What is normal?

Most people have a “normal” childhood. Normal: conforming to a standard; usual, typical, or expected. That is the definition of normal as per the dictionary. However, what really is a normal childhood?

Many would say that would be an able bodied person going to school with both parents in the home, one or both of the parents working, getting to go on family vacations, getting to have sleepovers and slumber parties, going to the moives, and going to do fun stuff with your friends, having hobbies outside of the house. For me it was some what a normal childhood, but then again very drastically different from most childhoods.

After Alan was born mom was not able to return to work so she became a stay at home mom, and Dad returned to work at Kimberly Clark. I continued to go to school everyday. In fact by the time I was in 2nd grade we had moved into a house that mom and dad had begun building before Alan was born, So I moved schools and rode the bus to school everyday and home from school everyday. Sounds pretty normal right? Well in the grand scheme of things yes that was normal. However, because of Alan’s medical needs he was not able to be taken to just any daycare. Let alone left with just any baby sitter. Mom became the stay at home mom to make sure he was taken care of correctly.

Going to school was the most normal part of my day. I got to escape from the responsibilities that were becoming part of my daily life too. My parents often tell me that they don’t know how they would have been able to do it with out me. At the time I did not realize that I was taking on a bigger role than what a normal big sister does. Alan did not like to be “hooked up” to his feeding pump as he often got aggitated when getting his feedings. So I came up with a little jam of “pump up the baby, pump up the baby, pump up the baby, JAM!” I would sing and dance to that almost every time it would distract him for a moment or two so that he would settle down and let them hook him up to the pump. He also had to have his gtube button changed every 6 months, and he would fight and fuss and tighten his stomach muscles which made it more difficult fo them to change his button, I would read books to him and distract him so they could change it. Many big sisters do not need to do that with their younger siblings.

Normal… thats being able to walk around the house with heavy footsteps, and being able to be loud from time to time. I was not really able to do that. See Alan lacks all the muscle tone to be able to sit up on his own, and his startle reflex never went away like it does with most babies. So he would lay on the floor in the living room on a “pallet” made of blankets. We lived on a peir and beam house which if you have heavy foot steps you can hear and feel you walking around the house. So when you would walk around the house you had to step lightly as to not cause your foot steps to startle Alan, or be heard throughout the house. Also being loud was not really an option in my childhood. Alan would startle at loud noises. If I wanted to be loud and crazy, like kids are most of the time, I had to go outside and be loud. Most of my childhood was spent outside, or playing quietly in my room.

Sleepovers with friends? I never really got to have that. I had one slumber party for my birthday that I got to have two friends spend the night, and we still had to be quiet and not be too loud. If we ended up laughing too loud I would get in trouble. I can probably count the amount of times I had a sleepover at our house as less than double digits. I had more sleepovers with my cousins than I did with my friends. My cousins understood more about the need to be quiet. Not saying my friends were rude and didn’t care, they just did not handle situations with Alan like my cousins did. Family is a bit different than friends after all. Family vacations were not really a thing, See Alan really couldn’t tolerate long drives, sitting up in the chair for a long period of time was never really easy for him to do. So going anywhere really was not an option as where we live is out of the way of anything fun. Planes were never really a thought for us as there is so much that Alan needs to take on a daily basis it was not cost effective. So We did not go on any family vacations.

Most of the time we did not really do anything different during the summers that we did during the school year. I got to go to my aunt’s in Mississippi, and my grandmothers in Arkansas. I really only remember going one summer. I may have went more than once but I really only remember one time. My grandparents lived across the street from my Aunt Sandy and uncle Geoff, So there were days I would walk over to their house and hang out with them I would alternate from spending the night with my aunt and uncle to spending the night with my grandparents. I spent time with my Aunt in Mississippi before going to my grandparents. She had to work everyday too but instead of staying home alone with her, I got to go to her office and hang out with her! It was really fun to spend time in an office, It was just me and her but I felt like it was a huge office. I spent a week with her and then either she took me or my grandparents came and got me but then I stayed a week in Arkansas. While my grandparents worked I would stay at their house and watch Tv. It was a fun retreat from the everyday life and responsibilities of having a sibling with special needs.