What does love look like?
I almost lost my daughter.
It was February 23rd, 2011. I was positively giddy. I was pregnant with my fourth child and I was on my way to my 4-month organ scan to find out the sex of my baby.
I was blissfully naive about just how wrong things can turn within moments. And so it happened, I got the diagnosis that would forever change my life.
My unborn baby had a severe congenital heart defect, Truncus Arteriosus. My OBG/YN held my hand as I wept uncontrollably. He told me "you have a lot to think about".
Think about? What, like abortion? Oh man....I convulsed with pain and sorrow.
This was only the beginning.
I felt my baby kick and swim inside of my swelling belly every day. With each movement, the pain and suffering of knowing what her future held was emotionally debilitating. My husband and I decided that we were going to give this little child growing inside of me a fighting chance. She deserved that.
I'll never forget my husband's words when I asked him "what should we do?" His response was "well, she will have a heart defect, that means we are going to need to give her a lot more of our hearts."
My daughter Noa was born on July 27th, 2011. She had her first open heart surgery when she was just weeks old. When she was 3 months old she went into critical condition and suffered a cardiac arrest. Thank god she was in the hands of the nurse when the coded and by the grace of God, she made it through. She's gone through 3 cardiac catheterizations and in March of 2016 she had her 2nd open heart surgery to repair her heart yet again.
My friends often ask "so is her heart fixed now?". The answer is this - her heart while anatomically correct will never be fixed. You can't "fix" congenital heart defects.
Her heart, no matter how many surgeries will never be like a normal heart. It is scarred. Tampered with.
Congenital heart defects are a life long disease that requires life-long care. She will need to be followed up by a cardiologist her entire life.
Today my daughter is doing amazing. She goes to kindergarten and is one of the healthiest little girls.
But I know what lurks.
This past year alone, I've known 3 children who collapsed suddenly and died instantly as a result of their congenital heart defects. These were children that were given an all clear from their cardiologists. They said "his/her heart looks great, come back in 1 year."
I don't know what the future holds for my daughter or for any one of my children for that matter but what I do know is this.
I have been taught that none of us are guaranteed a tomorrow and that it's imperative to live each day as if it could be our last. I've been reminded that the most routine days are the best. Love to me is knowing how strong our family is as a result of the challenges we have faced together.
I am a better woman, mother, and friend because of the pain and suffering I've gone through together with my daughter.
Love is understanding. Love is unconditional. Love just is.
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