Let Them Eat Cake, in Fort Payne AL -- Scottsboro Alabama Adult Cake Smash Photographer

Amanda needed the release of celebration -- and her 40th birthday seemed the most perfect reason to do just that.  

Amanda has had a rich life -- full of extreme highs and devastating lows.  "My oldest daughter, Marlowe, was diagnosed with Sanfilippo Syndrome when she was 4 yrs old," she writes.  "Sanfilippo is a very rare genetic disorder caused by a missing enzyme.  As a younger child, she was very, very active, but as the disease progressed, she lost her ability to speak and walk and spent her last 7 years of life confined to a wheelchair and dependent on a feeding tube. 

"My husband, David, and I met when Marlowe was about 14;  he's the only dad she ever had.  I had been divorced for over 10 yrs, after a brief marriage, and didn't care if I ever remarried.  We met because his youngest son has Gaucher, the same type of enzyme deficiency, just a different enzyme ... David and I married in May 2008, and combined had 4 teenagers in the house. Can you say hormone heaven?

"When David and I married, I decided to figure out what I wanted to be when I grew up, so in my insanity chose to go to nursing school, and graduated in May 2012. 

"For Marlowe's 17th birthday I wrote her a poem, because I had a verse given to me: 'you are a precious caterpillar, wrapped in a sweet cocoon, who'll emerge a beautiful butterfly in Heaven way too soon'.  

"The words 'sweet cocoon' stayed stuck in my head for a solid year, until in the Spring of 2012, when God told me that The Sweet Cocoon was supposed to be a house, and I'm supposed to build it.  My first thought was, 'great I don't have anything else to do!'.  I was in my final semester of nursing school, terminally ill child at home that was in and out of the hospital, three other teenagers at home, continuing to work while in school, and a husband that was working multiple jobs to keep the bills paid so I could finish school.

"I graduated in May, and in August, Marlowe was on a date with David and I.  We had dinner and then were at the drive inn in Centre, Alabama, when, as the movie was ending, Marlowe began having a seizure.  I gave emergency meds, though this was not her typical kind of seizure.  When the ambulance arrived she went into cardiac arrest.  We were flown via airplane to Scottish Rite in Atlanta where is was discovered that Marlowe had suffered a massive brain bleed.  God and I had played tug of war with this child for years and he knew that unless he did something quick, and left me with no other option, that I would continue to fight. 

"I knew it was time to let her go.  We gathered as a family and I told her nurse that when my pastor had finished praying to please turn all the machines off and unhook her from everything and just let me hold her.  Marlowe always had a way of doing things her way, and as our pastor said amen, Marlowe left.  Nothing had been turned off;  she took that decision away from me.  It was her way of saying, 'hey mom, I got this'.

"After her passing  The Sweet Cocoon was kicked into high gear.  We incorportated in October 2012, board of directors formed.  We are now a 501c3 nonprofit foundation and working hard to raise money to build The Sweet Cocoon.  Families that have disabled or seriously ill children, just seldom are able to catch their breath, much less relax.  They live in a constant state of exhaustion and stress, and I get it. Our home will be a respite and a retreat. We want our visiting families to feel like they are on a little vacation and be able to at least temporarily forget about their daily stresses.  The house has been designed, [and] we are hoping that within the next year to be able to purchase the property. "

Amanda's is a gut-wrenching story -- and very relatable for anyone who has experienced devastating loss.  But as grief begins to ebb away from the periphery of a human heart, one emerges from the cocoon and grasps the tendrils of life.  Amanda requested of me an Adult Cake Smash Photography Session and (with the help of the ever luscious Susie's Cupcakes), I aimed to please.  We talked of Heart Things, laughed at the Important Things, and created beautiful art together.  

Choosing joy is such a brave thing, and I couldn't be prouder of Amanda.

If you feel led to, please consider making a donation (HERE) to help the funding The Sweet Cocoon.  You can also find them on Facebook.