Valerie.

Life with a special needs daughter

Val and George, discussing important stuff. Taken November 2014 at Yorktown, Virginia

I’ve been wanting to write about Val for awhile, but she requires some brain power and more effort than I usually expend for most of my posts. Maybe because I’m more invested in her than anyone else in my life?

Valerie Nicole was born on an evening in early March of 1997. I had a difficult pregnancy with her, which might have been God’s way of giving me a heads up that more trouble would follow. (I was oblivious then.) She was a few weeks early, only because I was sick of contractions, being dilated to 7 and wondering when the shoe would drop. My obstetrician took care of that for me.

It should have been a very joyful day for me and Kevin. Her delivery took 3 pushes and was the easiest thing about her life then… and now. When she made her appearance, she didn’t cry. Her face looked like it was crying, but nothing came out. I happened to notice my doctor’s face, and her furrowed brow didn’t reassure me. There were no smiles among the nurses either.

Val loved bath time for years

I won’t bore you with all the dreary details, but we brought her home and if I had any plan for an adjustment that wasn’t painful, I was in for a huge shock. She cried. All.The.Time. It wasn’t just a plain old cry, though. It was one that screamed to everyone that she was in immense pain. We had her readmitted in the hospital 2 days later, and for some bizarre reason, they put her on an adult ward in the hospital and ran a million tests. All those tests came back “normal”. Even worse, the nursing staff was horrible, didn’t seem to care and didn’t listen to me or Kevin. After enough of their crap, I decided Kevin and I could do a better job and decided to kidnap her out of there. I hailed a cab with Val and surprised my husband at 5 am. He was sleepy, confused and sat there in complete silence as I told him my reasoning for the break out. He busted out laughing only because he was picturing me as a kidnapper. And then he got very, very angry. I laid in our bed sobbing with this screaming baby, and he got a shower and dressed. When he finally appeared in our room, he calmly told me he was going to take matters into his own hands.

For that morning, he was my hero. I simply couldn’t manage anything but a kidnapping. He headed to the hospital, met with that damn male nurse and the head of nursing and told them what he felt. He left there with a smug smile and headed home briefly before dropping Victoria off at daycare and going to work. After he got home, he called my mother. I heard him say, “Bobbie, can you please come early? Name your price. I’ll stop at the liquor store and buy a gallon of gin, just get here as soon as you can.” My father made that happen the next day. Dad joined her the following week, not really believing us that things were as awful as they were. It didn’t take long for him to face reality. It was then that he and Val began their bond that continues today. My parents headed home on my 35th birthday. With them as my witness, I laid on the driveway in front of their rental car and told them they couldn’t leave me. They left anyway (without running over me).

It didn’t get easier for a really long time. Like years. Her pediatrician threw everything but the kitchen sink to see what was wrong. She was jaundiced. She didn’t eat much, because she had acid reflux and it prevented her from even wanting to eat. On top of that, she had cyclic vomiting episodes, which resulted in her being hospitalized numerous times. She had one of those episodes that October. We had a mammoth snow storm. Kevin’s truck was 2 wheel drive, and he had to borrow a neighbor’s 4WD vehicle to take me and Val to the hospital. Then we were stranded there. Such fun.

During that stay, a very handsome and egotistical hospitalist made the rounds. I sized him up silently, immediately figuring out his achilles heel. He checked himself out in the mirror as he entered our room. Yeah, I nailed him. He started to give me some standard line of bull in a condescending fashion, and basically told me I was a crazy person. So I smiled my biggest dimpled smile and invited him to sit on my bed. I scooted close enough to him to make him really uncomfortable. He bolted off the bed and exclaimed with exasperation and maybe a little fear, “What do you want me to do???” I jumped off the bed and got in his face and yelled, “If she were YOUR daughter, what would you do for her? That’s what I want!”Within minutes, he wrote me a referral to a pediatric gastroenterologist and he literally ran out of the room, never to return. Ha ha! I sat on the bed with a satisfied grin. Twenty-two years later, I’m still proud of using mental combat to get her what she needed. It was one of my finest moments.

Val had a nissin fundoplication that December. My 9-month old baby had horrible ulcers and a very inflamed esophagus. That pediatric GI was her wonderful doctor until she aged out last year. On our last office visit, he wrapped his arms around me and told me, “I’ve loved every moment of being her doctor. She’s a love and you are one special person. I looked in his eyes and Dr. Ted was crying. I couldn’t help but join him. He was a really big part of her childhood. To this day, her seizure meds cause acid reflux and constipation, and her now adult GI is still a part of our lives. For the record, the hospitalist I mentioned above was friends with Dr. Ted. He happened to give Dr. Ted a heads up that a crazy person was going to make an appointment with him. 21 years later, Dr. Ted and I still laughed about that. And he agreed with me that he is one of the most egotistical people he’s ever met. 🙂

At this point in our lives with Val, I *knew* something was really wrong with her. Our pediatrician told me that he had practiced long enough to know that mothers know, even if the medical community didn’t. Although I had people tell me that I needed to relax and let her grow on her own, Dr. R. was concerned enough to tell me not to let them get to me.

Victoria and I were in Australia for my grandmother’s 85th birthday in 1998 when the phone rang in her house. It was Kevin. He had taken Val to her annual check up, and I knew instantly that this conversation was not going to be a happy one. He was choked up and had difficulty getting the words out. Val failed every single pediatric milestone, weighed a whopping 12 lbs, and was diagnosed as failure to thrive (and that diagnosis is basically a judgment handed down to poor parenting). He told me we needed to take her to a developmental specialist and a geneticist when I got home. His last statement was sobering, and he struggled to tell me that her survival was not guaranteed. I hung up the phone and burst into tears. My grandmother sat on the couch next to me and hugged me while I sobbed.

We saw many specialists over the years. Because she wouldn’t eat, she spent 3 years in feeding therapy. At 18 months, she had physical, occupational, speech and feeding therapy every week. I was fortunate to have Dennis–my boss and friend–support us through this journey. I know it was tough on him, but it was very stressful for Victoria, Kevin and me and our families and friends. You couldn’t pay me enough money to go back.

In the meantime, Val’s pediatrician came down with leukemia and had to lighten his load. His practice brought in a young doctor to take his toughest cases. It was much later that I found out he was brought in to specifically deal with Val. Dr. G. was our lifeline. I had his personal cell phone number and personal e-mail address. He remained her doctor until earlier this year. That transition, too, was a little emotional for both of us. Anyway, back in 1999, he would spend his evenings poring through obscure medical journals to see if he could find anything to explain her problems. At this point, she was still not achieving typical milestones, not walking and not babbling.

In the summer of 1999, he called me at the end of his work day and told me he thought he might have found something. He gave it a name: Angelman Syndrome. He had the University of Colorado geneticist do the DNA test, which came back as inconclusive. Still, Dr. G. didn’t give up. He told me that he felt it looked like a duck and quacked like a duck, and that he wasn’t convinced by the lack of clear results. He told me he was going to find the best place to get tested.

We were referred to Baylor University and the ball was in motion. When the folks at Baylor requested my family’s DNA, we were pretty sure there was something there. My parents and sister obliged. This process took almost 6 months. Then one wintry February day in 2000, I got confirmation that Val had AS. Although I had reconciled this in my head, nothing prepared me for the grief that followed. At that very moment, it was an overwhelming death sentence. I dropped to the floor in my shower and sobbed for what seemed hours.

A psychologist would tell me shortly afterward that it was the death of a dream. Death to my hopes that all would be normal and she would catch up. Fear that I wasn’t up to the job. Fear how we would manage. Fear that I would have an adult disabled person in my house for the rest of my life. I was devastated. If you’re wondering about Kevin, he deals with grief by turning inward. Through the looking glass of time, I wish we had entered therapy to deal with those fears.

Kevin was taking photos of the beautiful fall foliage in his backyard. He was sidelined by a very grumpy person. Just in case you’re wondering if she always smiles. She doesn’t.

Once I picked myself up by my bootstraps, I started making some big changes. I made myself a promise to allow 24 hours to wallow in self pity and then it was time to resume my role as mother and cheerleader. I had to get my family into a system somehow. It’s a promise I keep to myself today. It works.

Since then, we were given the crash course in genetics. My father, sister and I share a deletion on the 15th chromosome. Dad and Barb’s deletion is identical, where mine mutated. The markers turned on with Val, and because of that, she is affected. She is nonverbal, has epilepsy, and a lovely sleep disorder. She’s got a huge smile and a wonderful sense of humor. She’s silly and a prankster. She loves animals and road trips. Every day is groundhog day with Val, and it’s a reminder to me to leave grudges behind. She’s forced me to be a much more patient person. A more accepting person. A more compassionate person. I consider her the best gift God ever gave me. She gave me purpose and resolve. It’s a privilege to be her mom.

Now that I work on the family genealogy, I’m diligent about researching any clues that might lead me to understand which side of the family it came from. The Dunns? Wilsons? Whitakers? Dimmitts? Jacksons? Stokes’? Harveys? I honestly don’t know. If the mystery is to be solved at all, it will be the DNA that reveals the source.

We had fantastic neighbors in our neighborhood in Highlands Ranch. They were so supportive. One of them was in early childhood education in our home school district. She knocked on my door one evening before Kevin got home and gave me some advice which we took. She told me to move to another school district. One of our wonderful neighbors had a teenage daughter with Down Syndrome. After she told me her daughter had to go to 6 different schools because of boundary changes, I knew the advice was good. Kevin and I put our house up for sale, sold it within an hour and moved to an established neighborhood part of a stable school district. It was a decision neither of us regret. We hated leaving those wonderful neighbors, but we had to do what was best for our family. Val started preschool that summer.

Kevin and I separated in 2003 and divorced in 2005. We tell people that we got divorced because we were sleep deprived. The funny thing is that we’re not kidding. We went into survival mode and remained there for a very long time. I thought the day we got Val’s diagnosis was the worst day in my life. I was wrong. That day was the day he moved out. I spent most of that year dealing with emotional paralysis. Fortunately, the help of an on-line support group, therapy and a decision to grow up got me through those hard days. Kevin himself was attempting to survive a depression that lasted quite awhile as well. I consider those the dark days.

I can say that we’ve come a long way since then. When he left home, my mom had accurately observed that she remembered a time when we were the best of friends and that our friendship had completely disappeared. I realized she was on to something. Rather than get him back as my husband, I decided to shoot for a goal of getting my friend back. It turned out to be a good goal for a million different reasons. Aside from the obvious (that’s it’s far better to have a friend than an enemy), I really wanted his help co-parenting our daughters. They were just 8 and 5 when he left. I had a lot of parenting time left, I didn’t want to do it alone, and I didn’t want them to grow up without their dad playing a major role in their lives.

During those years, Val still had cyclic vomiting episodes which required a minimum 3 day hospitalization. Nobody seemed to understand the origin, and it was like the chicken and the egg. Either nausea caused them or something else caused the nausea and vomiting. When she was about 10, she was in Children’s Hospital and the chief of neurology was making rounds while she was in distress. He walked in the room and said to the nurses and attending physician,”She’s having a cluster seizure. Why aren’t you giving her rectal valium?” Everyone was stunned, but they followed his instruction. The valium stopped her vomiting within 60 seconds. I think everyone learned a lot from that man that day, and we finally got relief from those episodes.

Another side note on the sleep deprivation being part of our miserable story is a flip side that is much happier. The sport of volleyball was the vehicle to getting our friendship back on track. At the age of 11, Victoria had decided volleyball was going to be her thing. Neither of us wanted her to play club volleyball (it’s time consuming and expensive), but she pulled the ultimate card one afternoon: “When is this going to be about me and not you guys?” Not surprisingly, she headed for the court–all in–the next day. I knew it was serious when she joined without knowing anyone.

How did volleyball do this? Well, for one, it’s very hard to dislike someone who wants the same person to succeed as much as you do. It’s impossible, actually. In the early days, we’d alternate going so one of us was home with Val. By the end of the season, Val became a permanent cheerleader on her sidelines. We were Vic’s biggest fans, and we were gypsies who headed across the country to watch her play. Along the way, we dragged friends and family into our caravan. Seven years later, we were blessed with four more years to enjoy through college. Val loved being with Vic and her teammates. Volleyball was the thing that brought my family back together.

Val went on to have a wonderful experience in school. She was fortunate to have teachers, aides and other parents who were on her side. On our side. She joined the Sparkles her freshman year in high school. The Sparkles were the unified cheer squad at school. The girls were so good with her. But they disbanded after the teacher retired, plus it interfered with volleyball in New York. So she joined the Unified Basketball team for the rest of her high school years. While we loved every minute watching Vic play, Val was a complete 180. We were constantly telling her to run! Instead, she would grab her typical peer’s hand and wave to the crowd. Kevin and I did enjoy watching the kids play, though. I miss it all.

Val at her 21st birthday party, March 2018. Photo courtesy of Tina Brewer.
Val in her cap and gown after graduation, May 2018. It was a pretty special conclusion to her 18 years in Cherry Creek School District.

It’s now almost 2020 and Val will be 23 on her next birthday. She is happy in her day program. Kevin and I are in a good routine with her, and she’s a happy person. I no longer fear being her caregiver for life, as it’s been a job I’ve held since 1997 and we’re a packaged deal. I can’t imagine NOT having this job. She likes hanging out with me and Kevin, and frankly, she prefers our company. She and Kevin go on motorcycle rides and to see bands play and people dance. She’s a very social person. She and I travel, shop and go to movies. I drag her on my genealogical pursuits and she’s a good sport. I truly can’t imagine my life being different than it is.

And that, friends, is God’s grace and blessing bestowed on me.

Author: Betsey K.

Mother of two daughters, two Siamese cats and a 3 legged dog. Genealogy hack. Research nut. Search engine proficient. Daughter, sister, aunt, cousin, niece and ex-wife. And a person who strives for balance and peace.

14 thoughts on “Valerie.”

  1. Betsey, what a tremendous story of hope, faith, fear, pain, loss, loneliness, strength, and tenacity. Such courage. God has blessed you, Kevin, Vic, Val, your mom and dad, your doctors, your therapists, and all of your supportive friends with love above measure. Much love,

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  2. Wow. Just wow. I had absolutely no idea about your journey and very much respect and admire your strength and perseverance. You are the picture of parental love and advocacy, and I believe you and Val are blessed to have each other. ❤️🙏🤗

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    1. I had started a post about seeing friends at Thanksgiving—and thank you for being one I was able to spend time with. I couple have lunch with you every week from here in out; it’s too bad Virginia and Colorado aren’t adjacent. I will definitely put Charlottesville on my to visit list. Promise. 💕

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  3. Oh Betsey, this was just beautiful. I so love the pictures- particularly the one at the Elton John concert.
    I am honored to be your friend. You’re a very special person.

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  4. I really don’t know what to say at this point except that this is an exceptional post / story on so many levels. Not being a parent myself I cannot begin to imagine what you and Kevin, and indeed Vic, have gone through over the years but it is certainly an inspiring tale. I am so glad everything seems to have worked out so well. It must have been very difficult to write this.

    As well as being very inspiring it is a hugely informative piece as I had never even heard of Angelman’s syndrome but I certainly know all about it now thanks to you (I checked the links). What amazes me is that the original research lay gathering dust for so long, that really surprised me.

    Above all, this is a story of hope and love and it does not come much better than that. Thank you so much for sharing it.

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    1. I’m glad you found this informative… Angelman is named for the British doctor who discovered it (Harry Angelman). Since 1997 there have been so many advanced in diagnosing it, which leads to earlier, specific resources. They are currently in drug trials to allow the paternal genes on the 15th chromosome to turn on. I’m not sure what we’ll do if it becomes readily available. But at least the folks coming up have hope for as cure.

      I’m going to write a follow up to let folks in on some of our horror stories. They keep me humble!

      Thanks for reading and commenting too😄

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