I am a proud, albeit often exhausted and out smarted, mother of 4 . My babies range in age from 9-3. They are so much more than words can describe. I have made mention of them here and there, more Kailey than the others, because well, she is unique unto herself and has traveled a journey of her own. So, I shall share with you a little about my babes. How my surgery has impacted or not impacted them, and how my life revolves around them. They are my “job” my passion, my hobby, my pride.
Kevin Jr. is 9 years old. He was named after his daddy, but he was also named after my brother Kevin who passed away at the young age of 16. I have never met a Kevin I didn’t like. Ever.
Kevin is a very sweet, very concerned child. He didn’t have very long as an only child, and the glory that should be only childhood was cut short when he was 9 months old and Kailey’s diagnoses came to light. He was just a babe, but it affected him. Momma was suddenly not the center of his world, Nana and Pop and Grandma and Daddy were. Momma shut down.
Kevin is needy, looking for attention and always wanting to be loved. He is both a people pleaser and a skootch. He is brilliant, really he is. This kid can get down and dirty talking politics and geography. He knows populations in random states. He loves maps and astronomy, loves family and wishes I had a better family tree to study, and sometimes he quietly thinks about things for quite a while before hitting us with the big questions that send me to google for answers.
At age 4, he got on a two wheeler bike and took off, never needing training wheels. He can skateboard, and caster board, inline skate, and do stunts with his scooter. He is amazing on these type of things. However, if you throw a ball at him, he will DUCK!
At his age he has seen far too much sadness and worry. He understands the fragility of life, and has witnessed his sister’s struggle with life enough that even when she is healthy, it weighs on his heart and his mind. He is a very good big brother, and a very darling loving little boy. (another time I will tell you of the day he painted the back door with grape jelly and broke a dozen eggs in the bay window).
Kailey is a spit fire. She has strength, will, and sassiness. She is fresh, brilliant, a go getter. Kailey doesn’t take the words “you can’t” well, and will go out of her way to prove that not only CAN she, but she WILL and she will do it better than anybody else. Kailey is my child all things techy. She can hop on the computer and read the weather radar, find games and master them, pick up angry birds and get the high score after her Daddy has played all weekend long. Kailey loves musicals and dancing. Hair Spray is one of her favorite movies.
For many years she insisted that she was a princess, and was to be called one as well. Then one day she changed her mind and said she was no longer a princess, but some day she will be a ballerina.
Kailey’s story is long and detailed. She was not expected to live one day. Today she is eight years old and lives her life to the fullest. She has changed people’s opinions of disabled children, and she has proved time and again that she is just a typical kid who happens to be medically fragile.
Her medical issues include spina bifida (she uses a wheelchair), hydrocephalus (has a vp shunt), was born with a deformed mitral valve (she is on replacement #2 and when the room is quiet you can hear her valve tick like a clock as the blood passes through the leaflets. It’s kind of awesome), and a double outlet right ventricle (her aorta was on the wrong side). She had a unilateral cleft lip and a bilateral cleft palate. She has a very rare form of ectodermal dysplacia called Hay-Wells Syndrome (AKA AEC Syndrome). While these things all impact her life greatly, they do not define her AT ALL. Kailey is stronger than anybody you have ever met. She is incredible. A snot wad, but incredible all the same!
TJ is baby number 3. A major life decision. Do we try for another baby, after all of Kailey’s medical issues? Doctors assured us it was not genetic. A random mutation, and so we went forth and TJ came along!
TJ is short for Thomas John. He is not a Tommy, a Tom, a Thomas. He is a TJ. He is adorable, sweet, tough and funny! This past week he had a bunch of grown people licking their own arm pits. Why? Because he asked “Is it possible for a human being to lick their own arm pit?” and like a bunch of idiots, each time, we all tried it. Yep, go ahead, he would laugh at you, but go for it. You can. I promise.
TJ is a rough and tumble kind of kid. He can throw a ball and catch a ball, climb anything, ride anything. He is the play in the mud kind of kid that you use to see back when we were kids. He is carefree and happy as a clam. He is convinced that he is the best looking child to ever grace the face of the earth, and refers to his face as “the money maker”. We have not discouraged this behavior because well, he is handsome as can be, and it is quite funny… for now.
TJ is momma’s boy. He pledges his love for me 100 times a day. When he grows up, he wants to marry me. When I told him that was not possible, I’m already married to Daddy and he will want to go out an find a wife all his own, he told me he will never move out. He can’t stand to be away from me. For now, this idea has not been discouraged either. Someday I will be some beautiful girl’s worst nightmare. The mother who never cut the cord. Yeah, well.. too bad! I had to deal with it, somebody else can too.
TJ is all about being the cool kid. This has led to quite the debate with in the family. How long do you let the six year old call the shots? He, uh, doesn’t want to cut his hair. Like EVER. This battle will end soon, but here he is with his long hair glory:
After a life changing move to Georgia, we decided that we had a 5 bedroom house, we were insane anyway, and what the hell! Lets have a baby!!
Enter Alison. The one and only baby to be born with colic! Came out screaming and cried for then next 4 months. I really started to question my sanity and the possibility that she would cry constantly until she was 21. I’m pretty sure that at some point in my years as a naughty child, my mother wished upon me a child who cried every single day. Somehow the universe misunderstood and I got one that cried every waking moment of every single day.
Then, one day it stopped. And she smiled! And she has not stopped smiling since! Alison is a diva. A princess, a shoe lover, an accessory queen. She is ultra girly and I’m not really sure where it comes from. For real. She loves music, loves to dance, loves to wear dresses. She loves make up and jewelry, all things sparkly, and pretty much anything pink. At 3 years old she can identify Katy Perry by voice and sight, Ke$ha (lord help me) and Pink. She dances and dances and dances her butt off. If the room is quiet she is sure to be singing something or telling a story that ALWAYS begins with “One time…” < Yes I also think American Pie and “Once when i was in band camp”. LOL. Yep yep, that’s my baby.
Alison is home with me while the bigger kids go to school. She was born past the school cut off date and will be home with me one year more than the other kids were. I’m not disappointed by this. I love every second with her. She cracks me up. She is pushy and bossy with the other kids, but when she is home with out them, she is blissful. She is content to be the only child. She is so much fun, and I have no doubt that as she gets older, her heart will be in the arts.
My weight loss has played a role in my children’s lives, although they may not realize it. Little Kevin has heard from his friends and his friend’s parents that his mom looks great. He realizes that I get out a lot more and together as a family we are out more often than not. Kailey is indifferent on my weight loss. She says she prefers me skinnier, but really she doesn’t care one way or the other. TJ has always thought I was super awesome and beautiful. To him, I am the same. He loves me and thats all that matters to him. Alison has become a make up enthusiast. She sees me get ready every day. She notices the simplest changes, from hair style to earrings. She tells me every time she sees me “You look buuuu-fuw momma” and she makes me shine.
Last but not least, the fur baby. The walking partner, the hiking trail explorer, the lake lover… this is Ruby. She is my unconditional love. She is loved and adored and she loves us like no other.