Gideon James' Journey

Got this from Kristi Mason 's blog with her permission. She's Billy 's awesome mom :) ===== You weren't like other children, And God was well aware, You'd need a caring family, ... With love enough to share. And so He sent you to us, And much to our surprise, You haven't been a challenge, But a blessing in disguise.

I am the child who cannot talk. You often pity me, I see it in your eyes. You wonder how much I am aware of — I see that as well. I am aware of much — whether you are happy or sad or fearful, patient or impatient, full of love and desire, or if you are just doing your duty by me. I marvel at your frustration, knowing mine to be far greater, for I cannot express myself or my needs as you do. You cannot conceive my isolation, so complete it is at times. I do not gift you with clever conversation, cute remarks to be laughed over and repeated. I do not give you answers to your everyday questions, responses over my well-being, sharing my needs, or comments about the world about me. I do not give you rewards as defined by the world’s standards — great strides in development that you can credit yourself; I do not give you understanding as you know it. 

Got this as a forwarded email ... a lot of these apply to my own family. == Moms, a stranger walks among you. We look like regular moms, but we are the hybrid to your standard engine. Our child's disability altered us, enhanced us. Many words describe us: resilient, creative, protective, emboldened, sympathetic, fierce and determined. We are special needs moms. How do our lives stand apart from your own? Take a look under the hood and see for yourself. Regular Parents vs Special Needs Parents by Dawn Villarreal , One Place for Special Needs , May 2010 Regular parents tell their kids to wake up and get dressed in the morning. And they do it. Special needs parents put on battle gear to get our kids ready to start their day. Regular parents ask their kids if they brushed their teeth. Special needs parents prompt, “Brush your top teeth.  Brush your bottom teeth. Did you get the sides? Open your mouth. My God, give me that toothbrush! You’ve left half your mea...

I read this from Kristi 's blog , an awesome mom to her son Billy. She wrote: "Its author dedicated it to a Canadian mom who lost her daughter at the hospital because the unwritten law for babies with Trisomy 13 in an emergency is DNR (Do Not Resuscitate) . Imagine, going to a hospital expecting them to save your child, and not knowing that they put a 'do not save' without telling you." Like her, I was also deeply touched by this writeup. May you other parents of special children draw strength and inspiration from this as well. === I am told one doctor said to another about a woman wanting to bear and deliver a child with known disabilities: "But who would want a child like that anyway"? Dear Doctor, Who would want a child "like that"? A person who wants to learn about love! A person who wants to know about self-sacrifice. A person who wants to know more about the value of life, who wants to move beyond the understanding o...

Got this from a forwarded message in one of my egroups. I wish I could thank the author for putting down in print what many of us are also exactly feeling and experiencing. == Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring with experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my " sisters ." photo borrowed from dreamstime.com Yes, you and I, my friend, are sisters in a sorority . A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.

A fellow egroup member of mine, Candace Barnes , from  Special Child Exchange , wrote this piece last week for her 50th birthday. I laughed and I cried while reading it because she was pretty accurate in describing how moms (of kids with special needs) like us have to prioritize other things above and beyond what we would have wanted for ourselves. As I told her, I pray that when I reach the same age, I would also have the capacity to still find humor in every situation and to never lose hope like she does. Thanks so much Candace for allowing me to share your very inspiring writeup to my other parent friends :) ====== I always said when I turned 50 I would own a sports car - bright red and fast as they come. I always said when I turned 50 I would be living the life I wanted. When I turned 50 I would be a grandmother. When I turned 50 my children would be grown and gone with lives of their own - good jobs and happy relationships. When I turned 50 I would be ...

The piece below was written by Erma Bombeck on May 11, 1980, almost three decades ago. It has remained a powerful encouragement to many mothers whose kids have special needs. Happy Mothers' Day to all you wonderful moms out there, especially my kindred souls who were also chosen to take care of special angels in this world! === Most women became mothers by accident, some by choice, a few by social pressures and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over Earth. As he observes, he instructs his angels to make notes. "Armstrong, Beth; son; patron saint, Matthew. Forrest, Marjorie; daughter; patron saint, Cecilia. Finally he passes a name to an angel and smiles, "Give her a handicapped child." photo borrowed from polyvore.com The angel is curious. "Why this one, God? She...

Being a mom of a child with special needs, it is my prayer that my other kids would continue to love James unconditionally in spite of his disabilities. Thus, I admire other children who show so much understanding and compassion of their siblings who also have special needs. I was forwarded a link in youtube about a Clara Sigmon 's poem about her younger brother, David, who has Down Syndrome . It is such a touching piece. Allow me to share it with you. May you be inspired as I was.

I am very thankful to have found this in another parent's website. I feel exactly the same way as Emily and I hope that this entry could somehow help you guys understand, and maybe empathize, with what parents like us are going through. I can honestly say it is a privilege to be entrusted by God with someone as special as my son. It has been a wonderful journey for our family and we'll keep on finding ways to look at the positive sides as we continue to have fun with our James :)  == Welcome To Holland By Emily Perl Kingsley 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 wonderful plans. The coliseum, Michelangelo's David. The gondolas of Venice. Yo...

Hi everyone! This site is created to chronicle the life of Gideon James Floresca , born a preemie on September 18, 1997. He has been diagnosed with global psychomotor delay and has the spastic quadriplegic type of cerebral palsy .  Look how small James was when he was born!  He has been "eating" via a feeding tube since he was five due to failure to thrive. From an NGT (naso-gastric tube) that we used for more than 3 years, he underwent surgery in 2005 so a gastrostomy tube can be placed directly in his tummy. In March 2008, we were able to afford a Bard button which made feeding him so much easier. He's currently 100% tube-fed with complete food formula. James at 4 months old It is our hope that his story will serve to inspire and encourage even families with "normal" children. Join us in our continuous journey of hope :)