Sarah and her daughter Ellis
Will she ever walk? How much does she see? What can she do? What is her prognosis? What all is wrong with her? The labels and questions, they come. From friends and strangers alike. Well meaning as they may be, the questions, well….they can hurt.
We had three appointments scheduled this week alone for my 2-year-old daughter Ellis. A session with a vision specialist, her physical and occupational therapy appointment, and a visit to the eye doctor were up this time. The weeks aren’t always this full. Sometimes we only have two places to be instead of three. While my friends are busy hauling their kids around to playdates and extracurriculars our lives look more like: hospitals, offices, doctors, nurses, and specialists ― repeat.
It wasn’t supposed to be this way. On November 6th 2014 I gave birth to a healthy and beautiful baby girl, Ellis Claire Rodriguez. She was born after the death of her Father, which is another story in and of itself. Ellis came into the world with dark brown hair and the most gorgeous face I ever did see. She was perfect.
A mere two weeks later everything unraveled at the seams. My healthy baby girl woke up one morning feeling hot and acting lethargic. She was rushed to a nearby Children’s Hospital and by that evening placed on a ventilator, diagnosed with sepsis, bacterial meningitis and fighting to remain with us.
For two excruciating weeks, I watched my daughter battle for her life. I watched her fight for every breath on her ventilator, until she eventually stopped doing that altogether. A machine was keeping her alive and we were told there was no hope for her survival. Doctor’s said if my daughter was to live, which was highly unlikely, she would be in a vegetative state ― unable to speak, walk, give or receive love. I was gutted. When she was only 30 days old, I made the horrific decision to pull Ellis from her ventilator, hold her in my arms and say goodbye.
Only she did not die.
In defiance of reason, logic, and every medical book ever written ― she lived. Call it what you will, for some it’s a marvel or medical mystery (our family is quite keen on the word miracle). No matter what you call it, she’s here when we were told over and over again her CT scans were “incompatible with life.” But live she does.
My girl is now two years old and the opposite of what they foresaw. She is a little love bug, a chatterbox, as determined and silly as they come. Yet she is also extremely developmentally delayed. That last sentence is a hard one to type; it’s even harder to live out.
The decision to remove someone from a ventilator is difficult beyond belief. Ours was made easier by the fact that she wasn’t breathing whatsoever on her own. But it was also made easier by one huge factor ― quality of life. According to the medical professionals, she would have none. In my eyes, it was easier to tell her goodbye than force her to a life sentence of what I was told would be a vegetative existence, most likely in an institution giving her the care she needed. I couldn’t bear the thought. As much as I wanted her here, I did not want her to have to endure that kind of life.
Now she is here, and her life is nothing like what we were told it would be, yet it is also unlike what a “typical” two-year-old would experience. Her days are not filled with playdates, dolls and play-dough. Instead, most of her time is filled with therapies or doctor’s appointments; her activities strategically laced with therapeutic elements. There’s a rhyme and reason for everything we do, from a toy that lights up, to a doll with certain texture. She has braces for her arms and legs, a vest to stabilize her core, medical walkers and strollers; the list goes on and on.
Ellis in her Kid-Walker at a Therapy Session
Even harder than all of the things we have to do, are all of the ways people want to label her. We live in a world where others want make someone as simple as a hashtag: #specialneeds #tbi #braininjury and the like. Sometimes it’s not so simple. I wince as I hear others slinging around the words “retarded” or “special” as insults when I know those are possible future categories people will use to define my sweet girl. Each new therapy means a new evaluation, which also means a yet another new label column. I brace myself as a mother while awaiting the results of just which one my daughter currently falls into.
People ask for updates on how Ellis is doing, and even more so want to know what her future holds. That’s a tough one, because no one knows what her future holds. Cognitively speaking, she doesn’t seem that far off from where she should be. She eats finger foods, grabs for her toys, giggles at funny things, says words, and gives you the what for if she’s mad.
Ellis in her core stabilizing vest, receiving Vision Therapy
Where she seems to be having a tougher time is the physical aspect of her recovery. She can sit for brief stints and roll over, but at two years of age she has yet to walk or crawl. She is taking steps towards both and her therapists are ever encouraging about her progress. As long as she’s moving forward, that’s all that matters, I am told. As her mama, it’s hard to watch her struggle. This is not what I wanted for my daughter, no sane parent would. It’s difficult to even put into words. Never could I imagine this is how our life would be.
But yet, she’s here, and the light of our lives. I’m grateful for this fact, no matter what may come. Even though I struggle to understand why we still have to endure such a difficult road, the one thing I never question is whether her life has purpose or meaning. It does in abundance.
Ellis makes us all laugh a hundred times a day, her smile envelopes the room. She teaches me even greater levels of compassion. She teaches me patience. She teaches me determination. She teaches me to love and not judge others. She teaches me to never give up, because you are usually on the cusp of a victory when you want to the most. She teaches me that pain births beauty in immeasurable ways. She teaches me what really matters in this life, and it’s the simplest of things.
The world will always want to define her, and that’s just fine. We tell her all the time, there’s nothing she can’t do, because her story has shown us that time and time again. Yes, she has her struggles, but don’t we all? No human existence is without its challenges. Even greater than her struggles, is the incredible gift of her life, one that is blossoming before my eyes.
To me my daughter is beyond definition, but if forced I suppose I could try. She is beauty, she is grace, she is grit, she is fortitude, she is love, she is joy, she is peace, she is gentle, and she is strength. She is Ellis. She is my baby girl.
Ellis Claire, age two
*To hear more from Sarah, and to follow along on her journey, click HERE.
To see her life in action click HERE to view her Vlog.
Sarah’s Memoir “From Depths We Rise” is in stores now.