Monday, December 19, 2011

Matthew 12:36-37

They had a beautiful article on this morning and I want to thank everyone who has left positive comments and words of encouragement to us.  It is TRULY appreciated.  And I know those of you who have followed our story and know what's REALLY going on, already KNOW how much I appreciate it.  You guys are what keep me going on a daily basis. 

But I guess trying to spread awareness about your son's extremely rare condition nationally has it's downfalls, too.  You get people with all types of opinions, and that's okay.  But there will not be people leaving comments on our story like that without getting MY opinion back.   

So for those of you who are not educated on our situation, let me begin... 

Tripp's life has not always been like it is today.  Please, I encourage you to actually read this blog- look at the pictures on the top link, look at his videos.  He has not been confined to the rocking chair, blind and in pain for 2 1/2 years.  He has been given the best life possible in his situation.  And I can say that because I have put my heart and soul into making sure he has.  He is the best kid I know- he has the most radiant personality I've ever seen.  Before he was confined to the rocker, he would play every day, he could drum to the tune of a song like NO OTHER.  He would smile, laugh, and melt your heart.  He has changed my life forever and the lives of the people who love him forever- just by being in this world for 2 years.  

And the people who made comments about me doing this for publicity?  Think about what you are saying... You are saying that I would rather see my child (MY CHILD- that I dreamed about, that I LOVE and gave birth to) in pain every day by CHOICE?  Because I want to be in the public?  Really?  I'm so sorry that you actually think a human being would do that.  
And as far as "putting him out of his misery"... ALL I'm asking is that you actually read and educate yourself on a situation before you cast judgement. 

 This has been an extremely gradual process.  Only within the past few months, has Tripp gotten to the point where he doesn't feel well enough to play.  And only NOW, for the first time in 2 1/2 years am I having to question his quality of life.  And I am doing everything in my power to make him comfortable for the rest of his time here.  
So please, please.... know what you're talking about before you make a comment about someone's child and someone's family who has gone through more in 2 years than you could imagine. 

I'm trying to understand your comments, I really am.  
But I'm just not sure what people think I am supposed to do?  He is BREATHING on his OWN.  He does not have a tube that he is breathing from that I can just pull the plug on. 
Yes, I admit, if he was breathing by means of a ventilator and was suffering this way, then of course, it would be about me making a decision to "let him go."  But this is NOT THE CASE. 
I cannot starve my child- who in their right mind could do that? 
I don't CHOOSE to torture him through baths every other day- I HAVE TO CLEAN MY CHILD.  It's not a choice.  What I CHOOSE to do, is sedate him so that baths are easier on him.  That is my only option.  

Sometimes I wonder if people really even believe what they write?  Like they think I would choose this life over my son's health.  Like they think I enjoy giving up every second of my life to have to fight for my child's life. Who would choose this life?  Certainly not Tripp, not me, or any of us- knowing what it would entail.  But we have stepped up and done what needed to be done to give my son the BEST care possible.   
And I'm sorry for those of you that can't understand that.  
And I am SO THANKFUL for the people who DO understand that.

And as far as the comments about having more children or for me to "stop breeding," I don't know where these things are coming from, but let me educate you AGAIN-
Yes, this was a genetic disorder.  No, my ex-husband and I did not know that we had a 1 in 4 chance of having a baby with EB- there is no test for it before the baby is born. 
But if or when I do remarry, my future husband will be tested to be certain that he does not carry this same mutation (that is 1 in 2 million) so that we can be sure that this doesn't happen again.  So as far as being irresponsible in ever wanting to have more kids in the future... AGAIN, please educate yourselves and do not make things up because you want to believe them.  There is no way that I would selfishly subject another child knowingly to this disease.  Come on people... It's ridiculous that I have to clear those types of things up.

I did not contact ABC to get this article published.  They contacted me.  And I appreciate it so much.  I, along with many others, thought it would be a great way to spread awareness about these precious kids and adults who suffer from a disease that is so rare that no one knows about.  
It is hard and hurtful to be faulted and judged for wanting to do everything you are capable of to end a disease so that NO ONE ever has to go through this.
So I hope that even through the nasty comments, that this will bring MUCH needed awareness about EB and eventually lead to a cure one day SOON.  And I hope that the people who chose to comment before reading our story will take the time to read and learn and educate themselves...
But most importantly, I hope they will get to know my little man's personality through pictures, video and my words- and know that he is nothing but a normal, innocent child who was given an unimaginable cross to bear, so that other's lives (like mine) would be changed forever. 

"I tell you, on the day of judgment people will give account for every careless word they speak, for by your words you will be justified, and by your words you will be condemned.”
—Matthew 12: 36-37

Again, thank you with all my heart to those of you who support us, support my decisions, and love my son.  
Thank you for understanding and learning and educating yourself about EB.

And THANK YOU, ABC News for featuring our story and helping us to spread the word!   

I love you, my sweet little man... and no one knows your heart like Mommy.  And NO ONE knows when you are ready to leave this Earth, except God.  Thank you for blessing my life beyond words. 
I will be right by your side, doing whatever I have to do to make you comfortable for as long as it takes.  You are my WORLD. 


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