Leah's TV Interview

A story about Leah will be aired tonight on the 5:30 KOIN 6 Newscast, under their Health section.

You will also be able to view this story on their website at http://www.koinlocal6.com/content/healthwatch/default.aspx
or so I'm guessing. If I get the link wrong, I'll repost it.

Tualatin Times Article
We also got interviewed this week for the local paper:
http://www.tualatintimes.com/news/story.php?story_id=124408039674470200

This morning Leah slept peacefully during the entire interview as she'd received extra seizure meds before they arrived. It's been a quite and restful day for mom today, as Kyla is still overnight at Grandma & Grandpa Jarmer's house. Luke and I will be heading back to our Neurologist's office today to go over the results from the Video EEG (seizure study) which she had yesterday. It was honestly a harder study for Mom than it was for Leah. Leah just did what Leah always does...have many MANY seizures. So many in fact, that the nurses working during the test kept looking so concerned and saying, "I've been doing this 15 years, and I've NEVER seen a patient has as many seizures as Leah - and yet she's still here!" The miraculous part is that she is surviving inspite of her condition. This seems even more miraculous than complete healing in my mind, as it must bring God so much glory.

The hard part for Mom, was that it was the first time since being in the NICU where my entire focus, was 100% on Leah and only on Leah. My job was to push a button each time she seized, and the button was pressed over 75 times while we were there for less than 5 hours of the study. The nurses comments about Leah's seizure and her condition's severity reopened the grief, which although experienced daily on some level, was experienced to the greatest depth yet during and after the test. With Kyla gone, and Luke caring for Leah, the tears and the full body pain came on so strong as I had a few moments to myself last night. This isn't someone else's life...this is mine. This isn't someone else's pain that I'm watching from afar, this pain is mine. Few others can relate and truly empathize with the depth of hurt, and the fear of what is still yet to come, and the intensity and realities of caring for a disabled child who isn't expected to live long. In my mind and heart, based on the doctor's expertise, Leah has been dying since November 12th when we received her diagnosis. This journey has been long, and full of so much grief, but also the joys of seeing Leah surpass the odds set before her.

Our family was also blessed yesterday by a large cleaning crew, who exemplify the true body of Christ, as these ladies cleaned my house with more love than is imaginable! The list of the chores they accomplished on our behalf in merely one day amazed me! With beautiful flowers left in every room, it was exactly what I needed to great me after the hard day at the hospital with Leah! Our home is cleaner today than it's ever been, and the feeling of being cared for and supported have now been experienced in an even deeper and more tangible way!

Last night Leah had "tummy time" while mom and dad chatted about her and attempted to form future plans for her care. We decided to only focus on next week, no farther as there is too much unknown. Yet, while we watched her, I felt the deepest sense of pride. I feel like she's a gold medal Olympian, and I'm the proud mom cheer her on as she received her medal. Despite all she can't do, when you consider her lot in life, I am in awe of what she can! She can lift her head up off the floor, move her head from side to side, pull her knees up underneath of her, push her feet against your hand and scoot forward. She is stronger than I, and I fully know that! Her inward spirit must be comparable to that of a great hero! She is fighting so hard, and with such grace and beauty, as she continues to stay with us. Her purpose here is not complete, as she is teaching us daily, and melting hearts near and far.

~ Those who suffer have the right to minister. Only they know the deep painful longing of an aching heart!