much for Momma to handle on her own with two other children. So, off Melinda went to Columbia State School in Monroe, Louisiana. Lawrence and I would get dropped off in Baton Rouge on their way to Monroe to stay with our cousins Ginger, Debbie, and my Parran Stevie, and we’d have a blast (Just ask them about noxema facials, making popcorn with Uncle Bobby, baking cookies while sitting on Aunt Jackie’s counter, playing cheerleader with their “real” pompoms, and swimming at Park Forest Country Club where they were all 3 hifalutin life guards, and my Parran was “in charge”) all this while Momma & Daddy dropped their first born “special” child off w/strangers in the hopes they could teach her basic life skills: put your shirt on Melinda, put your shoes on Melinda (thank God for Velcro!), pull up your pants Melinda, let’s go to the bathroom Melinda, it’s time for bed Melinda. [I don’t know if you’ve ever had to drop your new baby off at day care for the first time to go back to work and notice that awful feeling of guilt and abandonment you experience – its paralyzing. But, Momma has lived with that for the better part of Melinda’s entire life – that’s her baby.]

Sadly, her baby, Melinda, never learned to speak or do sign language. She had a perfectly normal healthy physical body that was aging properly but the brain of an 18-month old. So, she had an extremely short attention span, was woefully inquisitive, possessed no impulse control, and she had absolutely no ability to communicate. (Can you imagine not being able to say: I’m hungry, I’m tired, I don’t feel good, my stomach hurts, I’m scared.)

On the plus side, Melinda’s physical strength was unbelievable. (Just ask Mark who attempted to help Daddy get control of Melinda when they were about 16 – he hasn’t recovered yet from how strong and determined she was.) Don’t expect Melinda to just sit quietly and watch TV or do a puzzle or listen to music, or even sit down at the table with others and eat the food that is in front of her. (Just ask Stacy – Melinda loved to steal food from my childhood best friend or anyone else who happened to be eating within her arm’s reach.) Especially, if it was Popeyes! That’s Melinda’s favorite and you didn’t stand a chance if you were nearby and trying to enjoy your chicken and biscuit in peace. She’s a ninja when it comes to getting what she wants to eat. Just ask Shaun and Debbie, who took care of Melinda since she moved into her group home in Baton Rouge in 2015, and Chrisite, the hospice nurse who was assigned to Melinda when she received her diagnosis on September 5, 2016 of stage 4 lung cancer that had metastasized to her left hip and brain, about how sneaky and stealthily Melinda was when it came to food…

After all, just ask Momma, Melinda may have been retarded but she was NOT stupid! In fact, Shaun told us: if you had a bottle of tea open that you were drinking, don’t be surprised if when you come back to it it’s not the same. Melinda likes to sneak in, open it up, drink it till it’s almost gone, and then put the cap back on and leisurely walk back out like nothing happened. Yep, Melinda got me!

Debbie said, if they weren’t fast enough, Melinda would high-tail it to the frige and pull out the milk gallon and drink straight from it. Yep, many a times they’ve had to take a sharpie and write “Melinda” on it. Guess she wanted the whole gallon to herself.

Christie said, one time while she was doing her hospice paperwork, Melinda got away from her and made a beeline for the frige where she proceeded to consume a slice of cheese with the plastic wrapper still on it!!

But, food isn’t the only topic of concentration for Melinda. She loved men. No idea why? No real rhyme or reason. But, from the first time she met my husband (then boyfriend) Chip, I knew something was up. He was on the couch and Momma and Daddy walked in from picking up Melinda and she didn’t even pause. She went straight to the couch, sat right next to Chip, and grabbed his hand laughing “heehee” to me the whole time. She was letting me know that he was her boyfriend. Sibling rivalry never really ends, does it?

That’s when I noticed that Melinda ALWAYS chose Chip’s hand to take a walk. She ALWAYS insisted on sitting practically on top of him on the sofa. No doubt, it was a thing. Just ask Todd, the hospice chaplain. Melinda grabbed his hand and didn’t let go from the first time she met him. She gravitated toward men and was happiest when Daddy would walk with her and sing his silly handshake song: “How do you do, my name is Sue!” Melinda would laugh and smile. Then, I would sing: “If you’re happy and you know it, clap your hands!” She would smile but nothing like when Daddy would do it.

            Growing up with a profoundly mentally retarded sister for Lawrence and I was never a negative. Our parents wouldn’t let it be. Johnny and Marsha were relentless in their quest to take care of Melinda and make sure Lawrence and I knew how lucky we were to be born “whole” and that we never take our health for granted. Our free time/”service hours” for Catholic School consisted of spending a lot of time at Melinda’s school where she lived. Our parents were front and center members (and often times officers) of the Parents and Friends Club of Belle Chasse State School (which later became Metropolitan Developmental Center) for at least 29 years (forgive me if my math is off, but I’m a blond and not very good at math) and because of that we met incredible people we still call really good friends (or Aunt and Uncle) today. We learned to water ski from trips to the camp on the Amite River with “Uncle Danny and Aunt Shirley Parker” whose son Danny, Jr. was a resident at Melinda’s school. Momma’s best friend, Ms. Mary Perkins, whose daughter, Jill, was a resident of Melinda’s school, was the epitome of the Christmas spirit making sure every “child” at the school had an appropriate Christmas gift and a birthday gift, as well. Ralph & Lisa Morvant’s son, Kevin, is one of my oldest friends to this day – we met at Melinda’s school when we were about 12 because his brother Jonathan was living there (he sent me his love and condolences via text from Iraq a few days ago and it took my breath away. He reminded me that: but for our siblings being “special” we would never have met.)

Visiting Melinda and taking walks around the campus where she lived was always a crap shoot. Several of us would gather (safety in numbers, right?) and we’d head over there. Me, Chip, Lawrence, Brandy (my college BFF who always thought: what’s the big deal? She’s special, so what?), my parents, and anyone else who Daddy would grab from the neighborhood because they were close. We’d go and get Melinda out of her unit and take her for a walk. Well, one day we went and we were all talking and cutting up and, apparently, Melinda wasn’t getting enough attention. So, we’re walking along and laughing and carrying on and she stops and proceeds to kick off her shoes and pull down her pants and underwear. All the boys freak out, of course! Lawrence and Chip run away covering their eyes and everyone, including Melinda, is cracking up laughing. She totally got us! Just ask Chip because he was holding her hand when it happened.

Fast forward to Katrina in 2005 and Melinda’s evacuation to Hammond. This isn’t going to end well. Momma and Daddy were so worried. Melinda doesn’t do well with change. She’s been in Belle Chasse for so long. How is she going to cope? Is she going to be okay? Will she be safe? Will she be scared? Does she wonder where we are? Just another of the countless questions they’ve asked themselves along the way since they embarked on this journey.

Melinda and her counterparts were placed at North Lake Support and Services in Hammond to weather the storm, and she remained there until it closed in 2015 and she was forced into a group home.

Luckily, (but at first against every fiber of my family’s being) Melinda went into a group home in Baton Rouge not far from where I live with my family. And, you know what? She thrived! She was the mischievous one that kept them on their toes and never let them have a dull day. In fact, from the first day Shaun, (the staff supervisor) who had been at the group home for 2 years already, instantly connected with Melinda (“like no other resident before” according to her) and she referred to Melinda as “my baby” saying: “we had an instant connection”.

You see, it didn’t matter that Melinda was “non-verbal”. She gave love and received love without the need for words. She lived every day of her life in the “precious present”. If only we could all be so innocent and free. Because of Melinda, Great-Granny Pearl learned that there really are angels on earth. Because of Melinda, Momma & Daddy learned to be fighters! Because of Melinda, Lawrence and I got to know and connect with our cousins who lived out of town from us. Because of Melinda, Mark learned how physically strong mentally handicapped people can be. Because of Melinda, Stacy learned not to eat anywhere near her. Because of Melinda, Shaun and Debbie and many other staff members at her house learned that being retarded doesn’t mean you don’t have your own personality. Because of Melinda, Chip learned that maybe Barbara isn’t the most stubborn one in the family.

Since Melinda’s diagnosis, my parents came weekly to visit Melinda. Always bringing the requisite Popeyes! My children would tag along on their visits sometimes, and they would go to the park or have Melinda ride her bike. Melinda, being a natural born fighter, never really showed signs of weakness or pain. That is, until four days before she died. Melinda was having difficulty breathing. When I got to her house, her blood oxygen level wouldn’t even register.

My Parents and I spent the next four days watching our precious Melinda (this “Angel on Earth”) slowly die. Ginger and Debbie came to visit. The hospice social worker and chaplain came to visit. The other staff members came to check in on Melinda. Lawrence drove in after work Tuesday and Wednesday. And, Melinda fought and she fought and she fought. She fought the cancer in her chest, in her bones, and in her brain. She even fought the medicine. We tried to convince her to “let go”. We spoke soothingly and sweetly to comfort her and insist she go be with Great-Granny Pearl in heaven. But, how do you tell someone with a child’s mind something so metaphorical? Instead, we tried “Melinda it’s okay to stop breathing.” BUT, she would have nothing of it! She was going to die when SHE was ready to die.

We thought maybe she made a deal with Shaun and was waiting for the weekend so Shaun wouldn’t be there. Then, Friday afternoon my Momma (who had not left Melinda’s side and had been sleeping in a recliner next to her bed the past three nights) said “Melinda’s waiting for her brother to be here”. Of course, I couldn’t have that. So, I said “Oh, no she isn’t”. “She ain’t waiting on him!” (there’s that sibling rivalry thing again). Well, famous last words….

Melinda WAS waiting for Lawrence. He arrived at her house, was greeted by Chip and my children, and we were all gathered (Momma, Daddy, me, Krieger, Shaun, “nurse” Debbie, and some others) in Melinda’s room because her breathing had become so erratic. We knew any minute and she would be gone. When Lawrence walked into her room, Melinda heard his voice, she gasped loudly and opened her eyes and that was her last breath as our “Angel on Earth”. She made a liar out of me, literally, with her last dying breath. You win Melinda!! You got me Melinda!!

The next time Melinda took a breath, she was in heaven, wearing angel wings, she had a voice, and was singing at the top of her lungs. Just ask me.