Hemophilia Awareness All Year Long

March is Hemophilia awareness month, which is great helping people focus on a still little known genetic condition that changes the world of so many people.  Yet why stop at March?  Ever since Dwight was born, Dana and I have made it our goal to educate people one by one wherever we met.  Today I am not traveling around the USA with my minister husband, who is now disabled, so my contacts are more limited.  Yet I still share info about hemophilia and my son with my book club and all the home health workers we come in touch with.  Why?  Because the more people are aware of hemophilia the more focus will be brought for research and the greater quality of life to those who have to deal with hemophilia on a daily basis.  Although there have be great strides since my father's day, there still is so much more that can be done.  Unfortunately, because hemophilia still remains a rare genetic condition there is a constant struggle for grant dollars and research- not to mention pressure needed on the few pharmaceutical companies that have held a tight control for so many years causing shortages and outrageous prices to open up the market place for the manufacturing of more factor my son and thousands of others depend on to survive and live a normal life.

 

The other month Dwight, Tigg (a blood brother, who also has severe hemophilia), and a neighbor fellow went camping overnight and then 4-wheeling the next day.  Even though there was delays getting all the 4-wheelers running- what Dwight is doing here in the above picture- they didn't give up and with their laid back personalities after years of waiting in hospital rooms, doctor offices, and clinics along with endless days of having to lie around due to internal bleeds, they finally took off for the woods. It was a beautiful day as they explored the old railroad track deep in the Big South Fork.

While some might pity these guys, who often travel in the slower lane of life due to circumstances beyond their control, instead of feeling sorry for themselves and sitting around doing nothing they are busy living their life to the fullest setting an example that the rest of us would be smart to follow.

Longer Life Span

I read in a medical magazine recently that the hemophilia lifespan is now close to the normal average.
It really made my day because thirty-one years ago when my son, Dwight, was born the lifespan for those with hemophilia was only in the late thirties to early forties.  What amazing news!

Even though Dwight's ankles are very painful when walking from so many internal bleeds as he was growing up and he is needing surgery to fuse them both- one ankle Dwight is walking bone on bone- yet overall compared to my father and the previous generation Dwight is doing great health wise. We have so much to be thankful for.

Although Dwight has had to slow down a lot in the last six months it has enabled his creative side to come to the forefront giving him something to be proud of- beside housework :)  Here are a couple samples of his craftsmanship that Dwight personalizes and sells:

2015

 

Dwight is still staying busy working at the body shop ...,

 

watching and keeping up with Case at our home every 

other weekend..,

 

and spending more time making special memories with Kara and her two kids.

2014

The year 2014 has already passed by for Dwight, who still works at a local body shop, and factors weekly to keep his bleeds under control. 
It was another year getting older..,

 having and being with Case every other weekend..,

then finding a special girl..,

and now making memories with Kara! 

Dwight at Christmas time

 Ho, Ho, Ho!  Here comes Santa's helper.

First we have to get the tree up..,

then get everything plugged in and make sure all the lights work.

Now where did that end go???

There I finally got it.

 

And at last all the work is rewarded with Christmas gifts.

Winter

Christmas time with Case and William.

Helping Case assemble one of his Christmas presents,

and getting to be with Case every other weekend.

Summer Time

Summer time means lots of outdoor activities like mowing the lawn with the help of Case.

 

 

It also means vacation time and traveling. 

For Dwight, he took a trip up to Indiana this summer to be the best man in one of his friend's wedding.

I definitely became the mother hen when I discovered that Dwight's means of transportation was going to be his motorcycle.  It isn't that I don't trust my son, its all those other crazy drivers out there.

All too soon, early one morning, Dwight was packing up his motorcycle to leave.

  

Then he put on his helmet, sun glasses, and gloves.

The engine roared to life, Dwight hopped on..,

 

 and out the driveway he went.

Here is Dwight on his Honda CBR 900 RR that he drives to work each day..,

where he works as a janitor at the Byrdstown Elementary School forty minutes away from home.

Even though Dwight's motorcycle gets 50 miles to the gallon maintenance is a top priority.

Dwight with Case in the GMC pickup truck, which he uses to bring Case up to our house every other weekend.

And like all boys, Case loves trucks.  Here he is at the wheel imitating driving like Dwight.

This autumn we put Sandy to sleep after sixteen years of companionship and loyalty to our family. Sandy's entrance into our lives came at a crucial time for us when Dwight was having a major knee bleed that surgery didn't help. In fact it was Sandy and God that helped Dwight escape another knee surgery. Sandy from the start was always Dwight's dog.



Dwight also helped get the workshop roof covered after it was hit by lightning one hot summer weekend when Randy came up from Nashville to help along with Scotty, our next door neighbor.

Once again Dwight has been allowed to be with Case. What fun Case has playing with "his Dwight"...


on the floor...


and reading story books together.



Lots of love and hugs between Dwight and Case.

Birthday Celebrations

Springtime is when Dwight's birthday arrives. Not only is March Hemophilia Awareness Month, but it is also when Dwight gets another year older. What fun!

This year along to celebrate his "advancing years", Dwight drives a beat-up 1990 Ford Ranger pickup, as his main vehicle for transportation- a gift from his brother-in-law, who decided that it wasn't worth the money involved to get it up to power to pass inspection in Nashville. Dwight loves old vehicles, especially when they sound like a bomb getting ready to explode. The picture doesn't do all the dents and falling parts justice. You'd have to see it in person to appreciate its "finer points".

The weekend of Dwight's birthday was a busy one with riding his motorcycle with a friend in the morning, celebrating his birthday in the early afternoon, and then getting the truck loaded for an overnight camping trip.

Here Dwight is all geared up and ready to head out into the woods with another friend. It was a beautiful weekend to go camping. That evening as he bedded down, Dwight could see a sky full of stars between the trees through his tent roof; a perfect way to celebrate a birthday.

New Year New Beginnings

Dwight has settled back into his old room again getting organized once more between work days. Snow days give him a chance to work on his truck, do stuff out in the workshop, or discuss guy stuff like truck/car parts and camping with a fellow neighbor.


Over Christmas, Dwight spent several days out in Nashville with his sister and family. While running around with the guys checking out after Christmas sales, Dwight found a great deal on a 1950 Remenington semi-automatic 12 GA shotgun, which he bought. He went to a shooting range with Randy, his brother-in-law, visited Tigg one day (who also has hemophilia), and tried his hand at shooting clay pigeons. After ringing in the New Year in the big city, Dwight finally came back home to slower life on the mountain.

Shattered Dreams and Broken Promises

Two years ago Amanda came into Dwight's life bringing dreams to life, laughter, and happiness. Then only after being married a year and a couple of months, Amanda decided that she didn't love Dwight anymore: a month earlier Dwight had become Case's legal guardian. Before Dwight's clothes were out of the house, Amanda started living with Case's biological father, who only claimed Case as his son after being taken to court, didn't give any child support until the state stepped in, and had very little to do with Case. A week later, Amanda filed for divorce refusing to talk to her own family or the preacher, who married and counseled them. Amanda's decision was an unsuspected devastating shock to both sides of the family. How can one person, who gave so much joy, cause so much pain ripping a family unit apart?

The week before Thanksgiving we moved our son back home with us. It was a very emotional traumatic experience. Dwight has not only lost a wife, but an adorable little boy, who called him daddy. Dwight was the only father that Case had known taking care of him 24-7 even after holding down a job.

So now our son must pick up the pieces of his life, work through the pain of broken promises and shattered dreams, and adjust to being a single adult again. Even knowing that he gave his marriage and fatherhood every bit of himself and tried his best to make it work- Amanda admitting that it wasn't anything that he had done- still doesn't prevent his self esteem from taking a bitter blow. Thankfully Dwight is surrounded by close family members on both sides and scores of friends, who are supporting him during this major transition in his life.