...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.
tuesday
, 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!






4 comments:

  1. My heart just breaks to hear this happening to you two and poor Bailey. You are such amazing people and so strong. I check daily just to see if there are any new posts that I can pray about. I wish I could be with you just to help out for a couple hours. My foot's getting better, so hopefully soon I can do that.
    I pray for you daily and hold strong that God will do some miracle in Bailey's life and yours so that she gets better, pain will subside, feedings go better, and seizures will stop. Thinking of you daily, hourly, and sending lots of love and prayers your way.
    Calli

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  2. What are your physicals needs that we can help with? Dinner, gas cards, movies, a trip to the grocery store....

    You must be so overwhelmed with the day to day. Please let us help you in the little ways that we can...

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  3. There is a quote from a movie that often runs through my mind when I think of you, Matt and Heather..."it's the character that's the strongest that God gives the most challenges to". I think about what you are experiencing and I have no words. But I know that I have seen your character through the years, and it is strong. I'm so thankful that you have chosen the "better" path...press on, my friends! We love you dearly...Tiffany

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  4. We are thinking and praying for your family. It was so good to hear an update at Maria's shower from your sisters and to pray together for your family. We love you both and are praying for little bailey and your other beautiful children.
    Laura

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