Sunday, December 4, 2011

Facebook Response

I woke up this morning thinking about the possibility of a diagnosis for Ryan and had so many questions.  The think that lingers in my mind is that with every profile I read, the child was already meeting milestones.  Ryan has never met one of his milestones.  I know that sounds really negative and I don't actually mean to be so negative about it.  Yet, there is no way around that.  He simply hasn't.   Yet, he was slowly progressing upwards for almost 3 years until this past June when he suddenly and quite drastically lost so many of his skills. 

Take a look at this picture taken in November of 2009:

 See how Ryan has his head held up?  Although he's 2 years older, he can't do that anymore.  He can't hold his head up.

I woke up thinking about all this and I went online to look for new information.  If you haven't realized this yet, I thrive on information.  And, let me tell you ... I have lots of new words that I need to more fully understand.  While online I also did a quick check to see if anything new had posted on Facebook, and I saw this response from one my favorite people, Howard Hurley. 

I should first tell you a little about Howard Hurley.  He is a great big guy, and he was my Dad.  No, not my dad in real life, but he was my Dad on stage in a show called Saturday's Warrior that we did back in the early 80's.  I was 14 years old, but played a little 9-year old girl who carried around a monkey-face sock doll.  In real life, he is a Dad.  A great Dad to a lot of kids.  And, you can tell that he's a great Dad by what he posted as a reply to my posting about Ryan's positive test.  Let me share it with you:

"Tina, the enemy you understand is better than the enemy you don't We know Ryan's disease is heartbreaking, but you must know you have a "cheering section" that think about you and your family often. If this is the diagnosis, well, it's pretty devastating, but it's a known quantity, and somehow, you have to deal with it. And I know you will, with your characteristic good attitude. I hope you find peace through this experience."

I started to respond to him on Facebook this morning and then realized it was too long and I wanted to preserve what I was typing as a reminder to myself for days ahead.  There might be a day when I need to remember.  Lately, when I've been reading in my scriptures, I've noticed that word a lot... Remember.

So, "Dad", this is my reply to you...

Thank you for your post.  I definitely think knowing is  better than not knowing.  You're right that I wouldn't choose this as the diagnosis, but I wouldn't have chosen any of this for him. Yet, I know that Ryan chose to come to earth even though he knew the package he was choosing.  It has been such a comfort knowing that. I cannot imagine life without having Ryan, even if it will be brief by our earthly standards.  I am thankful to know that he will be a part of our eternal family.  I will give thanks for each and every day that I am able to enjoy him. 

I also know the peace and comfort will come.  We are promised that He will comfort us and I know by experience that His promises are sure.  I'm so blessed to have so many who are willing to succor me and bear my burdens with me that there are truly times when I don't even feel the weight of them.  Thank you for being willing to be in my cheering section!  Thank you for your confidence.  I have learned strength and character from watching you and others like you!  Thank you!

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