Time Hop

Let’s catch up a bit, shall we? Today we are going to tackle about three years on the timeline, so buckle-up.

Our experience in the NICU was tumultuous but after six long days we finally got to take Brooklynn home from the hospital. The journey home was long and arduous as we had to drive through a freak November snow storm that had motorists stranded on the highway for 8 hours. We set off for our 30 minute drive home; three hours, one stuck car, and one 911 call later, we finally made it home– and our champion slept through the whole ordeal!

Normalcy

As we adjusted from a family of three to a family of four, I spent my days snuggling on the couch, resting when I could, wiping spit up out of my hair, and nursing a newborn with a toddler on my lap.

The best part of it all?

It all felt normal.

The last few weeks of my pregnancy and the first days of Brooklynn’s life were met with fear and uncertainty, but this was something I knew how to do. I felt such solace in doing the things every new mom does– changing diapers, sleepless nights, and endless nursing. Looking into her eyes I drew comfort from knowing that I would love her with my whole heart, no matter what her future looked like.

Something I learned that I DON’T love– EEG gel. Under the warm faucet in my kitchen sink, I scrubbed three-day-old dried EEG gel matted to her jet black hair. Several hours later, I learned the trick:

1. Soak hair in shampoo and conditioner

2. Repeat 4,000 times until it combs through

The next several months of Brooklynn’s life– our lives– was uneventful. We held our breath as we watched intently for each milestone. We responded with sheer joy as she reached each milestone– her smiles lit up my life and her giggles touched my very soul.

Early Intervention

At about four months, after following up with one of her many many doctors, we grew increasingly concerned about some or her physical development. She was falling behind on some milestones such as head control and rolling. At the suggestion of her doctor, we referred her to Early Intervention, for which she was an automatic qualifier due to her diagnosis. We were grateful for this because we knew that the “wait and see” approach was common for slight delays at this age. She began Physical Therapy services shortly after and was treated for torticollis, spasticity in her upper extremities, left body weakness, and low tone in her core muscles. We quickly realized that skills that were innate for most babies, were not so for Brooklynn. She needed to be explicitly taught how to roll over, sit, crawl, balance, and coordinate movements across midline. This continued to be a recurring theme for Brooklynn over the next several months and years as we tacked on Special Instruction, Occupational Therapy, and Speech services.

It wasn’t that she couldn’t do things, it was that coordinating her thoughts and movements took longer for her. We stopped asking questions like, “will she ever walk” or “will she talk”, and started asking, how?

How can we support her in learning this new skill?

How can we adapt her environment to make this skill easier for her?

How can we make it a little bit harder for her to take the easy path?

Neurodivergent

We had to continue to remind ourselves that Brooklynn was not neurotypical, so we shouldn’t expect that she would learn things in a neurotypical way. We came to the understanding that our society is not built for individuals that are neurodivergent. We, as her parents, needed to make it so that her world was built for her to succeed. We didn’t lower our expectations for her, we helped create a new pathway for her success– and we’ve been doing it ever since.

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