Taylor was diagnosed with a very rare auto-immune disease called
dermatomyositis on Dec. 13th, 2009; while there is not a cure,
remission is possible with early and aggressive treatment...
This is Taylor's Mission to Remission.


Tuesday, May 18, 2010

Breathe and Run...

I had another post written…I decided not to put it on the website, the situation is a lot sweeter after I am regenerated with some sleep and give it a few days to keep things in perspective. What an emotional rollercoaster we are on, or maybe just me ;) We were in the emergency room just a week and a half ago on a Sunday night, actually it was Mother’s Day night…Taylor spiked a fever late in the afternoon with a phlegmy cough and cold…long story short, she needed fluids, she got dehydrated and the ER doctors at Children’s gave her a stress dose of steroids as well. On the drive up she was completely lethargic, awake, but just barely and very uncomfortable. You could literally watch the life come back into her body so quickly over the course of our six hour stay. We caught up on the Sunday night sitcoms and colored and read a bunch. She didn’t fall asleep at all. Chest X-rays were clear, inflammation markers were in check – which is awesome, but infection markers were up a little, but nothing more than suggesting it was an upper respiratory infection… we got looks from the Dr.’s and nurses as we usually do, at our casual approach to being in an ER, they won’t say anything, but we just try to be as happy as we can… there is no point in being otherwise. We left that night at 1 AM, and you guys, she walked out of there like we were leaving the mall… saying good-bye to all of the nurses, and smiling because she felt so good! I just can’t boast enough about this little girl’s outlook! She’s just amazing!

The greatest Mother’s Day gift I could ever ask for (besides a cure) – Taylor looked at me shortly after they put us in the room and said “Mom – you’re the best Mom in the whole world…because you take me to the doctor when I need to go, so that I can feel better.”

There was an anonymous donation left on the Firstgiving website for $100 – and to that person, I want to say thank you from the bottom of our hearts!!! We are so, so touched and blessed and we just hope that we are able to give back and somehow enhance someone else’s life just the same as you have!

The running program is coming along! It feels so good to be back on the treadmill. This weekend was the Anne Hope Run/Walk at the Milwaukee zoo…I ran the 5K with the rest of the “Farmer’s Fighting Back” group. Our friends lost their father/uncle several years back to Melanoma, and have formed this amazing group (over 70 people) that participate and raise money every year for this charity (this year topped $5K just from them alone!) I was so grateful the Waldron’s invited me along…it was rewarding more than I can explain and it gave me a taste of what I want to accomplish for the Cure JM Foundation. While I didn’t run like the wind…I finished the 3.1 miles without stopping and beat my current pace for that distance by 4 minutes…that was quite an accomplishment, for me at least.

I follow another post that is linked on this page of Mielle’s mom…Mielle is being treated by Dr. Pachman as well. Her mom, Suzy, also trains and runs to raise money for Cure JM…and I hope she doesn’t mind me stealing this clip from her blog… it’s the response of another JDM mom in a discussion on anxiety…I look to her more than she knows for strength…

"Of course. It is so damn hard. The not knowing, the anticipation, the hope, the not wanting to go into despair, not wanting to be TOO hopeful either because falling off the "Hope Wagon" is awful. It is hard to find any place to rest. I think the Buddhists want us to find that middle ground where we hold suffering and joy as equal. But I am not very evolved.breathe and run, I guess that's the best we can do for now."

Wow. Wow. She really, really nailed it. It certainly is hard to find any place to rest in all this. I am afraid of being too hopeful, and simultaneously afraid of falling into despair. Clearly, I am also not very evolved...

But I continue to breathe and run, breathe and run, breathe and run....

Thank you Suzy…if you read this…you nailed it as well. On every run I think of the finish line, and seeing Taylor waiting…I still see her as the healthy little girl she was six months ago, and I too just breathe and run, and breathe and run…