When you make the conscious decision to become a parent, you are signing up to protect, care, and love a child with all that they are. You are agreeing to being their caretaker, no matter what obstacles you or they may face.
Something that I have learned is disability doesn’t discriminate. Disability doesn’t skip over people just because you are a good person, or because you think it can never happen to you.
What I have discovered in my time parenting, is that you really don’t have a choice in the trajectory of many things.
We did genetic testing. Routine ultrasounds.
When I was pregnant, I followed all the rules. I eliminated alcohol, deli meat, limited my coffee intake, the usual suspects…I was religious about going to appointments. I asked questions. I shared any and all of my worries.
The one thing that I pushed aside were my concerns.
Hindsight is 20/20. At the five-month anatomy scan, Hailey was “uncooperative.” They scanned all of her organs, took measurements, but had trouble getting good images of her heart. She refused to roll over.
“She will be a stubborn one” we all joked. I jumped up and down, drank orange juice, and…nothing. An hour and a half and she wouldn’t turn over.
“She is refusing pictures already- such a diva.” We joked again.
I did not love it and had a strange feeling, but was sent on my way and told to come back in a few weeks to see if she had turned so that we could get better images of the heart.
When I had returned for the images, and she was “stubborn” for most of the exam, but managed to turn a bit so the doctor could scan the one last organ.
All appeared ok and I was sent on my way.
But, beside the “seemingly” typical growing human in my body, there was also a pit that seemed to be overtaking my stomach…and it was growing, too.
There were times when I felt “off” if you will, about this pregnancy. It felt different then my first pregnancy with Noah.
I remember looking at an ultrasound image and questioning whether doctors could miss something. I even mentioned to a friend that I thought the image looked concerning.
But…I brushed the feelings aside.
During my pregnancy, I joked with friends, family, and coworkers that I was definitely going to have her early.
Well, as per my usual suspicions, I was correct. She came 5+ weeks early.
The minute I laid eyes on her, I knew.
Sometimes, I think about the moments that I knew all along- throughout the entirety of my pregnancy.
After days, weeks, and months of worry, I started to wonder how this could happen to my little girl. How could life be so cruel in the sense that a child would be born with the odds stacked against them?
My baby- pure, loving, and the very essence of innocence was born with a disability.
I became entirely immersed in everything and anything that would allow me to connect with others to help my child.
I saw so many people in the same boat- struggling to stay ashore and not sink into their own thoughts and feelings.
I saw people expressing the same sentiments- how could this be?
Disability does not discriminate- it came for my child, but one thing is for certain- disability will not be Hailey’s defining “quality-“ rather, it will be what she overcomes.
One day, Hailey will come face to face with her adversary, and show it who is boss.