Just this one thing…
Posted on December 23, 2015 by admin No comments
So what have we been up to? Well, let’s start with the foundation. We’ve had our most active year to date, and kicked off our first ever Tesori Family Foundation 3-21 Charity Golf Classic this fall at Atlantic Beach Country Club in northeast Florida. We had the most incredible time raising money for our Buddy Baskets program that provides new goodies for all families with a new little one at home rockin’ that little extra chromosome. A huge shout out to all who participated!
Speaking of Buddy Baskets, we’ve welcomed about another 10 little nuggets into our Buddy Baskets family since we last posted with our most recent basket delivery coming yesterday to sweet baby “C” and her family (pics below)!
So what is this Chiari Malformation thing? Well, it’s really just a structural defect in the cerebellum (the brain) and spinal cord. These defects happen during fetal development yet it is often not recognized (if at all!) until adulthood. To get a little technical, basically what happens is the lower part of the cerebellum (brain) extends in to something called the foramen magnum (the opening God made for your spinal cord). When that little opening has to share space it never intended to share with your brain, there’s a tremendous amount of pressure placed on the spinal cord limiting the ability for the cerebral spinal fluid to pass through. Basically think of your spinal cord as a hose and it’s being squeezed sooooo tight – except what’s inside and not flowing properly is the ever important cerebral spinal fluid. CM presents itself with symptoms such as migraines, dizziness, muscle weakness, numbness, vision problems, and problems with balance and coordination. I know… fun, right?
For those of you that know me, you know that it takes a LOT to get me to a hospital. That June 18th night I knew without fail that something was wrong and I’m so thankful God made it abundantly clear, thus causing doctors to order a gaggle of tests ultimately identifying some truly messed up junk in my brain, neck and spine (“messed up junk” and “gaggle” are medical terms!). We’ve spent the better part of the last 6 months meeting with neurosurgeons and doctors and specialists and after much medical intervention, information seeking and a whole lot of prayer, Paul and I have decided to NOT have brain surgery at this time. While my severe migraines continued for about 3 months nonstop after the event in June, the symptoms I’m experiencing aren’t typically resolved by brain surgery. We’ve been exploring various alternatives and I remain under intensive doctor care with a tremendous team of very well-respected and intelligent medical professionals. My pain is being managed as best as possible and we’re working very closely with these medical geniuses to tackle this little interruption in our lives.
I say all of that to say this: we’ve been busy. To those of you who’ve joined us on this journey, thank you for your prayers and love (and your calling in of medical favors and rushing of test results and demanding your genius husband review them personally — you know who you are!). We’re eternally grateful for all the calls, texts, offers to help, etc. We truly do have the greatest friends and family ever. For those of you we didn’t tell, please don’t be offended. It was a lot of information to work through and we were (and still are at times!) trying to dissect every new test result with the best of the best and make the best choices we could make. We appreciate your understanding.
So how does this relate to this blog post? I’m finally getting there. It was late July. Paul was on the road. My head was pounding. I’d been vomiting from the migraines for a few days. Work was busy and Isaiah’s schedule was, well, what it always is… busy! I’d had yet another round of 8 MRIs/CT scans on my brain in the previous days and was waiting on this next group of results. My arms and hands were tingling a little (just for fun, during this neuro journey, they’ve also found that I have severe carpal tunnel syndrome). I was in the car on I-95N driving Isaiah to one of his many amazing physical therapy appointments. And in the car, I was having a little pity party. I don’t have them very often (I mean, who has TIME?), but I was having a full-blown, woe is me, pity party. I remember very clearly thinking as I passed some really bad drivers near the JTB exit (this will make sense to everyone local) that I just couldn’t understand why God thought I could handle all of this. Alone. Why alone? What had I done to make God believe that I could juggle all this STUFF? Why, God, are you giving me all this stuff to manage? I can’t do it. I simply can’t do it all. If I focus on my health, I’m not focused on being a good wife to Paul or a good mom to Isaiah. Work fails. If I focus on work, all my other priorities fall behind. If I focus on Isaiah, what about my marriage and my health? Why is God trusting me with SO. MUCH. STUFF????
And then it happened. Now stay with me… don’t worry. I didn’t hear any actual voices and nobody whispered in my ear. The traffic didn’t part and I didn’t have an angel land on my steering wheel. But I VERY DISTINCTLY heard the Holy Spirit in my soul whisper: “I’m not asking you to do it ALL. I’m asking you to do the one thing. One. Trust ME.”
And there it was. God isn’t asking me to do it all. I don’t have to be the perfect Mom. God isn’t calling me to be the perfect wife. Or boss. Or even medical patient. He’s not calling me to be the perfect friend. Or the perfect daughter or sister. He’s asking me to do this one thing: trust HIM. Period. That’s it.
Immediately a weight was lifted. The drive up I-95 suddenly became less stressful. It’s not ME with all this stuff to manage. It’s God. He removes these burdens for us. I was reminded of what God commands in the bible in Isaiah 41:10 (one of mine and Dowd’s favorite verses!):
So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.
Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the LORD your God will be with you wherever you.
Have a very merry and blessed Christmas season celebrating the birth of our savior and the promises that come with that. We look forward to sharing more frequently with you again in the New Year!!