Re: Guess I should introduce myself

[Guest guest]

Hi Linette,

You and I have 2 things in common, even tho I live in VA. Our children have MDS

(duh! obviously...) and I had a brother who was cleft lip & palate and my cousin

is/was cleft lip and palate as well. My parents started the first ever

Support Group for Parents with children who were cleft lip/palate back in the

early '70's in San Diego CA.

Although my brother is no longer with me physically (always spiritually..) I

recognize cleft lip people right off the bat.....and I am so amazed how well

surgeries go and how well they look afterwards.....most often times like a

completely different person....it just amazes me how far the medical community

has come since my brother was born. My parents struggled for a year to feed my

brother with a bottle and tried and used everything they could get their hands

on at the time.

When Austin had his heart surgery, my parents flew out from CA to be with me for

the week. I guess the PICU nurses had a preconceived notion about DS kids and

tried to feed Austin with a nipple for Cleft Palate babies (the longer

ones....). My Mom asked what it was normally used for and when I told her she

said " Boy, I wish I had had this when Tommy was born...would have saved us a

lot of sleepless nights! " She too is amazed at the medical community and how far

it's come since 1973.

My Tommy underwent 2 open heart surgeries in the mid to late '70's when they

were hardly done (just being discovered more like) and passed away Sept. 4, 1979

at the age of 6 due to heart failure.

I guess the point of all this rambling is that I still have a special " soft "

spot for Cleft kids, as they remind me of Tommy.

Thanks for letting me share and ramble....

Becky

Mom to Austin 5, MDS and Trey 7, ADHD

Warmest Regards

Team BRATS

http://teambrats08.chipin.com/team-brats-becky-rowe-austin-trey-smith

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Guess I should introduce myself.

Hello,

I recently joined the IMDSA board as the State Representative for

Michigan, and would like to take a moment and introduce myself. I

am the mother of four beautiful children. Each with its own unique

talent and personality. Laila is 14(she was born with a bilateral

cleft lip and palate), is 13, Tahiz is 8 and Aniza is 21

months old(she has MDS). I am married to Ramon who is a wonderful

husband and support. We live in Grand Blanc Michigan, where I am a

stay at home mom for the most part. My husband works in

manufacturing.

I was so excited at the opportunity to be the state rep. There is

so much that can be done and I have so many ideas on how to do

wonderful things for our children and families. You will be hearing

from me quite often as I plan to organize events, provide

information and get to know the wonderful families that have been

the chosen few to have a child with MDS. There are so many

resources out there and so many opportunities to continue to grow as

a family. Because we are a family, a family of individuals chosen

to be blessed by our children. I will always be available to

provide support, information, resources and to just be a friend.

We are working on putting together a monthly meeting for our

families where we can get together for support and to meet other

families. Please feel free to send us your ideas. Also, please

email me and tell me a little about yourselves and your children.

your experiences with your child and any questions that you might

have.

I am really honored to be a part of this organization and to be able

to provide you with support, love and guidance. I hope to hear from

you soon. Thank you for your time.

Sincerely

Linette