What It's Like Living with a Disability in the Family

Forum for parents of injured who are seeking information from other parents or people living with the injury. All welcome
Angela Butterfly
Posts: 483
Joined: Fri Jul 18, 2003 4:24 pm

Re: What It's Like Living with a Disability in the Family

Post by Angela Butterfly »

Hi Everyone,
In two weeks I will loose my daily e-mail access. Noticed, unfortunately, we have some new posters....and where are you Carolyn J? Hope you and yours are O.K.

Karen McClune
Posts: 746
Joined: Wed Sep 10, 2003 4:58 pm

Re: What It's Like Living with a Disability in the Family

Post by Karen McClune »

Angela,

I will miss your post once your daughter goes back to school, it is always nice having you post each year.

I wish you the best for the rest of the year.

I always love reading the first post you posted about your family.

Hugs,Karen
sharonpmurray
Posts: 18
Joined: Wed Mar 24, 2004 1:16 pm

Re: What It's Like Living with a Disability in the Family

Post by sharonpmurray »

Thanks, as a new erbs mom, it is nice to know your daughter is doing so well, regards, Sharon.
Kath
Posts: 3242
Joined: Mon Nov 18, 2002 4:11 pm
Injury Description, Date, extent, surgical intervention etc: I am ROBPI, global injury, Horner's Syndrome. No surgery but PT started at 2 weeks old under the direction of New York Hospital. I wore a brace 24/7 for the first 11 months of my life. I've never let my injury be used as an excuse not to do something. I've approach all things, in life, as a challenge. I approach anything new wondering if I can do it. I tried so many things I might never have tried, if I were not obpi. Being OBPI has made me strong, creative, more determined and persistent. I believe that being obpi has given me a very strong sense of humor and compassion for others.
Location: New York

Re: What It's Like Living with a Disability in the Family

Post by Kath »

Angela
I think we will all miss you and your posts.
You helped so many people over the summer.
You have been so kind and supportive to everyone. I could not help but notice how often you bring posts to the top to help someone with a question. I hope you can get on from time to time during the school breaks.

Thanks so much

Kath
Kath robpi/adult

Kathleen Mallozzi
admin
Site Admin
Posts: 19873
Joined: Mon Nov 16, 2009 9:59 pm

Re: What It's Like Living with a Disability in the Family

Post by admin »

Hi! I just wanted you to know that may heart goes out
to you! I too have a child with a disability.
My son Alex is 8 years old and he has Autisum. I too
went through doctors telling me that there was no cure
and no known reason for his disability. I have done
my share of crying. Like you I never gave up hope on
my child. Alex has come so far from where he used to be
that the doctors can't believe it. Part of me wants to
feel sorry for him and let Alex have his way but I love
him too much to just cave in and let him do what he wants. I too give him chores to do and give him the
same rules as My daughter Amanda. She is 7. Everything
that happens in life happens for a reason. We may not
always like it, but God has a plan for everything.
God says that there are Angels unaware. Alex is my angle. He make me see things in life that most people
over look. Alex will get so excited over a flower or
a butterfly. I used to just walk by and not notice
things. Maybe God gave Alex to me so I would notice
all of his beautiful work that he has creatd. Didn't
you say that your daughter now paints? She too also
notices the beauty in life. Maybe we all could learn
alot about life from our children. I just than God
that he gave Alex to me. Thank you so much for sharing
your story with the whole world. Maybe we all need to
stop our busy lives from time to time just to smell the
roses. I know Alex would!

God bless You and your family!
Susan!
Angela Butterfly
Posts: 483
Joined: Fri Jul 18, 2003 4:24 pm

Re: What It's Like Living with a Disability in the Family

Post by Angela Butterfly »

Back to top for another summer, for Mollie.
Kath
Posts: 3242
Joined: Mon Nov 18, 2002 4:11 pm
Injury Description, Date, extent, surgical intervention etc: I am ROBPI, global injury, Horner's Syndrome. No surgery but PT started at 2 weeks old under the direction of New York Hospital. I wore a brace 24/7 for the first 11 months of my life. I've never let my injury be used as an excuse not to do something. I've approach all things, in life, as a challenge. I approach anything new wondering if I can do it. I tried so many things I might never have tried, if I were not obpi. Being OBPI has made me strong, creative, more determined and persistent. I believe that being obpi has given me a very strong sense of humor and compassion for others.
Location: New York

Re: What It's Like Living with a Disability in the Family

Post by Kath »

Welcome Back my dear friend Angela.

I see you have your daughter home for the summer...
Look forward to hearing from you
Kath
Kath robpi/adult

Kathleen Mallozzi
Chloesmom
Posts: 53
Joined: Tue Apr 19, 2005 2:56 pm

Re: What It's Like Living with a Disability in the Family

Post by Chloesmom »

Thank you for posting this. It REALLY helps to know that despite how hard things are right now my daughter will grow up and time will pass and life will go on. We are very intrenched in BPI now - learning everything we can-doing millions of arm/shoulder/neck exercises-its consuming us. This really helps me to look at the big picture.
Angela Butterfly
Posts: 483
Joined: Fri Jul 18, 2003 4:24 pm

Re: What It's Like Living with a Disability in the Family

Post by Angela Butterfly »

Someone e-mailed me and asked me exactly WHAT keyboard I had gotten Jill, when they read my original post. So over 10 years later, I did a internet search and here it is. COMFORT KEYBOARD

http://www.comfortkeyboard.com/index.html

It is SOOOOOO adjustable it is amazing. I bought the top White one pictured at the top of the home page.

For Jill I had to stand up, almost vertical, the Left side, and she preferred to leave the right side flat. Each section Pivots, so you can position it just any old way.

NOW for you LEFTIES......that 10 key pad can be moved off the, very sturdy, metal base, and moved over to your dominate LEFT hand.


admin
Site Admin
Posts: 19873
Joined: Mon Nov 16, 2009 9:59 pm

Re: What It's Like Living with a Disability in the Family

Post by admin »

Thank you Angela for the site. This will probably come in handy for my son, since he has become a lefty. I didnt see any prices, how expensive are they?
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