Hello.
It is Wednesday, Bingo day at hotel de-Doernbecher and it's on! Word got out that Conner man the bingo champ was back and so we've been challenged by many CF'ers to a duel! The bingo card has been delivered, we requested the winning card of course, and I feel we got it, because they handed us his card and a RED marker to use...so hello...red means we'll be victorious! Then it'll be school and then Kim in child life will be in to play. A fun day for sure.
We saw Dr MacDonald today, the oncall CF doc for this week and I told him we'd like to hopefully go home on IV's Friday since it's walk weekend AND mothers day (don't forget that!) and so as long as he responds well to his IV changes we'll plan on going home Friday. Good times. It's nice that they trust us enough to care for Conner man at home. I know they don't let everyone go home with IV's because some people aren't complient...so it's a big compliment when the docs let a CF family do that. a nice boost of confidence. and we all know CF parents need nothing more than encouragment and compliments on a job well done for what we get accomplished each day. So I appreciated that today. It's the little things that count.
My heart is pretty broken today. Im feeling pretty overwhelmed and fragile...so any prayers would be greatly appreciated. It's hard not to feel defeated and unappreciated sometimes in this fight. I'd like to also ask that you keep my husband Brad in your prayers as well as he could use all the support you can muster. This is a more difficult time in our lives then what shows. Brave faces become the "norm" and almost more important than the words that we do say, are the ones we don't have the heart to say. Unspoken words, unspoken feelings easily bring us down and make each day difficult. Our prayers as well, go out to each of you, for God giving us your amazing friendship and strength, His plans are to prosper us and not to harm or hurt us and seeing our despair it's easy to overlook the amazing blessing God is giving us in you each day. So thank you once again. I can never say it enough. We inspire you and you keep us afloat. Even a person who doesn't know of the Good News can plainly see God thru all of this pain. I received an email yesterday that put it all in perspective for me...it said "I found you from a friend. Your story caused me to pray. Pray for the first time in so many years."
isn't that amazing. It's not me. It's not Brad, nor Conner, nor Hunter and Bradyn...
It's ONLY GOD...
and it's simply beautiful
happy cinco de mayo to all of you...have a margarita for me... ;)
I am keeping you all in my prayers. I pray that your heart feels less broken, for hope and strength for Brad, comfort for Conner.
ReplyDeletelots of prayers and good thoughts to you and your family <3
ReplyDeleteI was thinking of all of you today telling people at work about your blog and about Conner, how during these times your able to write on your blog and how you keep the faith but also show your pain. I pray everyday for Conner and your family, our lives are not easy and I don't think people can really understand what we deal with unless they live this life. May God surround all of you and place peace and comfort in your hearts! Sending prayers up to heaven for all of you!
ReplyDeleteI am a fellow cf mom, stranger-friend. I pray for all of you each day. Your strength and honesty are awe inspiring. Please know so many people are lifting you up. You are never alone. Thank you for your bravery.
ReplyDeleteI just prayed for your family and for some friends of ours that are dealing with CF as well. You are an inspiration with the way you let us see your heart and your commitment to God. May God richly bless you and I pray that Conner can be at home for Mother's Day.
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