Days 90 & 91

Mikayla has been a bit of a disaster at night... she wakes up, and then won't go back to sleep, but just cries and cries. I am resorting to every which thing to help settle her... but it's ended up in tears in my court most times too. It's really hard. I don't know what's wrong. I can't comfort her. I don't know if shes sore, or uncomfortable, or just fussy. And while she may not have the loudest cry, after 3 hours, it's fairly earth shattering!

So, onto my last blog point. Faith vs. Healing.

You know, on occasion I have people telling me that I have to BELIEVE that Mikayla will be healed. That it's up to my belief- my faith. Now without going into a complete rant about the issue, I want to point out a few things, that I believe. I am no theologian, or great religious scholar, or well versed biblical fanatic... this is just my opinion.

1. God does not NEED our faith to make things happen. He may desire our faith, encourage our faith.... but he certainly doesn't need it. I think it is completely arrogant on our part to think that in order for God to make big things happen, that he needs something from us.

2. While God may desire our faith. If it's HIS desire to heal.... He will do so- if it's to glorify HIM. Quite frankly I cannot believe that God would make us bear the responsibility of whether or not healing or other miracles take place. He will make things happen through us, but DESPITE us. If He made it MY responsibility whether Miks was healed or not- well, in my opinion, that's simply CRUEL. And I believe in a God who LOVES. Not a cruel God.

3. Some people have this twisted notion that miracles are only big things. You know: someones leg growing back... people coming back to life... that sort of thing. Now, that's true, those are miracles... but there are small miracles that are brought about through God's grace daily. Some people are so busy looking for the big ticket items, that they miss all God's glory along the way. Mikayla essentially has a terminal "illness". And YET... she is alive. Only 20% of T18 babies live beyond 30 days. Is that not miraculous already? Is it not miraculous how a community will pull together to love and support one another in tragedy... is that not miraculous? Just as an aside... the bible also says that the devil will bring miraculous signs and wonders ("The coming of the lawless one will be in accordance with the work of Satan displayed in all kinds of counterfeit miracles, signs and wonders" - 2 Thessalonians 2:9). Frankly, in my opinion, if your faith is built on signs and wonders, well, that's not the kind of foundation that I think Jesus was talking about. I am not denying that God uses miracles to bring people to Him... but it's not enough to walk in faith based simply on miracles.

4. It is highly, HIGHLY irresponsible to tell people that their "miracle" will come if only they believe. What if it doesn't come? Didn't they believe enough? Aren't they good enough Christians? Doesn't God love them enough? I mean, come on! Surely people who utter these terrible words to others can see the damage and hurt they could cause?!We are meant to encourage and love one another... telling me that my daughter will be healed, but I have to believe first is WRONG. SO VERY VERY WRONG! And it makes me furious beyond words. We should hope for miracles. Desire them. Pray for them. And yes, believe they will come. But there is such a thin line there between believing in a miracle and expecting one... and putting all the responsibility on my shoulders. If the miracle were up to me, I wouldn't need a God, now, would I?

I love my daughter, and more than anything it is my hope that she would be healed. But I know that it's not up to me. Its up to Him. And I also know (and God knows this), that my desire is that she is healed completely.... but we aren't dealing with a treatable disease or disorder here, and I know what the statistics are on these children- there are NOT cases of children getting healed from their T18... and I have to prepare myself, because it will simply hurt too much if I don't. People will argue then that I don't have enough faith. And, quite frankly they can get stuffed for all I care. Because until you have been in a situation like this, who ARE YOU to criticize?! And it's always the people who sit on their soap boxes without a trouble in the world telling others how to live their lives, and how to walk in faith.... but wait until the storms come their way.....

I don't need God to send me a miracle, for me to love Him. I will love Him THROUGH the storm. And when I am angry, I will scream at Him, while He holds me in His arms.

Oh, and by the way, I need to add: God didn't make this happen to teach me or Russell a lesson. That too, is cruel. Really, some people need to just THINK before they wag their tongues all over the place.

So, that's my vent.

Went to friends for dinner tonight, which was wonderful... but little Miks basically moaned the ENTIRE evening. Really, I am exhausted!