Monday, September 10, 2012

What just happened?

What just happened? We were having a normal day on Tuesday. Went to the ER on Thursday and thought we were losing Reese on Saturday. We didn't see this coming. At all. On Wednesday Reese began Presenting respiratory symptoms but it really looked like the minor cold that had worked its way around bedroom number 4 at our house the week before. I kept her home from school but handed her off to Mario when I had to attend a meeting at school. I ran into a friend who, with eyes of wild expectation, asked me how I was and how our weekend had been. Racking my brain for what she must be alluding to, I came up with, "It was fine!". She told me she woke up in the middle of the night on Saturday with our family on her mind and could not go back to sleep. So she prayed for us all night, not knowing why. We teared up a little and said goodbye. As soon as she turned to go, another friend announced, "Kerry! I need to talk to you." She told me about how at 1:30am she could not get Reese's face out of her mind. She started to text us but God told her to go pray for Reese instead. This was the wee hours Wednesday morning as Reese was getting sick. As she talked I was reminded of how our brand new neighbor had come over to visit several days before. She asked if everything was ok because God had awakened her to pray for our family. This friendship is so new that she had not met, nor had I told her about Reese. I told my friend about Shannon and Peggy, and both Miriam and I got chills. At the time I had no idea why God was actually waking people in the night to pray for us. Needless to say, I was humbled, amazed, and wondering what was happening. I went home and we all praised the Lord together for his tender care for us and His incredible ways. Little did we know what would transpire three days later. As I held Reese's hand, begging her to breathe and praying for God's mercy over her, He reminded me of these conversations. Remember how I called people to pray before you even knew what was coming? I love her that much. Long story short, her lungs filled with gunk and she could not breathe on her own. We tried everything before the ventilator. The neurologist came in with EEG. He sat us down to tell us this might be a neurological decline or it might just be her giving out. He was suggesting this may be the end. I sat motionless, emotionless, in utter shock. I am not ready for this. No way. The doctor came in and asked us, given the "fact" that her syndrome will never improve, did we want to intubate or allow her to try on her own? I asked, "Are you asking if we want to do everything we can to save her? Then yes." I am sure they have to ask this question but it really bugs me. Wouldn't I do anything and everything to save any of my children? Why would Reese be any different to me, and how do you know whether she will ever improve? You don't. In fact in the last month we have gotten reports that her EEG looks better than ever. So there. Stop asking me that question please. Today she is still in icu on the ventilator but things are much better. She was diagnosed with mycoplasma pneumonia and we expect her to recover. It's not her brain and it's not the progression of aicardi syndrome. It's an infection and she's fighting her little buns off. I guess what I want to say is...I love her so much. With every part of me. I could not love her any more. Just because she has aicardi syndrome does not make her any less valuable to us nor to God. He wakes people up for her!:) We are not ready to say goodbye. Not today, and not ever. We praise and thank the Lord for giving us another day.


  1. We are continually praying for Reese & your family. What you were saying about syndromes being blamed when the situation is not related & the Dr's basically assuming the worst is so saddening familiar and my heart Just breaks for you all! I hate that this is something you all are going through. I absolutely believe God can do the "unthinkable!" I'm so happy to hear her spine is looking better & the EEG was great, too!! Are you all at pch? Wonder if we have same neurologist- we got the feeling they were encouraging us to give up on Rora too! Nope- we are not giving up on her or your Reese! Jesus said to the little girl," Get up and walk" and she did! Miracle do still happen! Let me know if you need anything, please! <3 Kris & Mike

  2. Kerry, I can't believe what I just read!
    I, too was awakened and couldn't fall back asleep. I began praying for "my son", Zachary and for us to get answers for his pain and breathing issues. And for the Drs to fix him. This was Wednesday after we saw the pulmonologist who scheduled a bronchoscopy for Zachary. So it was on my mind. I thought that was why I couldn't sleep. Little did I know that was only part of it. I also was compelled to continue praying...but my next prayer was for Reese. Not knowing what I was praying for, I prayed for healing. (Not knowing what was making Zachary so sick, yet. And certainly not aware at that time that Reese was suffering from the SAME thing!!)

    Sounds like God made his rounds that night and got his message through clearly.
    Love you all,

    Kim Tainsky

  3. Kerry, Mario, Faith, Mia, and Olivia,
    all of your faith in God is amazing and inspiring! your light shines so bright and many people are witnessing it. keep going, there is a plan in this...

    your light shines the brightest! you are so special and perfectly made! so much love has been passed around to your family these past few days, all because of you!

    (and again, kerry, if you need anything, please let me know!)

    jill b

  4. God is AMAZING and so gracious to constantly remind us of his love. I am delighted to hear that precious Reese is improving! God bless you all and I will continue to pray for you all :-)
    Pam Serr (grandma to Paisley Mix; mom to Jacque Mix)

  5. We are praying for your family. We love you all and if there is anything we can do, please let us know. Reese is such and angel, as are all of your girls. The nicest family I have ever known. Peace be with all of you. Hailie has been concerned for Reese (and of course Ms. Mia).. She wanted me to let you know she is thinking of your family and praying.

    God is good!

  6. Kerry,
    I thank God for you and your family. May He continue to bless and keep you all.
    Thank you for your blog. It inspires me more than I can say.

    In His grace,
    Tim Gilmore


Thanks for taking the time!