Lessons learned from my son


I learned a lot from my son in the 6 months that he was here with us.  I wanted to share with everyone the message I shared at his ceremony.  I know there are a lot of people out there who are supporting us and could not be at the service and so I wanted to share what I shared with those who did attend. Below is the opening message I shared.

 

I would like to thank all of you for being here today. We have been touched by all the overwhelming support we have received from all of you. Your support has been a vital part of our healing this week.

As we gather today, I know there will be tears shed; but we want them to be tears of joy and not sorrow. We want to celebrate the life of Aaron, by focusing on all the happy memories and the lessons he taught us.

Aaron is one of the strongest people I know despite only being here for six months. He valiantly fought through countless surgeries and procedures, and defied the odds on several occasions with his will to live, and he fought til his last breath.

But I don’t want to focus on his suffering, because he is no longer suffering.  I want to focus on all the happy memories. Like why we referred to him as baby hulk. Despite the nurses best efforts, he had an uncanny ability to work his arms free and try to pull out his cords and ventilation tubes.

Or how when watching the super bowl with him, he couldn’t make it past halftime as this grandmother looking person, I mean Madonna, sang him to sleep. Or how during the few weeks he was home, he would look at his sisters like they were the weirdest people in the world.

My two favorite memories involve sports and politics. His first taste of politics was watching one of the countless Republican debates. Whenever Rick Perry would talk he would cry, whenever Mitt Romney spoke he looked confused, but whenever Ron Paul spoke he would smile and laugh. I guess he was ready for the Ron Paul revolution.

If you know me well then you know I am a die-hard Kentucky basketball fan, despite living in dUKe country. I still have a very strong dislike for Christian Laettner and Duke Basketball, and it was with great pride that Aaron and I sported our Kentucky basketball gear at Duke University Hospital. I watched all but two games with Aaron this season, those were the games we lost. Aaron watched every Kentucky tournament game with me. Even when he was sleep, he would always wake up for game time. The only game he slept through was the National Championship game. I took that as his way of saying he need not leave his slumber because Big Blue Nation would be celebrating that night, and we did.

But the big things were the lessons I learned from him. His strength and will were uncanny for a baby. Through everything he never quit because he had a passion for life. We should all learn from this, I know I did. All he went through makes what I complain about seem like nothing. If he didn’t quit, then I shouldn’t either.  No more sorry excuses about exercise and getting in shape. All the books I say I will write, need to get written.

Most importantly though, my passion and desire to work for equal rights, justice, and opportunity for everyone has been enhanced. I want to fight with the same strength and will that Aaron used every day.

I hope you all will join me in celebrating the life and strength of Aaron, and make a commitment to living your life with the same strength, will, and passion for life as he did. That is the best way to honor him and keep him in our hearts forever.

Once again, thank you for being here and for the overwhelming support you have shown us.

Thank You.

 

 

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My Fallen Hero


As people fire up their grills and smokers to cook meats and have family and friends over, not only to kick off the unofficial start to summer, but to also celebrate our fallen service men and woman.  To me this has always been an undervalued holiday on our calendars.  The freedoms and lifestyle we enjoy in America came at a price and we should take seriously this day to honor those soldiers.

This year, this day has new meaning for me.  Despite having family members who have served, I never have one die in the line of duty.  I had also never had someone close to me I considered my hero to die either.  So while this day of memorial for our fallen heroes has always meant a lot to me, it never truly hit home. That all changed at 8:45 am on May 14th, when my son and hero’s heart beat for the last time.  His fight for survival in the 6 months he lived taught me so much about strength and courage. So for me, Memorial Day has a new meaning.  Now I have a fallen hero, that I can celebrate not just on Memorial Day, but every day.

Maybe if those of us who don’t personally know of a service member who has fallen, also think about our own personal heroes who have fallen this day will be more than a day of cookouts and the unofficial summer kick off, but truly be a day of honoring all of our fallen heroes.

Family Update: Continued Challenges and Blessings


Now that I am trying to get back to writing more consistently, I wanted to pause from the politics of the last few days and give an update on the ups and downs going on with my family right now.  I wrote a few months back about the condition my son was born with and the complications he faced and will continue to face.

We were grateful that at the beginning of the year, we were finally able to bring Aaron home.  It was great having him home from the hospital and not having to visit the ICU every night.  There were still going to be lots of doctor visits, as going home after the first surgery is a very risky proposition.  About 50% of the babies in this situation need to go back in before their next procedure. Things were going well, and the doctor visits were going great.  They were about to switch from weekly visits to every 2 weeks.  Then things changed. Aaron had some blood in his stool and so we had to take him back into the hospital.

We thought it would be for a few days, but we were wrong.  They thought it could be a flesh-eating bacteria or something as simple as pushing to hard to poop.  With his condition, they have to start at worst case scenario and work their way down. Good news was that it was not a flesh-eating bacteria. Things progressed from there, to where we thought we could bring him home soon.  But he started having issues with his lungs and breathing which is a sign that it was time for his second surgery.

It was a little sooner than they would like, but his symptoms were worsening and it was time. Heart surgery is always tough no matter if you have gone through it before. The surgery went well, but Aaron developed some complications after the surgery, where a little over a week later they needed to do another surgery on the same area.  Things were pretty bleak after that.  He had to be on an ecmo machine that did the work of his heart and lungs, and he was heavily sedated and on a paralytic drug for a while.  They knew they needed to do that follow-up operation, because when they tried to close his chest a few days after the heart surgery, he almost died. The next few days were rough, but we were glad he was able to get off of that machine. He started to make some progress after that, but still needed to be on the vent for support.  The length of time he was going to be on there was getting long and that can cause issues, especially if you already have weak lungs like Aaron does.

A few weeks ago, we were called into the hospital with some grim news.  Aaron’s lungs were failing and his was about 24 hours from no longer being with us.  It was important for him to turn around on his own without support, because they docs had done all they could.  It was at this point that I finally broke down.  The thought of him being that closed to death hit me pretty hard. Aaron fought hard and pulled through and really began making progress.

Not to long after that, he was able to come off of the vent and breathe on his own.  He did this for 2 weeks, and did well.  His heart rate was high during that time and I thought he was working to hard to breathe.  He was stable and the docs thought the high heart rate was tied to the fevers he was having and maybe the result of the infection.  The end result was two weeks after coming off the vent, Aaron almost died again as his heart rate plummeted to the dangerously low levels.

What happened is that he had been working too hard to breathe over those 2 weeks, and he finally got tired and stopped.  The docs indicated in all their years they had never seen that happen. Usually, if a baby needed the vent they would have their episode a few days later.  He went 2 weeks and seemed stable.

That brings us where we are today.  Aaron needs a tracheotomy to help relieve some of the pressure from his lungs and enable him to come home.  It will be challenging as he won’t be able to make any sounds and will be breathing through a tube in his neck.  We will need lots of home health nurses, but the important thing is that he will be able to come back home.

My lil man will be 6 months old next week, and has been in the hospital all but 3 weeks of his life and is about to have his 6th different operation.  He is a fighter and keeps fighting.  My family is thankful for all the support, thoughts, and prayers we have gotten from all our friends and family.

New life brings joy and challenges


For people who regularly read this blog for BBQ and Politics information, you may have noticed a lack of recent posts.  I apologize for the lack of posts and want to update everyone on the reason for this.

On November 14 at 8:30 am, my wife and I welcomed our third child and first son into this world. This joyous occasion was also accompanied by a lot of grief and stress.  Aaron was born with a rare heart defect called Hypoplastic Left Heart Syndrome, basically this is when the left side of the heart never fully develops and does not work.  The right side of the heart has to do all the work and if left untreated would fail ending the baby’s life.  Many parents do not know of this diagnosis until after the baby is born and they see certain symptoms.  We were lucky enough to where our doctors discovered this condition back in June and so we were able to take months to prepare for everything, and the doctors could have a treatment plan in place.

To treat this condition, there is a series of 3 surgeries done over the first 18 months of the baby’s life.  These surgeries restructure the heart to take pressure off of the right side and allow the heart to function as close to normal as possible.  As with any open heart surgeries, there are risks.  These risks are heightened when operating on a beating heart the size of a strawberry.

When Aaron was first-born, he had to have an emergency procedure done to relieve some pressure from his lungs.  A complication of his condition, had caused some pressure on the lungs making them not be at 100% at the time of his birth.  Aaron has been progressing nicely, and could soon be out of the ICU.  He still has ways to go before coming home, but considering everything he is doing well.

So that is what I have been focusing my attention on over the last month and not work or BBQ or politics.  Today is my first day back at work, and I will slowly get back in the swing of things about what is happening with our country.  Slowly regular posts will begin to show up.  I will also post some updates on my lil man as well.

Bringing it back!


I know I have not posted anything since August.  Things got quite busy with work and family the last portion of the year and I did not have the opportunity to focus in on my love of que.  I am back and even though life is still hectic and crazy, I will be making sure I still have plenty of time for some bbq.  After much encouragement from my wife I purchased a new toy and will be using my super bowl party as an opportunity to dive back in head first.  Look for another posting with details on that.  Here is my new toy!

I’m back


OK, so I realize that I haven’t made a post since June 18th, and there are various reasons for that.  However, life is a bit closer to being back to normal and now I am back.  I have missed all the Q and updating the blog and now am relaunching it.  I have changed the look and layout and will be bringing more substance to the blog.  So I know everyone missed me, let’s get back to the Q.  Because honestly, what in life is better than some good Q?

VIVA LA Q!!!