Last Question: How can I be supportive to someone who has a disabled child? I feel out of place a lot around them.

It's not easy I'm sure to see someone devote their life so wholehearted to their child.  And it certainly is not easy to understand the words they use everyday to describe their child or talk about their child.

I did have a support system from my family as they faced everything with me.  But you will probably find the parent being to pull back as they probably cannot attend regular functions like movies, and dinner on a regular basis or you may feel they pull back because they feel you will or cannot understand what they are going through.

My suggestion would be continue to provide support. Even asking daily how their child is means a lot to someone experiencing everything  with their child.  I can tell you from personal experience having someone who has never met my son in person asked daily about him and it felt great knowing someone out there cared, even just a tiny bit.

And also be there for them. Spend time at their house, ask about any new milestones happening, ask them how they are and offer to help like going to store or making something or taking the effort to understand their world can go through a whole lot but importantly mention if it becomes too much for you to handle and you need to back away.  Just knowing that their new life and child isn't the cause of the sudden diminished contact with you will help them feel okay if you need to step away.

Question 3: Is or was it difficult to understand all that was happen to Hunter or any child's medical history?

It can be difficult to understand. Throughout your education in school you rarely hear the words, Cerebral Palsy, Seizures, Feeding tube, etc.  You are certainly taught the basics of the understanding I'm sure in school when you take health class or science.

Becoming into the world of disabled, it's a whole new world to experience.  You are diving into a hole where words like CCs, and valium become an everyday vocabulary and there are a lot of books out there to help you understand and even your child's doctor can help you out as well.

Question 2: Are you angry or depressed over the loss?

I was never truly angry over the loss. The Doctors at Johns Hopkins did do their best efforts despite the sudden outcome.  Do I fault them in the end? No.  As some may not understand why I feel the way I do, I believe that holding grudges to someone who did their best isn't the answer.  Am I angry over the outcome in the end? Of course. No one would want to have their child go before them.

I am still sadden over my loss but as time has gone by it has become slightly easier to go about life.  I often tell myself that if I gave up when Hunter didn't then I wasn't being fair to him at all when he struggled the most and still smiled.  Some things are difficult to do, like watch videos of him.  I have been able to look at pictures without breaking down but videos draw the line.

But I take these emotions daily. Some days I do get angry and other times get depressed but it never last long as I remember his smile.

Question 1: Donations were made in Hunter's name to Kennedy Krieger, do you have access to that money, if so, what would you do with it?

I have been asked this question a few times.  A donation made is not accessible to me or my family.  It is made into support of Kennedy and their efforts of research or charity.  If there would be an accessibility to the funds made then I would like to open an resource-type funding and research to aid other families in need with children of complex medical needs. While there are tons of resources out there to aid families, perhaps there are too many that we cannot find or have access to.  During Hunter's life things that were mentioned to help financially and support were all over and it is always a matter of getting paperwork, the right people, and the eligibility.  It's a long winding process that often times it becomes more of a hassle gaining the help than it is being in the program.  With all that was dealt with Hunter it has made me realize that I want to help others and help provide Doctors the research and funds needed to help future families out there, as well as support groups for families.  Maybe one day.

What to discuss or be a topic?

Hello friends! I would like to know what you want to know or read about? I will be doing research topics based on health issues related to Hunter or other children but please remember I am not an expert or a Doctor so anything discussed here should also be discussed with your child's doctor. So send in suggestions! 

2 years later

Wow cannot believe its been over two years since my last post. So much has changed although it seems so little. The memories still haunt me to this day, always floating in my mind. I have been asked on a few occasions to at least speak with someone over my grief and I feel that perhaps I feel strong enough to finally open up without completely losing into my emotions. Only time will tell when this will happen but I will keep everyone posted. 

New titles and topics will be coming soon.