"She's just like me!"

One of the closest relationships my wife and I have forged with other “1p36ers” is with a family nearby in Idaho. They also have a little girl with a 1p36 deletion whose name is Taylor. Taylor’s mom and my wife have talked on the phone periodically for a long time. Last week little Taylor had a bunch of her annual checkups at the local children’s hospital here in Salt Lake. So she, her mom and her older brother came to stay with us. It was the first time we’d had the chance to meet them in person. It was a real joy.

I can honestly say it was one of the most fun visits my family has had in a long time. Little Taylor and my daughter, Whitney, have so much in common. They are only about six months apart in age, and they are very close developmentally. So for three days last week, Taylor and Whitney happily played with toys together, swung on the backyard swings, watched Signing Time, and crawled around the house together. Whitney loved to have someone just like her around the house.

In the pictures you can see that these two little girls could easily be sisters. They look a lot the same and they even laugh the same. Those little ones even traded walkers and walked around the house a bit. (Something that belongs to someone else is always more fun, after all.)

The visit was also very good for my wife and me. We have had so much in common with Taylor and her Mom over the last few years. It felt good to share about our struggles and challenges and know that we all understood those same frustrations. Taylor’s mom also shared some great ideas with us. Taylor is bigger and stronger than Whitney and has also mastered the use of the spoon. So we’ve got some new things to work on for the coming months. If only we could get Whitney to drink Pediasure! But maybe we’ll try that again. That seems to be the secret to Taylor’s “more typical” weight.

My wife and I have also got to put together a great signing book like Taylor's. She has a little book with pictures of her making all the signs she knows along with an explanation next to it. Great idea for baby sitters and non-ASL family members.

Friday after all the tests were done, and Taylor’s family was headed home, we all went to play in the fountain at a local shopping area. The girls had so much fun playing in the water. That’s yet another thing these special little kids share. Whitney played in the splashing water until she was freezing cold but still didn’t want to leave. Next time we’ll have to find a heated fountain to play in!

So we’ve had another great experience with 1p36 friends and it has cemented our desire to attend the 1p36 Conference coming up in November. There really is strength in numbers. It feels so good to spend time with others who understand the things you face as you raise a special little child. We look forward to swapping more stories and experiences with everyone who can make it to the get together in Jacksonville. Nobody who takes on this task should ever feel alone.