a rare genetic condition that took us 21 years to find the correct diagnosis - 17Q 21.34 Microdeletion syndrome with FG syndrome. This means he is missing 2 genes. A large portion of the brain, the corpus callosum, never formed before birth.

If you could meet him you would think he is more like a 4 year old boy, who eats like a 2 year old, who laughs at burps like a typical teenage boy, who shuffles along like an 80 year old blind man, and who sings like a angel from heaven.

Every system of his body is affected by this. He sleeps very little and repeats the same questions hundreds of times every day. He suffers greatly from anxiety, and stutters terribly. He has a moderate level of mental retardation. He has the most forgiving heart and has never in his life done anything to hurt anyone else's feelings.

There is not one skill of daily living that Ben can take care of by himself, yet he understands more about life than most people ever will. He learned to talk by using phrases of songs to express his thoughts and feelings. He loves Kermit the frog, Elmo, the Beatles, Raffi, Shrek, and Mary Poppins. The theme song of his life has been, It's a Small World. He loves to perform for large audiences of people. If you could hear him sing "Amazing Grace" it would bring tears to your eyes. He is quite a mixture of unbelievable gifts and challenges.

Ben fell on our wood floor last May and broke three vertebrae in his back, and this year has been really rough for him. This year is the first we have seen more regression than progression.

As we were putting the candles on his birthday cake, I kept thinking with the placement of each candle how challenging that year of his life has been. He has had so many surgeries I can no longer count them. When our friends spent their vacations on fun trips, we spent ours traveling to see specialists or having surgeries in far away cities, or going to therapy camps. I can't tell you how many hospitals we can navigate through, and how many stacks of forms I've filled out, and how many hours of therapies we have done. Our fun vacations have been wish trips. We have met some incredible people through the years, and now, if feels like someone is missing when we meet a family that doesn't have a child with special needs.

I retired early from teaching to stay home to take care of him, after school services were completed. I am so very thankful I was able to do this. Taking care of him is a challenge, so getting uninterrupted time to sew is almost impossible.Yet having Ben has been one of the greatest joys of my life.

I have an incredible husband, two grown children and five grandchildren; and I have Ben. Today Ben turned 23 and my life is incredibly blessed.

When I retired I bought a new to me/used sewing and embroidery machine to have something to do in my spare time - LOL. Cuties has been a wonderful place to come, not just for the designs, and sewing and embroidery advice, but most of all for the true compassion and support for each other, from other people who also happen to love sewing and embroidery. I just wanted to share that with you all because it is such a huge part of who I am, and to Thank you for helping me through some difficult days and sleepless nights.

Jan aka hightechgrammy aka grammycats