Tuesday, January 20, 2009

I survived

OK, I survived the no food for 12 hours, really sugary drink, 4 blood draws, and didn't throw up, pass out, or die! The 3 hour glucose test wasn't as bad as I thought. I was just really hungry and mostly dying for a glass of water before it was all over. I'm hoping to know some results by tomorrow afternoon, so I'll keep you posted.

Our good friends gave us a really cool automatic ice cream maker with the neatest bowls and tons of yummy toppings for Christmas, so think happy thoughts for good results so I can enjoy the treat!

Tomorrow is Emma's evaluation with the school district. I filled out a ton of paperwork today while I waited at the doctor's office for three hours. I hope it's a speedy evaluation since she is not the most patient little girl lately.

I bought a new bath time thingy to bathe Emma in since she doesn't much care for baths anymore. She liked it for a couple of minutes and was done after that. It did make bathing her easier on me though.

It never ceases to amaze me how wonderful people can be. We have had so many blessings poured on us since Emma's diagnosis. During the holidays some sweet ladies from church came over one evening and kept the kiddos so we could go Christmas shopping. We still have people bringing dinner over several times a month, and we have received some really nice gifts from people who just wanted to do something. It's hard to be on the receiving end of things, but I'm learning that God wants people to bless others, and I need to be receptive of the gift. It's much easier to give though. All these lessons! How I wish I could have learned them through different circumstances.

Emma's disease continues to progress. She isn't doing much of anything lately. She's content just lying around, eating and sleeping. I found myself getting irritated today as I filled out the school district paperwork. The questions do not apply to her at all, so all of my answers were "NO" and "n/a." She will not see any improvement without a miracle, so no, I don't have any goals for her in the different areas in question. All I want is for her to be comfortable and happy as much as that is possible. My goal nowadays is not for her to walk or talk or learn how to hold a crayon or potty train or feed herself; it's to do things for her to keep her stimulated, give her therapies that will keep her arms and legs from being so rigid and weak, and do whatever it takes to keep her comfortable and cry free. If that means holding her all day and giving her massages, and pushing her in a swing, then so be it. If it means letting her sleep most of the day, then that's what I want. I wish and pray with all that is in me that things could be different for my sweet little girl, but they don't seem to be changing. Maybe I need to understand that my miracle may not be a physical healing for Emma, rather all the wonderful things and the unbelievable love that is coming from people because of Emma. She is touching lives in a way we never could...another miracle. "Where there is great love there are always miracles." ~~Willa Cather

I guess I need to just look around.

2 comments:

  1. Yes, sometimes we just have to look around to see all the little miracles! I'm so sorry that Emma is not doing well, it must be so difficult for you to watch and not be able to do anything about it! But, she is certainly touching many lives and is such an inspiration to others! She is one of God's little miracles and I know that He has a great purpose for her and you!

    I have always had a difficult time accepting gifts that were given to us in our times of need, but was always so appreciative of them. My friend once said to me that people want and need to help in some way and when there is nothing that they can REALLY do, then a gift or dinner is something that they HAVE to do to feel like they are helping. This made a lot of sense to me and it helped me to accept gifts a little bit easier. Remember that you are actually helping them by accepting their gift. I'll be praying for you and your sweet girl!

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  2. You are right she is touching lives. I dont have any words to make you feel better. I wish I could come sit with you, im so glad you have people around you helping you.
    All our kids really need is love, and Emma has so much of that!

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