Here is a recent video about a study done on my disease - Interstitial Cystitis. I'm not quite sure what I think about all of this information yet. I guess I just really want to know more. I can't base anything off of a two-minute video from a local news station. I want facts, which shouldn't be too hard to find since the research is being done here at OU (how awesome is that?!). At the very least, this video gives validation to my pain and to the pain of my IC Sisters out there:
News 9 - IC
Also this week, I was diagnosed with another pain disorder. Again, more fires (and with IC, I literally feel like I am on fire, ya'll). I find myself so incredibly discouraged because I'm unable to truly care for myself right now - with Henry and Lucy needing non-stop, round'-the-clock care. I also can't seem to find the right set of doctors to listen to me (I have some fabulous doctors, but the ones I need to help me the most aren't able to, aren't willing to, or don't know how much I need them to step in and step up).
I have always been a strong advocate for our Girls and I feel like I'm a strong advocate for Henry (and for Conner when needed). That's the Momma Bear who protects her cubs and fights for what's best for them. This week though, with the new diagnosis and the extreme pain that I am in, I just want to give up and give into the pain. Meaning, I just want to stop fighting and stop advocating for myself and just curl up and live in pain instead of finding better treatment. What would that look like? IT would look like me cringing, waddling to and from places, being late more than I am even now, crying more often bc of pain, not being able to get ready/shower bc of pain . . . it would mean that I could ONLY care for the bare minimum in life . . . my children and their many needs. I wouldn't have time or energy for anything else. Most nights I am not even able to make dinner - I can only sit with a heatpad on my back and ice on other areas. That's where I am this week. Maybe it's because I have been a health advocate for TEN freaking years, and I'm just TIRED of it. Or maybe it's just hard to fight for myself. Please pray that my heart will be encouraged. I can't even ask for any other prayers right now because pain has taken over my ability to do most anything but just survive and be there for my family this week.
HENRY - I want to thank ALL of you who prayed for Henry last week. He had an extremely rough week with his behavior, and we aren't sure why, of course. Mike and I were just dreading Friday and the EEG. It's sensory-overload for the average adult, much-less a child with sensory issues! Ya'll, Henry was a CHAMP. He did better than Mike and I could have hoped or dreamed, and we know much of that was due to your petitioning the Father on our behalf. Thank you for praying for Henry to feel safe and calm. We had the best EEG Tech that we've ever had (and believe me, we have had MANY over the years), and they even had stickers from Henry's favorite movie. Sherman and Peabody stickers were actually all they had, can you believe it? God was so good to care for each detail, and Henry truly did earn his hot-wheels toy that day!
We do not have the EEG results, but we should get them next week. Once we get them and once we are able to process them as Henry's parents, we will share with you what we feel led to. We so want to be open in our journey, as we know the Lord has called us to this so that ALL of us can learn more about suffering and the lives of special needs families/the lives of people who have buried a child. We also want to protect little Henry and his privacy too, so if we don't share much, it will be for a good reason and we appreciate your understanding.
Henry wasn't able to start school last week, but we were able to meet his home-bound teacher, and she is wonderful!! Henry was extremely nervous and shy, so he hid while she was here in our home. Please pray for confidence and that he will follow the rules. He has so much work to catch up on. It will be a challenge for me as well to add the additional schoolwork to our everyday routine (he will be doing everything that they are doing in the classroom and not just homework). I'm not sure what this will look like or how it will turn out, but I do know that I REALLY need the Lord to step in as I am so weak.
A few fun things and a dream . . .
God provided us an opportunity to briefly share about NKH this past Friday evening on KOCO with Damon Lane. We were helping the Oklahoma Blood Institute promote one of their blood drives as well, and since both of the girls have received blood transfusions, we of course are huge advocates! Mike is a super-duper-super-star-awesome-blossom donor and even has a special pin for donating so much (really, I kid-you-not). I loved that the boys could watch us serving in this way and that they were able to see other people give blood too, knowing that it goes to people like Ellie Kate and Lucy (I tried to give, but as always, I was too anemic to do it). Thank you, Tara Scott for letting us be a part of it all (as you can see, all three of the kids were eating it up!)!!
We've been dreaming of moving, as I've mentioned in other posts. Henry begs us to, and honestly his behavior changes once he walks through the door of our home. He has been greatly affected by the bad memories that this house holds, while the rest of us see both the good and the bad. I do admit, when it's late at night; when it's quiet and everyone is asleep, it is desperately hard not to lay in my own bed, and picture Ellie Kate's last painful night here on earth, where she slept between me and Mike. That's where she took her last breath that Sunday morning, December 23, 2012 - right here, in our home, in our room, in our bed. We WANTED it that way because we WANTED Ellie Kate to be as comfortable as possible, and she was, right here in the place where she felt the safest. Sometimes, however, this is overwhelming for me and it gets overwhelming for Mike and the boys too.
So, we've seen this amazing house that we would consider over-the-top for us (we are pretty simple, if you haven't figured it out yet), but it's in the perfect area with the perfect schools (still Moore schools), still close to my parents (for the extra help that they graciously give us), plenty of room for home health nurses, plenty of room for all of Lucy's medical equipment, plenty of room for all of her supplies (most of which are getting dusty in the garage), an actual office I can use for Hope Link, tile floors for Lucy to use her walker with, walking distance to the school for the boys and eventually for lucy (with me, of course). Anyways, I joked on FB that we would need to win the lottery to be able to get that house. But then I was reminded about how sweet dreams are. Really and truly, aren't they sweet? Big dreams and little dreams, all placed on our hearts - it's so fun to imagine and hope; it's a gift from the Lord, even if our dreams don't come true!
My dreams aren't coming true right now, of that I am sure. I do not dream of living in severe pain of every kind (physical and emotional), but I am not alone in my pain. God is overseeing it and WILL use it for His glory and for my good. I have an incredible husband who loves and serves the world so well (including his family). And even in my pain, I can lay here and dream about happy things instead of dreaming of how I'm going to put out all of those fires . . .
-- Ryan
