Thursday, February 28, 2013

Living with Rarities

When Marissa was just one month old,  I remember vividly sitting in the doctors office at UVA with the Geneticist (who looked and acted like Albert Einstein) explain to me that Marissa has a Duplication 2 Chromosome Disorder, and oh, by the way, she's the only one like it.   I can recall looking at him very puzzled and saying, "What?".  As he tried to go into all of the scientific data and I went completely blank, I heard for the first time of what would be many, "We will learn from Marissa".  "She will teach us about her".  I looked down at this precious baby girl and began to cry.

I was a new mother.  I was anxious.  The "What to Expect the First Year" book, went flying out of the window.  When she was about two months old, she popped up with what looked like a very large blister on the top of her head.  At three months, she was Medivac'd to UVA.  We have dealt with heart, lung, kidney, colon, eye and brain issues.  Marissa never has anything normal.  Her lung disease is still unknown to the medical community.  Top Pulmonologist have no idea what it is or if it will go away.  We treat her issues with medical interventions that we hope some way some how will sustain her life.  So it was no surprise that Marissa would pop up with a rare bacteria.  I guess if she's going to get something, she might as well get the most rarest thing. 

Marissa has been a great teacher.  Medications don't always perform the way they should because her DNA is so different from every one else.  She has stumped the medical community on more then one occasion.  Time after time, doctors have said, "Its Marissa, we are learning from her". 

As I watch her face this new battle, I just admire her for ability to fight.  Although at times, well most of the time, her strong will becomes difficult to manage, its her strong will that keeps her alive.  Marissa is a fighter.  Today, I saw her NICU nurse and she says to me, "I will always remember that girl.  She is the only baby that has ever taken off the heart monitors and picked up her breathing hood and threw it".  "She is mighty strong". 

So today, I want to give thanks for that fighter, strong will spirit.  Marissa is alive today because of that spirit.  Her ability to fight rare diseases.  Her ability to show the world that just because your different doesn't make you weak.  I am pretty blessed to be living and raising my hero.