"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. 

www.rally.org/supportsamleewww.facebook.com/welovesamlee