Shadows

“Fear has a large shadow, but he himself is small.” Ruth Gendler

This will be an incredibly difficult entry. I've actually known I would one day write it after I began blogging almost two years ago. In all honesty the subject of death is not a sexy blog topic. Smiles, laughter, family events, pictures taken on vacation, humorous adventures, and even sex itself will always top that list.

And honestly I'm not at all trying to be morbid. This is an education folks - for you and me. Essentially the next few paragraphs will be an explanation, an apology, and one of the deepest insights into living with an exceptional child.

All of us will one day face The Reaper. Death obviously is inevitable and ironically a part of life. almost all of us will make some kind of preparations for it by writing wills and purchasing insurance. It is the prudent thing to do particularly after offspring begin to occupy the household. What no one can prepare for is a child preceding the death of a parent.

The age of that child does not matter. A parent should always meet their maker before his or her son or daughter. That is the way things should be. But "should be" is much different than "reality." Reality is that life can be cruel and unjust through our somewhat tainted human vision and shallow understanding of the universe. As parents, all of us worry from time to time about our children. There are many things under our control that can protect them from danger: fastening a seatbelt, strapping on a bike helmet, even setting parental rules on their computer as they do as we all love to do - surfing the net.

But there are fates beyond our control. Illnesses, accidents, even natural disasters occur and as much as we'd like to step in their way and take the brutal outcome from them, it just can't be done. Unless you live in a bubble everyone of us has been touched, moved, saddened, or even threatened by the cruelest of tragedies.

There is one difference though between parents of "normal" kids and those like us - parents of a special needs child. And this is where the understanding part needs to be explained. Not one day has passed since Ben's birth that I have not wondered if this would be his last day on Earth. And every time I've opened up enough to reveal this to another exceptional parent I always get the same response, "me too."

The reason is that our children are just "wired" different. This is especially true for kids with neurological disorders - like Ben. We can see the wiring analogy at work each and every day. There are days that Ben's anatomy is clicking on all the cylinders he's been given. He responds to interaction like he is supposed to. He works hard in therapy to reach the goals set before him. he smiles, he laughs, he acts like an 8-year-old.

The very next day though the "switch" might be thrown. You can literally see him trying to make his brain work through the quagmire of short circuits that now intercept the signals trying to reach his hands, feet, legs - even his vision and hearing are occasionally interrupted. And it is at those moments that we pray really hard that the signal to his heart telling it to beat and the one to his lungs telling them to breath aren't turned off. And that does happen, my friends. We not only know of the stories, we've actually witnessed it during one of Ben's PICU visits.

Now before anyone decides to throw a pity party for us let me say, don't! This is just our way of life. In all honesty we're fairly used to this by now (I think). In fact it is truly a good thing because we put full face value on every day we have the pleasure of both our kids' company. Now...this is the apology - the portion that is both confession and a deeper look at why we've made the decision we have made...up until now.

Sorry but you'll have to come back tomorrow for the rest. I'm exhausted from writing this but I promise to finish it up later this evening and post it tomorrow.

Face 2 Face With Another PKS Family

I will never regret traveling to a disappointing art show Thanksgiving weekend 2007. As always I learned more about the business of selling art (like checking to make sure the most popular pop star isn't scheduled to play the venue where I'm working), I met even more talented artists and crafters who confirmed my opinion once again that we're one big family on the road, and for the first time I came face to face with another family whose youngest child has Pallister Killian Syndrome! My fellow blogging friends and readers meet the Bergquist family.

To be honest the meeting was not unexpected. Dawn Bergquist is the Board Chairperson of PKS Kids Network which is the not-so-new non-profit organization raising funds for and awareness about Pallister Killian Syndrome. Our families share a common thread in that our sons both have Tetrasomy 12p, the genetic mutation known as PKS.

Dawn and her husband Eric are both originally from the Greensboro area. A few months ago she sent me an e-mail telling me they would be returning home for the Thanksgiving holiday and would come by to see me. Their visit to the booth Friday morning thrilled me!

This was the very first time that someone from our family has met another PKS family, let alone another PKS child. Despite the fact that we had never met each other we had a true (and way too brief) reunion. It was as if we had shared family from many past generations. The art show disappeared behind them as I met Aiden and his sisters for the first time. Beforehand I was nervous knowing that I would be meeting them. That all was wiped away in an instant when we shared hugs, kisses, and wondrous tales of our families.

Just like Ben, Aiden is a very handsome young man! His smile and mannerisms are magnetic. He and Ben have so much in common they could and probably should be brothers. His sisters are so beautiful and mature for their ages just like Jessie. They doted and fawned all over him which their love for him so obvious! Too say the least I was completely blown away.

Aiden has a shunt and a repaired cleft pallet just like Ben. He was talking and full of energy despite the fact that others couldn't understand him. He had the same chubby cheeks and fatty little fingers! He is a very happy little boy and fully aware of the love that surrounds him.

One of the things that I found most interesting was that his favorite color is red, just like Ben! I asked Dawn about it and it is something we will revisit when we spend our vacation next June in Philadelphia with all of the other PKS Kids families.

Before they left we all posed for pictures. As often the case with Ben, as soon as the cameras came out Aiden "shut down." This was another common custom our sons share. They play "possum" once the cameras come out.

I missed them as soon as they said farewell. In fact it hurt to say goodbye and have to wait seven and a half months to see them again. The PKS Face2Face Conference is now written in pen on our calendar. Joan and I now know that our family needs to be there so that our son can meet Aiden, Simon, Jake, Lauren, and other children he can identify with. What a true blessing that made me a thankful father the day after Thanksgiving!

New Ben Video!


Ben has now confiscated Jessie's personal DVD player. We bought it for the kids to watch movies in the van on those rare occasions that Joan and the kids join me on the road. It turns out the the device fits perfectly on the tray attached to his wheelchair!

Ben also knows Dad will be leaving soon for Greensboro so I've made sure Ben will make his displeasure known to Mom about missing Thanksgiving with Dad. That and missing out on meeting another little boy with PKS! You read that right. Sometime Friday I will be meeting another family whose son has Pallister Killian Syndrome! I cannot wait to snuggle and love on Aiden. You can be sure there will be photos and video of the blessed event early next week.

In the meantime let Ben make you smile.