LOOKING FOR A FRIENDLY EAR

Deborah - posted on 02/15/2009

I am grateful that I could help to make your day better for you Kerri.I have started a community where you can go to get a boost or to share a poem or a story. and you will find "Welcome to Holland" there. I call this community K I S S lol < Keep It Simple Sweetie > lollol please feel free to visit and or join, We have 3 whole members!!!! lol
I love sharing poems/ stories that have helped me through the years and I found they were getting lost, this is why I started K I S S.
Like you Stacie I also do not have a child who has sickle cell but I do have 2 children with special needs, one thing I have found in my journey with other special needs parents is this, we might not all have a child with the same s/n BUT we have all had to endure many hours making calls to doctors trying to find out exactly whats going on and feeling like we are going in circles, numerous hours spent in doctors office and hospitals with our stomach in knots and at the same time trying to keep our little ones calm, making sure the other children are safe at home, wondering if this is ever going to end. The endless "fights" with schools to make sure our children are getting the education they are entitled to. The stares from adults at our children. US Just wanting to be able to SCREAM lol sometimes and know that 15 people will not be showing up at your door with a straight jacket.
I was lucky enough to find fabulous support in a wonderful chat room. slowly they are working on getting it back up and running..
I am also so grateful for this forum and for finding the moms I have found here. Thanks all for sharing!!!!
God bless and be with you all
Deborah

Kerri - posted on 02/15/2009

Stacie,  I dont know much about Sickle Cell or Autism but I am learning slowly.  I do have a son with Duchenne Muscular Dystrophy so to a degree, I understand what you go through every day and the struggles you face!  God bless you!  Feel free to email me anytime if you just need someone to listen to you!

Kerri - posted on 02/15/2009

HOLY WOW DEBORAH. ...That poem just made my day better!  Thanks for posting that!

Nancy - posted on 02/15/2009

hi there i do know how it feels i have three boys all with special needs the youngest one has autism with pica i know it is hard with the high needs but the support is always good  we r here to listen and give advice when needed but just hang itn there count the blessing  and know god gives unique children to teach the world knew things  take care

Stacie - posted on 02/14/2009

THANKS SO MUCH !!!!!!!!! WILL BE GETTING BACK TO YOU ON THAT

Terecia - posted on 02/14/2009

Oh Sweety. Just hang in there. You will have your good days and bad days. You will have laugher and you will shed many tears. But you are a mother of 2 beautiful children. So have a support system. Someone you trust to vent to and they know your only venting at that time. Even if you have to vent on here. Its ok I totally understand. Dont give up. We are the only voice that our kids have right now. SO we must learn them and speak for them.

Stacie - posted on 02/14/2009

DEBORAH
THANKS SO MUCH.AGAIN KNOWING THAT I'M NOT ALONE HELPS SO MUCH,AND I DO LOVE TULIPS.

Deborah - posted on 02/13/2009

Hello Stacie,
I have 2 children with special needs. This poem was given to me many many years ago.
also I recently started a new community. A place just to read poems or stories to have your spirit lifted.
"Welcome to Holland"

By Emily Perl Kingsley, 1987. All rights reserved.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
If You ever need a shoulder feel free to tap
Sincerely,
Deborah

Laura - posted on 02/13/2009

You're kids look beautiful!!!!

Stacie - posted on 02/13/2009

THANKS SO MUCH FINALLY A PLACE TO BELONG WERE PEOPLE UNDERSTAND

Katharine - posted on 02/13/2009

Hi Stacie,

I don't have any experience with Sickle Cell but I do have an autistic daughter so I can realte on that score.  Everyone here has a child who is afflicted.  And everyone here knows how isolated one can feel when no one around you "gets it" or "gets" your kid.  So let it out.  That's why we're here.