By Nicolette Friend
You know, I think I find myself giving up hope.
Or maybe hope is just changing into something I didn't know it could be.
It's getting harder to work hard at things that seem unattainable. I work on her strength and flexibility because life sure would suck harder without those. But she's content with just laying in my arms and staring in my eyes.
And that's not so bad. I like doing that -- except when I have 4000 other things to do.
Funny how your desires can change. You start out wanting them to be healthy and strong and smart.
Then it became as long as she is happy. But we have no smile. No laugh. No cry. No interaction.
But you know what? She looks in my eyes now.
And that's big.
Because for a minute she's there with me. And I may never know what she's thinking or if she can.
But she feels good in my eyes. And I feel good in hers.
Nicolette is mom to Faith, her fifth child, who suffered HIE due to shoulder dystocia and possible cord compression.
Doctors told their family to prepare to care for a child in a vegetative state, who never be capable of reciprocating their love. She had no reflexes, no cough, gag, suck, or swallow and didn't appear to see or hear.
Seven months later, Faith has proved her doctors wrong in many ways, but the original hope that she would be unscathed -- a very common hope for parents beginning their HIE journey -- didn’t happen.
Faith has been diagnosed with Epilepsy, Cortical Visual Impairment, and Quadriplegic Cerebral Palsy.
Giving up hope sounds despondent, but for Nicolette, it really is a step to healing.
“I do not believe that it is impossible that she will walk or talk or eat one day. Faith is in the business of achieving the impossible,” she said.
“But as long as I held onto those desires, I had to constantly face the disappointment that she can't and likely won't ever be able to do those things.”
By giving up those original hopes, Nicolette could let go of all the shouldda, wouldda, coulddas, and embrace the miracle that Faith is and every moment with her is.
“As long as I held on to what I wanted for her, I couldn't fully appreciate what she IS,” she said.
Her new hope is that her little girl will enjoy a life that is full of love, and no matter what the future holds, she is a blessing that will fill their lives with joy.
Through all the pain and uncertainty, there is still hope that this life will be wonderful, she said.
“Hope isn't something contingent on circumstance. It, like happiness, is a choice. It is a choice that allows the joy to flood back in,” Nicolette said.