Finding Your Way

Our Story, Part 4: The Road Ahead

The past twelve months had been the hardest of my life as Merle and I watched Catherine struggle to survive. But our girl was a fighter and after a year of numerous hospital visits, countless doctor appointments, sleepless nights and fearful thoughts, we celebrated her first birthday. It was a triumph for our family.

But Catherine still had a long way to go. Right after she was born, we obtained an occupational therapist, speech therapist and physical therapist to start working with her in our home. She was so young that there was little they could do and after the surgeries she had so many complications, therapy came to a standstill. But once she was older and stronger, we started back on a consistent basis.

As time passed, her health improved. It was slow going, but it was going. Her doctor’s visits became further and further apart and we’d weaned her from 14 medications down to seven by the time she was three. That’s when I remember Merle saying, “Ok, now we can deal with the Down syndrome.” Up to that point, we focused only on Catherine’s medical issues. Down syndrome was just an afterthought. We’d always describe her as “a child that was medically fragile and oh yeah, she’s got Down syndrome, too.”

Looking back, I realize that by being afraid of certain things we probably hindered Catherine’s progress because we treated her like a china doll. At three, I was still feeding her baby food because I was afraid she’d aspirate. At five, she still had a pacifier because if she didn’t have it she would act out. We were nudged by dear friends, family and our therapist to move to the next level. In a sense, Merle and I were still toddling, but Catherine was ready to walk.

Our Story, Part 4: The Road AheadCatherine is 12 now and is a typical “tweenager” in many ways: puberty is right on schedule, she loves loud music and dancing, and her sassy attitude is always in place. She never misses her bi-monthly mani/pedi and loves taking swim lessons. Yes, there are challenges; she has some cognitive delays, difficulties with social boundaries and will occasionally use inappropriate language. But the most important thing is that she brings a smile to our faces and sometimes has us roaring with laughter.

If you were to ask me what could possibly keep me up at night, but instead I drop to my knees in prayer? Catherine’s future when Merle and I are gone. Our dream is for her to live on her own with a caretaker and continue to get an education and ultimately make a contribution to society. That is paramount. Catherine will be with Christina and we want resources in place so Catherine can continue on to the next leg of her journey.

As a family, we strive to move through her normal and progress at her pace. We work hard to meet her where she is, and vow to be strong enough to take her where she needs to go.



Read more of Our Story: Part 1: Getting The NewsPart 2: The DeliveryPart 3: The Surgeries

  1. Marie Dunn says:

    Hi Lillian:
    My 3 year granddaughter Riley is bringing us joy.
    Thanks for recording Catherine’s journey.

    I know of Catherine through Laticia Khalif.

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