Bummed... Having a Medically Complicated Child Often Means Giving Up Freedom
Posted by Jennifer Fiander at 7/14/2009 12:19 PM 
Categories: Angelman Syndrome
Tags: Special Needs and Life Angelman Syndrome special needs children
Categories: Angelman Syndrome
Tags: Special Needs and Life Angelman Syndrome special needs children
How ironic- I wrote this post a few days ago. And before I even posted it, my friend was telling me about how she is glad she didn't have a 3rd child like she had first wanted, and how she has all this "freedom" now that her kids are getting older. I told her how I had just written about this, and how hard this is for me. Awkward. Should have kept my mouth shut.
I find it funny how people will talk about this, and not have any realization about what this means for me, and the "freedom" I will never have...
Bummed... Having a Medically Complicated Child Often Means Giving Up Freedom
I don't bummed about life with a disabled child too often, because I don't let myself. I try not to think about it, and I just enjoy him. But, when I think about the lifelong commitment of having Cameron, and what it means for my freedom and my own quality of life, it does sometimes get me down.
I'm jealous of my friends who have all typical children when they talk about their lives. They can leave their child/ren with babysitters. They don't have to worry about seizures and gtubes getting pulled out. They don't have to worry that their child can't communicate his or her needs to someone. They just don't have to consider so many things that I have to consider.
But, what really gets to me is the fact that while my friends have children who are getting older and will be able to be left alone, and they have more freedom, I will never have that luxury. I won't be able to get Cameron (my oldest) to watch his sisters so I can run to the store to do errands. I can't leave him in the car unattended. I can't just let him play in the yard like other 9 year olds can, and keep an eye on him.
My friends' children are getting older and they are appreciated their children's independence, and their time is freed up. Mine is not. I thought I commited to being tied to the hip to my children for X number of years, just like everyone else. It's hard when they are enjoying life, and I have to worry about whether I can go, which often means bringing him with me, and whether or not it is wheelchair accessible.
I don't feel sorry for myself that Cameron is my son. In fact, my life is very blessed with him. But, I do miss my freedom, and yes, I admit that it makes me angry and I do feel sorry for what I am missing, and that unlike others with toddlers, there is no end in sight for me.
I find it funny how people will talk about this, and not have any realization about what this means for me, and the "freedom" I will never have...
Bummed... Having a Medically Complicated Child Often Means Giving Up Freedom
I don't bummed about life with a disabled child too often, because I don't let myself. I try not to think about it, and I just enjoy him. But, when I think about the lifelong commitment of having Cameron, and what it means for my freedom and my own quality of life, it does sometimes get me down.
I'm jealous of my friends who have all typical children when they talk about their lives. They can leave their child/ren with babysitters. They don't have to worry about seizures and gtubes getting pulled out. They don't have to worry that their child can't communicate his or her needs to someone. They just don't have to consider so many things that I have to consider.
But, what really gets to me is the fact that while my friends have children who are getting older and will be able to be left alone, and they have more freedom, I will never have that luxury. I won't be able to get Cameron (my oldest) to watch his sisters so I can run to the store to do errands. I can't leave him in the car unattended. I can't just let him play in the yard like other 9 year olds can, and keep an eye on him.
My friends' children are getting older and they are appreciated their children's independence, and their time is freed up. Mine is not. I thought I commited to being tied to the hip to my children for X number of years, just like everyone else. It's hard when they are enjoying life, and I have to worry about whether I can go, which often means bringing him with me, and whether or not it is wheelchair accessible.
I don't feel sorry for myself that Cameron is my son. In fact, my life is very blessed with him. But, I do miss my freedom, and yes, I admit that it makes me angry and I do feel sorry for what I am missing, and that unlike others with toddlers, there is no end in sight for me.
So beautifully written. Thank you for putting my exact thoughts into words and reminding me, once again, that I am not alone on this journey.
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Very well said, no guilt here for feeling that way, its just a fact of our lives. You wrote to me on twitter, first time I have ever seen this! I like your site
http://specialneedsinhomeschooling.blogspot.com/ I really like your site and would like to share it
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I read your Blog to Dan, we can relate. Its not 100% the same as you know. But could never just call some random baby sitter. We attempt not to get down. But there are times when someone complains to you about something that is so very important to them and you want to scream. Geeps if that was my biggest concern. I envy there little "big" problem's but I know our time with our son is very limited so I try very hard to just take it one step at a time. Strangely as difficult as things are I find I laugh more now then ever before. Adam has given me the ultimate in prospective. I see things so clearly which allows me to laugh. Don't get me wrong I cry too but I laugh more often then I cry. I think Adam's special needs have offered us so much. I sometimes feel badly for those parents who never know what it is to be totally grateful for the smallest of things. I am not saying they don't love their children but they will never see the depth and importance of each moment as we do. Love you Jen
xoxoxo Heidi
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I think the hardest thing about raising a child with special needs is comparing. It's so easy to look at the "outside" of someone else's family and compare it with the inside of your own.
MUCH easier said than done, and I confess that I do it more than I should.
We got very close to the brink of placing our son in residential care because our household was under so much stress. When I thought about that freedom, it made me feel at once relieved and tremendously guilty.
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I couldn't have said it better myself. Other people just don't understand the long journey we have ahead of us. My son is seven and has angelmans and although i could not see my life without him it is sometimes hard.
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