Abbie's Journey

by Aimee Tarbet
I felt compelled to share my testimony after the overwhelming support for my family during my daughter's third open heart surgery in the summer of 2011.  Not only did the neighborhood bring in meals and help watch our two older boys, they also held a ward fast for Abbie.

I am Abbie’s mom, and I wanted to take the opportunity to thank you all for the outpouring of love and support for Abbie and our family. I want to share that I have a strong testimony that Jesus Christ is our Savior and that God has a plan for each of us.

Please allow me to share a little about Abbie's journey. Being Abbie's mom is truly a blessing, not a trial.  I can say that even after 13 days and nights at the children's hospital with a very angry four year old.

When Abbie was born, her journey ahead felt like a trial.  She was born on Valentine's Day 2007 with Hypoplastic Left Heart Syndrome, the medical term for half a heart.  I was not prenatally diagnosed, so it was a big shock when she was 18 hours old and was taken from me and rushed to a local children's hospital.  She had her first open heart surgery at twelve days old, the first of three corrective surgeries that doctors believed would sustain her until her heart transplant in early adulthood.
Abbie in 2012

She spent the first six weeks of life in the hospital, intubated during the critical weeks when babies learn to eat.  When we brought her home at six weeks old, on several medications and a feeding tube, I was exhausted and lost.  I had a two-year-old and a very sick baby, and by doctor's orders was housebound for at least three months, not able to leave the house with her except to the doctor.  I landed myself in the hospital with a septic kidney infection, after weeks of neglecting my own care, just trying to survive.  My mom flew to Seattle, where I lived then, to help.

I KNEW this was NOT God's plan for me or Abbie.  He had gotten it all wrong.  I KNEW He had picked the wrong mom.  I was certain I did NOT have the strength to persevere on the long road ahead that had been so grimly laid out by the medical professionals.  I had even been reminded several times that statistically I should never expect my daughter to outlive me.

I was in a world of self pity and asked myself so many times--Why me?  Why her? I told my mom that I was going to quit.  I knew I couldn't do it, this was not my life.  She replied very simply, "God gave her to you for a reason.  She only has one mom and you are it."  I protested again, "I do not feel like God gave her to me.  I feel like my daughter is on temporary loan to me and could be taken away at any moment."  She wisely said, "All parents should live as if their children are on temporary loan to them because none of us know God's plan."

It was the first of many valuable lessons I would learn on Abbie's journey.  It is so easy to profess strong faith as a Christian when faith is untested.  I had doubt, anger and fear, but Abbie did not.

Over the next few months, Abbie had a permanent G-tube put into her stomach and her second open heart surgery at 4-1/2 months old.  I have saved calendars from that time in her life to remind me how intense she was medically.  She had appointments up to four times a week for months (gastroenterology, cardiology, pediatrician, dietician, etc.).
All parents should live as if their children are on temporary loan to them because none of us know God's plan.
By the time Abbie was six months old, things mellowed out for us and became our version of normal.  She had more doctor appointments than a healthy child, was hooked up to a feeding tube most of the first year of her life (she still has a feeding tube to supplement her calories) and had to be taught to eat, but we adjusted and for us, life was normal.

Not once did her strength ever waiver on this journey and she, in turn, strengthened me. Throughout these past few years, her purpose on this earth has become crystal clear and as I prepared to share just a snapshot of her journey today, I asked myself as I have several times before—What has Abbie taught me and SO many others in her short time on Earth?  The lessons are countless: humility, strength, grace, perseverance, patience, importance of relationships and faith in God's plan.

Abbie has this innate ability to make others feel special, which is such a unique trait in a young child.  Ask Uncle Derek how special it is to get an "Abbie hug" or Grandpa Steve how special it is when Abbie winks at him.  Ask Uncle Marcus and Uncle Randy how special they feel when Abbie climbs up on their laps at family get-togethers.  Ask Aunt Julie how special she feels when out of the blue Abbie says, "I love you Jewey."  Ask her four-year-old cousin (and best friend), Carson, how concerned and motherly she is about his well being.  In fact, just a couple of weeks before her surgery this July, my six-year old nephew Hayden told my sister-in-law, "Mom, it doesn't make sense to me--how can Abbie only have half a heart?  She does such a good job loving everyone."

So, here's a child who not only lives life to the fullest, but I am convinced also knows, that at the end of our time on Earth, all that really matters is how we make people feel—that positive, loving relationships are what defines our time here.

Abbie has always been a very perceptive child spiritually.  I have a favorite Abbie story.  When she was three years old, my sister-in-law, Jess was watching her and my son, Brent and took them to the park to play on a beautiful spring day.  Abbie said, "Aunt Jess, if God was a girl, the sky would be pink!"  Brent, my much more literal and analytical child said, "Abbie, God is a boy!"  Abbie quickly replied, "I know that, Brent, the sky is blue."  Who can argue with that perfect logic?

But the most important lessons Abbie have taught me are faith in God's plan and the amazing power of prayer.

So, four years of powerful spiritual lessons later between the second and third surgeries, along with countless more doctor appointments, a few hospitalizations, some minor cardiac interventions and dreaded anticipation.  However, I now knew that if God had blessed me with this amazing spirit for only 4-1/2 years, I had reached a point in my own spiritual development that I could find solace in all that she had given me and those around her in that short time. I was at peace that the outcome was in God’s hands.

This spring we prepared to start on this emotional roller coaster again. But, we did not prepare for it or get through it alone. I was completely blown away. Even though the Mormon faith is not the faith I choose to practice or raise my kids to practice, it did not deter the powerful, compassionate human spirit in this neighborhood or community.

The final corrective surgery was a brilliant success. The surgeon went so far as to say that Abbie was one in a million, that surely someone from above was watching over our daughter. Further, he told us that with medical advances in the last five years, the final corrective procedure is now being called a lifetime fix. Though recovery threw us a curve ball, her prognosis is bright. We spent seven days at the hospital, the first stay only to be readmitted two days later for an apparently common reaction called plural effusion—Abbie’s chest filled with fluid.

Abbie also had these baffling headaches, which left the cardiology team scratching their heads. Abbie would ask us to dim lights and she would hide under her blankets. It was obvious she was in a lot of pain. I spent a number of sleepless nights during readmission worrying: What if they were missing something? What if bypass had caused a neurological side effect, bleeding or a clot? Cardiology consulted with Neurology and I continued to worry.

Then on Friday morning at 4:00AM during Abbie’s daily blood draw, she screamed about her head yelling, “It hurts so bad!!! I can barely stand it!!!” The lab team left and I asked the nurse to please get Abbie Motrin, as we were weaning her off narcotics. When the nurse left to get her medicine, Abbie said to me, “Mom, it doesn’t weally hurt, I just say that so those people will weave me awone.” The next morning, a very amused cardiology team had a diagnosis—Abbie was having severe adverse reaction to medical personnel entering her room.

We are blessed enough to have more than one amazing team at the children’s hospital tell us that Abbie is the most cognitively bright Hypoplastic patient they have ever seen—maybe the naughtiest, but the brightest, nonetheless. These professionals assure us her feisty spirit will serve her well in survival in life with her condition. Despite what they say, I tend to think the feisty spirit I have seen these last few weeks will be counterproductive to her survival with mom and dad during her teenage years.

Again, thank you all so much for your love and support. It has truly been overwhelming—not just with bringing in meals or help with the boys or the countless gifts that Abbie will be helping me write thank you cards for until Christmas. All of those kind acts are much appreciated, but mostly, thank you for all of your loving thoughts and prayers. Abbie is living proof of the power of prayer.

Special thanks to Dusti, Rachel, Shannon and Julie—each of you have been a blessing in my life and I appreciate your friendships. Thank you to my sweet boys, Brent and Kolton, not only for being loving, protective and concerned big brothers, but also for gracefully taking a spot in the shadows the last few weeks while we focused on your sister. Thank you, Ben, for being such a wonderful husband and father on this journey. Thanks for voluntarily being Ab’s ‘Dad’ when you knew all that was ahead. It is such a tribute to your kind, loving character. I love you!

Thank you, Abbie, for being such an inspirational teacher of so many priceless life lessons. I NEVER ask myself, Why me? I know I am the blessed one because God picked me to be your mom. I say these things in the name of Jesus Christ, Amen.