The hardest part

April 6, 2008 at 10:29 am | In Blogroll | 5 Comments
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On friday, I was in Court to watch my hubby do a plea for a friend of mine.  She has had her fair share of dramas of late.  She leaned over to me afterwards and said “What else?  What else can happen?  What happened to not getting more then what you can handle?”

I looked her in the eye to shed my few words of wisdom.  ”I could have told you that was crap,” I said.

The hardest part of a having a child with a disability?  Well, there have been many hard parts.  Some, that were very hard at first and not so hard now.  As Moo ages, we approach different issues.  There are things that get easier.  Things that get harder.

The easiest part of all this has always been Moo.  He is and will always be my little miracle.  

But if I was to nominate just one “hard” part, well it would have to be the constant intrusion into our life.  Intrusion in the name of medical assistance.  Intrusion in the name of therapy.  Intrusion in the name of social inclusion.  Intrusion in the name of public policy.  Intrusion in the name of education.  And just plain intrusion in the name of busy bodies.  Intrusion comes in many forms.

I do resent this intrusion into our lives.  What I don’t know is what to do about it.

 

Master C, Me, Moo, Hubby and Sumo 

5 Comments »

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  1. Great post! The saying “We aren’t given more than we can handle” has been a hard one for me to swallow too. I agree that the “intrusion” which has come about in our lives is definately on the list of “hard” things to accept.

    Oh, I love the family photo!

    Comment by Mel — April 6, 2008 #

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  2. Intrusion…you are so right. A real like of privacy comes with all of this.

    Comment by Jodi — April 6, 2008 #

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  3. Hi Jacqui,

    You are so right – it is an intrusion. But I especially agree that the hardest thing about having a kid with disability is not the kid but all the other people you end up having to deal with! Some beautiful posts. Sorry to have been so out of touch. I love the powerchair video!

    xoxox

    Comment by Kathryn — April 8, 2008 #

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  4. Hi. I just found your site tonight as I am out reading and looking for encouragement. My son was born at 23 weeks and while in the NICU suffered a grade 3 brain bleed. He is at high risk for CP as well as cognitive and developmental delays. I can’t express the fear I feel although you probably know it. Thank you for sharing – watching the video of Moo (he is beautiful) and your family is filled with so much Joy. thank you for sharing and putting your self out there! Kyle is 6 weeks old corrected so we still live in a big world of unknowns. It is wonderful to see you family flourishing. Thank you.

    Comment by Kelly Sherrill — April 8, 2008 #

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  5. I cannot imagine the amount of intrusion you describe in my life. I’ve been convinced that I do have something to offer in order to make those intrusions into people’s lives. Inasmuch as people are allowed to say no to the intrusions, the system seems to work against owning your own life (lives). I invite you to freely choose to visit my blog. I’ll be looking on yours again. Thanks. Barbara therapist

    Comment by Barbara — April 15, 2008 #

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