Miss Tegen

In the wake of Mother's Day and the abundance of love and messages I received as a mother, I wanted to dedicate this post to the story of an amazing "non-mom."  I met Tegen in August of 2000 -  my first day of college at the University of Wisconsin Madison.  My roommate, Tricia, and I were finished unpacking and celebrating with a smoke in the quad.  My first priority for that weekend was to find friends and parties.  I spotted two other girls that looked nice and were also smoking and we marched up, introduced ourselves and the rest is history. 

Tegen has also been one of my closest friends.  When I moved to South Carolina, we remained close despite the distance.  Her and her husband Mark were our first visitors after my move.  They slept on the floor of our dining room in the one bedroom apartment we were currently staying in.  Tegen visited regularly and has been a part of Sam's life since before he was born.  I was pregnant with Sam at Tegen's wedding.  Since I had purchased the bridesmaids dress prior to knowing about Sam, it did not fit when the wedding came around.  Tegen didn't care.  "Wear whatever you want," she said.  That is Tegen.  Down to earth, says what she means, always up for fun, caring and present for everything. 

Tegen is more of a mother than many mothers I know.  She puts other people first, always.  She spends most of her time with her family and close friends, helping them through whatever problems they face.  If you have money problems, Tegen will help in any way she can.  If you have relationship problems, she will really listen and do all she can to help.  If you have a child sick with cancer, she will take weeks out of her life to hold your hand in a hospital room, feed and bathe your tiny newborns, make you lunch while you pump breast milk for the 10th time that day, attempt to play with your son who is too sick to engage with anyone, bring over diapers and wipes and formula and cook dinner for your whole family. 

 She will spend the night and get up with your babies so you can get extra sleep and travel to New York to be part of a special trip you have planned for your sick son.  She will drink wine with you and carry you out of a new year's eve wedding when you are overcome with sadness for your situation.  She will set up a schedule and coordinate with your family to make sure that you always have help when she can't be there.  She will take thousands of pictures and videos of your family when you are too busy and make sure she saves them to your hard drive.  She will text your mom to check in with her.  She will massage your shoulders when your tense and hold your hand when there is nothing to say.

I could never thank Tegen for all she had done and been for me.  I love her unconditionally and I don't think it was an accident that we approached her in the quad nearly 15 years ago.

Ethen Richardson and family

Sam Lee and Ethen Richardson were given the same diagnosis and prognosis on the same floor of the same hospital by the same doctor on July 26th, 2013.  They appeared on the front page of a Post and Courier news article earlier this year - side by side.  Our families have never met, yet, I have thought of Ethen and his family EVERY day since this whole nightmare began.  I feel connected to them.

When Ethen was hospitalized in December, I personally reached out to Brandy, Ethen's mom, and Todd, Ethen's dad, to offer our support.  Despite the fact that they were taking care of their very sick child, they responded almost immediately with their personal contact information.  They are selfless, loving, faithful and hopeful people.  All 15,000 of their Facebook supporters and undoubtedly thousands of others know that about them.

I must admit, when Sam was diagnosed with DIPG, I was certain his prognosis was terminal.  Because of the Richardson family, I am not so sure.  Because of the Richardson family, I believe in miracles.  Because of the Richardson family, I have hope.

I remember crying and praying when Ethen was hospitalized that he would wake up, would smile at his mother and father and brothers and sisters again.  And he did. Miracle. And I ashamed to admit I was surprised and amazed.  Ethen and his family have given our family strength.  They are an inspiration and I hope someday to meet them and look at them and share this sentiment face-to-face.

Ethen and his family are truly Sam's heroes.  Perhaps they are some of the most important heroes we have never had the opportunity to meet.  My heart breaks for their family today as they mourn the earthly loss of their son.  I am grateful Ethen is no longer sick and angered that our families have no other medical options to save our children.

I know I will think of Ethen and his family every day of my life and I mourn the loss of this beautiful, selfless and loving young man.

The Moscowitz Family

We started having dinner at the Moscowitz house almost immediately after I moved to Charleston in the summer of 2009.  At least once a week our families would gather, usually at the Moscowitz house, for delicious food, wine and beer and chaotic, shifting half-conversations that are only truly known by those with kids.  When Sam was young enough to sleep anywhere we would stay long after Amelia and Eli went to bed and drink, play games or just converse.  

I loved these dinners.  It was through these dinners that I really got to know the family.  David and Leigh are extremely intelligent, interesting, engaging, kind people.  We'd talk politics, movies, academia, child-rearing, dog-rearing, food, communal living; we'd gossip, empathize, plan, laugh, even dance.  Leigh was my rock through both pregnancies always marveling at how big I or the kids were getting.  Over time, Leigh became so much more than a friend and their family became ours.


Amelia and Eli have always been a big part of Sam's life.  They include Sam in their games and laugh at his jokes and his tiny voice.  They marvel at how much he loves American flags, vacuums and Curious George.  They know Sam.

I was hospitalized for pre-eclampsia with the twins in July of 2013.  Leigh brought her family over to our house to care for Sam and Echo (our dog).  They cooked dinner and built the now famous fort out of a crib box and watched TV.  It was such an intense relief to have a family Sam knew and trusted caring for him so Mike could be with me in the hospital.  I woke up the second morning in the hospital and ordered breakfast.  Before I could eat it they started monitoring the twins which meant I could not eat or drink.  Mae was not as active as the doctors wanted her to be, so they kept monitoring hoping her activity level would come up.   They monitored me all day, we signed surgery paperwork and prepared birth certificates for the twins.  I was 35 weeks pregnant and terrified to deliver that early.  I begged the doctors to let me eat.  They finally agreed that evening.  Once I ate Mae's stats came up and they were satisfied enough not to deliver me.  I was so relieved, but the relief was short-lived.

The next day, we were told Sam had a large mass in his brainstem.  He was admitted to the hospital.  Leigh was with me that night.  I knew it was bad, but she talked me down and I got some sleep.  The morning after, I woke up early and had a nurse wheel me to Sam's floor for the diagnosis.  "Inoperable, incurable brain tumor, average life span of 9-12 months, we will make him comfortable."

I went back to my room.  Leigh texted, "I am here if you need me."  She didn't mean hypothetically, she was literally in the hospital waiting for me to respond.  She waited hours and was still there when I bothered to text back.  

And the Moscowitz's were there every single day.  Leigh arranged for a masseuse to come to my room and give me a massage.  David and Leigh picked up dinner for whoever was visiting which often included several of our family members and friends. Amelia and Eli climbed into Sam's hospital bed and played with him for hours.  Their energy kept him happy despite the fact that he was on steroids powerful enough to make adults psychotic, being put under every morning, undergoing radiation and taking several medications include an oral chemotherapy.  He smiled when he saw them and requested their presence.  I sat in Sam's hospital room in a wheelchair marveling at these two children and the parents who raised them.  

When Sam and I went home from the hospital, Leigh often drove me to visit the girls and would sit and hold and feed them with me.  It was our new version of happy hour.  


Mike and I decided to go to Minnesota for an extended period of time and quickly realized the logistics of getting all five of us and our stuff there was...complicated.  We devised a plan.  If Leigh and Amelia would fly with me, the twins and Sam, then Mike could drive the mini-van solo and pick us up at the airport.  The flight was comical.  The twins were four months old and we had a mountain of luggage. Amelia did her best to entertain Sam who still had not completely recovered from treatment while Leigh and I juggled making bottles, changing diapers, and listening to strangers advise.  The first leg of our flight was delayed-we had just minutes to cross the airport to catch our second flight.  We all did our best to run to the gate, Leigh and I with babies strapped to us and towing luggage.  People in the airport just stared.  We were a sideshow and the flight was one of the most stressful things I have endured.  On our second flight, Leigh ordered a beer.  I loved her so much in that moment for reading my mind.

The Moscowitz family is coming to visit us in Minneapolis this week.  We haven't felt whole without them.