Feeling Worn Out

I come here tonight asking for prayer. The peace that had blanketed my heart last week seems to be thinning. Isaac's birthday is approaching, and while the joy of having Hope here seemed to overshadow some of my sadness and grief, I am finding those things sneaking back in with her recent diagnosis. I am very well aware of the fact that God is indeed in control and is 100 percent capable of healing her. I want to believe that He will or maybe even that He has, yet I have prayed for healing before and have yet to see it this side of Heaven.

Hope's diagnosis is daunting for me. There is no one locally that I know of who has any knowledge of this disease and I do want to be sure she gets the best medical care possible. I have so many questions and so many fears. The thought of her growing up in constant pain, bearing the physical scars to prove it is maddening. Small things such as immunizations and how to take care of routine things without damaging her skin baffle me.

If I am being honest there are even times when I sit here and think, HONESTLY, I have already had to say good bye to two of my children and now this uncertainty, what on earth did I do to deserve this, what am I not learning that God is trying to teach, and why do my children have to suffer for it. When Isaac died four years ago next week, we had the testing done, biopsy and autopsy, both came back saying we had no reason not to continue to grow our family and honestly I feel a little duped. Now, that said, I realize it was God's plan for things to happen as they have and I am very thankful, we now are the parents to FIVE amazing kids! So often I feel as though my life is spent holding my breath and waiting for the next storm. I am human and if I am being honest, I have to admit I do have times where I sit here in self pity.

I have no idea what we are going to do for Isaac's birthday, I am still scared to venture out too much with Hope and we just don't have the money now that we are making multiple trips to Pittsburgh and paying deductibles and copays out the wazoo (is that even a word?) Maybe a picnic at the lake, who knows.

Now with all of that whining out of the way I can also say that I am praising and thanking God that Hope is still doing well. She has no blisters just a couple little scratch marks. She is still nursing very well and thriving. She is starting to make sounds other than cries and it is awesome. We are hoping to get her pictures taken soon once her heat rash/infant acne clears up a bit. We enjoy her so much and I can't say I am sad that mommy is certainly her favorite person! She is really playing favorites these days! Only mommy will do!

I also must say that as I look to God for answers here I find Him reminding me to be patient, be still and to wait on Him. I am doing my own little study on worry and hope to share that with you soon. It is tough to find time to type with two hands and my one handed typing though improving is quite slow.

I am still also struggling with the idea of prayer, I want to pray effectively for Hope and have no idea how to do that. I welcome any insight you have on prayer, like, is it appropriate to pray for healing of Hope or do I just pray for God's will and peace for my heart. I am lost here. HELP!