Tidal Waves

It has come in waves. Tidal waves. Each one wiping out the way we saw our lives unfolding and forcing us to build yet another version of normalcy for ourselves and for our family.

There was a point during Kendall’s first year of life when I stopped reading the books, magazines, and newsletters outlining the typical infant milestones. I’m surprised now that I didn’t list that moment in her baby book just to have something to document. By the time we took her for her 15-month check up, it was clear that she was not following the normal progression. She was making her own growth chart–physically and developmentally–a few months behind her peers, most of whom were walking and chattering while Kendall was content to crawl and babble. Our pediatrician suggested that we have her evaluated by a variety of therapists “just to be sure.”

I remember calling my mom, who is both Nana and a Teacher of the Deaf and Speech Pathologist, as soon as we got home from the pediatrician’s office, sobbing because I had not been able to teach my precious daughter to walk, to speak, or to stack blocks. I wept because I had failed to do what countless parents had been able to accomplish. Even though Tom and I had prepared and researched and planned for parenthood, basic developmental markers seemed so much easier for other people’s children to reach. We thought we were ready for this job!

Whoosh!

Kendall received a few months of physical and occupational therapy following her initial evaluations before she was discharged. They believed that her development had progressed to within normal limits and that she would continue to make gains on her own. At 18-months-old she was now able to walk (although she really preferred to crawl), she could crawl up steps (if you forced her to), she could stack a few blocks (but didn’t really want to), and she was starting to use actual words (I think…). “Don’t worry–she’ll catch up!” the OT said, as we signed off on the discharge paperwork.

The next wave came after we moved to New Hampshire when she was two-years-old. Kendall had been making gains in her own way, in her own time, so we remained hopeful. Her new pediatrician looked at the notes from her therapies and said that we might want to evaluate the situation again in six months. We called in three.

Whoosh!

More evaluations brought more therapy through Early Intervention. Comments such as “I have never seen a child approach things in that way” were interesting but not encouraging. The results of the evaluation were mixed: she was on par with her peers in a few areas, such as her ability to problem solve with things like puzzles, but still was not doing many of the fundamentals, such as mimicking motions or really using language. But, again, we were told that we only needed to get her up to speed. “She’ll catch up!”

The year that Kendall turned three we were becoming acutely aware that Kendall was not experiencing the same social scene as her peers. In August of that year, we attended a third birthday party for our friends’ little girl. Their daughter had chosen a jungle animal theme for the party, and she danced excitedly as her friends arrived with gifts, immediately dragging them into the dining room to see the trays of cupcakes. In October, Kendall also turned three. Tom and I prepped her for days prior to her birthday so that she would know that this day would be special. I chose a pumpkin theme so that we could also begin to prepare her for Halloween. We invited our friends and their children–no self-selected friends, as she didn’t have those types of relationships. We lit the candles and sang; she looked at us bewildered. I blew them out, and we cheered. She poked at her cake and then ate applesauce.

Whoosh!

Early Intervention services ended on her third birthday, and we transitioned into the world of public education. Our child didn’t really need an IEP, did she? She didn’t need a Special Education preschool, right? I was scared to send her into “the system.” Her new teachers and therapists assured us that we were only helping her to get up to speed, preparing her for kindergarten. Better to help her learn these skills now. But the question remained, why hadn’t we been able to prepare her? Why was she struggling to learn and develop?

That school year ended with the IEP progress meeting in which a group of professionals looked at us with concern and told us that Kendall was not making the progress they had expected.

Whoosh!

Hearing tests showed excessive fluid in her ears. Oh, that’s the problem! And the Ear Nose and Throat specialist noticed her enlarged tonsils. No wonder she can’t speak! Following the surgery, we should see significant gains. Well, we did…but there was a lot of ground to make up.

Whoosh!

Then there were the staring spells that started before her fourth birthday, which led to a neurological evaluation. Next came the 24-hour EEG in a video-recording enabled hospital room (no pressure, Mom and Dad) that showed electric spike waves every three seconds during sleep. Then a lengthy MRI was scheduled (that appointment quickly became Dad’s responsibility). And then…

Periventricular Leukomalasia.

I could barely stand up. The pressure from that wave was so great.

Tom and I sat in shock as the doctor showed us images of permanent lesions in our child’s brain that were preventing the flow of information and causing the nighttime epileptic activity. The lesions were not going away. Nothing was going to fix it. She was not going to catch up. Everyone had been wrong, including us. We would never know the “normal” that we saw all around us. I know that each family is different, but we weren’t going to come close to the experiences our friends were having as parents.

Each wave has brought new information and changed the way that we look at ourselves as parents, as a family, and as a couple. The constant ebb and flow has meant that we are continuously reevaluating priorities: how we spend our time and our money, how we cope with outside stressors, how we plan for the future, and how we bring one another back to center.

Most aspects of the way we parent are completely different from what we expected. Even though I grew up surrounded by special education teachers and their students because of my mother’s and my grandfather’s careers, I never imagined that my child would part of that group. I didn’t expect that my day-to-day routine would include anti-convulsant medication and prescription sleep aids (for Kendall, not for me. I could fall asleep standing up right now!). I didn’t expect us to be reviewing IEPs and applying for one-on-one support for her to attend summer camp. But this is how we parent!

The one thing that is exactly as we expected, though, is how much we adore our child. For all of her spunk, her amazing affection, and her forthright approach to the world, she is perfectly Kendall in every way.

What has been the most unexpected but amazing surprise, what we affectionately and sometimes ironically call silver linings, has been the number of people we have come to rely on for support. I never imagined needing or being willing to accept the amount of support we receive on a regular basis, but we could not do this without Team Kendall!