Sunday, October 4, 2009

now i know...

Ok, after 2 years and almost 2 months, I finally got a answer about Asa. In my last post, we had some extensive testing done this past July to test for a multitude of disorders. This past week, I got my answer...Asa has mitochrondrial disease......I probably have not heard of it and if you have, it is so complicated that it will leave your mind going 90 to nothing wondering what the hell it actually is. IF you want to find out more about it, just type it in your search engine and it will pull up a whole bunch of things that will scare the crap out of you. Right now, I do not have the energy to explain it.  Every child is different, the symptons are different, it attacks different organs in your body differently, it is truly complicated, and in  all the parent forums, websites, etc. that I have been to, the parents are feeling the same way....exhausted, confused, and frustrated because with this disease there is no cure...It is almost like we have to suck it up and have our children bow down to it and just pray for a miracle... Well, I have had no choice but to jump in head first and start asking questions that no parent should ever have to ask...How long will my Asa be here? How long do I have until it really starts to degenerate? When will I know?  Why am I asking myself these questions over and over in my head is because I simply do not know the answer and I did not know them before the diagnosis either, but I did not know a reason, cause, or diagnosis to go along with these what ifs in my mind. How am I suppose to feel? My baby's brain is involved... I simply do not know how to heart is so full with the unknown that I simply want to just curl up and hold my baby and forget about the world around me.The news is too hard to comprehend, too hard to understand, and just too painful all together. I can barely type these words without the tears rolling down from my cheeks dropping on the keyboard.

 I know that this is way to BIG for me and Andy to do alone, I know this. I don't want to do it alone!!! I need you God now more than ever! I need to now why Asa? What did I do? I will do better God,,, I also know that Satan has put all this fear, doubt, and anger into my heart because he does not want me to follow through with this special assignment. I know that is the reason I feel such pain right now...but, I will wipe away my tears.
 If you don't know me you would never know the pain I feel inside. I will smile at you, I will laugh at your jokes, and I will go about my day as I am the happiest person on the face of this earth...for that is how I am. I try to hide behind my pain, worry, and doubt. I must take everyday one at a time. I must take each day as a gift with my son and pray for the strength to do this for Asa. Right now, as you can tell, I  have so many feelings and thoughts that I probably do not make a lick of sense to those who are reading this. However, I know if you are reading this, you are my friends and family who care for me, Andy, and Asa very deeply.. Let me reassure you all....................I will be ok, Asa will be ok, and no matter what happens, Andy, Asa, and myself know how much we are loved by so many...I also promise you and most of all, my precious Asa, that I will always, NO MATTER WHAT.... FIGHT FOR HIM UNTIL THE DAY I DIE! i will not give up hop....ASA....thanks for listening...


  1. Carolyn, you should know that this didn't happen to Asa (and your family) b/c you "did" or didn't do anything. I don't know why this happened; we will never know why here on earth, but God does have a plan. He loves you, he loves your husband, and he loves your son very much. I am praying for you, Asa, and your family.

  2. Every child is a miracle, this includes ASA. You are great parents and I will pray for you, Andy and ASA. Each parent is given a child by God and he meant for Asa to be loved by you. You fight for him, love him unconditionally and you know how special he truely is. You Carolyn are his mommy and that is a gift.

  3. Hang in there my fellow mito mom. You will get through this...I promise. It won't be easy...nothing ever is...but that's what makes you stronger to fight even more for ASA. God didn't give us these special kids because we are weak...he gave them to us because we are fighters and will fight for our kids. He knew exactly who was going to care for his children when he placed them with us! Hang in there! (((HUGS))) Erin

  4. You are such a special person, Carolyn. I am glad that you have an answer, but hate that it only brings more questions no parents should face. Jay and I are thinking of you, Andy, and Asa. I can only imagine what you are feeling, but you know what God needs you to do, which happens to be the most selfless and simple thing we are capable of....Love Asa with everything you have. No matter what, you will know that you loved him with all your might. Relish in Asa's happiness and enjoy your sweet little boy.

    Our prayers are yours. The Hodgkin Family

  5. My dear sweet Carolyn, I know you have to know that you did not do anything to make this happen. I have asked myself that same question when we lost our precious Hudson and I just have to know that the reasons these things, these heartbreaking moments in life, happen for a greater purpose that does not unveil itself so easily. I am praying for all of you and thinking about you often.

    I love you!