Greetings! It's been some time since the last update and that is b/c a lot has been going on. Emily has been pretty sick and we are not quite sure why... and neither are the doctors that we discuss these things with. She has two teeth coming in, so that makes for a lot of secretions and pain, but she has also had blood in her stomach and she has thrown up again. She continues to have a lot of gas and we've tried various medicines to help with some of these things. B/c of her condition we are not making this next trip to Salt Lake City which means we probably will not be going out there at all anymore. That means that we are no longer a part of the study and Emily is no longer eligible for PBA. That means that we either have to get into a study closer to home that can provide that medicine or we can try another medicine, VPA, that has had success with SMA kids. We are still not sure what to do about the medicine, but the reality is that if Emily is not on something all of her voluntary muscles will likely weaken so fast that she would not live very long at all. It would be a tragic downfall I'd guess.
The thing is, I don't know how long we can keep doing this. Emily had Diana up almost nonstop last night and I was up many times as well. We get a few hours of sleep every night b/c she is coughing, needs her feeds, needs to be turned over, etc, etc. We have inquired about "skilled nursing," but our insurance will not cover hospice expenses AND skilled nursing at the same time. We get out equipment through hospice, so we can't cancel that, but we can't continue getting NO sleep either. Not sure what to do about that. Lots to think about.

SO -- It has been brought up, by someone that I love dearly, that these posts do not entirely capture what life is like, at least from my perspective. I have to agree. For two main reasons I have kept these posts on the lighter side:
1. I feel a responsibility to not depress people with my antics, b/c they can be heavy, depressing, and wild at times. :)
2. When I sit down to type it is nearly impossible to put down in words how I feel at times. Usually when I sit down I am just trying to report. Although everything I type is from my heart, it is not always the entire picture. I hope you can all understand that.

Therefore -- I will divulge a bit so you can understand the bigger picture.

MANY people want to encourage us in our situation and that is Biblical and right and everything else. We should all do our best to be an encouragement to others that are suffering in one way or another. Right now we are having meals brought to us every few days and IT IS INCREDIBLE! Our friends and church members (who are also friends) are showing incredible selflessness as they care for us, the wounded. I feel wounded.

Aside from the incredible things that people do for us, and aside from the VERY important friendships that have developed over the past couple of years here in MD.... almost every day someone will make this comment: "Things will get better." Bull Sh^*. I am sorry, but God does not promise that anything will get better. Gazillions of people die in pain. Linnea died in pain except for the Morphine that gave her. Linnea's life did not "get better." There are times that we may feel equipped to endure some sort of pain be it mental, spiritual, physical, etc... but should we expect things to get better? Is that really faithfulness? God's intentions may be for us to suffer some string of tragedies until the day we die b/c He deems that to be more useful in His plan then excusing us from tragedy and suffering. That is more probable to me b/c we live to serve Him, however He wants us to serve. God wants us to serve him by living through the death of our children. He expects us to stick to it in our marriage even though we are tired, hurt, grieved, and can't get a long a lot of the time. I do believe that we can gain strength from the Lord in this and he DOES promise to give us the strength to endure it... but, if when people say that they mean "God will give you the strength and it will seem as though things are better b/c your relationship with Him is better," then I could agree, but I don't think that is what people are saying. Also, "God must be preparing you for something big." Well maybe he isn't. Maybe we are suffering so Annabelle can do "something big" with her life and we are just the stepping stones for the great way God will use Annabelle and it will really suck for us. Seriously, why couldn't it be that? Maybe God wants our marriage to be as difficult as it is b/c our constant need to work through things is a better witness to the people God puts in our life than a marriage where things are great most of the time. BTW -- I had a great conversation with a friend about how we are "so strong in the midst of this." I encouraged him to understand that if he sees strength it is b/c he sees Jesus, not us. It is hard to capture my thoughts on this in writing, but..... when I feel weak and rung out, I see how God is using us to infect other peoples lives. I don't want to feel weak all the time, but I do want to see how God is using us for His glory and to "further the Kingdom." I just feel all a mess most of the time. That does NOT, however, mean that I doubt God's goodness, or I curse Him, or anything of the sort. It just means that I am still learning how to deal with the responsibility that God has given me and us.

OKOK -- I don't know if I should keep on typing this. I want everyone to know that we DO feel encouraged by you and we DO appreciate your goodness to us. It gets fuzzy for me when I experience the meaning that others want to attach to our life. I want to serve the Lord b/c I want to serve Him, not b/c I think things will get better or b/c there is some big plan in our future that will make all of this seem worth it. We already think that this is "worth it," but that doesn't really make it less confusing. It's confusing b/c a lot of the time we just don't want it to be real anymore. We want it to all fade away like a bad dream... but it won't and we are learning to live with that every day. I think we will always be learning to live with it every day. The events of our lives are the ones that you want to forget, but you hope you never will. It's like what overcompulsiveness would be like spiritually I guess. We want it to stop, but it can't... but only b/c in the end, it is good.


Joseph Mullins said…
My heart goes out to you all. I have not been faithful to pray for your family as I should. Pain is a mystery. Thankfully, you're not an atheist, and you can yell at God anytime you wish, and the crazy thing is He hears you through His Eternal Son Jesus. I wonder how the Father felt during those hours of wrath and abandonment when He couldn't even look upon the God/Man laboring under the burden of all that sin. Maybe Lewis was right, the problem with pain is there's not enough of it in this broken world.

One thing is certain; you understand sanctification better than most. Be strong in the LORD.


Joseph Mullins
our three girls said…
"For you, God, have tested us,
refined us as silver is refined.
You brought us into the net
and bound our bodies fast.
You made men ride over our heads;
we went through fire and water.
But you brought us out
to a place of plenty."
Psalms 66:10-12
Thank God for your ability to give an honest account of the way your life is going. It encourages me to watch God give you grace to endure, even when you don't always feel like you're enduring. I don't understand much of what you guys are going through--you and Diana deal with, on a very personal and painful level, issues that most people don't even want to wrestle with on an academic level (what is life, what is death, etc...).

As God gives you grace to live thru this, your faith is growing. You have learned a dependence on God (and others which He has sent) that most people can't fathom.

Don't forget, and I know you haven't, that we live in the far country. Our ultimate goal in life isn't to preserve every last minute on EARTH that we can.

We love you,

Hebrews 11: 1-2, 13-16 (The Message)

The fundamental fact of existence is that this trust in God, this faith, is the firm foundation under everything that makes life worth living. It's our handle on what we can't see...

13-Each one of these people of faith died not yet having in hand what was promised, but still believing. How did they do it? They saw it way off in the distance, waved their greeting, and accepted the fact that they were transients in this world. People who live this way make it plain that they are looking for their true home. If they were homesick for the old country, they could have gone back any time they wanted. But they were after a far better country than that—heaven country. You can see why God is so proud of them, and has a City waiting for them.
Anonymous said…
My heart goes out to you as I read. God has you in such a painful and sorrowful situation. At the same time you see so clearly the it is worth it. What a blessing! What greater blessing is there in this life (and the next) than intimate fellowship with God himself? Amen.
Kevin Heinz