BECAUSE OF JAYLIN WE EACH LOVE DEEPER
WE EACH LIVED WITH GODS PUREST OF SOULS, AN ANGELIC HUMAN BEING THAT TAUGHT US ALL WHAT WE MEAN TO EACH OTHER, BECAUSE OF HER WE ARE BETTER. I AM SO PROUD OF MY FAMILY AND MY LIFE, THE HARD TIMES ARE ONLY BEARABLE BECAUSE OF OUR TREMENDOUS AMOUNTS OF PURE LOVE
She was such a joy, and I have allways loved being her mom. She was allways a blessing and a gift,my baby girl. Ive been told it's a major thing for a parent to let go of what they wanted for there special needs child, 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 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 loose, She was allways 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 out shown every fear and worry. I loved her of course, but I also really really liked her, her personality was sweet, funny and she was allways 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 worlds loss of her soul, I worried the last year of Jaylins 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 allways going to be one more thing, I wanted to say 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. Which I still carry a heaviness from a lot of pain because my wounds are still new and havent begun to heal! Seth was an advanced reader, and read many books to his sister,before he started kindergarten. So for a while we let it go that she was behind because Seth was advance and 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 it. 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, until Jaylin went to 2nd grade at chamberlain elementary school in Stephenville with the most brilliant teachers the state of Texas has ever seen,Mrs Cook. I love this women 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 things! 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 an she read my summary of Jaylins medical needs and that she had a GTube,and 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 her GTube. Mrs Cook loved each new face that walked into her door. Untill this teacher, I did everything for Jaylin, I couldn't imagine her 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 was 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 ok with the fact that they might never be able to. I had hit that rut, all special needs parents hit it, 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 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 cooks 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, and 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. Like 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 breathes hoping and praying she didn't fall. Sometimes like a chicken with it's head cut off, or a free puppy that's been chained up and the first time it gets free,it runs so far and so fast it would never look 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, she cheered everyone else up, it was impossible to be angry, or sad in her presence. Even when I was mad or frustrated with all the boys or her and I yelled out in frustration she lifted my spirits by laughing the louder I got! Untill I no longer felt aggrivated 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 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!Jaylins seizures took there 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 Jaylins word of the day, we posted pics or videos of her on utube laughing and saying her chose of word for the day,and then she giggling and squirmed untill 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 fathers and brothers sense of humor, that 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 continuing to look at me with a smile after I screamed out or jumped up and down with aggravation like ok! 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 Mac and cheese in a row. She sometimes would ask for food, then refuse to eat it, untill 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 Unwavered in her plan to getting what ever it was yeah she wanted! She was a determined little terd, 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.
My grandmother Nanna Preas lost six of her children to an array of different accidents and sickness took her husband, the love of her life while she continued on living, and she still prayed to God! She was a member of the church, she believed in rules and having a strong faith and keeping your house always clean enough in case company came out of the blue, but if they did come, make a cold drink and sit and visit. She said if you have love in your heart and faith in God than you can do anything you want to do and be anything you want to be. People like my Nanna can make it work! She was an amazing women and I learned from watching her, how I wanted to bring up my own children, and she's who made me realize I desperately wanted a family, I wanted to marry Dan and have lots of his babies, that was my master plan, and my biggest ambition in life. Make a new generation of Barnett Brothers, and teach them the same way Nana taught me, an my little brother, treat people the way you want to be treated. Give more than you get and it will come back to you ten fold, and learn to be more happy to give than you are to receive! Have a strong faith in our God and in your marriage. The reason I think of Nanna and Jaylin together, is that they both knew something the rest of us didn't . They knew God in a way, that any thing else was inconceivable! They followed the good path no matter how many bruises they had or times they fell, they both kept trying.No matter who died or who got sick, no matter her good days and bad, she didn't ask God to forgive her for asking questions or for not believing because the women knew God like as sure as he was standing in front of her, and trying to explain or ask questions about doubt to her was like madness! As if we were promising that the sky was red instead of blue as she looked with her own Eyes and knew the color, She sees The Lord with her own eyes and knows and believes whole heartedly he's as real as the day is long. No doubt, she looked down and said I know my right hand is on my right arm, correct and I followed her and said yes Nanna as certain as she had believed that Her savior, was real, and that she was going to have everlasting life in Eternity, I marveled when I looked at her, because she was my frail Nanna Preas with a head full of gray hair shaped into a big football helmet, and still I respected her so much,I saw a women who lived through the stuff that she did and she yet she still not only believed,she knew, the strongest way to stand was with a smile and faith!
On Jaylin's wall hangs a picture that says "her days are allways happy and bright,"the only time she didn't smile is when she slept! 15 years of 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 her neuropathic nerve pain for about a full year, she had not been sick with a fever in 10-12 months and the day after Christmas she woke up with a fever an was diagnosed with double pneumonia and flown to Cooks, ICU, she spent 15 days one a ventilator, & that was a record for even Jaylin
She did get to feeling better and them took a turn for the worse and we discussed options, I had a DNR in place for her for a while, but this was weird she was awake and talking to me so I never expected her to not get better, untill 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! My father in law and sister in law walked into the house about the time, the hospice nurse explained she was deteriorating and that we needed to prepare ourselves. 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 us! 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 and all dans brothers and his father, and several friends,we all 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 her and us!
It reminds me of Nannas faith, she buried children ; and the love of her life and she never lost her faith in God. Not even a waver! I have to be like them! It's a drive that is in me, and I got the one thing I allways wanted, a beautiful little family! Dan & 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 happen in between has been a stepping up place! We lost Jordan, Jaylin was sick, and we lost her, all those moments in time that had to happen are a peice 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 ok, 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 ok, 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 the strength I've got.
