...bailey's story...

Our story is a story about a MIRACLE. It is not the kind of miracle that is so often shared in Christian circles. We have heard stories about untreatable cancer that disappeared and of a child that was never supposed to walk or talk and is now a healthy adult. These are often the kinds of stories people share with you when you are experiencing difficult circumstances. Stories about the TRAGEDY that was avoided or the near miss that is now in the rear view mirror of life. We value these types of stories and we CELEBRATE them!

Ours was not that kind of story. Our daughter Bailey Hope was born on February 20, 2009. She died on August 13, 2010. The eighteen months in between were horrible and heart wrenching as we experienced our worst fears coming true. We were not rescued FROM heartache and tragedy.

Our miracle was that we were joined IN this journey by friends and family that gave of themselves and by our GOD who held us in unexplainable ways. This is our story. We do not share it to garner pity. There are others who have similar stories. There are so many others who have more tragic stories.

We share our story because it is impossible to talk about our beautiful daughter, without talking about our beautiful God. We must talk about our daughter. We must talk about our God. It is the MIRACLE behind the MIRACLE.

Thursday, 25 June 2009

i talked with heather last night..my heart just broke again, listening as she shared news about bailey. she is such an amazing mama..so centered on what is best for bailey. i kept waiting to hear her talk about getting some relief..and she did, but not for herself or matt..but, for bailey. and i know matt is in that same mindset. they are in this fight for their child's well-being and are doing every single thing one could imagine to make sure she has the care necessary for each day. the heavens are clapping for these two...

a p p o i n t m e n t s
there are many, many doctor's appointments..and many still to come.
, bailey was in feeding therapy with heather,
she had 2 seizures in a matter of 25 minutes.
bailey continues to struggle through these sessions.
but, they continue to go and are praying for positive results.

s e i z u r e s
she is having more seizures..and, they are harder to detect-
which must be so frightening. each episode physically wipes her out!
the doctor's have increased her medications in order to be preventative...
please pray that they will be able to prescribe the correct amount-
enough to stop her seizures, but will not cause her more pain.

p a i n
with each feeding, bailey continues to be in a lot of pain.
there are 3 or 4 really hard days of feeding to 1 good day...
this alone brings much sadness and ache,
as matt and heather can do so little to relieve her pain right now.
she is scheduled to see her pediactric neurologist in 2 weeks.

t e c h n o l o g y
matt and heather's internet has been giving them some trouble.
your emails and responses to this blog mean so much to them!
comcast is going to be fixing the problem...so, they will
be up and running again soon!

Sunday, 14 June 2009

June 16

It has been such a long time since our last post and yet it seems like only yesturday. I have struggled to know what to write. This last month has held some of our darkest days, and also some of our brightest. Bailey's pain with feeds progressed to almost every one and was very extensive. We have tried a few different medications to help control the pain level and we feel like we have found something now that may be helping. We are so incredibly grateful that Bailey is more relaxed and comfortable. We still have hard days but have had a few good days lately. We are learning not to take the good days for granted, and continually praise God for them.

Life has been very busy with appointments lately. Bailey has feeding therapy twice a week for the next 12 weeks, and has also started her physical therapy, and occupational therapy with the Early On program. As of now, they have showed us different excercises to do with Bailey at home to help her progress, and to reach her potential. Please pray that Matt and I would have chunks of time during the day to do these different excercises with her.

We wanted to share some of our "bright" moments as well. Lexi is cooing a lot and always has a smile on her face - her middle name, JOY is so perfect for her. Bailey has also cooed a few times and I have seen her smile once, which has been such a gift. I continue to hold on to HOPE that we will have many more smiles and a lot more cooing.

In closing, I just wanted to share one statement with you that has been such a source of truth and comfort in the past few weeks. Jesus Christ is not my security against the storms of life, but He is my perfect security in the storms. He has never promised me an easy passage, only a safe landing.