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Thursday, June 23, 2011

The Isolation of Special Needs

I feel sort of isolated at times.  I feel sort of offended some times. I feel sort of sad sometimes. As I feel new relationships grow and blossom, I see other relationships fracture.  I hate it when people say, "Oh I understand... because - (insert reason)."  The truth is - only about 500 people understand. Social Isolation

*** No LIE - an example of this JUST happened after I wrote the paragraph above.  About 5 minutes ago, I went back - stopped Alexander's feeding pump, unplugged it, gave him his 2 seizure medicines, replugged it in, restarted it, and came back out here to write this post.  6 sentences into this post - Ray says, "Did you unclamp Alexander?"  (We have to clamp his feeding tube when we give his medicine.)  And I hear it - the beep, beep, beep of his feeding pump. *sigh* So I hopped up and ran full sprint back to his room to unclamp his tube before the beeping woke up Alexander and the twins. *sigh*.  So you understand that, huh?  ***

I think the words, "I understand," might be the most offensive right now.  As much as we are praising the victories and celebrating our time together - almost no one else really understands what goes on here. People make casual remarks that hurt. You don't understand - not even if you have lots of children or small children.  At age 14 months did your child feed him/herself?  At least partially? 45 minutes to eat an ounce or two is a victory.  You don't understand. At 14 months was your child sitting? standing? crawling? starting to walk? You don't understand.  I don't measure our life by milestones anymore.  Alexander will eat when he eats, walk when he walks, sit when he sits.... However - I also don't tell someone with cancer that I understand... because I don't.  Social Isolation.

A few days ago I was asked an ice breaker question:  What is the worst thing you've read?  You know what I kept thinking? That article from this post.  I can't say that.  This isn't about my son's special needs.  I can't ruin the ice breaker by telling everyone about that article.  Instead, I answered another question with a useless answer. Social Isolation.

When people compare their lives to ours. This has caused my relationships to fracture.  They don't understand. Please don't compare your ruined day at the park to our cancelled family outing because of an emergency trip to Hershey.  On the flip side, I have a lot of friends who almost seem apologetic when they open up about life's curve balls they were just thrown.  They say things like, well..... compared to what you are going through. I don't really feel that is ok either.  A divorce is still hurtful.  Problems with children are still hurtful.  Illness is still hurtful.  The death of a loved one is still hurtful.  Even a breakup is still hurtful.  I would love to lend support to my friends.  Either way - I don't think we should compare lives.  They are just different.  I can be a friend to you ~ you can be a friend to me.... But let's not compare the realities we both face. Because the reality is that comparing is a terrible way to show support, and isn't that what a relationship is supposed to be about? Social Isolation.

I've been feeling sad because I'm trying to put some boundaries up for the sake of my family.  As much as I feel sad - I also feel rejuvenated because of this time spent with my children.  I feel like I need to protect this. I need to make sure my family remains my number one priority.  So I'm starting to put up some small walls to protect the sanctity of our family.  And for each minute I try to pry away from outside sources to secure for our family - is a struggle.  I have used the words, "we need this" too many times.  I have mentioned Alexander's special needs too many times.  I have listed his specific special needs too many times.  I don't think about this stuff in this way ~ because it makes me sad. And who do I tell?  Who would understand?  Social Isolation

Sunday is our regional Wolf Hirschhorn gathering.  Many of my now-closest-friends will be there. People who understand.  People who will relieve me of this social isolation.  People who will rejuvenate my soul - as they always do.  This could not come at a better time.  I want to live in the world of people. I'm ready to be out of isolation.

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2 Comments:

At June 23, 2011 at 8:36 PM , Blogger Kisses4Kaylee said...

Aw, Kristen, you have such an amazing way with words! I remember when this photo was taken; our babies were such tiny little things. Sunday is going to be SO amazing-- to see the changes, the growth, and the people who make us feel a little more "normal" in what happens in our day to day lives. I, for one, cannot wait to see everyone-- including some new friends-- as we celebrate our lives together. Having each other makes this journey not just bearable on the 'sad' days, but actually fun!

As for your anecdote about the pump, I laughed. I cannot tell you how often I have forgotten to unclamp the tube before starting Kaylee's feed.

Really looking forward to a great weekend!

 
At June 23, 2011 at 8:49 PM , Anonymous Anna said...

Make sure you guys take heaps of photos on Sunday!! I am meeting up with a couple of my WHS mamas on Sunday too. Only we are meeting sans kids at IKEA to just hang out and catch up.

Social isolation is very real when you have a child with a disability. There are some people who do genuinely want to understand. But unless you have a child with a disability, it is very difficult to.

I had to laugh too at the clamped tube. I do that all the time. Or I leave the little medicine side open so all the feed comes out.

I have written similar posts in the past to this one.

Have a great weekend girls xoxox

 

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