Jaylin Danae Barnett

September 17, 1999 – January 31, 2015 

 

Jaylin was such a joy, and I have always loved being her mom. She was a blessing and a gift, my baby girl. I’ve been told its a major thing for a parent to let go of what they wanted for their special needs child, but I never wanted Jaylin to be anything else. I prayed for her life many, many times. I prayed for the seizures to stop or to find the right medicine, but throughout it all she amazed me, so that I never secretly wished she could be prom queen or a cheerleader. I didn’t mourn the healthy child they say you lose after diagnosis, she was always Jaylin. My flawless, blue-eyed beauty who talked in short utterances and loved to “parrot speak” (repeating over and over) the same word.She loved so ferociously that it outshone every fear and worry. I loved her of course, but I also really, really liked her. Her personality was sweet, funny and she was always a joy to be around, even when she was a frumpy-pants in the early morning (she got that from me!) Of course the older she got, the more time I found ways to fear this world’s loss of her soul. I worried the last year of Jaylin’s life – how I would ever be done, how I could ever be at peace with telling her it was ok to let go? I just knew there was always going to be one more thing, I wanted one more song she and I could sing, one more drawing to be made. I can still hear her laugh and close my eyes tightly and actually beg for one more hug, one more day of holding her. I carry a heaviness from the pain because my wounds are still new and haven’t begun to heal.

 

Her brother, Seth, was an advanced reader, and read many books to his sister before he started kindergarten. So for awhile we ignored that she was behind because Seth was so advanced. Since Seth was above-average we pegged him as gifted and talented. That’s how blind a parent can be. Our first thought was we shouldn’t say the “R” word. Like we were talking negatively about her. For a while I banned the “R” word from being said in my presence. I knew if these seizures continued on, she would not advance any more cognitively. Not that she shouldn’t or couldn’t learn, but that there will be limits beyond our control of what we should expect. Then Jaylin went to 2nd grade at Chamberlain Elementary School in Stephenville with the most brilliant teacher the state of Texas has ever seen – Mrs Cook. I love this woman like family. I was a terrified parent and hated sending my daughter to school until this women came into our lives and helped Jaylin learn new games and songs. My first hallelujah moment after meeting her was that she could do a g-tube feed or give medicine through the port. This women was very dedicated to her classroom full of children and each special child had a spot in her heart. Mrs. Cook got the paperwork to register Jaylin for school and she read my summary of Jaylin’s medical needs. Before the first day of class that year, Mrs. Cook had taken a class to learn how to do a bolus feed, and to push meds and flush Jaylin’s g-tube. Mrs. Cook loved each new face that walked into her door.

 

Until this teacher, I did everything for Jaylin. I couldn’t imagine Jaylin ever having to do something that she couldn’t do! I didn’t want her to feel like she wasn’t able to do it, so much so, that I wasn’t giving her a chance to learn. It wasn’t until 3rd grade that I made her start walking and going to the potty on a regular schedule and tried to have more patience. I was afraid of her failing. It’s painful to watch your kid not be able to do something and be okay with the fact that they might never be able to. I had hit that rut that all special needs parents hit, the time to let go. Oh my gosh, yes, I said it- I had to let go and let her fall, when every cell in my body was screaming at me to protect my fragile little duck. But watching your child discover her own new little world is a part of my life that I still cherish – the pain, the joy, and the breathe of fresh air I got by letting go of all the control.

 

By 4th grade, Jaylin walked from the car to the classroom and around campus to the library and to music and lunch. She had responsibilities every week – door holder, or snack basket carrier, and she knew Mrs. Cook’s schedule like the back of her hand. A once wild and long, skinny, flailing-armed little girl, whom it was hard for me not to carry around. If I ever did let go of her, she leaned forward with her arms straight back and would fling her arms out behind her, away from her body like she was prepping to do a back flip. As if her arms were wings and could build up more speed by her flailing them behind her and allowing her to go even faster! She would run on rocks, or tile or cement and we would just hold our breath, hoping and praying she didn’t fall. Sometimes like a puppy that’s been chained up – the first time it gets free it runs so far and so fast and never looks back! That was my daughter. She could barely walk, but she was determined to keep that skill. Walking is freedom. Her last years confined to her chair or her bed proved how much she loved to run and escape.

 

Even with her hardships though, Jaylin cheered everyone else up. It was impossible to be angry, or sad in her presence. Even when I was mad or frustrated with the boys or with her and I yelled out in frustration, she lifted my spirits by laughing more the louder I got, until I no longer felt aggravated or mad. I could let it go and laugh with her! There was no point in scolding her – Jaylin was developmentally a 3-5 year old kid. But she had the humor of an intoxicated teenager – silliness was hysterical. Me saying NO was down right ridiculous! Some things she scored higher on, and some things just didn’t come that easy, an she had to try really hard on those more difficult things. Jaylin’s seizures took their toll on her. The delays started when she was about three. Motor skills and physical therapy were a new challenge every day. She started over with a clean slate each day, she held on to the words from songs or her favorite cartoon show for any given day. She could memorize the sounds and words really quickly. She also had a Jaylin’s “word-of-the-day”. We posted pictures and videos of her on Youtube laughing and saying her choice of word for the day, and then she giggled and squirmed until we repeated the same word back to her with the inflection of a question mark at the end. She found this wonderfully funny and would fling her head backwards and her shoulders would shake with laughter and she would make the sweetest sounds while trying to keep breathing in between fits of giggles.

 

She had her father’s and brothers’ sense of humor. Farts were hilarious and jokes with a bad word in them were never wasted on Jaylin – she loved them. The word of the day was almost always “broccoli,” “cheeseburger,” “hot sauce ” or “excuse me” after sneezing or tooting. Jaylin would repeat the same question 400 times and continued to look at me with a smile after I screamed out or jumped up and down with aggravation. As if her facial expression could speak, it would say “I’m still right here and you’ve thrown your fit, so I’ll ask you again, because I’ve got all day!” And she could outlast you in any debate on eating a third serving of mac and cheese in a row. She sometimes would ask for food, then refuse to eat it, until you left her alone for a minute and let it be her idea to start eating it. Then she would look at you with this smile, a sweet “it had to be my way” grin. A determined mother and a very well-determined and seasoned marine, were nothing compared to her ability to stay unwavering in her plan to getting whatever it was she wanted. She was a determined little turd, and I learned a lot from that! The last few years, Jaylin’s team of people changed, we had many nurses, and a second teacher who also became part of the family, Mrs. Chandler. She taught Jaylin at home for several years after it just wasn’t healthy for Jaylin to attend school anymore.

 

On Jaylin’s wall hangs a picture that says “Her days are always happy and bright.” The only time she didn’t smile was when she slept! 15 years of being positive, when nothing in her life ever played fair! She had seizures daily and status episodes twice a week. She stayed in bed a lot in the past year and had arthritis, scoliosis and osteoporosis, she was on pain medications for neuropathic nerve pain for about a year. She had not been sick with a fever in 10-12 months, then the day after Christmas she woke up with a fever (she was diagnosed with double pneumonia) and flown to Cooks Children’s Hospital ICU. She spent 15 days on a ventilator and that was a record, even for Jaylin. She did get to feeling better and then took a turn for the worse. We discussed options and I had a DNR in place for her for awhile, but this was weird as she was awake and talking to me so I never expected her to not get better, until the second day we were home. I set up hospice and knew they would come talk to me. But I was talking to Jaylin and I was numb to the reality of the situation. When the hospice nurse explained she was declining, Dan and I had bickered back and forth that morning and I don’t remember even about what. I just remember him wrapping those huge arms around me and finally having the cry we had held back for many years. My sister-in- law came to stay with me and Jaylin and help out because she is a nurse and she’s also a good aunt and loves my children as if they were her own. My sisters came and my parents, my brother and cousins, and all Dan’s brothers and his father, and several friends. We stayed together all week and comforted each other. The amazing job my family and friends did by surrounding us with so much love and hope meant the world to Dan and I, and was a true testament to how many people loved and adored Jaylin and us!

 

I got the one thing I always wanted – a beautiful little family! Dan and I were true love. We got to have twins. Twice! To look in at our lives, it would make some people wanna throw up. I wanted that so bad that everything that has happened in between has been a stepping up place. First we lost Jordan, then Jaylin was sick, and we lost her. All those moments in time that had to happen are a piece of our puzzle and are needed portions of my beloved family. Each new and wonderful thing and every sad, heartbreaking moment has to go together. It’s all going to be okay. Soon hopefully I will use everything I’ve learned and be able to help more kids like Jaylin, as well as families like ours. Tonight as I write this, I feel that were all okay and I have faith that it will continue, thanks to my very powerful army of faithful women that were waiting on my beautiful child’s soul as it reached heaven. That same army is carrying this broken-hearted mother through the tough times, and my daughter smiles down on me every time I close my eyes and renews my strength.