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February 8, 2012

Reflecting - The Conclusion

What do I do with all these reflections? 

Thoughts are great, as are good intentions, but they don't do much to help others.  As I mentioned in my last post, I want to actively love these families who have been through so much and in many cases, lost so much. 

This is where I get overwhelmed. 

I pray for these families, but even in my prayers I start to sound like a broken record.  For the record - I believe praying for someone is the most loving thing you can do for them.  To ask God to intervene or act in their life is without question the best place to start when reaching out to someone, especially when thousands of miles separate you.

So as God puts it on my heart to pray for these families and others, I can't help but wonder, "How can I be the tool that God uses to answer my own prayers? What abilities do I have to help the people I'm praying for?"

I recently finished reading, "The Hole in Our Gospel" by Richard Stearns, the President of World Vision.  I highly recommend reading it.  Here's a sampling of the wonderful message in the book:

"It starts with you.  In the end, God simply calls you to be faithful to the things He has given you to do.  He doesn't require you to be a superstar, just faithful and obedient, by praying, loving, serving, giving, forgiving, healing, and caring - doing small things with great love." 

God gave me unique abilities, experiences and interests that are meant to be used for purposes such as these.  Some might call these gifts or talents. By the way... He gave them to you, too.  I'm so thankful for people who have used their resources and gifts to faithfully answer the call and, by doing so, set a great example for the rest of us...

- Jared Broussard - the founder of Heartwaves.org, an online community for all things CHD.
- Matt and Sarah Hammitt - the founders of Whole Hearts Foundation
- Kristine McCormick - a mother who lost her daughter, Cora, at five days of age to an undiagnosed CHD, and is now working with lawmakers to implement new pulse oximetry screening standards for newborns. 

Now, it's CHD Awareness Week.  My Facebook friends are filling their status' with facts, statistics, and government proclamations about CHD awareness.  These are all good things.  Educating people about the number of children born with a CHD (1 in 100) and the number of children who die from a CHD each year (4000 children won't live to see their first birthday in the United States alone) are important first steps in raising awareness.

But what's the point of awareness if there is no action.  James 2:14-17 says "What good is it, my brothers and sisters, if someone claims to have faith but has no deeds? Can such faith save them?  Suppose a brother or a sister is without clothes and daily food.  If one of you says to them, 'Go in peace; keep warm and well fed,' but does nothing about their physical needs, what good is it?  In the same way, faith by itself, if it is not accompanied by action, is dead."

Awareness about statistics is nice, but not very useful without actions to back it up.

I went out on a limb a few days ago.  I discovered a place on WhiteHouse.gov that gives citizens the opportunity to create a petition.  I searched the current petitions for anything related to research funding for CHD's, but nothing was there.  So I created a petition.  We need 25,000 signatures by March 3rd.  If we do this, President Obama's team will review the petition and issue a response.

I believe WE can do this.  I cannot do it alone. 

If you haven't signed the petition yet, please follow this link and be patient.  I'll save my jokes about the federal government messing up something as simple as an online signature for another time.  Your signature matters.

If you already signed the petition, thank you.  And to quote Andy Dufresne from The Shawshank Redemption, "...if you've come this far, maybe you're willing to come a little further."

I'm asking each one of you to personally invite 10 friends and/or family members to sign the petition.  Sharing it broadly on social media sites is helpful, but with a personal email, you can easily include extra information, including a link to this blog if you feel that would be helpful.  Investing a few minutes of time to sign something electronically is a great way to fight the complacency brought on by information inundation. 

I sincerely believe when we answer God's call to be faithful to the things He has given us to do, however big or small, God can and will do amazing things through us.  Collectively, these small things done with great love can make a huge difference!

From a special birthday celebration, to fighting forgetfulness, to use our talents to take action, this was all too much for one post.  Thanks for following along with the thoughts of my heart!

February 7, 2012

Reflecting - Part 2

Over time, the dramatic events of April 2009 are slowly wearing down in my memory.  I don't like it.  I'm not sure why they're slipping in significance, but I guess time and life wear them down.  I feel the need to share with others how huge it was that he survived.  How he had less than a 10% chance of surviving off ECMO...  He endured 70 minutes of CPR...  He spent twice as much time on ECMO as he should have... It's a big deal, really it is!

Who am I trying to convince?

The Old Testament is littered with stories of God doing amazing things for the Israelites: providing food from heaven, giving them victory in impossible battles, taking them across bodies of water, etc. At the tail-end of many of these stories we see them build or set aside some sort of monument or memento to remind them of all that God did for them.  Despite their best efforts, memories faded and the acts of God that were so amazing at one time slowly became common-place, matter-of-fact.  A what-have-you-done-for-me-lately attitude replaced awe and humble gratitude. 

How true for me today.

Our reminder of God's work hangs over David's crib.  A simple hand print and two little footprints framed with the date April 13, 2009. The hand is Abby's and the feet are David's.  We started that day preparing to say goodbye to David.  We made arrangements for Abby to meet her brother for the first time so that when she came to his funeral it might be less confusing.  The Child Life Specialist at the hospital helped create this memento of tiny prints for us.  Rather than saying goodbye to David that day, we witnessed God's intervention in our son's life.  Now, the prints that hang over his crib serve to remind us how far David has come and all that God has done in his life and ours.


Even with this beautiful reminder, the enormity of what God did continues to shrink in my memory as one day blends into the next.  I hate admitting that. 

Talking with Liam's mom, we both want our children to understand what happened.  We don't want our sons' stories to be matter-of-fact to our other children.  My Uncle Franklin was killed in a car accident when he was 18 years old.  My mom was 14, so I was a long way from being born.  However, his death was matter-of-fact to me growing up - "My mom's oldest brother was killed in a car crash before I was born, so I never knew him."  That was the extent of my knowledge and interest in it as a child.  It wasn't until Abby was born that I asked my mom about how he died.  Then it became real - real to me that my Granny and Daddy Hob lost their oldest child after he spent a week in the hospital after the accident.  Hearing the story, I internalized it.  It was and is different now. 

David's, Liam's, Leyda's, Jaden's, Scarlett's, Lillian's, Joshua's, Ewan's, and Owen's stories are incredible each in their own right, and these are just a very few of the children I've learned about since we started this journey with David.  Each child has a story too big for words to describe.  We are called as Christian's to love one another.  For me answering that call to love these children and their families means to invest my time and energy and emotions in their lives - to remember them and what God has done for them and through them.  I pray that none of their stories will ever be matter-of-fact to me.  God continues to do big things for all of their families and I don't want to take that for granted...

Reflecting - Part 1

We attended a birthday celebration for a little boy named Liam this weekend.  There were many colorful balloon, lots of family, little children taking it all in but not entirely sure of what was going on.  Family members reminisced about earlier times with dampened smiles on their faces. 

This was no ordinary 3-year old birthday celebration, for sweet Liam passed away when he was only 3 months old from complications with his broken heart.  We celebrated Liam's birthday by his grave, along-side his family, by releasing festive balloons into the air in his memory.  We celebrated his life, reflected on his time on earth, and how we were all changed by his sweet presence in our lives for those few months. 

Justin and I first met his parents when David was in the hospital as a baby.  We saw his family in the waiting room, passed them in the hallway, and saw them coming and going from the room adjacent to David's in the CHSU - the ICU for heart patients.  We overheard snippets of their conversations with the doctors, a few of which are seared in my memory as pieces of David's story.  Liam finally got to go home with his parents on April 13th, the day our little guy surprised us all by surviving ECMO - two very different ranges of emotions from two different heart families on the same day.

Liam was doing well at home.  He came to the hospital on a Thursday in May for a swallow study.  When he was admitted that afternoon for oxygen desaturation issues, it seemed to be minor.  I'll never forget his mom's delight at how well he'd done in the swallow study.  He took about 20ml of formula from a bottle and she was extremely excited about his progress.

As Thursday turned into Friday, and then Friday into Saturday, Liam's oxygen numbers weren't improving.  By Sunday, Liam went into cardiac arrest.  The team of doctors were able to get him on ECMO, but there was too much damage.  Liam passed away the next day on Monday, May 18th.

Our journey through HLHS is intertwined with Liam's family.  We consider it an honor to get to celebrate his birthday with his family.  What I took away from Liam's celebration Sunday is how easy it is to go through each day hearing about some amazing story or some tragedy, a baby who receives a heart transplant at the 11th hour or a baby who dies during childbirth, and miss completely the significance of the events.  I'm completely guilty of it.  Perusing the status updates of my "friends" on Facebook, watching 24-hour news channels, simply getting on my internet homepage, I am completely inundated with information.  I'm not quite the old fogy who says "In my day, we didn't have the internet and things were better!"  (please read that in your best old person voice).  But we often miss out on something deeper, more subtle, less flashy, and completely real by submerging ourselves in our online world.

What we miss are real people and real stories of amazing triumph and loss, none of which we could possibly take in in the seconds it takes to read a sad or amazing status update before scrolling down to the next one.  Submerging our lives into Liam's family's, if only for an hour at his grave, reminds me that yes, these stories are amazing and incredible and sad and tragic, all in their own right. Family's are forever changed and scarred. I never want to forget the significance of these events. I don't want to take them for granted...