A Kind of Letter

There should maybe be some kind of preamble to this, but I don't have one.

4/24/2014

For Beydn

You died.  It was a sunny Saturday lunchtime, and we held onto you- hands, arms, feet, whatever our fingers could find.  And we let you die.  As much as we’ve ever let you do anything.  You will never have to know what that’s like.  I’m glad for that. The tiniest glimmer of a blessing in this illogical hell.  We stayed with you, wanting it to be over, wanting it to never end.  You died, and we lived through it.

You were born on a Friday, Beydn.  The weekend of a prom that I didn’t go to.  That’s how young we all were.  The weekend of Mother’s Day, your mommy’s perfect present.  Come Saturday the hospital was packed with half the world wanting to see you, to touch you.  Just like it was the Saturday you left it.  I can think of half a dozen people who were in the room when I was there that nearly summer evening.  Not one of them could get close enough.  And it was like that when you died.  If we could have crawled under your skin we would’ve.  We would have breathed for you, given you our lungs if we could.  It doesn’t make sense that nothing in this world of technology made that possible.  The ventilator isn’t actually doing anything.  How did I think that?  It doesn’t make any sense.  It doesn’t make any sense that we were there at all, there in that hospital room with you only ten years from the beginning.

I did not carry you in my body.  I can not speak for you mama because I didn’t grow you.  I will not speak for your daddy because I know his ache is worse than any words I have.  It’s not my place to speak for your stepdad; I didn’t get to see you with him every day.  But I will speak for myself, and there were a thousand things I thought I would get to talk to you about.  There were a thousand things I wanted to explain to the man you were becoming, boy with hands and feet as big as mine.  I thought you would outgrow us all- in a lot of ways.  Now I can only put down in black and white the part of me that belonged just to you, the part that become a parent without knowing one May day.  I will be 70 writing letters to a 10 year old boy.  I can do it until I die.  I did not carry you in my body, but I carried you.  In my arms.  In my heart.  I don’t see any reason to stop now.

So, when I say that I half expect to see you here again, or that I partly anticipated to take you home with us, whole and happy, even in the moment that you died, I don’t say these things because I’m crazy.  It’s just that they seem as possible as any of it.  Or more.  Just as possible as you having leukemia, more probable than your daddy’s shaky voice on the phone, way more feasible than a fungal infection I never even knew existed.  And when I say a part of me looks for you to come in the door any minute it’s not that I don’t remember the truth.  There's just a hope that won’t be still, a wish I’ll always have.  We were always waiting to see you; there's no way to erase it.  Not any more than there's a way to erase you.

 

Annie

FOR BEYDN

So many kind people have shown love and support for Beydn (pronounced Bay Den) and our family over the last few months without even being fully aware of what happened to him.  On November 3, 2013 Beydn was diagnosed with T-Cell Acute Lymphoblastic Leukemia at Scottish Rite Children’s Hospital of Atlanta.  He underwent chemotherapy, and after eight days was able to go home until his next treatment.  Within four days Beydn was back in the hospital where he stayed for another nine before returning home to Fort Benning, Georgia.  A few days later, just before Thanksgiving, he was readmitted, and on December 8^, 2013 he was moved to the PICU.  As his condition worsened Beydn was sedated, intubated and placed on dialysis.  When internal bleeding in early January led to an emergency surgery we discovered Beydn was now dealing with a section of necrotic colon that had perforated.  Beydn’s status would change daily.  Some days dawned with more hope than others, but over time his condition steadily worsened.  Results of blood cultures came back showing that Beydn also had Disseminated Scedosporium Fungal Infection as well as Aspergillus.  It’s not clear if these fungal infections were the cause of the deterioration in his lungs, intestine, and kidneys, but they definitely destroyed them further.  And it’s certain that the chemo, which actually did its job by putting Bey into remission, also opened him up to the infections he couldn’t fight against.  Chances of surviving a central nervous system fungus were low but we held out hope for a miracle.  After weeks it became apparent that the medicine for the most severe fungal infection was ineffective.  Beydn was in liver failure and renal failure.  We were told his intestines, which had never really recovered from surgery would never function, that his wound would never heal.  Beydn died on February 22, 2014.  He was ten years old, and would have been eleven on May 9^th.

 Beydn loved to read, ride his bike, explore the outdoors, research travel brochures and visit North Carolina.  He was a military kid in label and in attitude.  His dad and step dad were both active duty.  At the age of ten he had already lived or traveled to over a dozen states, the true example of resilience and flexibility.  Beydn was a huge fan of Greek mythology including the Percy Jackson kids’ series.  He loved Duke Football, the Carolina Panthers, specifically Cam Newton, and Star Wars.  He swam like a fish and loathed math.  He was the big bother of four brothers and two sisters and had the protector role down to a T.  Even while sick he worried about his siblings.  Beydn was a sushi eater, liked Chinese buffets and Shark Week.  He wanted to rescue dogs, dolphins and was the kid who convinced his push over dad to stop and save a turtle in the middle of the road.  Beydn was the boy who once swallowed salt water from an ocean wave to the face only to throw it back up onto the beach, and instead of whining to leave he dove head first back into the water. 

The For Beydn Foundation is currently in its building stages, and will continue to grow over the next few months. The first major thing our family hopes to do in our buddy’s memory is to return to Scottish Rite on his birthday and make a donation to the PICU in order to help other kids stride toward healthy lives.  Through our Facebook page FOR BEYDN, we have are currently selling leukemia awareness bracelets for $5 each and will soon offer For Beydn t shirts.  The other part of our Beydn’s Birthday Gift project is a toy drive.  We hope and dream that we are able to bring enough toys to Scottish Rite for Beydn’s birthday that every kid there can hand pick something to brighten their stay. This will be the first of an annual donation to Scottish Rite on Beydn’s birthday.  We will be standing in that hospital lobby on May 9, 2014 to prove that leukemia may have been stronger than Beydn’s body, but it’s no match for his legacy.  The memory of Beydn’s passion for life and his strength and bravery in the face of disease are inarguably strong enough to strike fear into the heart of pediatric illness.  Our foundation’s logo is designed as a sentence.  For Beydn.  Two words that will define our family and our lives.  The orange period signifies that with Beydn’s name and courage we can eradicate this illness and many others, period, the end.

Facebook-For Beydn

Twitter- @forbeydn

Click for Kids- http://click4kids.kintera.org/forbeydn

Scottish Rite suggested toy link

http://www.choa.org/support-childrens/donations-and-activities/gift-list

Infants and toddlers
Rattles and squeeze toys, Crib Activity Center, musical crib mobile (no cloth) with bed rail clamp, Fisher-Price Rainforest Waterfall Soother, music boxes, infant lullabies, Click'n Chatter Telephone, Baby Einstein DVD's and toys, Baby's First Blocks and Play Gym, non-breakable infant crib mirrors that clip onto a rail, pop-up toys, Fisher-Price Little People, plastic links to hang rattles on crib, plain "onesies" (clothing item), teething rings (no cloth), toys that light up or make noise, 6" stuffed animals with non-glass eyes, infant swings, exersaucers and necessary batteries for items.

Preschool-age
Touch books, Baby Einstein products, Play-Doh, Lego Duplo Blocks, Little Tykes toys, blowing bubbles, Little Kids "No Spills" Bubble Tumblers, Fisher-Price play medical kit, cars and trucks, Brio trains, non-toxic paint/brushes, plastic cars and animals, plastic food, Mr. Potato Head, Big Wheels, big dolls, coloring books, big crayons, Fisher-Price Peek-a-Blocks, clothing items and medium-sized stuffed animals.

School-age
Puzzles, Barbie's, large-sized blankets, Magna Doodle, games (Monopoly Junior, Sorry, Connect Four, Guess Who, LIFE, Trouble, Apples to Apples, checkers), Legos, Lego Friends, small trucks, Crayola art kits, coloring books and crayons, jewelry kits with beads, DVD's, action figures, handheld games, Wii games, markers, non-toxic paint/brushes, battery run toys (please include batteries), school supplies, "I Spy" books, harmonicas, Spider Man, clothing items and stuffed animals.

Adolescents
$5 gift cards (iTunes, Target, Wal-Mart), large-sized blankets, card games (UNO, Scrabble Slam, Monopoly Deal), Jenga, Taboo, playing cards, model kits, craft kits (no sand), stationery, pen and pencil sets, plastic picture frames for decorating, wordsearch and crossword puzzle books, hair accessories, brushes and combs, PG-13 DVD's, handheld games, cosmetics (hand lotion, body sponges, soaps), journals, NERF footballs and other sport balls, nail polish, Wii games, phone chargers (iPhone, Android, etc.) and clothing items.

 

PS- Stick with us in the next coming months as we grow a foundation website, meet with top microbiologist and  make a difference.