“Call my Mom and tell her to meet us at the house.” I said to Mark as we drove home from the neurologist’s office. I could not do it myself. I knew the slightest crack in my voice would expose to my mom that something was wrong. I just needed them to be there once we got home so they could hear it from us, they could know immediately and they could offer support. Because we needed it.
“Your daughter has Spinal Muscular Atrophy.” exclaimed the neurologist. Silence. “How long do we have?” I asked. “One year but not more than two”. Silence. “And there is nothing we can do?” Mark said. “No”. Silence.
With three pairs of eyes staring at Getty as she giggled and cooed we were discussing the prognosis of our child and his patient.
“Thank you doctor”. We scooped her up and we left. We were taking her home. We were taking her to a safe place. We were taking her to a place that had her perfect crib and her perfect changing table and her perfect mobile and her perfect clothes all neatly hung in her perfect closet. All of her toys and blankets were perfectly placed in the room. The paint had just dried and it was a perfect shade of light blue. You see I made everything perfect. I had full control of Getty and her environment and now I had none.
My mom and dad were at the house when we got home. We discussed the diagnosis and the prognosis. Silence. Crying. Silence. Hugging. Silence.
Thankfully we (our family) were given the luxury of time. Getty was healthy to the point that she was never hospitalized that entire year after diagnosis. Looking back we had the luxury of time to make decisions about care. We had time to get used to the machines that were/are ultimately saving her life. To make decisions about diet. To make decisions about what this genetic condition was going to do to her and what it would do to our family. We had time to make adjustments. We had time to learn and to listen and to absorb everything we could from……..other families.
We are acutely aware that Getty was very lucky in her first year after diagnosis. It takes my breath way with the realization that we had no scares until we seemed to be armed and ready.
This diagnosis has changed the pendulum of our household. Our family looks vastly different than what it did on July 30, 2010.
As Getty’s mother, I am her willing and ferocious dragon. I will strike at anyone when need be. The words used are eloquent and resolute, but they will leave anyone feeling scathed. My metamorphosis started in the doctors office diagnosis day. I started out as a mama bear and have slowly morphed into a fire breathing dragon. I don’t like what it has done to my overall self. It has made me hard and hot to the touch. It is hard to take off this armor, but I would rather be in it than not have the tools to fight for Getty’s care. But my apologies do lay to the general population that has been burnt by my fire and probably did not deserve it.
A few days ago my heart had grown heavy. Typically there is a reason, but I could not quite place my finger on it until I sat down long enough to feel, to listen, and remember what that day entailed. I can say that life as we knew it changed forever. I can say from that moment we became new people. I can say that in an instant a new normal was created. I can say that we were scared. I can say that we were petrified with what was to come. Those are all valid, however those words seem superficial and perhaps generalized.
There is no way I can “sum up” or “generalize” what this all feels like, what it sounds like, what it looks like to anyone except for someone that is in it. It is that simple.
It is scary. It is bi-polar. It is routine. It is uncertain. It is real and what we do is literally fight off a beast every single day. Every single day to ensure that Getty is safe, happy, and healthy.
It has been four years since that doctors visit. We have held off this monster for four years. We have found ways to allow Getty to thrive when we were told to just “take her home and love her.” Well yes we have done that and then some.
There is absolutely nothing we regret. I have snuck away to write this post while Getty sleeps soundly. I have not left her side since she was born except for early mornings to actually get some things done around the house. Getty is happy, she is thriving, she is SASSY, she is living life with pure elation.
She has affected our lives for the past 1,580 days. She is an incredible human being who has the ability to get anything she wants with a look or a coo. She is spoiled. Getty loves, is curious, and is often hard to excite. You should see how how hard we try to get her to show interest in certain things. I have never jumped up and down or made a fool of myself so much just to get an eye brow raise. But man, when I get it, it feels like I won a medal.
Getty is adding and subtracting. She enjoys painting, music, and all things Monster University. Her timing of giggles and coos during a book or show can sometimes be creepy. Adult humor she is slowly getting and that alone is funny. Cognitively she is not impaired and so I relate her brain to a sponge that is just absorbing anything and everything, even things I don’t realize she picks up on.
This journey is a beautiful one, although it absolutely has its pitfalls and there are many times I have found myself down without skills to get myself back up.
So while today, and every July 30th will bring a heavy heart, it will also remind us of what we have. A beautiful child that lives and loves without abandonment. And so do we. She couldn’t be a better teacher.