Today was one of those days where I hold on to hope, a lot of it. As Zoe is growing - walking, talking, laughing and enjoying life - I always have that dreaded question in the back of my mind, "how will I live without her?" It's a morbid thought, but a harsh reality I've seen so many families face since Zoe entered our lives. Many times I find myself just staring at her, watching her live and breathe.
Today was one of those days that I stood in awe of my 18 month old daughter. She's given hope to families who didn't think it possible; she's taught me how to live better - and bigger; she's inspired hundreds to appreciate each day; she's given me an incredible family whom I never would've known.
Tonight, I watched a preview from an upcoming documentary. And cried. And cried some more.
Families with children born with Hypoplastic Left Heart Syndrome all have one thing in common. Hope. We live and breathe Hope. Most days, it's all we've got.
If any one person solidifies hope for our family, it's Jeni Busta.
Watch a preview from Jeni's upcoming documentary. Be inspired.
For the past few months, we've been gearing up for the 2nd Annual Phoenix Congenital Heart Walk. Some wonderful friends and family stepped up in amazing ways, gave big allowing Team Zoe to reach (and potentially exceed) our fundraising goal for this year's walk. I wanted to share with you some of Zoe's supporters who took extra time and efforts in fundraising for Team Zoe.
Thank you, Tiffany, for requesting donations to Team Zoe in lieu of birthday presents (for your big 3-0)!
Thank you, Delany and Kendall for the tremendous and heartfelt support. These little girls saved their money and began fundraising efforts months ago. Check out the letter Delany wrote to her friends and family!
Thank you, Erin, for hosting a very creative fundraising event. For those of you in the Northwest Valley, please stop by for some Zumba and raffle this Saturday.
Tiffany, Delany, Kendall and Erin are just a few of the hundreds of Team Zoe supporters. We've been so blessed by the kindheartedness and generosity of others. We love and appreciate each and every one of you!
For those of you not on Facebook (yes, there are a handful of you...), I couldn't preclude you from seeing these amazing pictures of Zoe - UNLEASHED at the park.
We learned a few things during this impromptu park stop.
1) Zoe is NOT a fan of ducks - at least not when they are up close and personal. She "quacked" at them from afar, but get up in her grill and she's terrified.
2) Zoe apparently picked up on her mom's germ-a-phobia, which frankly, is fine by me! O.C.D. Away, Zoes!
3) Zoe LOVES the slide.
4) Zoe is quick on her feet! All she wants to do now is walk "oweside".
Each day, I fall more and more in love with this little girl. She's more than inspiring, more than a miracle. It's hard to explain but I'm bursting at the seams with love and pride for my little Zoes.
Well, we're getting close to Fall weather here in Phoenix. Last weekend, it cooled off enough for the Lihns to get outside and enjoy (or at least attempt to enjoy).
On Saturday we had a great time (minus the horrendous tantrum in front of the giraffe display) at the Phoenix Zoo. Apparently after breakfast with Dora and riding the carousel, there was no point in being at the zoo. Zoe had a blast exploring. She's becoming so expressive and loves being out of doors. She's making up for lost time!
(Zoe with her Dora backpack on!)
Dora was much taller than Caleb and I remembered from our encounter at Universal Studios earlier this year. I guess it's true, kids really do grow up fast!
On Sunday, we took the girls to Schnepf Farms. There was so much to do (too much really), and the girls took it all in.
Zoe quite enjoyed picking out her pumpkin. Oh, the expressions on this little girl's face - all within a matter of 5 seconds!
I intentionally dressed the girls in the same dress so I could compare just how different my littles are! Take a look-see!
(Emerson - 17 months, 2009)
(Zoe - 17 months, 2011)
And one family photo which of course the girls refused to look at the camera. They were mezmorized with the field of pumpkins!
And last but not least (if you've stuck around through this lengthy post), you're rewarded with one of the best pictures of Zoe to date! Zoe, waiting for her slice of pie at Schnepf Farms...
Caleb and I have always embraced the idea that "Opportunity is always present in the midst of crisis." The Chinese word for crisis carries two elements, danger and opportunity. No matter the difficulty of the circumstances, no matter how dangerous the situation,...at the heart of each crisis lies a tremendous oppourtunity. Great Blessings lie ahead for the one who knows the secret of finding opporunity wihtin each crisis.
(Wall Hanging in the Lihn House)
When we began our journey with Zoe and Hypoplastic Left Heart Syndrome, I anticipated the negative impact the diagnosis would have on our lives, yet I failed to see all of the Great Blessings we would also encouter. With bad, comes good. With crisis, comes opportunity.
Since Zoe's diagnosis on December 9, 2009 (wow, has it been almost 2 years already?!), our family has experienced both crisis and opportunity.
The crisis is obvious and I've shared that repeatedly. The Great Blessings, however, are easier to oversee. And so, I wanted to point out to you some of those Great Blessings.
Crisis = Opportuniy: Part I
Sisters by Heart
Late last year, I was fortuate enough to help form an amazing organization. The women involved are some of the most brilliant, kind, understanding and strong individuals I know. We came together - out of crisis - and gave birth to an amazing opportunity.
Sisters by Heart is nearly one year old and gaining significant momentum. Our mission is to support newly-diagnosed HLHS families by providing specially-designed care packages and a supportive network of HLHS families. We offer comfort and hope for our warriors and their families. To date, we've touched the lives of over 100 HLHS moms and dads throughout the United States and Canada. We're partnering with some of the top cardiac centers in the country, including Zoe's treating hospital, CHOP, to spread the gift of HOPE.
The women I've met on this journey and work with side-by-side in Sisters by Heart are truly one of the Greatest Blessings I've received through this tremendous crisis. I couldn't be as strong or as successful without them.
If you haven't had an opportunity to see what Sisters by Heart is all about, to see what we're doing to make a difference, to see what Great Blessings we've created from our crisis, please visit http://www.sisters-by-heart.org/and join us in our mission. Know that all of us involved with Sisters by Heart volunteer our time and efforts to spread HOPE and all monies donated to this much-needed organization are used solely for the purpose of advancing our mission.
A great representation of our organization can be viewed in the following video:
Sisters by Heart is just one of many opportunities Zoe has provided me. Check back for "Crisis = Opportunity: Part II" and be inspired!
On May 11, 2010, our family grew from three to four. Our little miracle child, Zoe Madison, entered the world. She was born with a severe congenital heart defect, Hypoplastic Left Heart Syndrome. Fifteen hours after birth, Zoe underwent her first open heart surgery. Her second open heart surgery took place on September 14, 2010. And her final staged cardiac reconstruction in August of 2013. She has half a functioning heart, which was mended by Dr. Thomas Spray at the Children's Hospital of Philadelphia. Yes, we traveled over 2,000 miles to obtain the best possible care.
As small and young as she is, Zoe is the new foundation to our family. She gives us strength and reminds us, everyday, how precious life is.
Please join us and share in our journey. I'm certain Zoe will continue to inspire you, as she has us and hundreds of lives already.
Facing a New Diagnosis of HLHS? Click below to find HOPE!
