Eleven

In three days we will be celebrating Ben's 11th birthday. We are all very excited because we will be on River Street Saturday while I work Oktoberfest on the River. The event couldn't happen at a better place given so many folks down there have become like family to me. Kenny Hill, his partner Butch, their son Landy, Kenny's co-director Erin, and way too many artists to list here have made my visits to Savannah, Georgia so very special.

In addition to the family adventure the weather is supposed to cooperate with lower humidity than usual along with temperatures in the mid to high 70s. Ben thrives in those kind of conditions so we are planning to let him paint at the booth! If everything goes well we should return with lots of pictures, images, and stories.

In regards to our personal situation which includes several needed household repairs and modifications due mainly to Ben's growth I can report even better news. At this time we feel it is a little too early to give many details but our cry for help has been heard. We are so very grateful for friends, friends, of friends, and just plain good-hearted folks who have offered their love toward our family. For those of you behind the scenes (and you know who you are) we cannot ever thank you enough. For the most part all of you know the unconditional love Ben naturally exudes - we hope that his smiles and laughter are enough to sustain you.

Once things are in place I/we want to document what is getting ready to take place. I think this will be something important (recording/interviews/etc) as our family moves forward so that we can bring a little bit of hope to other families in similar circumstances. This is something I can personally put together but I don't have terrific expertise in doing so. Should you be interested in helping with this part of the story then please get in touch with me at benwaddell@bellsouth.net.

We look forward to bringing you more news about Ben's Eleventh Birthday very soon!

Segev

While stewing over my own situation and spending too much time mulling over the garbage that has accumulated within my psyche recently I have forgotten what a great thing this Blogosphere has become. I have known it an avenue for much emotional support, a means of commerce, and needed form of interaction as Joan and I have become more and more isolated from the typical world. As per the usual aftermath of the experience, once I stop feeling sorry for myself long enough to take a deep breath a new discovery or more specifically a new encounter breathes fresh air into my weary soul. Very often that wisp of encouragement comes from the words found at one of those links in the left-hand column.

Within a few days two milestones will pass. A day after Ben's eleventh birthday this blog will reach its fourth anniversary. I look back upon those four trips around the sun and think about the families I have met. Folks have allowed me (literally at times) into their homes, their stories, their passions, their blessings, and of course their sorrows. At the same time those same folks have hopefully gained an occasional smile from gazing at Ben's infectious toothy grin or have learned about the hardships exceptional families endure or more importantly, have experienced a little bit of that unconditional love that we hold so dearly in our arms each day.

This past week I have "met" another father that may indeed be more tenacious than I in the care and well-being for his son. In something that is very common for those of us who write blogs, Eric left a comment after one of my entries. And like most of you I found this an opportunity to scamper off and invite myself to read the pages of Eric's blog, the chronicles of his personal journey. For some reason I consider this to be some sort of cosmic gift to commemorate the two upcoming dates.

The past few days I have made myself familiar with Eric's story and his obvious deep love for his son, Segev. I would highly encourage our regular readers to become followers of them as well. In the world of special needs parenting it is quite impossible to determine which family has the more difficult job of caring for their loved one - it is never an "apples to apples" comparison. But I do find Eric to be unusually courageous, a deep thinker, and a terrific writer. I found this post particularly inspirational and a good place to start. I plan to return to it often.

By the way, I chose the particular photo of Segev because Ben has the same version of Pluto which he is quite fond of. My hope is that Eric and I get to meet one day, break bread together, and share wonderful stories about our sons' good health.

Cat's Cradle

A little over a week ago I made this entry here. The article also appeared as my monthly column over at Hopeful Parents, a gathering place for those of us parenting under special circumstances and those that love and support us.

From the beginning I realized that I had touched upon a tender and most likely a very painful subject due to two e-mails I received almost immediately after the post went live. What was weird is that there were virtually zero comments left by readers at the two websites. Even after my Facebook page picked up the article (not once but actually three times) there was absolutely nothing left in response...until the following arrived in my private messages. 

Cat McCauley Labbe is a friend of mine from a few years back. In fact other than rekindling our friendship via Facebook we havne't laid eyes on each other since high school. Over the past year or so we have discovered many things about each other including the fact that we have (and still do) walk an almost identical path. After reading her thoughts I knew why there was so much silence.

I just read your beautiful post, Bennie, very heartfelt, and very true, as we have lived it firsthand. The only tidbit of knowledge I can add for you, and it is a tidbit...is that there is indeed a summit on Mt. Neverest. Everyone's is different, a different time and place on the climb, but trust me fully when I tell you that when you lay down your equipment, when the climb has gone as far as it can go, you will look back on the journey of a lifetime; one that very few familes are chosen to ever get to take.

Would you go if you knew what was ahead? Hell no! You'd be insane! You go because you are called and someone upstairs knows you can manage the climb. I hope you and Joan never have to lay down your equipment but even without the early loss of a special child, inevitably, the two of you will get older and unable to do as much as you do for Ben right now. So either way the journey will come to an end one day.

When it does, in spite of the heartbreak, crazy grief, helpless feelings, angry feelings....and they will all be there, you will also feel a since of accomplishment that no other life experience can or ever will give you. You will know that you did all you could do to make this very special life that Jesus Christ chose you and your wife to guide, protect, love, and nurture, has had a joyfull journey filled with unconditional love and acceptance. You will wonder what to do with yourselves and this was the point that we almost lost our 26 year marriage. What do we do now? We were lost.

After much prayer and contemplation and feeling like a failure, I realized that we had not failed at all. We took the climb. We gave it our all. We fell. We got hurt. We got banged up but we kept getting back up and going forward on the next leg of the hike. When you have fulfilled God's destiny for you to the best of your ability, and have accepted God's will for your precious child (whatever that may be) you will look back and know that you did indeed reach the summit - one that very few ever get to see because only a few are called by Him to see it. Those of us who have been called, are the luckiest parents in the world.

We spent ten years as virtual shut-ins too but the life lessons, the strength in adversity, the laughter, and the love that Eli graced us with for 16 years turned out to be the ultimate summit in life. Looking back on it now, I'd climb down and do it all over again. 

My advice? Accept help - don't be ashamed to ask for help...after all, you can't expect to hog the whole blessing! I haven't seen you in years, but I LOVE YOU, and I mean that. I feel every word you write to the marrow of my bones. Ben's smile reminds me so much of Elijah. Eight years ago I would have sobbed seeing his picture. Now I am able to smile with him because I know that with a strong family, which he obviously has in abundance, his story will have a happy ending no matter what God intends that to be.

And Meanwhile Ben Continues to Paint

This is called "Angel Fish." I started to work on this one (I count 5 strokes of my own) but Joan told me to let it go. After spending more time looking at it I now understand why. This is a 6" x 8" canvas panel.

SOLD

This is another family favorite. In the past I would've added my own interpretation. Once again we saw the obvious - a potted plant with flowers. Ben loves flowers! If you view the purple area as the "pot" then you will see it. This is an 8" x 10" canvas panel.

SOLD

"Lion-Heart" is an 8" x 10" canvas panel of Ben's. He had been watching several DVDs of lions along with jungle life before working on this. So...is there any question that my son is cognitive in regards to his surroundings? Once again $45 is the suggested price.

As always e-mail us at benwaddell@bellsouth.net if you want to purchase one!

Under Pressure

Yesterday brought attention to a new issue in regards to health. For the first time in a very long time it has nothing to do with Ben. In our world that is awesome news. On a personal level it sucks.

Two days ago I began to experience heart palpitations, a slight headache, sensitivity to sunlight, and some very unusual pressure around my neck and shoulders. Because I've had anxiety issues before I just figured this was a mild reaction to stress - a miniature panic attack. It really wasn't much of a concern until early yesterday afternoon when it began to feel like my head my just pop off my shoulders at any moment.
 
I have no idea how or why I knew that my blood pressure was elevated - I just did. After consulting with Joan I decided to visit the local pharmacy and see exactly how hard my heart was working at the moment. By the way, given that we have what many consider to be a medically fragile child our house contains no less than four different oxygen tanks, a Pulse/O2 monitor, a concentrator/compressor set up that "squeezes" oxygen out of ordinary room air for when Ben is sick, an apnea monitor, two stethoscopes, a nebulizer machine, and other various accouterments for gauging and measuring our sons health yet we did not own until today a blood pressure cuff!

After slipping into the wooden chair and sliding my arm into the cuff I pushed the start button. This would be the first of about three dozen times over the next 4 or 5 hours that my upper left arm would feel like a mouse in a hungry python's cage. Today my arm feels like it could be used for one of those Fruit Roll-Up commercials.

That first reading of 157 over 104 didn't look too good. In fact the chart sitting in front of me told me that I was somewhere around Stage 2 of Hypertension. At this point I decided to sign in at the CVS Minute Clinic to see what a nurse practitioner would suggest I do now. After a couple of more readings it was difficult to determine if she was concerned or actually impressed. I do know that one's blood pressure is very much like golf in that lower is better. Par is 120 over 80. Perhaps she's a basketball fan? Two more checks gave us scores of 169/99 and 160/99. All joking aside the very nice nurse (who called to check on my today) told me to go immediately to a doctor. She actually scared the hell out of me when she suggested I might need a "transport" (EMS, ambulance, a firetruck would've been cooler).

Since I was only about a mile from home and I had no chest pains (then) I got to drive home so that Joan could cart me to the hospital about 3 minutes from our home. Because Ben's nurse had to check out once I arrived at the house he took the trip with us. Long story short, he was incredibly entertained that Dad was now the guinea pig and not him. I could've done without the laughing and smiling except it was my kid who has dealt with far more shit that me under medical care. Three hours later I was at home.

My blood pressure continued to rise throughout the afternoon and even with an IV beta blocker (Lopressor) my BP didn't return to normal. After a visit to my personal physician today I am now on a daily drug regimen along with changing my diet and beginning a more regular exercise routine. Even with the chest pains I experienced this morning I got the green light to travel to my show this weekend.

Despite the humor of the situation it truly did scare me. I am 48 years old. My dad passed away when he was 51 most likely from stress related issues. This has been a tremendous fear of mine since he died and particularly after we had Ben - to leave Joan with the care of our kids should I die unexpectedly is not acceptable so some life-changing disciplines are about to begin.

I am a thankful husband, father, son, and brother today. And I will remember this feeling for a long time...

Climbing Everest with a Boat Anchor II

This is a reprint of my monthly column at Hopeful Parents last week.

Labor Day 2010 and a day off from work for my wife, we sat on our butts all afternoon watching a Discovery Channel series on TV. It was an incredibly beautiful bright sunny day with temperatures about 10 degrees cooler than normal (a wonderful break this time of year for those of us living in the Deep South); a perfect afternoon to hike, bike, picnic, swim, stroll, or cookout on a national holiday. Yet my wife and I lounged on the sofa with our son immersed in a story about a group of adventurers attempting to scale the highest peak in the world. There’s a reason I’m confessing this but I’ll get to that momentarily.

Several years ago I got the opportunity to see the legendary comedian Gallagher. He’s the short partially bald dude who has a penchant for smashing watermelons. Gallagher’s routine is always built around using a bunch of props - he always has this huge chest filled with all kinds of objects he uses as he tells jokes. The particular show I attended he discussed having kids. Looking out at the audience which included some young married couples he asked, “So any of you thinking about having kids?” The comedian turned around, reached down into the trunk, pulled out a rope and tied it around his waist. He then reached back into the container, picked another obviously heavy item, and threw it onto the floor. It was a boat anchor. “You want another kid after that?” Shortly afterward a second boat anchor lands on the stage.

The brilliant analogy really didn’t have its full impact upon me until the first time we carried our typical daughter to the mall. Jessie was just a few weeks old when mom and I began to get stir crazy. It was mid-winter so a little stroll around the block was out of the question. We got the bright idea to do the next best thing – take a stroll around the local indoor mall on a crappy winter Saturday. I can still remember how shot our nerves were after feeding and changing the diaper of a few-weeks-old baby while maneuvering a stroller carrying our child and other assorted accouterments around a crowded shopping arena. Due to that stressful experience I’m almost positive we didn’t carry Jessie out in public again until sometime around her second birthday.

Like everyone else I have a short list (actually it’s probably a little longer than most) of things I’d like to accomplish before I depart this life. Climbing to the top of Everest is not on it and never will be after watching the efforts of that 2006 expedition yesterday. Personally I’ve never considered or thought about the environment, conditions, dangers, and perils one might face to accomplish such a feat. Joan and I were absolutely blown away by the stories of those folks, some of whom paid tens of thousands of dollars to make an attempt at the summit. In the end only two (including the first double amputee) of the initial group of eleven made it to the top. Two of the group members had to abandon their climbs just a few hundred feet from their goal. On the final ascent the documentary showed several dead bodies of climbers who paid the ultimate price for the experience of standing atop Everest and in fact, the group encountered one dying climber from another expedition on their descent. All of the climbers returned home bearing scars and wounds from the adventure.

As much as we exceptional parents would like you to accept our kids into the world’s typical environment we are not so crazy to actually believe they are just like your kids. In fact we will go so far as to admit that we sure as hell would love for our children to be just like your child – healthy, whole, growing, learning, advancing, progressing toward a “normal” life. I mean really think about it for a moment…none of us wanted to be a part of this attempt to climb “Mount Neverest.” What sane set of parents sits around planning their pregnancy hoping for a broken baby who might be missing fingers, toes, teeth, bones, hair, brain matter, or the potential to remain a baby in an adult body?

There’s a huge difference between those climbers scaling Everest and those of us caring for an exceptional individual. Their expedition was not only desirable they were well-prepared for what they would most likely endure. Climbing Neverest is the complete opposite. In fact I’m not really certain Mount Neverest actually has a summit.

So what about those anchors we’re toting along as we battle frostbite and oxygen deprivation? That knowledge is the key in understanding the reason my wife and I sat on the couch yesterday watching a group of individuals nearly kill themselves trying to reach the top of the world. Gallagher ultimately fails to point out that those typical “anchors” eventually lighten up and completely dissipate in weight and density (at least most of the time). On the contrary exceptional “anchors” become larger – they actually become so heavy that at times they are impossible to move.

Earlier I described that first trip out of our home with Jessie. Looking back it really was a piece of cake particularly in contrast to Ben's first trip to the mall with wheelchair, oxygen tank, pulse/O2 monitor, feeding pump, and bag full of medical goodies in tow. For those politicians and appointed leaders who want to cut services for our special needs children, they should first be required to push an "ambulance" on a wheelchair around a crowded mall during Christmas season. And so on a beautiful late summer day it becomes easier to sit on the sofa watching television rather than make preparations and pack up the van just to carry Ben to the park.


So what’s my point? It can easily be summed up in one word: HELP! Special needs parents share yet another common thread. We cannot do this alone! For a long time (almost 11 years now) Joan and I thought otherwise. In recent weeks it has been made plainly clear that we had almost waited too long to ask others for aid. This was a very humbling and honestly humiliating discovery which nearly cost us our marriage but we were pleasantly surprised at how many of our friends, friends of friends, and in some cases complete strangers wanted to help. The problem? Most people don’t know how to help.

For the most part we've become something we swore we'd never become: shut-ins. We rarely go out and do things as a family any more. The dynamic of having a typical teenager and a soon-to-be special needs "tween" just makes the planning and/or physical challenge of a family outing exhausting. Other than a bit of shopping here and there the entire family spent exactly one evening out of the house this summer - an evening at our local minor league ball park.

Here's an idea. Churches and other non-profit organizations often tend to the needs of the elderly. Why not do the same for exceptional families? Some times all we need is just a helping hand. Most of the time we just need to discover that we still do actually have friends.

Climbing Everest with a Boat Anchor!

Okay, so now I have your attention having made a very strange entry title. Since this is the seventh of the month you can find what I'm talking about in my monthly column over at Hopeful Parents. If you haven't joined us yet at HP then please follow the links and sign up. It's easy, free, informative, and just downright fun! Plus there are some really cool things happening behind the scenes which you will find out about in the next few weeks!

Also be sure to come back tomorrow to see some of Ben's newest paintings!

Biting Bullets

For the most part we are doing better this week. The weekend brought many e-mails, phone calls, and private messages with ideas or just words of encouragement. Here are some random thoughts since my last entry...

• Many, many thank yous to anyone and everyone who tried to get in touch with us. I promise you that all of them were read including the one thoughtless and selfish comment that I should've completely ignored. If I didn't personally say thank you consider this one big hug in appreciation.
• The act of begging for help is an emotionally charged action that I would not wish upon anyone. If one is at the point of needing to ask for help you can bet that individual is already experiencing the absolute low of lows every way, shape, or form. In all honesty it was an exhausting weekend. Of course the spectrum of emotions was limited to those less desirable by most.
• Over a phone call with a dear friend I was able to exactly describe the panic that surfaced recently. We have lived for over a decade now trying to take things one day at a time, sometimes even just an hour at a time before even considering the next. At some point early in Ben's life we were told that he would be lucky to survive to the age of ten. Now that there is so much more information available about Pallister-Killian Syndrome we know that truly isn't the case. The fact that Ben not only survived those ten years but is for the most part thriving, it's dawned on us that we are ill prepared in caring for Ben as we near his teenage and adult years. Of course developing on-going back troubles is a constant reminder that our son isn't so different form others after all.
• There are some specific individuals that we REALLY want to thank who are currently going to bat for us and pulling strings, weight, and perhaps even the proverbial rabbit out of the hat. I hope to report soon on some positive things that might occur before the end of September. In the mean time Cher & Rick Austin, Billy & Lynn Dalton, Paul & Cheryl Swenson, SC State Senator Tom Davis and his staff - you all rock our world! You each deserve a big wet drooly kiss from Ben.
• One issue that we are addressing and hope to raise awareness within our state is the limitation on Medicaid provisions to help families adapt their homes for a lifelong stay. The difference in how Ben is medically provided for versus home/transportation needs is like night and day. That fact was acknowledged by some folks within two state agencies responsible for the care of citizens like Ben via correspondence shared with us the past two days. The surprising discovery is how sympathetic these folks are about our plight! It was refreshing to see how much they really want to help but are limited due to very outdated information.
• A suggestion from many of you was to apply for an Extreme Home Makeover via the television program. Joan actually looked into that a few years ago only to find out that there was a restriction that the home couldn't be on a major thoroughfare. We happen to live on a four-lane road with a median that is a main artery from Interstate 85 into the east side of Greenville, SC. Joan is actually going to revisit the website to see if that has changed. Regardless she plans on taking her Labor Day holiday to file a new application hoping they might make an exception.

That's pretty much it in a couple of bullets. I'm preparing for my trip to Savannah, Georgia this weekend by painting and packing. Ben started back to school today so it was rather lonely around here! I do miss that kid even if he's away just for a few hours. If anyone in the upstate of South Carolina have any friends with a pub or bar, my acoustic playing partner and I are ready to book some gigs. Meryl Hammet Cook and I have been practicing since the spring - we finally have enough material to do three sets easily (we're closing in on another set as well). Keep checking back for more news, hopefully the good variety.