Special need kids...

**summercat** · 12-31-2003, 04:06 PM

It has taken me a while to beable to talk about my youngest Dd here on the boards but this time of year I get kind of sad

My youngest Dd Sara was born with a very rare disease that noone knows anything about. I raised her for only the first couple months of her life then we spent weeks in the hospitals. She was released again but only for about another week until I had to take her back & tell the dr's I could no longer care for her

That was the last time I brought Sara home

She spent months going back & forth to the 2 hospitals around here as the dr's tried to figure out what to do for her. It took them 3 times to diagnose her with this disease because it is so rare, so rare infact that there are only 49 cases that are only similar to what she has they told me she is the ONLY one in the world with this type & they didn't know anything else.
They said if she lived to 1yr she would be ok, she did but wasn't then they said that if she lived to be 8 she would out live the disease & be able to live a "normal" life.
Sara is now 18 years old but mentally only 2 years old because of the damage done to her brain. She can no longer speak or laugh So to all you parents who are fortunate to be raising your special children you really are truly blessed & I would give anything to beable to see my little girl again I know someday I will but it doesn't take away the sadness of not knowing how she is from me or her big sister.

**mrscornbread** · 12-31-2003, 04:12 PM

Summercat, your post leaves me kind of speechless, but I need to respond. Thank you for your post and for trusting us enough to share in the intimate parts of your life. I am sorry that life has thrown this curve. I know that this may be so hard for you to understand, but your hardships may just be what it takes for others to realize how precious their children really are. I wish you and your family the best. I will keep Sara in my prayers. Thanks for sharing her story with us. God Bless you.

**Mom23boys** · 12-31-2003, 04:26 PM

Summercat, your story was very eye opening to all parents. Each day we should all be thankful for what God has given us. I will be praying for Sara and her family.

**captclearance** · 12-31-2003, 04:26 PM

I am so sorry that you have all of this on your plate !
I'm left a little speachless also, I don't know what it's been like for you ..... I'm glad you feel safe to share this with the people here that care about you !
{{{{{{{{{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}}}}}}}

**heavensent_7** · 12-31-2003, 05:03 PM

to you and your

and for sharing your special child with us.

Your share is honest, courageous and loving.

Special needs children are very hard work but indeed special.

May your love for your child keep burning in your heart and bring you peace in the knowledge that you are doing what only a loving mother can do, finding the best available care for your child and loving her deeply.

Thank you for opening your heart and my eyes, may God grant you serenity.

**homesteadmamma** · 12-31-2003, 05:07 PM

Oh my, my heart goes out to you. Your so courageous to have posted this. I want to thank you for doing so. As a parent of 3 special needs kids, I know your heartache. It must be magnified even more so in not knowing how Sara is doing.

She will be in my prayers. If you need to share, pm at any time.

to a very special lady.

**guest2** · 12-31-2003, 05:31 PM

You have me in tears here. I know that your heart is just breaking for your precious Sara. I'm so sorry that you have had to go through this. Please know that my love, prayers and support are right there with you!

**summercat** · 12-31-2003, 05:46 PM

Thank you ladies for letting me share this with all of you.
I think the hardest thing is not knowing how your child is doing & I admire parents who are able to take care of children who are special because it is a challenge & to be so giving & caring as to be a foster parent of children whose parents are unable to care for them they are special too. Unfortunately due to my own birth defect I had no other choice but to give Sara to a family who would treat her as if she were their own & the first family did that for the first 13 yrs of her life & now she's in a new home I hope & pray that they too are treating her with love & kindness.

**SewCrafty** · 12-31-2003, 06:16 PM

Summercat

**voodidit** · 12-31-2003, 09:53 PM

Thank you for haring this with us. I have a cousin who is around 50 now and basically the same way, he doesn't speak, walk and can't do anything for himself. But he's healthy and always seems to be happy.

**paelthom** · 01-01-2004, 11:45 AM

Summercat, my heart goes out to you. I am sending you hugs.

**Heather** · 01-01-2004, 12:50 PM

Originally posted by hmsclmom
You have me in tears here. I know that your heart is just breaking for your precious Sara. I'm so sorry that you have had to go through this. Please know that my love, prayers and support are right there with you!

**Sara Noel** · 01-01-2004, 02:21 PM

I'm sure you've read bits and pieces about my Zachary. He is what makes me special. I am so very thankful that I am able to care for him and that his challenges aren't as serious as many others.

Being a mom is a profound thing and being a parent of a child with special needs is really about the most profound thing I have ever experienced.

My heart aches to know you carry this daily in your heart and on your mind. I can only hope that you know that you made the best decision you could. I'm sure you are concerned about her care in her new home. I believe all you can do is have faith and continue to live your own life the best that you can.