Our first real family vacation

Erick was granted a wish by the Make a Wish Foundation and we will be headed to Disney World on Thursday. This is our first real family vacation since Erick has become a Gray. Needless to say the boys are super excited.  This will be Erick's first time on a plane and his first time to Disney. I am excited I get to experience some of his firsts!

It gave all of us something to look forward to after a very long day of testing and doctors appointments yesterday. As I shared in my last post Erick is getting sicker. Which we knew would happen but again it is hard watching him suffer. It is likely that Erick will be put on the transplant list within the next 4-6 months.  I know a lot of you do not understand why he would have to wait so long. The answer to that is not simple but is makes sense when you understand the process. Erick needs to use his lungs as long as he can. A lung transplant is not a cure. It is likely that he will need another lung transplant in his life time.  We are trading one disease process for another so while he is stable we keep him as healthy as possible until absolutely necessary. 

But I rest in the fact that his suffering is temporary. Once he is listed and he gets new lungs we will fight another medical condition but with far less restrictions. It is scary and all the unknowns could really send me into fear induced paralysis. And in that state I would miss out on the blessings of today. Because I know that today is all we are given. We do not know what tomorrow holds. But God does. I know He has walked before me and before Erick and he knows the outcome. I am struggling to let go of things I THINK I can control. 

So I will pack our bags and we will board a plane and all the while I will have to remind myself and Erick that fear is not of God. 

2Timothy 1:7   "for God gave us a spirit not of fear but of power and love and self-control."

Isaiah 41:10  "fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand."

Joshua 1:9 " Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go.”

Because if I don't we will miss the memories waiting for us.

Click here for more information on the Make a Wish Foundation.

Transparency.....such a hard concept

If you have known me for any length of time you have heard me talk about Joshua and Jennifer and the long hard path I have walked through after losing them. And I have talked multiple times about the importance of being transparent so that God can work through us to help others walking the same or similar paths. And while that is true I have been challenged on being transparent on a different level. Allowing people to know what is going on in the present and being absolutely real about where you are. So that is my disclaimer....this blog will most likely not be all warm and fuzzy. I am going to be completely transparent here.

Watching you child suffer is far worse than losing your child. There I said it!
I have wondered whether losing a child traumatically or watching them suffer is worse and now I know. At least that is how I feel right now at this moment.

Erick has been pretty sick this week. I have watched him struggle to breath as he coughed and coughed because his lungs lack the ability to move which can cause his lungs to fill with mucus. I have had to tell my child that when he coughs until he throws up that is a good thing (he was not throwing up stomach contents but the mucus that was filling his lungs, I know TMI) I watched his sweet face as he had to stay home as his brothers went swimming. Such disappointment. And I have had to have some really tough conversations about his disease and his prognosis. I have watched his face as I have had to use words like transplant, donor, and death.

The worse part of all of this is it will have to get worse before it gets better. I will have to watch him suffer and then go through a very painful surgery and months of recovery in hopes that on the other side of it he will be a healthy young boy that can run and play without getting tired and having to watch from the sidelines.

The good news is antibiotics are helping him and he is feeling better. But it has stirred up anxiety in both of us.

We leave for Disney World on Thursday. Erick was granted a wish by the Make a Wish Foundation! He is excited but very nervous too. He has never flown before and having been sick he is worried about what if he gets sick so far away from home. Honestly those are my fears too.

So in my transparency I will also tell you it has been hard for me to pray. You would think this would be an easy thing for me but it is not. I am a little angry, ok a lot! I know God put him here in our family but honestly I feel most days that I am not the best mom for Erick. Yes I have questioned God several times on this subject. I want to take away his pain, his anxiety and his fears. But I can't! There is not a single thing I can do to take that away from him. I have to hold his hand and watch him walk through it.

Now please know that I know God has a plan in this. I do!  And on the other side will be sweetness. I know this because I have walked in the abyss of pain and suffering. But today, right now, it hurts too much.

So I will be blogging through this journey. It is my outlet. If you would be so kind as to stand in the gap for us as we find out strength to fight his battle ahead of us we would greatly appreciate it.