Parents of Special needs children

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Comment by guitarjee on July 20, 2011 at 2:36pm

Hey, Stacey.  :) Super idea lady.  I hope you're doing well.  I've had a super-hectic, demanding sort of year, but hopefully, I can pop on here on and off during quiet spells.  I've missed you - keep up the great work, though.  You make a difference.  Hugs ~

Comment by Alicia (Alsan) on November 10, 2010 at 9:23am

I haven't lost a child and won't even pretend to understand what your family is going through, but I used to work with special needs kids and have lost more than I care to think about. I know some of the families had said hospice was a great help - maybe they could help? Your family is on my mind and in my prayers.

Comment by April Diaz-Albertini on November 8, 2010 at 6:53pm

She has been in pain and has alot of anxiety. We are trying to keep it under control. Last night was bad. Very bad. I thought we were going to lose her. I can't even begin to express how heavy and sad my heart is. I just wish I knew some way to help her. I tried holding her today and it hurt her. So I put her in her bed and tried laying next to her but that just seemed to make it worse. Is there anyone here who has lost their child due to there disorder or illness. Kylie has a rare blood enzyme disorder called GM1 gangliosidosis stage 2. It is terminal but we thought and hoped we would have a little while longer with her.

Alicia- she loves to paint. It's one of the few things she was able to do. But she has become unable to do that anymore.

As for everyone else I truely appreciate your thoughts and prayers. Just knowing that people care that are total strangers makes a huge difference.

Comment by Alicia (Alsan) on November 8, 2010 at 5:29pm

April I am so so sorry. Hugs to you and your beautiful girl (I love the pic of her finger painting!) Your family and your daughter are in my prayers.

Comment by 1 tired mommy on November 8, 2010 at 3:55pm

April I am so sorry that you and your family are having to go through this very diffucult situation. I am hoping that she is not in any pain and they are making her as confortable as they can. If there was anything I could say to make this any easier I would, but I know the loss of a child is the hardest thing you will ever go through. I am truly sorry.

Comment by Shawn Arnold on November 8, 2010 at 8:33am

April, you can count on my prayers for your daughter and your family. I am SO SORRY you are going through this. As a fellow mom this rips my heart out- I can no way pretend to know how you feel, but I feel deep sadness for you. Feel free to come to PolkMoms for support at anytime! My thoughts are with you. : (

Comment by April Diaz-Albertini on November 8, 2010 at 12:59am

So my baby girl who is severly disabled is dieing. Was in the hospital for 2 weeks and got home wensday. She took a bad turn tonight. Not sure how much longer we have with her. Please pray for my little baby girl. Thanks everyone.

Comment by rockit6969 on June 3, 2010 at 8:42am

FYI, this is a free parenting seminar.
Mark your calendars for Saturday, June 5, 2010!
Heartland for Children is pleased to invite you to a FREE community event featuring John Rosemond. Mr. Rosemond is a family psychologist, best-selling author, nationally-syndicated columnist, and America’s most popular parenting speaker.

Mr. Rosemond will be at the Highland Park Church of the Nazarene (4777 Lakeland Highlands Road, Lakeland, FL 33813) on Saturday, June 5, 2010.


The schedule is as follows.
9:30 AM – 10:30 AM Registration
10:30 AM – 12 Noon Parenting the Strong Willed Child
12 Noon – 1:00 PM Book Signing / Lunch (optional lunch provided
for $10)
1:00 PM – 2:30 PM Parenting the Strong Willed Teen

The event is FREE, but pre-registration is REQUIRED. Bring a friend,
family member, neighbor, everyone is invited. Space is limited.
Register by June 2, 2010 on-line at www.heartlandforchildren.org

For more information, visit www.heartlandforchildren.org or contact Danette Travis, dtravis2@heartlandforchildren.org, 863-519-8900 ext.
261. This event is sponsored by Heartland for Children and the State of Florida Department of Children and Families.

Comment by Awilda Paquin on April 27, 2010 at 4:42pm

Thank you for welcoming to this group. I am the new mommy to 2 children with Apert Syndrome, a boy and a girl. My kids not only have the condition but there is a long string of other issues attached to the main one. Having raised 3 children of my own, without health or mental issues, this new scenario is very confusing some days and very lonely sometimes. I love my babies so much, wouldn't change a minute of my life. So to have a place like this where I can read and get input on the life of other families with children with special needs is a God's send.

Comment by Shawn Arnold on March 26, 2010 at 10:58am

great to see this going! :)

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