"Papa & Dede"

Since Sam was growing inside of me, I have wondered if Mike's parents loved him more than we did.  I remember Steve shedding tears the first time he saw me with my Sam baby bump.  I remember Dede sneaking upstairs to take a peak at my Sam baby bump while I napped.  They were their the day he was born and were absolutely glowing as they got their first look at him.



















Two weeks after Sam was born we traveled to Raleigh to stay with Papa and Dede for his first Christmas.  The night we arrived Sam was inconsolable.  It was one of those parenting moments where you try everything to calm your child and you fail every time.  I breast fed him like 70 times, rocked him, sang to him, we took him for a car ride, picked up infant gas medicine.  Nothing worked.  I sat up in a bedroom and just gave up.  Mike brought him down to Dede and she just rocked him for hours and hours while he cried.  They sat together all night long and he finally fell asleep on her.  

Papa and Dede came to visit us often in Charleston and every time they did they insisted Mike and I go out.  These were really the only date nights we had since we had no family in town.  I know they secretly wanted us out of the way so they could have Sam all to themselves.  He has always been attached to me and tends to interact with EVERYONE better if I am not in the room.  ;)

When Sam was 10 months old, I decided to go back to work full time.  We had some struggles finding childcare that we felt comfortable with, so Dede packed a bag and was our live-in nanny for an entire month so I could start my job.  Shortly after that, Sam was diagnosed with Ollier's and had his first surgery.  Steve and Dede were there in the waiting room with us and helped us through what turned out to be some of the worst days of my life. 

Papa and Dede stayed with Sam for our first weekend away from him.  They stayed with Sam for a week so Mike and I could go on our honeymoon.  They gave us their timeshare that year so we could afford to go on a honeymoon.  They stayed with Sam again the next weekend so Mike and I could attend a wedding in Madison, WI.  They never say no.  They always drop everything to help us.

Sam always looked forward to Papa and Dede's visits.  We couldn't tell him until the day they were coming or he would ask us incessantly if they were here yet.  One day when Sam was just over a year old, we were out playing on the tiny porch off our bedroom and Sam recognized Papa's car and starting yelling, "Hi Papa Dede!" and waving.  I'll never forget the look on their faces.  He would share muffins with Papa in the morning.  He would let Dede read him stories, sing him songs and put him to sleep at night.  After he went to bed, we all would discuss how cute, smart, funny Sam was and tell stories of him we all knew well as evidence of these traits.  "He belongs in magazines," Dede would always say.

When Mike visited my hospital room on July 26th, 2013, and told me that one of Sam's eyes was not focusing, the first thing I said was, "he needs an MRI today."  The second thing I said was, "please call your parents and see if they can come early."  Of course they came right away.  I don't remember a lot about our time in the hospital, but I do remember they were there with us.

I honestly am still not sure who loves Sam the most.  I have said to several people when describing Mike's parents that they were the only people I was certain would jump into oncoming traffic if Sam asked them to.

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.  

"Uncle Shannon"

My younger sister called me two weeks after Mike and I announced that we were pregnant with Sam.  Surprise!  She was pregnant too.  At first, I had mixed feelings about her pregnancy mostly caused by the fact that I did not want her to "steal my thunder."  Those feelings quickly diminished as I realized I had someone I completely trusted to discuss the in's and out's of a first pregnancy with.  We spoke often and honestly about being pregnant; and during that time I feel we grew closer than we had ever been.

Shannon went into labor the day before Christmas Eve and delivered Christian via csection the next day.  I'll never forget the first picture I saw of him.  Sam was just 15 days old and it became apparent what a special experience Shannon and I had shared.  Our boys would be the same age growing up - playmates, friends, cousins.  Sam and Christian met for the first time in January of 2010 when Mike and I traveled to Minnesota for six weeks to introduce everyone to Sam.

The June prior to Sam's diagnosis, we traveled to the Mayo Clinic to have a screw tightened from a previous surgery in his knee.  At that time, we thought that was the reason Sam had been moody and had stopped walking.  During that stay in Minnesota, Sam started referring to my sister as Uncle Shannon.  It was hysterical and it just stuck.  Forever, she will be Uncle Shannon to my children.

When Sam was diagnosed, my sister came out to stay with me.  She took time off work at her job in the food and beverage industry where words like PTO and vacation time are a joke.  My memories of that visit are hazy and jumbled and sometimes just missing.  BUT...I do remember her and my brother sitting in my hospital room with me and laughing and chatting like we always do.  I remember Shannon spent the night with me in my room rather than going to my house. Those were some of the only moments I felt like myself during that time.

When Shannon returned to Minnesota she immediately began planning a fundraiser for Sam.  She secured a beautiful venue, gathered donations from local businesses and engaged other family members to help.  That event was the single most successful fundraiser thrown for Sam.  Hundreds of people came and ate, bought raffle tickets and bid on silent auction items.  It was nothing short of incredible.  Because of that event, we have been able to keep our house in Charleston while traveling over the past 8 months.  I have reconnected with friends from my past that attended the event.  I felt so much love for my family all gathered in one room.  How do you thank someone for that?

Our family arrived in Minnesota in December and are still here.  Every single day that Shannon doesn't work, she has come to help us out with the twins, housework, cooking, etc.  She brings us coffee and Sam and Christian run around together playing 3 year old games.  They laugh and we laugh and everything feels right with the world for a few minutes.

Our Disney Donor

After Sam's diagnosis and the twins birth, Mike and I received a lot of mail.  Cards and packages started rolling in with gifts, money, words of support, prayers and more. At the time, Sam was still going through treatment and spent most of his days on the couch watching Curious George.  He did not want to play, walk or really be around anyone except Mike and I.

The packages were little rays of light during a very dark time.  They piled up in our kitchen and in Sam's playroom.  They are still there, every single card and note and gift.  I started keeping a database of names and addresses to eventually, send thank you cards.  I don't know if we will ever be able to thank everyone; there are thousands of you.

One day a small package, perfectly sized for a VHS tape came in the mail.  There was a note from a woman in Summerville, SC.  Her name is in the database I am keeping on a computer that currently is not working.   The note she sent was fairly long and instructive.  Sam must see the Magic Kingdom.  It is very important for children to feel the magic of Disney.  She even gave affordable hotel recommendations.  We dumped the contents of the package out on the kitchen table - three $25 gift cards to Disney World and at least 30 pieces of gold jewelry.  Knowing nothing about jewelry, Mike and I assumed it was fairly worthless but were impressed by the gesture and firmness with which she made her suggestions.  Disney World was on our list of places to travel and we discussed sending her a picture of Sam from Disney World.

A few weeks later, our friend Jarrod came to town for a visit.  We told him about the package and that we wanted him to take the jewelry to a cash for gold place.  Jarrod was the perfect person for such an errand.  He came back with a check for over $700.  We were stunned by both the graciousness of this stranger but also by how wildly our expectations were violated.

I hope this post finds its way to our Disney donor even though we have temporarily lost her name.  I want her to know we had an amazing time at Disney World and we were able to bring along Sam's grandmother (Fa), Uncle Shannon and my nephew Christian.  The boys swam together in the Finding Nemo pool and slept in a Finding Nemo room together.  Sam loved the safari at Animal Kingdom and seeing Mickey from afar.  He was in awe of the "huge castle" and loved "It's a Small World" and the Haunted Mansion.  It was truly magical.

Sam's Heroes - "Fa"

Fa

I distinctly remember thinking I did not want anyone besides Mike, my husband, present when I gave birth to Sam.  At the time, I had been living in Charleston, SC with Mike for less than a year, and I thought giving birth would be something we could handle on our own.  I can't remember exactly when I asked my mom to fly out but it was definitely before my due date and long before Sam was born on December 9th, 2010.  Of course she came the minute I asked her to.  Deep down I knew she would, even though I believed I didn't want her to.

The days before Sam's birth dragged out like the long winter months in Minnesota where I was born and raised.  I was antsy and anxious and huge and so ready to have the baby I was in no way prepared to have.  We watched episodes of "Boardwalk Empire" and ate Little Caesar's pizza and waited.  

My doctor called Sam's birth "perfect" and it was.  He came out perfect and looked right into my eyes and blinked, blinkety blinked.  My mom held him within hours of his birth.  I was so glad she was there.



At 10 month of age, Sam was diagnosed with a vary rare disorder called Ollier's disease.  The disease causes Sam to develop benign tumors called enchondromas in his bones that cause orthopedic problems.  Sam's disorder primarily impacts his right leg and hip.  He had his first surgery right after his 1st birthday, a femural osteotomy, which left him in a cast from armpits to toes.  My mom fly out to Charleston to care for him a for a week, 2 weeks after his surgery so I could go back to work.

Two days after I was hospitalized with the twins in late July of 2013, Sam was diagnosed with an inoperable brian tumor and given 12-18 months to live.  He began radiation treatments immediately and was admitted to the hospital just 2 floors above me.  My mom flew out the next morning.  She helped us take care of the house and sat with me and Sam through the worst week of my life up until this point.  She flew home when Sam and I got out of the hospital so she could go back to work.  She wanted to save her time off for when the twins were born.  The twins were born two days after she left town.  Without hesitation, she got on a plane and came back to Charleston.  

And we needed her...Sam was at home with Mike but going to radiation treatment every  morning.  The twins birth (csection) left me racked with pain and both girls were hospitalized.  Ada went to the level 2 nursery to be treated for high red blood cell count and jaundice.  Mae went to the NICU and had a blood transfusion.  She was born with a very low red blood cell count.  My mom drove me to the hospital to visit the twins.  She dropped off breast milk I had pumped for them when I wanted to stay and sit with Sam or was too tired to go back to the hospital.  She cooked dinners, waited on Sam hand and foot and all the while she was strong and positive - exactly what I needed.  

When Mike and I decided to head to Minnesota for a long visit she opened her home to our huge family and helped us take care of them; all the while working full time and helping my sister out with daycare for my three year old nephew, Christian.  She brought home beer and wine we liked so we could drown our sorrows.  

At Christmas she bought Sam and Christian so many toys they had to take a break and come back to finish opening their gifts.

And my mom continues to be there for whatever we need.  Last week I called her on a Friday and asked her to take a week off work to help us take care of the kids.  She did.  When our kids gave her a cold she had to go home for one night and sleep it off and at Sam's bequest, she left her iPad so he could have two for the night - they have different games you know.  

I will never be able to thank my mom for all she has done or will do.  I hope this post helps her to know how much we love and appreciate her.  No one in the world has a "Fa" like Sam. 

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