I want to tell you something about this smart and sassy girl right here.
I’ve talked about various challenges that Evalyn faces each day, including her congenital heart defects, and motor skill and speech delays. I haven’t really talked about specific diagnoses because those labels have not been integral to the messages I have shared. And in the big picture of who my girl is as a person, they do not matter.
But, today I want to share with you one of her conditions that impacts Evalyn in every way, every single day of her life – Cortical Visual Impairment.
To the Mom Struggling to Hold her Sh*t Together,
I have something important to tell you, mama: I don’t see you.
Now, don’t stop reading just yet. Please hear me out. It’s true I don’t see you, but I know what you are going through.
This little girl amazes me.
At one time, not too many years ago, I didn’t know if she would ever walk.
When your child is nearing their third birthday and hasn’t yet taken their first steps, fears like this come to mind. This is a huge part of being a special needs parent, you know. The fears. The questions. The what-ifs. They are things my fellow special needs parents and I know all too well.
The most helpless I ever felt was right after my daughter was born eight years ago.
Although she was considered full-term at 38 weeks, she was only 4 pounds and 2 ounces at birth and was born with a congenital heart defect. She experienced respiratory distress upon entering the world, and was immediately intubated and taken to the NICU. Just a few hours later she was transferred to the Cardiac Intensive Care Unit at a children’s hospital in another state, while I stayed put.
This right here is everything.
When my children think of me, I hope that they recall the places we go, the songs we sing, the books that we read.
I hope that they think of me as their homework helper, dinner cooker, and bath giver.
I hope that they know me as their safe space, their home base, their soft place to fall.