Sunday, August 04, 2019


I started this blog in July of 2005, when blogs were popular and my special daughter, Whitney, was young and going through so much. My wife and I felt so alone as we cared for her many needs and struggled to understand what the future would bring us. I often wrote posts as a form of therapy for myself to aid in processing what I was going through. But I discovered that along, the way, others whose children were diagnosed with a 1p36 Deletion or even other medical issues, also found help in what I had shared.

Five years ago, blogs were on their way out, as social media began to take over as the dominant way of sharing online. At that same time, I found that life with Whitney was becoming more of a normal, everyday routine. In fact, I found that I really couldn’t remember life being any other way. So I stopped posting. But I left everything online as a resource for anyone who might need it.

This past weekend we attended the annual conference for families affected by 1p36 Deletion Syndrome. It was a wonderful experience. We spent time with families who completely understood our journey. Many were old friends we’ve now known for years. Others were brand new. We loved talking with them and sharing how wonderful it has been to discover the many things that Whitney can do. Things the doctors told us that Whit would never do. Several new families surprised me by saying this blog is still one of the first search results for 1p36 Deletion Syndrome. And they wondered how Whitney is doing now. So maybe it’s time for a short update.

The little girl I used to write about has now become a young woman. She is 15 years old and will start high school this fall. Whitney has been blessed with very good health considering the genetic info she’s missing. She doesn’t have any more seizures. Her strength and muscle tone aren’t too bad. She walks and runs and even dances. Just maybe not in quite the same way I’d envisioned before her diagnosis. She still has some moderate hearing loss but that doesn’t stop her from loving music. She goes to choir at school with the typical kids and loves singing along in her own way. She doesn’t quite form the words and she doesn’t quite carry the tune, but it’s still great singing to us.

For so many years, feeding, growth and weight gain were a battle we fought. These days, Whit is a picky eater, but she does eat well when she chooses to. And she’ll even raid the fridge and pantry to eat something when she feels like it. Just like a typical teen. Just yesterday we caught her at the kitchen table with a salad she’d put together herself with lettuce and ranch dressing she got from the fridge. And she consumes more potato chips than anyone else in the house! Whit’s growth curve is well below what a typical child’s would be, but she’s healthy and didn’t ever need a G-tube or other feeding device.

Whitney loves to participate in activities with other teens her age at the church we attend. She knows the girls and interacts with them in her own Whitney way. She has a small toy horse and a small toy tiger that she often takes to activities and invites the girls to pet. It’s kind of a Whitney greeting and the kids are all good about petting the horse or the tiger.

Whit also loves camping and being in the outdoors. She signs for camping and we try to get out a couple times a year. She also loves going for walks. Her strength and ability to walk has improved significantly since a surgery to straighten her left leg last spring. When we see a dog out for a walk, Whitney is hard to keep up with as she runs to pet it.

We are working to find ways to make her life as fulfilling as possible. We’re not great at it yet, but we try to let Whitney make as many choices as possible. This might be with regard to what she wears or eats. Other times it has to do with activities she participates in. She ended up in choir because she asked to be there when it was time for school registration. We discovered that Whitney loves carousels, ferris wheels and roller coasters. She asked to go on a bunch of them as we vacationed in California earlier this summer. She likes to pick which animal she’s going to ride. And sometimes she picks a roller coaster so wild we have to help hold her head up on the turns. But she loves that tickle in her stomach the rides give her and she always laughs afterward.

I love seeing the person she is becoming. We celebrate the victories she wins more than with our other children because they hard-fought. But there have been a lot of them! And for that I’m grateful.

I’m also grateful to be a part of a group of peers who understand the road that my family is walking. The non-profit organization 1p36 Deletion Support & Awareness has done so much to connect us with other families and great information. I can’t say thank you enough to those who serve in that organization and those who participate in the connected Facebook group. If your child has some other struggle, I encourage you to find a similar place to share with others. It helps so much to interact with people who understand.

And so, my friends, if you’ve discovered this old blog because your child has recently been diagnosed with something that seems like it might just bring your world crashing down, please don’t forget, that there will be good times too. So many good times. Raising a special needs child is a roller coaster ride of its own. With higher highs and lower lows than almost any other ride you could experience in life. And I wouldn’t trade that ride for anything! Keep putting one foot in front of the other and before you realize it, you’ll be able to look back and celebrate all of the wonderful things you and your special child have accomplished together.


Genevieve Ross said...

loved your comments, and hearing how Whitney is doing; Your blog was the first we saw and it gave us hope. Whitney and Zoe have had different trajectories but they are both amazing girls who grab life by the horns and run with it, living life to the fullest in their own unique ways Hard to believe how old our kids are getting- Zoe turns thirteen this year and is now in grade seven. She too loves chior and singing. Miss you guys and hope everyone is doing well. Love from Canada, Gavin

Nate said...

Hey Gavin! So great to hear from you! Our girls have grown up so much. I read about your amazing cruise. Glad you got to get away and enjoy some time as a family. Please pass along our love you your whole family. We miss seeing you guys. Maybe we'll be able to meet up again at a conference someday.