We are back!!!

Our sweet girl!

Home Sweet Home!!
It is so good to be in our normal environment again! We had a good trip home yesterday. It is a long drive from Danielle and Ted's house but we did it!! We made allot of stops.... Olivia drank a few to many juice boxes and Madison's meds kicked into high gear!

We are thrilled that Madison is having some success with emptying her bowels. She claims that she is not having any sensation at all which is still a little disappointing. We had some blow outs yesterday and it is hard to believe that one would “not feel that”. We totally believe her though as that has been the case in the past. We will give it time and see if we progress in the right direction.

Madison is such a trooper.... It has been hard the last few days when she has made different comments about “her condition”. Yesterday morning I had laid both of the girls clothes out on the couch for them to get dressed. Madison looked at the pile and got teary and said... “It is not fair that Olivia has undies and I have a diaper, you told me that my surgery would fix me.” The only response that I could think of quickly was (sorry to all you men that are reading!) “you know mommy wore diapers too after I was in the hospital when you were born. Most people who go to the hospital have to wear diapers for a little while until they get better” She gave me a funny look and then said “ its not fair!”. So today she is in big girl undies.... she asked if she could try and I did not have the heart to say no. What is a little extra laundry right! The other thing that has been difficult is all of the meds that she is still on. The Flagyl for the C-diff, which taste NASTY and the daily ex-lax. I was giving her the meds yesterday and she again said “ you told me the surgery would make me not need medicine” It has been hard to know what to say... You know before the surgery we were trying to help her understand it all. What do you say to your five year old that through tears before getting an enema says “ why did God make me different?” GULP. I called my mom sobbing..... How do you even answer that? A sweet little girl that would come home from school and cry because “the teacher uses gloves when she changed me, will she get sick from changing me?” You do your best to explain... on a level that makes sense. And then you get to the place that we are now. Broken promises. I have tried to explain that sometimes things get worse before they get better. That Dr. Levitt still believes that she will be totally “normal”, to one degree or another in the months to come. But I can not make promises anymore. So for now we say... “Isn't it great that you only take one ex-lax instead of 5, or lets wear the big girl undies and see how we do. “ We are focusing on the small victories and trying to help her understand that all of this suffering that she has experienced is leading to the place that she hopes to be, in big girl undies and with no meds. And then I pray, asking, maybe even begging God to please make that all true! Please God make her feel “normal”.

She is resilient and her attitude so sweet. Last night she was miserable when I was trying to change her. The girl has a burn so fierce on her booty that it kills to change her. So we were upstairs, tears where flowing and I was trying to tell her that it would not hurt!!?? ( that probably falls under the broken promises category... I am still learning!) She looked at me and said “ you do not know what my body feels like”........... Ok, so you got me there. She finally allowed me to clean her up. Don and Jody Sullins had snuck in and were in the kitchen making a breakfast casserole for us. Madison really wanted to see them. We finished upstairs, I held her as she whimpered. We came down stairs and through the tear stained face she glowed! She told of pranks that she played on me in the hospital, funny tooth stories, bad memories and she just lite up! That sweet child has the strength of a champion!

She will make it, we all will – no matter what road we have to take to get to the final destination.
So today we will just reconnect with life... life as we once knew it 25 days ago! We are all in pj's. The girls are making a fort out of boxes in the living room. Jed is putting out fires in his office... making calls and returning emails. I am cherishing my time at the window seat, drinking coffee and reflecting on the last chapter of our lives. I need to journey next. Put some of the raw emotion on paper so that one day I can look back and see how God put all of the pieces together.

A pastor once told me the following story in another very difficult season of life after having our miscarriage. He asked me to think about my life as a beautiful cross stitch in the making, reminding me that I can only see the “project” from an earthly perspective. A view that is looking up on the underneath of the final masterpiece. You know what the bottom of a cross stitch looks like, especially if I am the artist... underneath there are loose strings, knots and sometimes awful messes..... But God is looking on the final piece from the top, where the beauty is, where the messy bottom creates a beautiful finished project. I will not see the “topside” until eternity when I can see my whole life, all of the pieces together. I know that is true for Madison too. One day she will see the masterpiece and will understand why all of these loose strings and knots happened. How it shaped her into the final masterpiece that God intended.

You know I have so much to be thankful for. I am most thankful for the day to day craziness that happens in all homes with kids! I have started doing dishes, cleaning up toys, laundry and breaking up fights(!) after several weeks of not doing so. It at times seems like a pain, but for now, I will consider it a blessing. I have 2 kids that are here with me, an amazing husband, great friends and a beautiful home. I will hold on to this and be thankful for life just the way that it is. I know that the outcome could be different. The Lord protected Madison time and time again. The more I read about her infection the more thankful I am that she is ok. It is a serious matter and many times the outcome can be grim..... I am thankful.

Tuesday morning as I was checking out at the Ronald McDonald House their phone rang. It was a social worker from the hospital. She was calling to ask them to take a certain family off of the waiting list for housing. I heard the woman in front of me say that she was sorry. When she hung up the phone she turned a few pages in her binder and wrote across the top of a page “ social worker called to remove name from the list. Child died last night 7/21/09.” We looked at each other, not sure what to say. She just whispered...”this is the hardest part about this job”. I paid my money and cried the whole way to the car. Never, ever will I forget that there are people that would trade places with me in a nanosecond. Why did it not go the way that it is supposed to for that dear family. They left with an empty car seat, with empty arms and worse yet hearts that must hurt....physically ache from being so empty. Thank you God for giving us a different outcome.