Teddy's Village

Melissa & Amanda Phillips

Melissa and Amanda were born with Cystic Fibrosis, an incurable hereditary disease that affects the lungs and digestive system.  When Melissa was born in 1981, the diagnosis was grim and options for treatment were limited.  Her parents, just teenagers themselves, were told she would not likely see her 2^nd birthday, so we were blessed to have her for 12 years before she passed in March 1994.  Amanda lost her battle just a few months later in June 1994.  She was 8. 

It was unimaginable to lose them both in less than three month’s time.  The grief was profound, and it never fully goes away.  But they packed a lot of living in their short lives and the legacy they left has helped us heal and even rejoice as we honor their lives.  This is a small part of their story and how they came to be such an important part of my life.

My husband, Ron, worked with their father, Tom, in the Kansas Air National Guard.  I played softball with the Guard team, as did their mother, Kelly.   It was 1983 and we were 19 years old. 

Kelly and I didn’t really connect at first.   She was an awesome softball player who lit your hand on fire through your mitt when she threw to you.  I threw “like a girl” and she let me know it.  My friendship started with her 2-year old daughter, Melissa.  I was sitting in the bleachers watching a game when she scooted up next to me and began talking.  She melted my heart instantly and over the next few softball weekends we shared lively conversations on the sidelines.  She was wise beyond her years, even then.  One day Kelly joined us in the bleachers, and thus began a friendship that grew deeper than any other I have shared in my lifetime.  Melissa adopted me as her second mom, and I couldn’t have loved her more had I given birth to her.  When her sister, Amanda, was born two years later, she was like my own from the start.

My oldest son, Bryan, was born a little over two years after Amanda.  They loved and fought like siblings.  I wish we had taken more pictures.  We were together so much that we just didn’t think about pulling out a camera except on birthdays and special occasions.  I cannot emphasize enough how much those pictures will mean if they are all you have left.  Take pictures of everyday life…the goofy stuff…the ordinary stuff.  Take pictures with everyone.  We were shocked to discover how many people in their lives didn’t have a single picture with them.    

And life gets divided into a sort of before and after…that was before we lost the girls…that was after.  My younger sons, Dakota and Colton never knew Melissa and Amanda, but they have heard the stories and seen the pictures their whole life.   They feel a connection, but don’t have any memories of their own.  They are both involved in this organization and help us raise money for Cystic Fibrosis in honor of the girls.  In the same way that I “adopted” Melissa and Amanda, my kids love Tom and Kelly as second parents.  But I can’t help wishing they had been able to truly know Melissa and Amanda.

Melissa was an old soul and, as mentioned, wise beyond her years.  Our relationship started with amazing conversations and that continued throughout her life.  I was her confidant, second mom, and the one who had the privilege of chaperoning her one movie date.  She wrote about it in her journal which is now a treasured piece of her legacy.  The drawing here is one she made for a school project.  It is a self-portrait of how she imagined she would look when she grew up.  I love how similar it is to one of my favorite pictures of her playing dress-up. 

Melissa adored my son Bryan and was so excited when she turned 12 and could babysit him for a few hours on her own (he was 5).  She took the role very seriously and loved being in charge.  Bryan would beg us to go someplace just so Melissa could babysit.  Their relationship was very special.

Where Melissa was mature, poised, and full of grace, Amanda was full of spit and fire.  She let you know exactly how she felt, no filters.  An example is an indelible memory of one night that I stayed overnight with her at the hospital.  The staff promised when Kelly went home to get some rest that they would not “poke her” with any needles before Kelly got back in the morning.  There was a crying baby in the room for several hours and they had finally moved the baby to another room, Amanda was just settling in, when they came in to draw blood around 4am.  Amanda was LIVID.  She screamed and fought.  I begged them to wait just a few hours until Kelly was back, but they said they had to take the labs before shift change and they held her down to draw blood.  She was screaming at them, and me, that she hated us all.  My heart was breaking.  When they finally left, Amanda curled up in her bed and I thought she would stay mad at me.  But she looked at me through tears and a pouty mouth and asked me if I would lay in bed with her.  Holding her while she fell asleep from that ordeal is one of my most cherished memories.  She was feisty…but that fire was part of her charm and no one could stay upset with her for long. 

Melissa and Amanda had an amazing bond.  Yes, they were sisters.  They shared a room.  Their birthdays were a week apart.  But it was more than that.  They also shared a disease that they knew would likely take their lives before they grew up.  I cannot even imagine what that must have been like.  The conversations they likely shared.  And how devastating it was for Amanda when her sister died without warning.

We were all in shock and denial when Melissa died.  We had been “preparing” to lose Amanda…as well as one can prepare for something so incomprehensible…for nearly a year as she was in and out of the hospital and the doctors began to tell us it was just a matter of time.  But Melissa had not been ill enough to be in the hospital for nearly a year.  She seemed to be doing well and she was making plans that seemed within reach, like starting middle school and having her first boyfriend.  Then the unimaginable happened. 

She was out riding her bike on a Friday, became seriously ill on Sunday, and was gone by the following Wednesday.  It happened that fast.  We didn’t even have time to process.  But true to her mature spirit, she called her parents and my husband and I to her bedside the night before she passed.  She thanked us for being such amazing parents and role models, and she told us she was going to be on the other side waiting for Amanda and would take good care of her.  She said goodbye.  She seemed resigned and ready…we were not.  

Her funeral reflected her peaceful passing.  She looked like a literal angel.  We were numb.  Kelly was near non-functional the week leading up to the funeral.  I moved in to help care for Amanda and she insisted Bryan be there too.  Her “pesky little brother” became her lifeline.

As a life and relationship coach, I had a lot of experience helping people move through difficult times.  Kelly leaned on me heavily to get her through the weeks ahead.  It was a gift to be able to be there for her in that way.  But nothing prepared me for helping Amanda as she faced the reality that Cystic Fibrosis would likely take her life as it had Melissa’s. 

Hyperaware of how precious time was, we spent the brief time we had left living each day mindful of what a gift it was.  We made some amazing memories that I will forever treasure.  One of my favorites was sitting in the hospital floor with Amanda and Bryan making a Mother’s Day card for Kelly.  We had glitter everywhere…something one would normally frown on in the hospital, but the staff was so great and the cards they made were among Kelly’s favorite things. I wish we had taken pictures too.  I can tell the story, but I wish I could show it and see it again.

Making memories was a blessing.  But I did what many adults do with terminally ill children.  I worked so hard to protect and distract her from the harsh realities, that I neglected to give her a safe space to share her deepest thoughts and feelings.  I honestly didn't know how.  It is something I still carry with me and why I wrote “If Teddy Could Talk” and founded Teddy’s Village Charitable Foundation.

Melissa and Amanda lost their battle with Cystic Fibrosis less than three months apart.  Tom and Kelly had just buried their eldest daughter and before her headstone was even set, they had to prepare to bury their youngest daughter.  One fear Amanda had expressed was of the morgue.  The last thing Tom could do for his baby girl was to keep a promise that she would not go to the hospital morgue.  We prepared for a fight because it broke all the rules, but my husband was able to convince them to let Tom carry Amanda in his arms, like a sleeping child, to a limousine waiting out front to transport them to the mortuary.  And that is how Amanda left the hospital.  It would be the only thing that went smoothly.

Where Melissa had passed peacefully and her funeral reflected the same, Amanda went out fighting (true to her fiery personality).  She wanted Bryan on her bed holding her hand and any time anyone else tried to move him, she held tight.  Bryan had just turned 6, and he was terrified to lose another “sister” though he was aware that is what was happening.  He held on as tightly as she did.  Unfortunately, the doctors decided it would be best if he wasn’t in the room in the last minutes.  They pried their hands apart and I will never forget Bryan crying and reaching for Amanda as she used every ounce of energy she had to reach for him.  It impacted him deeply and if I had it to do over, I would have insisted the doctors leave them alone.  These are the things we hang onto…things we can’t change that add to the grief that seems impossible enough.  And on top of it all, if something could go wrong with the service, it did.  There were issues with Amanda’s hair and other aesthetics that created moments of trauma.  The music messed up and there were several other technical glitches.  Bryan was near catatonic and it frightened me to the core.  Then we stood graveside and Kelly said, “I am a mother without children.  What am I going to do?”  The devastation we felt in that moment was palpable.  There is just no way to prepare for the loss of one child, let alone two of them.

But life moves forward, no matter how impossible it feels to move with it.  We had to pack away their things and decide what we would keep as memories and what we would let go of.  One of the things we knew we would keep was Teddy, the bear my husband and I bought for Melissa when she was 3 and later shared with Amanda.  Teddy slept with them and went to the hospital whenever they did.  He was in bed with Amanda and I following the “ordeal” and for lots of other eventful moments.  It was a conversation with Kelly about all the things Teddy was witness to over the years that first gave me the idea for the book.  It dawned on me that not only was it incredibly difficult for an adult to talk to a child about the possibility of dying, children dealing with a critical illness often hide their feelings from others because they feel guilt and shame believing they cause the sadness their loved ones feel.  Children often share their deepest feelings with a companion toy.  For Melissa and Amanda, that was Teddy. 

I wrote the original draft of “If Teddy Could Talk” in the late 90s.  Kelly loved the story and we talked numerous times about how we wanted to bring it to families with terminally ill children so maybe they wouldn’t suffer some of the same regrets we did for opportunities missed and memories not preserved.  But as much as she loved the idea, the reality of it filled her with fear that it would be too difficult to share her story in such a big way.  I honored her grief too much to ever push the idea beyond her comfort level.  Every few years it would come up again, and each time we would table it for later.  Then, in early 2016, Kelly said she was ready.  She had been doing some deep soul searching following the recent loss of her mother and had come to realize that she wanted to embrace living and the people she loved more fully.  And she wanted to share her story and make a difference for families facing the loss of a child.  We began making a plan to form the non-profit organization that would help us do that.

Sadly, we lost Kelly without warning in September 2016.  It was another tragic reminder that tomorrow isn't promised and that each day with a loved one could be the last. 

Kelly wasn’t able to cofound this organization with me, but she will always be a huge part of it and I know she would be so proud of what we’re doing.  The ladybugs throughout the book are a tribute to Kelly.  As we stood in the family room awaiting the start of her service, a ladybug landed on my youngest son’s tie.  It walked up his tie, then flew to Tom’s backside and moved up his back, then flew to several other people, landing briefly before flying to another.  Then it seemed to vanish.  As we sat down in the chapel waiting for the service to begin, the ladybug flew to the back of the pew in front of us.  It had apparently ridden into the chapel on my husband’s camera bag.  The ladybug walked slowly from one end to the next in front of us and then flew away toward Kelly.  The next few days we saw ladybugs everywhere…an unusual number of them showing up in the most interesting places.  And we have continued to see them.  They show up at nearly every KU football game we attend.  That was a favorite thing to do for Kelly and what we did on our last weekend together.  They showed up at a Dallas Cowboys football game…another favorite thing for Kelly.  And they show up at random moments and fill us with thoughts of Kelly still. 

Memories are all we have left of Melissa, Amanda, and Kelly…but we cherish all of them and they have helped us through some really difficult times.  There were lots of things that, in hindsight, we would do different, better, or more of.  It is one of the reasons Kelly and I wanted to share our stories and help others avoid some of the regret of missed opportunities.  It is why I wrote “If Teddy Could Talk” in hopes that it would help build a bridge for difficult conversations and encourage mindful living and making memories as often as possible. 

None of us are promised tomorrow.  Leaving a legacy is such a gift for those who must move forward after a loss.  But living that legacy, embracing the good and the bad and making the most of all of it…that is the greatest gift of all.