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Baby Benny

Annalise has her second MRI next week, and it’s the first time I’ve really been scared. I keep telling myself that everything is going to be okay, that this time around we have a support team waiting on the other side of the test results. But I’m still scared.

When Annalise was four months old, we were Facetiming a friend of mine. She urged me to have Annalise’s eyes looked at because her eye movements weren’t normal. I called the pediatrician, and we had an appointment the next day. Twenty-four hours after that we were at Children’s Hospital. That’s when she had her first MRI that showed her optic nerve hadn’t formed correctly in either eye. The doctors weren’t sure if she would ever be able to see. 

I was heartbroken and devastated. Not at the vision diagnosis, but at the fact that I didn’t know how to help her. How do you teach a blind child to play on the playground or to grab a spoon to eat? A feeling of powerlessness came over me as I watched the doctors continue to run more tests.

The testing didn’t stop there. We were back a couple of weeks later for more testing. Then again when she got sick. Then again when she fell off the growth charts. And again…and again…

It was overwhelming to be navigating all her appointments alone. The test results were hard to understand, and each doctor had a different interpretation of what the results meant long-term. 

“She can’t see anything.” 

“She could possibly develop some vision as time goes on.”

“She’ll never see and that’ll never change.”

The back and forth between hope and defeat was exhausting, and I wanted nothing more than a straight answer.

That’s when we met Julie. Connecting with her through Early Intervention couldn’t have come any sooner. As soon as Julie read through the eye reports, she was able to reassure me that they didn’t explicitly say or even imply that Annalise would never be able to see. In fact, during our first session, Julie had a red light-up Mardi Gras necklace that Annalise began reaching for. We learned that she could see, or at least differentiate, between light and shadows. Julie began encouraging me that we would learn more about the details of her vision once she learned to talk. For now, the three of us would take it one step at a time. 

Soon the three of us became the four of us as Jodi, Early Intervention’s Occupational Therapist,  joined the team. Julie warned me that most vision-impaired children don’t crawl, and that they skip straight to walking even though crawling is a key milestone for a lot of other skills. But Annalise and Jodi had other ideas. Annalise was determined to crawl, and Jodi got to work helping her. She focused on developing her arm strength but more importantly, Jodi helped Annalise gain understanding and confidence in her body and where she was in her environment.

Then it happened. I was in the kitchen, and Annalise was across the room from me. I felt a thump on my leg and looked down to find Annalise had run into me! Joy exploded through me as the realization of this monumental moment washed over me. 

Soon Julie was encouraging me to be Annalise’s eyes, and we would practice guiding and feeling along walls and couches. Normally, 80% of a child’s learning is through vision and visual cues, but we began working to develop her tactile and auditory senses. Julie would prompt me to describe every room we were in as we walked around it and everything we were doing. We explored the world through Annalise’s hands and feet and kept background noise to a minimum.  It wasn’t long after that when the babbling began. 

“Shh,” said Kate, the newest member of the team, “Just let me listen to how she talks.” I smiled at this extroverted Speech and Language Pathologist who has brought so much energy to our afternoons. We just recently began working with Kate, but Annalise and I already love her. She has us singing lots of songs to make introducing vocabulary more fun. Annalise is making quick progress, singing and pointing along to “Head, shoulders, knees and toes.”

Next week is Annalise’s second MRI, and it’s the first time I’ve really been scared. But I know we’ll be okay. We have Julie, Jodi, Kate, and the whole Early Intervention team and we’ll just take it one step at a time.

This Christmas season I encourage you to give the gift of support to another family who feels alone. By donating to Early Intervention, you can change the way a mom sees the future of her child and you can provide that child the opportunity to grow and thrive. Growth happens one step at a time, and you can make that next step possible by donating today.*

Thank you for supporting other moms like me and other kids like Annalise.

 

Merry Christmas,

Dayna