Our story starts in 2001 when I married my wife, Kristy. In 2006 we had our first son, Stone. It was a struggle like most first time parents so we figured let’s have another kid! In 2009 we found out we were going to have our second child, another boy. Since this was our second go I did not make it to every Dr visit with my wife. On a checkup and ultrasound, the Dr noticed something wrong. He could see clubbed feet and hands. He tells my wife it could be a number of things but more than likely it was Trisomy 18 and the baby would not survive. He gave her some options including abortion. She called me crying and rightly so, her world was just turned upside down. when she got home she did the one thing she should not have done, turned to the internet to look up what the Dr told her, it made things worse. We decided to have a second Dr take a look and see if he had better options for us. after he looked, he like the first said a number of things, but one was Arthrogryposis. He suggested we do an Amniocentesis test to rule out Trisomy 18. We did and the test were negative for Trisomy 18 and the Dr concluded it was probably Arthrogryposis. No one would know the severity of it until he was born. January 5, 2010 Slade was born via C-Section. When the Dr took him out he was not crying, he looked like he was but no sound was coming out. I followed the nurse to another room where they cleaned him up and I could see his legs were still back by his head, it looked as if his Knees were backwards. I could see his clubbed hands and feet and I felt lost. I told the nurse to cover him up, my wife was just not ready to see him like that. They rushed him to NICU and we took my wife into recovery. I went to see Slade, took pictures so I could show Kristy. Walking back to her room I wondered how am I going to tell her. She asked how bad was he, I said bad…. showed her the pictures and held her as she cried. It was heart breaking. arthrogryposis multiplex congenital, was the diagnosis we were given, it describes congenital joint contracture in two or more areas of the body. Children born with one or more joint contractures have abnormal fibrosis of the muscle tissue causing muscle shortening, and therefore are unable to perform active extension and flexion in the affected joint or joints. Slade has it in his arms legs hands feet and jaw. After talking with Doctors and a Geneticist, the conclude it was something that just happened. Slade would be in NICU for a total of 3 months, during that time we would take Stone to see his little brother as often as we could, at 4 it was hard for him to understand what was going on and at time he would act out at daycare and at home. trying to figure out what to do about Stone we were told Slade would need a Feeding Tube, his jaw was not developed correctly and it impacted his eating. Just under a month of his NICU stay we were going home. his Pulmonary Dr wanted to do a sleep study. We checked out went to the study and after went home. Just a few hours after getting home the hospital calls and tells us to get back as ASAP. When the Dr went over the results it was one of the worst cases of sleep apnea he has seen in a child. Back at the hospital they tell us they are going to do a Trichotomy.
One day bring Stone to see his brother I get a call from the Sheriff department dispatch. My wife had to call 911, she went to the bathroom and nothing but blood came out. I called a neighbor to check on her and I meet them at the hospital. What else do we have to deal with? Dr did not find anything right away and we go home. Two days later I drop Kristy off at the hospital for a checkup and I go to work. luckily I did not work far from the hospital. At lunch I leave to go visit Slade and pick up Kristy, I call her to see where to meet up and when I get there I see her standing in the bathroom talking to a nurse and BAM, down she goes. She passed out, she was bleeding again. they rush her over to the ER and this time the Dr could see the leakage coming from her uterus. I call our family and friends to make sure Stone is taken care off. in the meantime, they do a procedure to put stents in to stop the bleeding. Now she is in the ICU…., half my family is in the hospital. I would walk from one ICU to the other side of the hospital to another ICU. Finally, after a week I was able to bring my wife home. Slade would have to wait.
With the trach in and us learning how to change it, it’s the end of March 2010, now we go home. Stone the oldest still not sure how to handle his brother, so much attention was given to Slade, Stone felt left out. It was tough for me to handle but harder on my oldest. He acted out more at pre-school, and they almost kicked him out. after talking to the people in charge they worked with us. we were just happy to all be under one roof. Our family was great during all of this, my Aunt, a nurse would come and stay a few nights to help, my dad retired and would come help out when I could not get off work. the problem was we lived in Baton Rouge, LA and the rest of our family was 2 hours away. It was not easy for them but we made it work somehow. Long nights, a few emergency room stays and many, many surgeries, Slade was making progress. The biggest was just over one year later, a Jaw corrective surgery where they cut his jaw and put in metal rods to extend it. every day we would turn a wrench on the extensions sticking out of jaw to move it out. it worked, we could finally hear him cry!
Tempers got short, sleep was little and just endless worry, Kristy and I talked about everything under the sun, divorce was something that came up. I don’t think either one of us really wanted it, just that conversation we needed to have. This was going to be a life we both and to be all in to make work. deciding against divorce, she came up with another idea. we move closer to home. She needed to be closer to her mom, who was stepping up to help us big time! she figured Lafayette would be close enough to our families and to Baton Rouge, I would not have to quit my job. It was taking me an hour plus to get to work and home every day with the traffic in Baton Rouge anyway so why not make it interesting…. Talking about it to my employer got interesting, my supervisor was against it, thinking I would leave for another job closer to Lafayette. He just added to my stress. Things have a way of working themselves out. my supervisor left for another job and I had all the leverage I need to say I am moving for the betterment of my family but that also included saying in my current job. Once the dust settled and they saw I was committed to the company they had no issue with it. to be fair the company I work for has treated me with great respect, one bad apple almost spoiled the bunch. I love my job and the people I work with. with that stress factor gone we put our house for sale in December of 2011. September of 2012 we finally had an offer on our house and made plans to move.
We found a house and in October we moved to Lafayette, LA. A place I never thought I would live… the move made things better for almost everyone. Stone had a new school and was the center of attrition, he made great friends and found a place he belonged and felt wanted. My wife made new friends and was starting to get happy. I on the other hand felt left out. I loved being closer to our family farm but I used the hour and a half drive to work as a crutch not to help with Slade. I was sleeping in on the weekends, complaining when Kristy did something and I had to care for him round the clock. I was just in a bad place. Then his Trach came out, I get a call while at work to get home his trach was pulled out and they were headed to the hospital. We got him to his Pulmonary Dr and he was very satisfied with Slades progress and wanted to get it out anyway. Back home with a new challenge I had to make some choses. I decided I needed to take a bigger part in caring for Slade and Stone.
Slades legs got straightened out and he can stand tall! He walks on his own but has to be careful. he has limited use of his arms and if he falls its face first. Its happened a few times but like any kid, you put band aids on it and move on. he uses a walker and power chair most of the time, but he always wants to walk on his own. Stone adjusted to life with a special needs brother and is an awesome big brother! Stone has had his struggles, he is a small kid and always ends up with kids older than him for sports. His birthday is in July and it usually puts him in the higher age bracket. He decided he wanted to play tackle football. So in the fall of 2017 we signed him up. he got pushed around and wanted to quit, I told him he could not quit, look at your brother, he fights all the time to do just little things and you want to quit cause its hard?? You asked to play so finish it out… my first approach was not the best for Stone, I tend to yell way too much and sometimes forget kids get scared. At this point I’ve been listening to the TNQ podcast from day one and figured he need to hear it as well. so every time a new podcast would drop we would listen while waiting on the bus, he loves the intro! Time to suck it up buttercup is his favorite part. Seeing that would help I did the next best thing I could to keep driving home the never quit attitude. I got him a Never Quit Flag to hang in his room. he loved it! he finished out the season strong, even catching a pass in the last game. His brother got to see it as well as his grandparents! He was fired up. when it was all said and done he said he did not want to play football anymore and asked if I was mad. No I said, you hung in and gave it your all I am very proud of you and if its not for you that’s cool, you just can’t quit in the middle of something always finish what you start. He decided to go back to soccer, his first sport.
Slades happy attitude wins over everyone he meets. He even got to go on a hunting trip in South Texas. He bagged a 10-point buck…. I don’t even have one that big…. his friends at school love him and make him feel normal. He attends regular classes, with the help of an aid he does what all the kids in his class do, just at his pace. He still has the feeding tube, and struggles with simple tasks, but give him time he figures it out.
Stone is an honor roll student and every day before he gets on the bus I ask him, what do we do, NEVER QUIT he says. Kristy and I are in a great place and our marriage is stronger than ever! I struggle at times being a dad, but no one said it was an easy job.
Our never quit story is far from over, we just take it one at a time, we are lucky, it could be worse. I am thankful every day for what I have. Thanks for sharing all the never quit stories, they truly do inspire us to fight on!
I hope this was not too long winded,
Thanks
Greg, Kristy, Stone and Slade
Louisiana, USA!
