Thursday, June 25, 2009

coming and going and more

Am I the only one who feels like she can't get anything accomplished? There are just not enough hours in a day! I am catching myself coming and going. I'm keeping the big kids pretty busy so as not to hear fussing and fighting. Yesterday we went swimming at friend's house. It was fun playing in the pool with them. We then ate lunch while waiting our turn for the kids' haircuts, came home to change clothes, went to Toys R Us for a prize for Carleigh for making straight A's on her report card for the WHOLE year, and for Luke accepting his bribe and getting a trim without complaint or whine. (Sometimes you just gotta do what you gotta do!) Came home, left again to go to the grocery store, came home, threw some dinner together, shoved it in everyone's mouths, changed and got ready for family pictures...say cheese! Whew!

Today we are painting our very own 4th of July t-shirts! Stay tuned for pics of our creations.

Hope you liked the slide shows from days gone by yesterday. Every time I look at pics from the past I'm reminded how quickly time flies. I hope we're building memories with our kids, but more importantly, instilling the things that are most important in this life to prepare for the next one.

Do you realize it's hotter than blue blazes out there, people!?! My thermometer was reading 102 degrees. That's just insane! It's only June for crying out loud. I thought my legs were going to catch on fire in the parking lot yesterday at the grocery store. I'm gonna start praying for some rain. My poor little plants are starting to wilt.

Do you ever feel like someone is avoiding the subject all of this fluff is really nice, Christy, but how is Emma? Or you and Kelvin? Or the kids? Well, Emma is not all that great. I hate that she is not getting to enjoy the summer fun with the rest of us. She can't be outside in the heat because of the medication she's taking. Her body won't cool, and she will overheat. So, no swimming, no spray parks, no zoo for my precious baby girl who is fading before my very eyes. No sweet smiles and silly laughs, no bouncy three year old running around chasing her brother and sister or holding her new sister, no tiny little voice discovering new words and asking endless questions. There are only cries and silence. She seems to be uncomfortable a lot of the time. Her lack of movement contributes to constant battles with stomach issues. We had to increase her seizure med because she started having them again the other day. She stays up late and wakes up early, but lately has been sleeping for several hours at a time.

As for me I just want to scream or cry or both. I know there is no use in asking why. My finite brain is too small to understand. I started writing an email to a blog friend the other day...

I agree that my relationship with our Lord tends to grow when I face a storm. Is this really a good thing? I mean, why can't I grow closer and seek out a deeper relationship with our precious Father and Savior without the storm? Do I? Maybe I do, and that time is just preparation for the storm, and the storm is where I cling to the Savior I have grown to love before the storm. I don't know for sure. All I know is that I need Him to hold me and take away this pain...her pain, my pain, our pain...and I'm glad He is carrying the load. Our precious Emma, for whom you have prayed before, is suffering so badly right now. This horrific thing called Batten Disease, is taking over her body, stripping her from our arms on, what seems like, a daily basis. I want her to live again whether it be here, where I pray for a miracle healing, or in Heaven in the arms of Jesus where she will have a new body free from Batten Disease. I want that for her, but I also want the torture I'm facing as a parent losing her child to stop. I feel like I'm on the verge of tears every second of the day. Some days they flow freely, others I'm too tired to even cry. My heart is ripped out when I hear her cry out in what I can only assume is discomfort or pain. I HATE this! Does my child, His child on loan to me, really have to struggle with this awful disease for me to draw closer to Him? I hope not. I understand we live in a fallen world and horrible things will result from this fall, I'm just struggling with the fact that our baby girl is the one who is having to go through the horrible thing. So I don't know if I can praise Him for this storm. I will just try to remain faithful to praise Him in this storm.

The other children are struggling too. We have found a counselor whom I feel sure will help them sort through this confusing time. Of course their struggles manifest differently, but they have begun asking more and more questions, so we are getting some help answering them the best we can.

So, there you go. Probably more than you bargained for on this hot summer day. We covet your prayers. Thank you for standing in the gap for our family right now.

More sweet memories...


  1. The summer heat is almost unbearable! I complain when it's cold and snowy, and I complain when it's sufficating! I guess I'm never content! A day at a pool would feel marvelous!

    I'm so sorry that you are having to watch your sweet girl decline and suffer! I can't imagine the pain and emotions that you are going through!

    Although, I do know what it is like to watch your baby decline after a massive stroke and then not progress much and stay as an infant, even though he is almost 3 years old. And, to also have to watch him be in pain and not be able to tell me why, and to watch him have seizures and clonus and gag. Or, watch him go through numerous procedures and surgeries. To sum it up.....It Sucks!

    Being a mom is an emotional job to begin with, then add a child with special needs....Emotion and stress overload!

    I wish that there were an easy answer or fix, but there is not. I wish that I could hug you and make it all better, but I can't! I can and will pray for you and your family! Know that God is using your sweet girl for His purpose....for your life and so many others who have the priveledge of knowing you and your daughter!

    I'll be thinking of you and praying! May God give you peace and strength today and always! HUGS!!!

  2. Christy, I really wised there was a way I could take the hurt and pain that you are having. I love you and your family very much. I hurt for you. I wished I could take Emmas place and you have your baby back. Remember I am always a phone call away of you ever need anything.

    Lots of Love and Tons of prayers,

  3. This post made me cry. You know I've been reading your blog for a year and I pray for sweet Emma daily.


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