What is "normal"? I'm sure we have all asked ourselves this countless times. I know as a parent we all want our kids to be "normal" and hit all the approprite milestones at the required times or before, but never late, cause that would mean our child isn't "normal". We all live by the damn guidelines that certain teachers, doctors, professors, and such have set forth as what is "normal" for a child. Then when your child doesn't do things in the "normal" way you immediately feel like you havedone something wrong as a parent and wonder why your child isn't developing and learning at the "normal" rate. Well I'm here to tell you that noone has the right to tell you what should be "normal" for your child's development. Yeah we all want our kids to succeed and fit in and for things to go easily for them, but unfortunately that isn't how it works in real life.
For me, I have finally with in the last week come to terms with the idea that Elizabeth isn't a "normal" almost 6 year old and in reality she isn't going to be a "normal" grade schooler or even middle or high schooler. This has been a very HARD idea for me to accept. Yes, she came early and has had many medical complications, but through it all I was told that by age 5 she would be right where she needs to be. She would be just like any other 5 year old. Her development will have caught up to that of her peers. However, this is far from the case. Unlike her peers who are in kindergarten getting ready to go onto 1st grade or those graduating preschool and getting ready for Kindergarten in the fall, Elizabeth is graduating her developmental delay classroom after 3 years, but only because she has aged out and now must go onto kindergarten even though she will need a lot of help and support. She knows her ABCs, but can't identify most letters or even write them and the same goes for numbers. Her cutting of paper is only at a 3 yr old level and she has just now started drawing more then scribbles. Most people can only understand about 30% of what she is saying and when she is really frustrated and trying hard to say something she will stutter to no end. All this is despite the fact that she has had 3 years of school and therapy. Did I mention that she runs like a 3 year old as well. Oh and to top it off, she has to be fed her food on a schedule and in a certain way and all those foods are what a baby eats that is only 6 months old, no texture to it what so ever.
Don't get me wrong, I of all people know exactly how far she has come since being born and am so very very proud of her!! She has no idea that I have had such a hard time accepting all these challenges. I still remember clear as day the day I was told she needed a tracheostomy to breath and the first time i saw her after that surgery. Prior to the surgery she was just learning to coo and all of sudden I couldn't even hear her cry when she needed me. I also remember when I finally told the doctors to put the feeding tube in her and make her stop throwing up. That was one of the hardest decisions I have ever had to make and to this day it still haunts me. But I knew the risks of her not wanting to eat in the future and I still said to do it, cause at that time she was only 7 months old and wouldn't even allow a toy in her mouth let alone food, therefor it was the lessor of 2 evils I guess.
After thid last illness, it has finally set in that even though I want her to eat by mouth more than anything and getb her damn feeding tube out, it's not going to happen.....at least not for a very long time. In fact as I was coming to terms with this the other day, I even jokingly said to Bill, my daughter will be getting her driver's license before she eats age appropriate food. The sad thing is that deep down I believe this may be true. It's so hard for others to understand this concept. I have heard so many time34s, "just don't give her food through her feeding tube, she will eventually get hungry and want to eat and viola, problem solved." I really wished it worked that way, but sadly it doesn't. Unfortunatley at this stage in the game it's a trained behavior, fear, and for Elizabeth partial medical problem. Her body can only tolerate a certain amount of food before she becomes violently ill and unfortunatly the amount she can tolerate is not the amount we need for to have calorie and liquid wise, therefor we are actually looking at increasing her night time tube feed back up to one can a day. For a year now she has been between 15 and 17 kilograms for her wieght. 1kg is equal to 2.2 lbs. So when you figure it out, I have a 5 yr old that is only between 33 and 37 lbs and still wears 4t clothes. For me, this has probably been the hardest set back for me to overcome and accept. I want my daughter to not have to worry when she is playing with her friends that one of them may accidently pull her feeding tube out. I hate that she has to constantly tell her peers why she doesn't eat the food they do and why she has the feeding tube.
The best thing that has happened for us both is Bill coming into our lives. For me, I wondered if I would ever meet anyone that would want to be with me and also accept Elizabeth and all the challenges that come from having her. Having a child is a struggle in itself, but having one such as Elizabeth is even harder. We don't have a lot of alone time or time for just the 2 of us. We have to set our schedules around her feeding schedule and when she gets sick it's even more complicated. Last week I had her to the er 3 times and not once did Bill bad mouth me or say I was being narotic. He is so super supportive and wonderful. To live a typical day in our lives is no easy feat and he took it on and I don't think he has looked back once and if he has he hasn't told me so. He helps feed her, discipline her, care of her, and support her. He is her best friend and she is his. It is so wonderful to know I have such a loving, supportive, caring man in mine and Elizabeth's life. I have never heard him complain, not even once about all the extra work that comes from it, he just goes with the punches. He helps me decide things on a daily basis and is very involved in all aspects of her life. He has truly been a Godsend and I can't thank him enough for everyting he does and is to us.
I guess I just needed to get a few things off my chest and I also hope this helps others understand a little bit better where I am coming from in a daily basis.
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