Saturday, March 8, 2014

William's Update

William's Journey shared a link.
Update - (Be sure to watch the video at the bottom of this post.)March 8, 2014:

You usually write an update to state some big positive change that has occurred; this won’t be the case for us. The positive will be that we haven’t seen any ...regression, and that is very hard for people to register in their minds. I understand.

I was in Walmart and saw pictures of missing children. It put a hole in my heart. Many times I have seen those posters and said, “How terrible,” but that is as far as it went. I can never know what pain and agony those parents are going through. The not knowing with no closure, the constant nightmare would be imaginable. I have never prayed for those families. I have seen the posters and thought what a nightmare, but never physically prayed for those families until now.

God is changing people through William, many people including our family. In William’s five short years, he has touched more people than I have in my 39 years. He has accomplished more on this earth as a non-verbal little boy than many of us have. We have no doubt that God is using him to touch the lives of others. William will hear, “Well done my good and faithful servant.”
How many of us will hear that? Isn’t that what this life is all about?

William’s school has been a blessing for the whole family. They are doing a fundraiser for awareness of Batten Disease and in part to help us as well. Jason and I are so touched by this that it hurts, if that makes any sense. I want to say, “No! No!”—we want to stay in our little cocoon, and God keeps- KEEPS- pulling us out and telling me to let him do what he needs to do. What a strong statement. I pray for God to use this, and yet I do, in some ways, see myself standing in his way sometimes. I do for others - that is what I do. We are good at it, both Jason and me. We have that calling. So when others do for us, it is hard to accept—it touches a place so deep within the heart that it hurts. It’s a good hurt, but it is emotional.

I don’t like to show my emotions. I hate to breakdown because it makes me feel vulnerable, and as crazy as it is, I don’t want to make anyone feel uncomfortable. If people ask about William and I don’t think they can handle the truth, I will say, “He’s fine.” even when he isn’t. This whole situation is depressing; so why bring someone else down if you don’t have to. I have always put others before myself, wondering how this will affect them. I am slowly, SLOWLY giving God the reins.

We have had serious decisions to make within the past several weeks. None of them came without prayer and serious thought. I know people have many differing opinions on this, but please respect that this is our family and that we are doing what is best for us. We signed up for hospice a few weeks ago, and I have not regretted my choice at all. We haven’t “given up” on William. As I like to say, we are “living” with Batten disease, not “dying.” I want to make sure we are living every moment. It’s about quality of life, not only for William, but for the whole family. (A new law passed that allows all pediatric patients with life limiting diseases to be on hospice for an extended time. This is not the case for adults. Adults have to follow the standard 6-months rule. We can also get off at any time and re-enter the program.) There are several resources available that I haven’t tapped into yet, because I'm a tough nut to crack, LOL. I will eventually use the resources because I know they are needed. It is pushing me and that is probably a good thing. I will say that it’s painful for me to let anyone in. Again, God is pushing me beyond my borders.

All I know is this is where we are supposed to be right now. I have no idea what the future holds honestly, but I know God has a plan for William, just as he has a plan for all of us. We don’t know how that plan will unfold. All we can do is take each day as a gift and try to enjoy every moment we have been given - very easily said, but hard to follow.

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