A Christmas Message - Family Voices of North Dakota.

Greetings everyone as we enter this Christmas season. Isn't life glorious?

I decided to do something a little different this season for my Christmas post. In actuality, I don't recall doing anything last year, so let's call it a new tradition for A Father of Many.

You see, about 2 and a half years ago, I had the opportunity to participate in this seminar called “Parent Leadership Institute”. This seminar brought 23 participants to the small but wonderful town of Edgeley, North Dakota. The organization is called Family Voices of North Dakota. In what has become an annual event, leaders from across the country present leadership topics and training sessions on a wide variety of topics. Topics such as giving testimony to leaders and policy makers, sharing your story, learning what you know, and how to find what you don't know, as well as many other topics. The staff from Family Voices help mold the next generation of parent leaders through example and by showing a selfless sense of service to others. If they aren't a model, or Servant Leadership, then maybe the model needs to be redesigned.

Why is this significant?

Through the Parent Leadership Institute, the organization works to train parent leaders as stewards to help other parents in similar situations with their children. Situations can be a bad word depending on your perspective, but in this instance, it is a good word. Many families across the state of North Dakota are experiencing what can only be called extraordinary health issues, especially in regards to children.

The organization helps families by providing guidance on where to go for help. Who to call for help. Through a largely volunteer organization, staffed by regional part time hard working parents, and one executive director who is something of a spark plug, this organization provides support on an as needed basis. While working with diverse populations, including those who live on the Native American Reservations in our state, they work with federal, state and local agencies to get the families the support they need. And they do it on a shoe string budget.

Couple all of this energy with a volunteer board of directors, and you have an organization that puts the heart in the Family Voices of North Dakota logo. In our state nearly every city is located on a crossroad. It is fitting that the organization would take as their motto, “Navigating Crossroads to Hope”. In part because of the hard work of the staff, volunteers and their director, they provide hope to families from all walks of life.

Please join me in saying Thank You to Donene and the staff at Family Voices of North Dakota. One day, your family may need the hope that they can help you find. Sometimes all it takes to make a difference are comforting voices of friendly people.

If you are of a mind, and would like more information about the good work that this organization does, please do not hesitate to contact me. I would be happy to answer your questions. To be honest, it would be me giving back to the community for all that the Family Voices of North Dakota staff have done for me and my family.

On the same hand, if you have a child with Autism or a TBI that has been recently diagnosed, let me know, I have some experience being a parent of a child with Autism and another child with a TBI. I can offer some advice and guidance on where to get started on your quest for information.

Remember, your child's special health care needs don't have to be just physical or mental, they can be any combination of the two, or one of the two. All that is required of you is a phone call, and a few minutes of your time. Please, take a few minutes and make that call today. They can help you. Even if it is only because someone listened to you and your concerns for your child. Donene and a client did get the opportunity recently to participate in some events at the national level in Washington D.C. You can find more information about these gentle people on their website. http://www.fvnd.org

Now, I also have a motive to writing this entry. Our friends at Swanson Vitamins are giving a thousand dollars to the organization of my choice if I am lucky enough to win. You can find information about this contest on their site. Just click on the badge.

The joys of....

Got to see our son yesterday for a bit.  For those of you that don't know, he is in a residential facility in the city about an hour and a half from our home.  We played Pictionary using random words that we drew out of a bag.  It was so much fun.

I had to explain to him why I was using a walker instead of my canes.  He was concerned about me.  When it came time for us to leave, he held my walker steady so it wouldn't move and tried to help me get up out of the couch.  I have bad knees, so this is a challenge.

I do so hope that he can come home with the level of success that he has attained in there.  He will hopefully be home by Christmas.  We have two home visits on the radar between now and then so we will see.  I am a realist, I know that he can't be perfect, and quite frankly I don't expect that.  If he could be even half as good as he is now, that would be a huge improvement over last school year.

I asked him if he was willing to try going back to school in our home town, where we had so many issues with the school, and he said yes.  I promise that I won't let them mess him up like they did last year. He doesn't deserve that.

it's been a while...

It has been over a month since I posted an update.  So much has happened.

Marc continues to do well in his placement.  There have been a few incidents of violence, but nothing so major that law enforcement had to get involved.  Started with family therapy sessions as well. 

The big thing that happened is that I spent 6 days in the hospital. I had been sick off and on since Christmas 2010. First I had the heart event, then I had the TIA's.  well after the Fourth of July, I was feeling really run down.  My wife took me to the hospital for a check up.  During the drive down, my chest lit up with a pain I can't describe.  It went down my left arm and ended in my fingers.  I never again want to feel that kind of pain.  What was it?  No idea.  Seriously.  According to all of the tests, I did not have a heart attack. 

Yet something was wrong.  While I was in the hospital they would frequently wake me up and give me nitro-glycerin and morphene.  I couldn't walk without assistance.  I was shaky, alternating between very hot and cold.  I was miserable.

They performed a number of tests, as they thought that maybe I had experienced another stroke.  No, the MRI showed normal.  They did a CAT scan of my chest.  Output is 30% of normal through the left ventricle.  More tests.  They did a stress test, during which my blood pressure dropped to 80/62.  They did an ultrasound of the heart, and determined that my left ventricle is enlarged. 

During the six days, I had three different doctors, and two nurse practitioners.  Most were honest enough to say "we have no idea what is wrong with you." 

One doctor, who my wife affectionately nicknamed Dr Moron went so far as to order a psychiatrict consult because it was "all in my head."   At one point, he was ready to discharge me.  The nurse practitioner, my wife and the nurse on the floor all disagreed with that.  Then he said that "it must be a problem with your colon."

In the end, my wife flat out refused to take me home until we were allowed to see my reumotologist, who treats my Lupus.  Bright and early the next day, when she doesn't normally see patients I was wheeled into her office.  We tested to see if it was the Lupus.  No, the Lupus isn't active.  She reviewed the chart, asked me a lot of questions and then diagnosed me with Fibromyalgia.  Plus I have an enlarged left ventricle in my heart, and weak adrenal glands due to long term prednisone use.

In the end, I am something of an anomaly in that most of the people who get Lupus and Fibromyalgia are women between the ages of 30 and 50.  It is unusual to have either one of these two illnesses, let alone both of them. 

So now, I am trying to get better.  I am learning what my new limits are, and working on a disability application.  I am seriously sensitive to light, and feel like a lazy man because all I do is sit in a dark room and rest 90% of the time. 

Marc is due to come home around Christmas, and I find myself fearing how my body will react to the stress of his being back home. 

Psych! redux

Meet with the psychologist tomorrow, barring travel problems... Hopefully can get T back on track. He had a really good Christmas concert this evening. However, we have determined that it is time to give up the band. He gave it his all. And that was all we asked of him. Considering the Autism, he did fairly well for a year and half with it.