Gideon James' Journey

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

This is a great read that is perfect for reflecting for this coming Holy Week . My co-egroup member Julie gave me permission to share her story. Please prepare some tissues for some happy tears :) ==== Unexpected Blessing  By: Julie J. Hunter  His name was Aaron , and I will never forget him. I was 16 years old and trying to hold down two jobs and finish my high school education. I babysat after school and on the weekends. My new job was an unbelievable opportunity. I was going to be the Easter Bunny at my local mall. Yes, you just read the words; I was the Easter Bunny. This opportunity was one of the most interesting jobs that I have ever had in my life. I mean, think about it I was being paid to "bounce"around the mall in a 7-foot fur covered rabbit suit, bringing smiles and giggles to children and adults of every age. Little did I realize that this job, this moment in my youth, would be one of the most rewarding of my life.  photo borrowed from costum

Two weekends ago, we were invited to my brother-in-law's birthday at their home. All the kids were excited to go swimming because the past few weeks since mid-February had been very, very hot.  While his brothers immediately plunged in the pool, we placed James ' stroller near it and let him watch first while we finish his tube-feeding session. (His feeding bag and pump were strapped inside the backpack behind the stroller). See how excited our little boy is!

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

Here's James, getting used to sitting upright by himself. With the help of the ChildRite Seat , here's praying that his neck and trunk muscles would soon be strong enough to support independent sitting.