Tragedy in the Midwest

This last week has brought a great tragedy by way of devastating tornadoes to the midwest.  So close to home, Jopin, MO was hit last Sunday, and the town of 50,000 has literally been obliterated.  The death toll was at 123 last count, and they are still doing search and *rescue*.  Schools, homes, businesses and the hospital have all but been wiped out.

 My heart was hurting and I was crying while on the elliptical the other night watching ads across the TV screen asking "Have you seen this person?" with  phone number and brief description of a family's loved one's last known place on Sunday-and whom they have yet to find.  A 16mo old child ripped from his Mother's arms,  a husband and his two children at the Home Depot, a high schooler playing basketball with a friend.  I cannot watch the television anymore. 

Then today, the sirens sounded at our house, funnel clouds spotted all over the KC metro area.  My kids spent an hour huddled under their art class tables, or in a hallway.  I, watching the TV and texting reports to my sister and her son stuck in a building at the zoo while on a field trip,  to my step-mom stuck in a stairwell at work, both listening to the sirens all around them, and not knowing what was going on.  After what had recently happened in Joplin, everyone was anxious and scared that we would be next.  Those of you who don't live where tornadoes occur, drills are done as early as pre-school age here, most all of us have homes with concrete basements and little tornado boxes packed and down there ready for us with water, tennis shoes, a flashlight and weather radio-of course ours has a TON more, but to each their own.   But being prepared, does not make it any less scary. 
Though today's storms not nearly as bad as what tore through Joplin on Sunday, a small town near us-Sedalia, MO, was hit by one-no loss of life-but again, loss to homes, businesses and schools. 

The response to Joplin by friends and family members to help has been amazing-my sister Kate, an EMT with KCFD loaded a bus Monday evening headed there to lend a hand-along with 5 additional ambulance crews and numerous engine companies.  One of KCPD's Tactical Teams and a Traffic Enforcement team have been there all week-the reports coming back from a friend, and a wife of one of the Traffic guys, is just gut-wrenching.  A dear friends husband is packed to leave with his Tactical Team tomorrow and is humbled at the thought of being sent to help these people and though is leaving his family-hopes to help provide some comfort to those in need-in his words, he "only wished he could have gone sooner".  Andrea is proud of you Troy-and I to be your friend!  An officer who works for Brian called us Sunday night, and was already headed down to lend a helping hand-something Todd is known for!  And I've only named a few of the people I know who are down there helping this town dig out and find family members and hopefully in all that ruble-maybe a miracle survivor. 

Please keep the town of Joplin, Missouri and it's residents, in your thoughts and prayers in the coming months as they try to come to terms with the tragedy Mother Nature bestowed upon them this sad day in May.  Please pray for their peace, and their survival will to rebuild and move forward.  Please keep those sent to help in your thoughts as they perform the daunting task of trying to find survivors, though know they will most likely be giving families the much needed closure of losing a loved one.  Please donate blood over the summer to help replenish the amount our local banks have sent down to Joplin. 

And most of all-tell those that you care for how much you love them, how much they mean to you, and how you would be lost without them. 

For we are never promised tomorrow.

We only have today.

Make it count.

Heart Walk 2011

Ethan 1 hour post-op open heart 6/2005

Ethan 6 days post-op open heart 6/2005

It's that time of year again, the AHA Heart Walk is right around the corner.  We will again be walking with CHD Families, in honor of all our kiddos affected by congenital heart defects. 

This year is different for us though, as Ethan has always been a 'heart kid' without the typical problems of a 'heart kid'.  The majority of his struggles in the past have been because of his Chromosomal anomaly 18q-.  Yes, he had open heart surgery at 15 months old, but came through with flying colors and was home 9 days post-op, meds for a few months, follow ups for life, but nothing like the struggles some of the kiddos I know have gone through. 

This year is different-Ethan is in heart failure and no one knows why.  His pulmonary valve is leaking greatly, causing the majority of the failure.  This valve was created 5 years ago during his open heart repair by opening his pulmonary arterty to allow for greater blood flow-due to the size and constriction it was causing, and a 'flap' was made to work like a valve.  We were assured it would continue to work for Ethan well into his late teens-he is almost 5 years out from that surgery and it is already failing. 

So why is this walk even more so important to us? Because all the funds raised through the CHD Families team members will stay right here in KC to help figure out why something like this happened to Ethan.  To hopefully help answer some of the questions all heart parents have-

why? 

how?

and can it be fixed?

Unfortunately for too many parents I know, those answers will come too late.  Too late to help their child.  But it's not too late to help so many others.  Please consider making a donation to help answer those questions, because though too late for some, it is only with those answers that we will someday be able to put an end to precious lives lost to congenital heart defects. 

No donation is too small-feel free to mail a check made out to the AHA to me-email me and I will send you our address karawley03@yahoo.com

or donate on our online page at:

http://heartwalk.kintera.org/kansascity/ethanrawley

Thanks to those who have already generously donated-Grandma Sharon and The Clapp Family-thank you so much for helping us reach our goal!!

I included some of my favorite pics of our boy below-all of these were taken by a dear friend Brandi Wisdom of BNW Photography-friend her on FB and see all her gorgeous work!  The very last picture was taken at our home-Ethan had been in the hospital and had just come home-she didn't want to mess up his routine, so she and her husband packed up the stuff they needed and headed to our house!  The middle pics were taken in the playground in front of Children's Mercy because Ethan was IN the hospital at the time we were scheduled to have our family photos taken, and instead of rescheduling-she packed up her stuff and headed down there to take our pics.  She has always been so patient and wonderful with all my kids-but especially Ethan and I just had to share these with you. 

How can you look at any of these pics and NOT want to donate to help him and all the other precious kiddos out there just like him?????

Ethan Charles Rawley Oct 2010

Ethan laughing at his Daddy hysterically Oct. 2010

FAVORITE. PICTURE. EVER.
Nov 2009-taken by Brandi Wisdom BNW Photography

Ethan-Nov 2009 (taken outside Children's Mercy-Ethan was hospitalized
and Brandi came down and took our family pics-hence the IV in his hand!)

Christmas 2007

Home Sweet Home-tweet Jesus!

Carepages won't let me post the update for some reason-so it's on here! 

We will all be sleeping comfortably in our own beds tonight, no more cage crib for Ethan, recliner chair for Brian, or couch bed for me!! 

Got home late this afternoon, after much discussion of taking Ethan to the cath lab to look at his pulmonary vessels and valve.  After the Anesthesiologist put his stethoscope on E's chest and listened for about 2 seconds he put the kabash on taking him to the cath lab!  Ethan has to go under anesthesia for a cath, and only a handful of anesthesiologists at Mercy do the cardiac kids and only when they are in tip-top shape and it's not an emergency.  The team was thinking they might keep him through the rest of this week and get him in the cath lab before letting us go home.  The problem is that since he has been on Lasix for the last week, his lungs sound really wet-he is coughing to move stuff around, but Ethan is not strong enough to have a productive, clearing cough.  Hence-not safe to go under.  We are ok with that and happily took our little guy home.  He will sleep on oxygen for the next few nights-as we are starting to see some swelling in his feet and slight color change again.  We will watch him closely and we see Dr Kaine again in two weeks for an echo and ekg and overall assesment of how the home meds are working.   If needed, we can just put the van on auto-pilot, cause it sure knows its own way to the Mercy!  I'm half tempted not to unpack a darn thing.  Kinda like my theory of going to clinic-if I pack a bag, he doesn't get admitted, if I don't-well, you know that story well by now!!

This is short and sweet, cause everyone here but Brian and I are in bed, and we are headed there shortly.  I want to say Thank You to all our family and friends, our neighbors and the KCPD Care Team-you all helped make a very stressful situation much less so!  Most kids take a village to raise, this one a country-and you've all been a much appreciated part of that by helping out with meals, the other kids, coming to hang out with us at the hospital, phone calls and emails of support and of course lots of prayers! 

We love you all very much!

Good night, sleep tight, I know we will!!!