Sunday, August 7, 2011

Our messy little miracle. . . Marriela

Well, this is my first attempt at a blog.  Actually, that's not entirely true, I've been keeping a caringbridge page for years, but this is different.  A different blog for a different reason.  I am accustomed to writing about the kids and their medical issues and such, but not so much about the "kids" themselves.  I suspect, that many have a hard time imagining what our life is like, though to us, it's just life; to others it may seem a bit overwhelming.  So comes the time to start "blogging" on the inside workings of our unique and organized chaos.

Since today, August 7, 2007 is the 9th birthday of one young lady named Marriela Marie Curkendall, I thought she would be a perfect person to start with.

Most people that know Marriela and many that are even close to her, don't know about Marriela's start to this world.  She was born to a mom who was not well in many ways.  She was sick in about as many ways a person could be sick.  Marriela's birth mom was in foster care as well and sadly was abused by an uncle from the age of 7 on.  By 9 she was an alcoholic, 13 a crack addict, 16 pregnant with her first.  She was diagnosed bipolar and schizophrenic (who wouldn't be after all that trauma!).  When she came to the hospital and was already in advanced labor due to a kick in the stomach followed by a tumble down a flight of stairs, she thought she was about 4 months along.  Too early to be viable, the hospital staff let nature take it's course.  Mom was given some meds to ease the pain of labor and she drifted off to sleep.  The nurse at one point took a look under the covers to see if there had been any progress and to her horror, there was Marriela laying in wait for someone to discover her struggling body trying to breath with all of her might.  The nurse immediately realized (God was shining down on my baby) that this little bag of skin and bones was farther along than her mom had thought.  The staff worked hard to get Marriela stabilized and transferred to her new home, the NICU of Floating Children's Hospital in Boston, MA.  She was severely drug addicted, had withdrawl that literally shook the breathing tube right out of her mouth as she shook uncontrollably for over 2 months until the drugs cleared her system.  She suffered one infection after another and took over 3 months to finally take her first breaths without the help of a ventilator.  Marriela is a fighter.

We met Marriela on her first birthday, 8 years ago today.  She was so tiny and had finally come to the point of not needing oxygen 24 hours a day.  I picked her up as our daughter 4 months later.  She was 16 pounds at 16 months.  She lost weight daily it seemed as we struggled to find a diet or formula her body would tolerate.  Her care in Boston was less than optimal and she was under fed, under nourished and had profoundly under-treated asthma.  She was in our home for only 2 days before I was sitting in the ER watching her breathing away at 100 breaths a minuted and fighting for each and every one.  Marriela was quite medically fragile at first and our focus was on the medical and severe developmental delays she clearly had.  At 18 months she was more like a 4 month old in virtually all areas.  The focus remained there over the first year and a half as she began to grow, make monumental gains and even began to attend preschool!

At 3 we began to notice signs of things to come.  We knew going into this, that she was strongly predisposed to mental illness. . .she had a brother who was hospitalized by the age of 9 with severe issues.  So we began the search for the elusive and at times unattainable, pediatric psychiatric services.  We started with a Developmental Pediatrician who worked with us for 3 years, trying many modalities to help us learn to cope and medications to help soften Marriela's "symptoms".  Finally, after using the last of the meds he felt he was qualified to use, he referred us to our first true psychiatrist.  He was a good man and wanted to help Marriela, we tried many things including psychotherapy.  The therapist was awesome and in the end, he left feeling defeated. . .like he failed us.  No one has failed us, Marriela is a unique individual who refuses to follow protocol.  She doesn't respond to meds the way she should, she doesn't follow the rules of her various diagnoses like she should.  The books weren't written for kids like Marriela.

Now, with all of that said. What I really came to say is the following.  Marriela is an awesome creation of God.  She was put here, not as a mistake of her mother's, oh no, she was put her BY her mother. . . for us.  For that, I thank her mom.  I wish her mom had an easier life.  I pray she has found some solace knowing her children are loved by other families, and she has made many couples happy as they complete a part of themselves as only a child can.  She has formed many families, at last count, 6 that I knew of.  Marriela is one of those lucky ones we were blessed to find.

Marriela, oh where to start!  She is a challenge, she goes from laughing and having a great time to raging that "She's BORED!" in the blink of an eye.  She can drop you to your knees with laughter at some of the things she says or cause your heart to just burst as you watch her have to conquer one fear after another every single day.  She has the development of a 4 year old, the body of a 9 year old, and a mind that refuses to allow her any real peace from anxiety, anger and frustration.  Yet, Marriela has more empathy and love in her than her developmental and mental status says she should be able to have.  For example, Marriela speaks freely and lovingly of Ethel, our precious foster child who passed after just a few short weeks with us.  She LOVED her baby sister with all that a sister could love.  She smiles daily and says she wishes Ethel was still here.  Today she announced "I will dance with Ethel in Heaven.  When I get old I think."  She will happily go up to a child in a wheelchair or stroller that has any physical similarities to Ethel and share how beautiful that child is because they look like her sister, Ethel.  Marriela is also going to have a banner 30th birthday year.  Apparently, this is when we are all (virtually anyone that Marriela knows) will have to donate our cars (including but not limited to a: 12 passenger van, Dodge Caravan, Chris' car, and Toni's truck).  She will also get all of the baby stuff she needs, as she will be having her first baby at 30, including Ethel's crib from the basement.  She is getting the neighbors infant car seat (and oh yes, she has told the neighbor) and apparently will also be aquiring her little brother, Sergio as well.  I'm not sure how he got thrown in the mix, but she's convinced he will be the same size (and hey, she may be 100% right) in 21 years and will need her to take care of him!  Marriela loves riding her bike and is terrified of toilet paper roll holders in public bathrooms, yet her anxieties make her have to go the bathroom about ever 1/2 hour, a cruel irony.  Marriela HAS to bounce she she listens to music, so if you're the unfortunate one to sit on the same bench with her in the van, you WILL have a headache at the end of the trip.  She bounces hard enough to shake the whole van but does so in such amazing rhythm you almost forget the van's shaking like it is.  She knows the words to virtually every hip hop song out (oh, spare me the parenting lecture. . . you try to find something else that keeps her as calm as hip hop and I'll be happy to play it!).  How she knows the words to these songs when we only listen to the radio in the car, and yet can't remember things we talk about daily is beyond me.

In the end, Marriela is a very Messy Miracle in the Making.  But, she's worth every single drop of mess she makes.

With Love,


  1. Renee...this is a very touching blog. I too have a child with many special needs and challenges. I would not change her for anything. She is indeed a miracle!! One I thank god for every day. Thank you for sharing your story and letting others know they are not alone. Shayne

  2. Thank you Shayne! Welcome along for our ride and I'm sure you'll find many of the daily things here, hit close to home with you. Hope you're having a great summer. Hugs, Renee