Echo of Hope

As I read our dear friend Laurie (Newell) Morse’s Christmas wish for Baby Schultz on Give Forward I’m reminded of how lucky we are to have such strong network of friends and family who’ve been so supportive during this whole ordeal.

Over the last few months, “luck” has taken on a whole meaning to me. I’ve heard from many people that I’m very lucky.

You’re so lucky…

• …that you live close to Boston and great medical facilities.
• …that they caught the heart defect so early.
• …that there’s a surgery that can help.

When people first started telling me how lucky I was, I wanted to scream. How is having a baby with an extremely complex heart defect lucky? How is having in utero heart surgery lucky? How is having to have conversations with doctors about termination, mortality rates, palliative care, and open heart surgery within days of birth lucky?

I felt like one of the most unlucky people in world.

But if there’s one thing I’ve learned through this all, it’s that you’ve got to play the hand you’re dealt.

On September 28 my life changed forever. While I don’t know what the future holds, I do know that I am, indeed, lucky. I’m lucky because there is HOPE. I’m lucky that they found the heart defect while they could still intervene to try to change the outcome. I’m lucky for all the support we’ve received from family and friends. I’m lucky that we live so close to Boston. I’m lucky that we have the means to give Danger the fighting chance that he deserves.

So many families facing this same diagnosis live all over the country. They have to travel to Boston for surgery and then uproot their families and move to Boston for months before and after birth.

They have to leave their jobs, their families and friends, their support networks, and in many cases they are separated from their partners and other children who have to continue to work and to go to school. All the while they have to deal with the financial burdens of travel, lodging, food, insurance co-pays, and more. All of this on top of the stress of having a very sick child in the hospital. I can’t imagine going through what we’re going through and having to do it in a city where we don’t know anyone, living out of a hotel room.

So during this holiday season as you’re planning your own personal and corporate giving, please consider donating to an organization near and dear to my heart – The Ellianna Grace Foundation. This is a grass roots foundation started by a few families who have traveled to Boston for this surgery. The foundation provides much needed financial support to families to travel to Boston for the surgery and birth, giving these families the HOPE that we’ve been given.

You can learn more about the Ellianna Grace Foundation by clicking here or, donate by clicking here (to donate online, simply click the “Please Donate” button in the right hand column on the Ellianna Grace Foundation website). All donations are 100% tax deductible.

You can bring hope to a family that isn’t quite as “lucky” as us.