This Journey Our Life

31 Days of Support: Embarking on A Journey (the day I found out my daughter was blind)

Camelia, Cami, NICU, Parenting, Special Needs, Special Needs Parenting, Visual ImpairmentRachel

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As I shared with you yesterday, I embarked on the special needs parenting journey over eight years ago. Somewhere in the back of my mind I pictured it as more of a detour, that one day our lives would return to the path of normalcy.

I didn’t realize this was the new normal for our family.

Even though our daughter had health complications from day one, we weren’t exactly sure what ramifications being born prematurely would have on her future.

Four months into the NICU journey doctors discovered that she had developed Retinopathy of Prematurity (ROP).  Cami underwent three surgeries to help prevent further detachment of the retinas, but it was unclear as to what extent this would affect her vision.

No one had a definitive answer to the question that was slowly growing into my worst fear. 

Will she be blind?

The Day I Found Out

I remember the day as if it were yesterday. 

A group of teachers from the special education program in the county’s school system came to assess Cami in our home.  They were vision teachers (or TVI’s—teachers of the visually impaired) observing Cami for the purpose of suggesting and creating goals for her upcoming placement into a special education preschool program. 

They had her play with blocks, books, and a few other similar activities they had brought along.  They were kind and friendly, asking me several questions about Cami throughout the assessment.

I was not prepared for the conclusion of their observations.

“We believe Cami will need to begin learning pre-Braille skills as part of her preschool program to help prepare for Braille reading….” They continued on in their explanation but their voices faded into the background as my mind tried to process what had just been said.

Why on earth does Cami need to learn Braille—Braille is for blind people!? I thought.

The weight of realization hit me hard.

I began to cry.

The ladies were comforting and I was especially touched when one of the teachers offered her empathy—ironically, she was also the parent of a child who was blind.

That was the first time I remember receiving Cami’s diagnosis of blindness.  Yes, we had learned the technical term of her eye condition when she had developed ROP in the NICU at 4 months old, but it wasn’t until that day—over three years later—that the reality of her diagnosis hit me.  The answer I’d dreaded all along had been given:

My daughter is blind.

The Day You Found Out

I know you remember the day you received your unimaginable news, too. 

Whether you suspected the diagnosis over a period of time or whether you were completely unaware, the hurt and shock was still there.  But I think you’ll agree with me over the importance of that day in your life.

Why?

You received an answer.

It was the day you embarked on the journey of parenting your special needs child.  

After finding out the extent of the damage ROP had caused on my daughter’s eyes I was able to move forward.  Now that I knew she was blind/visually impaired I could get busy equipping myself to help her.  Before, I had felt helpless in wondering.

Does this mean the feelings of helplessness magically vanish? Or that the path ahead will be free from other diagnoses? Of course not. In some ways it opens the door to a host of other feelings or leads to the discovery of another diagnosis. 

But that’s just it:

Receiving a diagnosis is important because it is the beginning, a starting point from which to move forward

In order to know which direction you must take in making decisions for your child (and for you) it is helpful to be aware of the specific journey on which you are traveling.

For those of you who have received a diagnosis—whether 15 years ago, 9 months ago, or only in recent weeks—I want to encourage and support you by reaching out to where you find yourself along your journey. 

When I wrote out the events from that day, the tears flowed again; but these tears were healing.

Today, I’m encouraging you to share about the day you embarked on your special needs parenting journey.  If you’re comfortable sharing that day publicly, feel free to leave me a comment (you could also share a link in the comments to a blog post in which you’ve shared your story previously).  If you’d rather share your story privately, feel free to email me here.

I love to hear from my readers and am blessed when you share your heart through the comments below.

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Have an extra minute?  Check out three of my blogging friends also participating in the 31 Days: