Thursday, March 06, 2008


Doing That Thing We Do

In every life there comes a time when that dream you dream becomes that thing you do.


I had lunch today with a dear friend that I had not seen in many years. We ran into each other about a month ago at our local grocery store and were surprised to find out that we were practically neighbors. We were both in a bit of a hurry that evening so we promised to get together to catch up on each others lives. Instead of dropping the ball like I usually do when presented this kind of situation I kept her business card prominently upon my desk as a reminder to follow up for a change.

The story is too long to relate here but our friendship goes back to over twenty years ago. Obviously much has happened to each of us over that time so two hours passed in what seemed like 30 minutes. In particular telling Ben’s story really took some time and surprisingly I discovered that my friend had faced some pretty serious health issues right around the time Ben was born. She also shared with me some other serious heartbreaks she had experienced along the way.

Ironically just before leaving for lunch I was telling Nurse Stacey about meeting Derek’s family last weekend. It is a very odd thing but there is a sentiment almost universal among parents of exceptional children: please don’t think of us as super parents or special people or somehow going beyond the call of duty. We are ordinary parents facing extraordinary circumstances. If you are a parent with any sense of responsibility whatsoever you would’ve done the same thing as Joan and me, which is to do any and every thing possible to keep your child alive and help that child thrive as best he or she can.

Now before you think we’re not gracious or respectful of such comments, let me assure you that they are definitely appreciated. It’s just that it seems quite embarrassing at times and some type of response is difficult. Perhaps it is another reminder that our kids are somehow different which is not the case at all. There is no doubt that their health is compromised but that is also the situation of an asthmatic child. Our children want the same things as a normal child: love, acceptance, inclusion, and a life full of fun-filled activities.

There is one difference though that I’ve honestly been fearful of writing about which makes this the most difficult blog entry I’ve submitted. Every human’s days are numbered and only God knows when He will want one of His children home. I’m a very selfish individual in regards to my family and loved ones. I want to be surrounded by those that I love until it is my time to see what is waiting for me in the next life. Children with special needs are obviously “wired” different than “normal” kids. Joan and I have not only seen but know of several special children that have moved on to live with God. In my opinion that is probably why we shun that stigma of being exceptional parents.

This sounds like a sick confession but I’ve occasionally planned Ben’s funeral in my mind. I cannot wrap my mind around that thought completely but in my deepest of dreams and the deepest moments of considering our situation I have to acknowledge those thoughts. The part that never becomes clear is the part where I’m supposed to move on afterwards. My hope is that Ben long outlives Joan and I so that we have to prepare Jessie for how her brother is cared for.

Because my friend has faced death in the face she can easily relate to our situation. Each day is a gift. Each moment is important. Every relationship is an opportunity. Just like our lunch today, this life will pass us by before you know it. Make the best of it and enjoy it to it’s fullest!

6 comments:

creative-type dad said...

I like your outlook.


And if I lived each day to the fullest, I would be 400 pounds and full of ice cream.

Gretchen said...

Ditto the previous comment. I love ice cream.

All you say is true--we feel the same reluctance to accept compliments (although I never turn down the prayers!).

In many ways, I hope Simon doesn't live too long. I can imagine how his adult years may be harder on him and I would hate to see him shuffled around or being a burden. Rather he die at peace totally loved and adored. Is that terrible??

we_be_toys said...

This was beautifully stated! I can't say that I have jumped the same hurdles in life that you guys have, but like you said, a parent does what they have to do to keep their kids safe, warm and happy. In that we are exactly alike!

It does seem grisly at first, to plan a funeral for a child, but I can also see how you are trying (in your mind)to prepare yourself for the worst. That and what parent doesn't have a sleepless night occasionally, fretting about what may be?

Oh yeah - Carpe diem ya'll! I'm all about it!

kimmyk said...

that's great you got to see an old friend.

sometimes that can be fun. other times not. i'm glad you two had a good lunch.

life's crazy-it's good to be reminded to be grateful...thank you.

Lisa b said...

Thanks for this reminder Bennie.
I of course would be like Tony and weigh 300 pounds if I really took this advice, but you know once you have faced death nothing is ever the same. People who have not had the same brush really, really will never understand.

You know I cannot help wondering when I read your blog and some others how much our experience with the medical system colours our feelings about our children. You feel guilty for thinking about Ben's funeral, yet the children's hospital I am dealing with has information about this on their website.
I have been made to feel so stupid and guilty this year for keeping Julia alive, for making her sister have to shoulder this burden when we are gone.
twisted huh?

Kyla said...

Yeah. I always think anyone would do the right thing in the same situation, but honestly, it isn't always true. Some parents don't have that sense of unconditional love and responsibility, whether there kids are typical or not. I'm so thankful for those that do.