Taylor's Gift (34 page)

The phone call was brief and not nearly as difficult as Dueene had expected. The connection between the families was made. For a few weeks after Dueene called, Ashley texted Tara occasionally, and Tara texted back. The Storches told Ashley they hoped to see her one day in Texas. Ashley wanted that too. She still couldn't understand how Taylor had died and donated her cornea so she could see again. But she could understand the pain of a mother losing her daughter.

As Ashley's twenty-first birthday drew closer, Dueene knew there would be difficult decisions for her daughter in the year ahead. But now that her headaches were gone and her attitude had improved, Ashley was able to make great progress with her therapists and the other professionals who were teaching her how to live independently. In the months since the transplant, Dueene had grown more confident that one day soon Ashley would be able to lead an independent life.

Taylor's gift had given them both a future.

And that was a gift they could enjoy together.

Todd

Currently, only four in ten adults in the United States are registered to be organ donors, yet there are more than one hundred thousand people awaiting an organ transplant. How long they will wait depends on a number of factors, including how sick they are, their blood and tissue types (rare types generally have to wait longer for matching organs to become available), and how long they've been on the list. Whether the wait is a few weeks, or as in Jonathan's case, eight years, the wait is too long. In the best-case scenarios, these patients are in medical limbo waiting for an organ so they can resume a full life. In the worst cases, they pray just to survive.

While awaiting a transplant, patients can have mounting medical bills that put pressure on their personal finances. Many have to divert their resources from other necessities such as housing, or even medications, to pay the bills they've incurred. Even with medical insurance, the lifetime maximum for many policies is a million dollars. For patients who require ongoing tests and treatments, that figure is too low. Patients can easily exceed the lifetime maximum coverage cap, and then they have to begin paying out of
pocket for additional treatment. The longer a patient must wait for an organ, the greater the potential financial crisis is for them and their family.

During the wait, a patient's health only worsens. It's one thing to receive a new heart as soon as doctors recognize the need. It's another to physically waste away, hoping you will still be a viable candidate for surgery when the organ finally becomes available. Many people on the list die while waiting. Even those who live long enough to receive a needed organ often suffer additional medical complications due to the long waiting period, which makes their recovery that much more difficult.

Deteriorating health and financial situations can also lead to relationship issues. Marriages become strained as the couple deals with the emotional, financial, and physical consequences of a long-term illness. Relationships with friends and family members change as the patient requires more care. Patients move from being an equal in their relationships to being the needy one. Lives are placed on hold as patients quit jobs or school, find new childcare because they can no longer care for their children, and withdraw from public spaces and social situations where they risk contracting a virus. The longer someone waits for a transplant, the more likely the emotional and relational strain will lead to depression or a desire to just give up.

At the same time, those who have donated a loved one's organs face their own anguish, just as Tara and I did, as they try to deal with their loss. We were blessed to have a strong marriage and a community that surrounded us and loved us—even when we were hard to love. We know not everyone has this kind of support. Whom do patients turn to when they need assistance? Who lets them know it's okay for a husband and wife to grieve differently? Who reminds them there is purpose in the pain?

Whether it is a patient awaiting an organ or a grieving family who donated organs, their faith is often shaken by their circumstances. At Taylor's Gift Foundation, we want to wrap our arms around
these individuals and help them through these bleak days, pointing them toward a brighter future. Though the foundation initially set out to educate youth about organ donation, we realized there were other needs—education and awareness, as well as financial and emotional support. Very quickly, we further clarified the purpose of Taylor's Gift Foundation to encompass all that we're doing.

Our mission is increasing organ donation to Regift Life, Renew Health, and Restore Families.

We've spoken to thousands of people in numerous states and helped organize grassroots events across the country. Working with our creative partner, Firehouse Agency (http://www.firehouseagency.com), we've created award-winning television commercials and billboards that have been seen by millions. We've provided scholarships to high school students and sponsored organ donor recipients to give them the opportunity to ride on the Donate Life Rose Bowl Parade float to help raise awareness about organ donation. We've comforted grieving parents and helped draw attention to individuals who needed lifesaving transplants.

As I write this, we've been doing this for only about two years, yet we've already seen the needle move. In that time, more than two million new organ donors have registered in Texas, and more than thirteen million have registered across the United States. We know the work we've done has played a part in that increase.

But perhaps our biggest accomplishment is that we're starting to change the conversation about organ donation. It's not about death; it's about life.

Most Americans have a life insurance policy that, upon their death, leaves financial means to help their family continue
their lifestyle
. Organ donation is the only gift we can leave that helps people continue
their lives
.

You may not need a transplant today, and I hope you never will, but the chances are good you know someone who already has, or who one day will. The waitlist can be greatly reduced (if not eradicated) if enough people register. But as a small family foundation,
we can't do it on our own. We need you to register—and then talk about this issue with your friends and family. Sometimes it's as simple as saying, “Do you have life insurance?” and after they respond, telling them there is another gift they can leave that may be more important. Organ donation doesn't cost anything; you can't take your organs with you, and it saves lives when you leave them here.

More importantly, a conversation about what you plan to do when you die forces you to examine how you're living. Taylor wasn't an organ donor advocate. We didn't sit around our dinner table at night and discuss this issue as a family. Since we didn't know Taylor's explicit wishes, we decided to donate because of who she was and how she lived her life. She had a kind and generous heart and always took care of outsiders. We knew without a doubt this was what she would want.

It was her life, not her death, that led us down this path.

Just like a Boy Scout who goes to a campground and leaves it in better shape than when he arrived, Taylor left the world a better place, not only for her organ recipients, but also for their friends and families.

I've had a lot of time for self-reflection over the last few years, and I've come to the conclusion that I am at my best when I am helping and serving others. My grandfather's words were true: it's not what happens to you that matters, but how you react to it that does. Life is better when we're focused on others. I am thankful that God gave me that insight very early. As a result, I have been able to fuel my grief toward something good—something that serves others.

Taylor already knew that. She lived it, and I want to be like her in that way.

I look forward to seeing her again and hearing her say, “Good job, Daddy! You did it.”

Tara

My friends Beth Rathe and Kathy Quirk were the ones who put fresh flowers on Taylor's grave weekly. They also picked up the trinkets that people left and put out seasonal displays for the holidays. One hot summer day, more than a year after Taylor's death, the three of us were talking at Taylor's gravesite when Beth said, “It's time to get it done.”

“You really need to do this,” Kathy added.

I knew what they were talking about. I'd made a great deal of progress during the fifteen months since Taylor had died, but there was one thing I still hadn't done—chosen a permanent headstone for Taylor's grave.

“I just can't do it,” I said.

“You can, and we'll help,” Beth said.

Like so many pivotal moments during my journey, I needed my friends to help me make it happen. They asked me what I wanted, and I gave them permission to work with the people who would create the designs to be etched on her headstone.

A few weeks later, we all sat down in Kathy's kitchen to review their work. As soon as Beth opened the manila folder, I burst into tears. She quickly shut it.

“No,” I said, grabbing a Kleenex and wiping my nose, “we have to do this. Let's just get it done.”

We were all crying as we looked through the drawings for a permanent memorial for Taylor. Yet, with the Holy Spirit's comforting help, we made some decisions and sent our notes back to the designers for revisions. A few days later, they emailed me a revised drawing. I didn't like it, so I emailed them back with more detailed notes, and we repeated this process for weeks.

I wanted it to be perfect.

And I didn't want it to be final.

But by July 2011, I knew I had to force myself to make it happen. I drove to Fort Worth and sat down with the lady who was designing the layout of the stone on her computer screen. I gave her the photo of Taylor I wanted to be etched into the stone. Underneath the photo, I chose a volleyball and a heart to represent her life. On the other side, we put a cross.

I wanted her headstone to reflect her interests, her love, and her faith. Those three symbols, the volleyball, the heart, and the cross, accomplished that.

In the upper righthand corner, I had Luke 18:27 inscribed: “What is impossible with men is possible with God.” Since Taylor's death, that verse had been proven true in our lives, both personally and with the foundation.

In the upper lefthand corner, I had Romans 8:28 inscribed. It was the same Scripture that Father Alfonse had come across on the night of Taylor's funeral. He had been saying that God had a purpose in all of this, and randomly opened Peyton's new journal and read: “And we know that in all things God works for the good of those who love him, who have been called according to his purpose.”

A few weeks later, I stood next to Taylor's grave in the sweltering August heat and watched the crew install her marker. Using a tape measure, they marked a space on the grass slightly larger than the headstone and then placed their shovels upright and stood on them to break through the initial layer of sod and hard earth. After the first cut, they turned over shovelfuls of brown dirt and placed them in a pile.

Watching them, I was reminded of Ana Lucia's story of the clay Buddha cracking only to reveal the gold inside. I had definitely cracked, but I had also found gold. Our marriage was stronger, we had a clear purpose in life, and though it had been shaken, my faith was now more precious to me than ever before. I had been comforted by the Holy Spirit and drawn into a more intimate relationship with God, and though I would never be thankful for Taylor's death, I was thankful for God's comfort and the spiritual growth I'd experienced.

I had feared this moment because I was afraid the tombstone was the “final nail in the coffin,” and it would be an ending. But as I looked out over the emerald green cemetery grass and blue sky and saw the white clouds in the distance, I knew Taylor's death wasn't the end. Taylor also lived on in the lives and hearts of people she'd touched at school, at volleyball, and at church. Her gift became a new beginning for Jeff, Patricia, Jonathan, and Ashley. Her story inspired countless people to donate their organs, which meant that in some small way, she would live on through more recipients whom we would never meet. And she also gave us signs that she was still a part of our lives just when we needed reminders the most.

In the early days of grief, I wondered if I would ever have two good days in a row. As time passed, there were three days, then five, then there were good weeks. Back then, I was desperate to know if I would ever be happy again—it didn't feel possible. But now I know that though the pain will always be with me, it will change
form and lessen over time. I'm happy again. I've found happiness in the ordinary things—watching Peyton swim, listening to Ryan chatter at the dinner table, or feeling their arms around my neck. Their humor cracks me up and I have gigantic belly laughs at their antics, something I once thought I would never have again. This new joy is more pure and precious to me than ever before.

As the workers picked up the heavy granite stone and carefully laid it on the surface they'd prepared, I saw Taylor's image, and next to it the cross. I thought about Jesus dying on the cross. The Son of God had a purpose in death. Though many thought His death was an end, on the third day they discovered that Jesus's purpose was part of something much bigger. Something eternal.

God created each of us for a purpose.

I'd always known my purpose—it was to be a mother to my three kids and a wife to Todd. But when one of those kids was taken from me, I felt like my purpose had been taken too. Some people talk about empty-nest syndrome when their kids go off to college. For a long time I felt as if my nest had been kicked and the pieces had gone flying everywhere. But once I got over the initial shock of losing one of my babies, I saw there were two more who needed me more than ever. What I came to realize over my months of searching was that my purpose hadn't changed—I was still a mom of three. But Ryan and Peyton need me in different ways now than Taylor needs me. We were a five-piece puzzle that had to be put back together with only four pieces, and we were all working hard to create a new picture of what our family would look like going forward.

Todd quickly knew his purpose was in the foundation. I rediscovered during those months of grieving that part of my purpose as his wife was to help him fulfill his God-given purpose. Now that he is working out of our home and we have the foundation, it is easier than ever for me to be a part of what he's doing.

Our purpose comes from God, who is the Author of our stories, our lives, whether we like the plot or not. He was the author while
Taylor was alive, and He was the Author of her story even in her death. But her death is not the end of her story. God is still sovereign and He is still writing. Taylor's next chapter continues—it just continues in a new setting. And mine continues as a mother of three, though I don't see one the way I used to.

I thought about Taylor, wrapped in Jesus's arms, her head on His shoulder and her ponytail tickling His neck, smiling down on us as we've muddled our way through a few dark chapters. She got to the happy part of her life's story faster than most people.

Todd and I know that each day only brings us closer to the day our stories will once again merge with hers—we have the same Author of Life.

When we die as believers, life doesn't end. It's just a new beginning of life with God.

Eternal life.

And that is the story we all look forward to living.

Todd and Tara

The title of this book is
Taylor's Gift
, but this isn't just Taylor's story, or even just our story. It's the story of a cowboy who now has the strength and ability to give back to the community, a nurse who can be an active mom and fully present for her kids, a biker who can give of himself completely, and a teenager who for the first time can see her future. It's the story of countless recipients who received organs because someone heard Taylor's story and registered to be an organ donor. It's also the story of the infinite number of gifts they will give to
their
friends and family.

Taylor's gift is a gift that keeps on giving.

To others.

To us.

But the greatest gift we've received through this journey didn't come from Taylor. It came from God.

The gift of hope.

No matter how tragic our circumstances, God was always there for us.

Whether we acknowledged Him or not, He was always there.

And whether we heard Him or not, He was always present.

He will be there for you too.

Of course
He will.

You are His gift. You are His child.