My Son’s Diagnosis Taught Me an Invaluable Lesson About the Holidays


I’m an older mama. You know, one of those crazy ladies who had a baby in her 40’s who makes people wonder, “Was that planned?”  Well… (enter awkward laughter) “Yesss!” and… “Nooo!”

Most of my life I’ve battled a genetic disease called endometriosis. This disease wreaked havoc on my bodily organs, left me sick during many seasons of life and played funny tricks on my fertility. So when I found myself with a healthy pregnancy at 43, I was overjoyed. The odds were not in our favor on many fronts; I only have one fallopian tube and one ovary, terrible scar tissue, and I’ve experienced huge age gaps with my kids involving several miscarriages.

Yet, by some miracle in my 20’s, 30’s and 40’s, a baby — or two or three — came miraculously sneaking through a broken endocrine system. Not only did those pregnancies clean up the damage of rogue endometrial material, they also brought beautiful children into our lives. It’s a complicated story that ends with the simplicity of life… and six healthy kids. Simply amazing!

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The sixth child came to us two years ago at holiday time — not only by surprise but also by storm. Not literally — the weather was pretty mild on that middle-of-the-night trek to the hospital on the last day of November. When I woke my husband to tell him, “It’s time,” we’d had a baby lull for six years, and at my age I never thought I’d be saying those words again. My labor and delivery went unseasonably well. As smooth as clockwork, like the pregnancies in my 20’s, I gradually progressed from light labor to hard labor, a few pushes and voilà! A baby! Yet, the biggest surprise of all and the storm that did ensue was heart failure.

We didn’t see that coming. Although we never received a formal prenatal diagnosis for Down syndrome, there were soft marker indications in an early ultrasound that gave us some idea of the possibility. I could also tell by my son’s sweet profile in his 20-week ultrasound picture that he had different facial features than his five siblings. Therefore, I sorta knew about that little extra my son was sporting in his designer genes. But heart failure, EKGs, echocardiograms, NICU life-saving efforts, a dramatic transfer to the children’s hospital and every modern medical trick in the book to save my son’s life… that we didn’t anticipate.

It was all complicated. Had we known about Gavin’s heart issues in advance, I’d have planned to give birth at the hospital adjoining the children’s hospital, and we’d have had the cardiology team ready with a birth plan that included immediate treatment to a known condition. Instead, everyone scrambled; there were so many unknowns, questions, doubts, fears and critical moments that turned into weeks of tangled-up trying times.

In the midst of all that exhausting bewilderment were the holidays. It was exactly this time of year, two years ago, during the hustle and bustle of Christmas planning, budgeting, gift-buying, treat-making and attending special events with co-workers, family and friends that my son was born in heart failure. In fact, the day Gavin arrived, I’d planned a haircut and color appointment, babysitting and a wonderful night out at my husband’s company Christmas party that we look forward to every year.

This older, seasoned mama who’d never graced the doors of a children’s hospital, never had a sick kid beyond common colds and flu, never contemplated the world of kids’ medical needs and little ones in critical condition — the wires in my head criss-crossed, and my stressed-out mind beeped incessantly like the gadgets and gizmos attached to my son’s newborn body keeping him alive. I had a hard time keeping it straight and no idea how to manage my family’s needs during this blustery family venture.

As it turned out, holiday time is a great time to have a special needs baby in critical condition. Yes, everyone’s lives are busy in December. Every family has added stress and more to do than time allows, but everyone seems to have a heightened awareness of who’s in need, too. We absorbed this love and holiday benevolence like the covering of a warm, thick blanket when our community rolled up its sleeves to help our family through my son’s open heart surgery at 2 weeks old, our 6-year-old’s birthday party and even Christmas.

Just as the storm of my son’s health turned our lives upside down, the meals that rained in during those weeks to care for my family — the gift cards, the treat bags for me as I sat in bedside vigil and the soft baby blankets and stuffed animals sent to my son in the hospital — served to turn us right side up. Miraculously, my husband kept working his job, and our kids were perfectly cared for while the tempest of critical health issues eventually blew over.

One meal I’ll never forget came December 18th. When my dear friend, Ela, called to tell me she was on the schedule that day to bring our family’s vittles, I told her it was my son’s birthday, too. As she inquired about what he’d like to eat, I tried to deter her from doing anything special. She insisted. OK. I told her every year I make him a baked ham, garlic-mashed baby red potatoes with sour cream, fresh green beans pan-fried in bacon grease with brown sugar and bits of bacon. Oh! And pistachio pudding! I never thought how complicated that meal was on a weekday school night, one week before Christmas until I had to tell a person outside our family the ridiculous things we do to make birthdays special.

Ela said, “No problem!” She was on the job. I mentioned we do theme parties, too. My son picked Santa Claus for his theme that year, so Ela and her daughters not only replicated my son’s gourmet dream dinner, but they made him a homemade cake in the shape of Santa’s face, complete with a cascading beard made of mini marshmallows. I’ll never forget collecting that meal in the howling wind of the hospital’s parking structure and driving home with gift-shop-purchased toys to make magic happen for my family. Magic that wouldn’t have existed at all had it not been for the wonderful friends and family taking on tricky tasks to make my life simpler. All I had to do was go home and enjoy my family.

We received those gifts and the miracle of my newborn son’s saved life — and a precious aunt and uncle from Ohio drove our college-age daughter home to Michigan for a surprise visit to see her new baby brother. It was finals week of her freshman year when all this business blew up. When she popped into the hospital room unexpectedly, it almost seemed like too much. I thought my mama heart would burst from all the joy and sorrow mingled together in one short time. And that’s not all… my industrious sister-in-law, who collected my family of eight’s Christmas wish list, did all the shopping, wrapped all the gifts and cleaned my house, cared for my children at our home. Her sacrificial gift of service made my job so simple… when my life had never been more complicated.

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Two years later, I contemplate the gifts of life and family and friends and community who blessed us beyond measure, and I cherish the most beautiful gift of all I learned in that time: simplicity. It’s the simple things in life that matter most and make the magic. In fact, when Gavin’s birthday came again this year on November 30, we’d just returned from a trip to the other side of the state for our family Thanksgiving gathering. It was our daughter’s last day home on break before she had to head back to college in Cincinnati. It was a quiet, serene Sunday smushed into noisy, busy holiday time. So I planned a birthday like never before: super simple.

My husband shopped for the food: frozen pizzas and store-bought cupcakes with a #2 candle. The gifts were effortless, too: one favorite board book to replace a worn out copy and an Elmo cell phone from Target. Gavin’s big gift was a huge stuffed Elmo procured from a neighbor’s road side “FREE” pile of hand-me-downs. All the kids were home, which is rare thing when you have teenagers, yet the magic in the simplicity felt like a carry-over from two birthdays past.

As an older mama, I will never say I’ve been there and done that. In life, there’s always something new to learn and life’s surprise gifts bring with it invaluable lessons. What matters most in the holiday hustle and bustle is the time we spend together, not the frills and froo-froo and all our grandiose plans to make it amazing. Fancy birthday and holiday plans are awesome when time and opportunity allow, but good health and the opportunity to rejoice in togetherness will never be lost on this family from the miracles that came to us by storm in 2012.

This experience taught me that simplicity is the real gift we received during that special holiday time when our lives changed forever. All of those gifts, provided by the ones we love, gave us the opportunity to realize magic happens from grateful hearts over the simplest things: the gift of life when all odds are against it and the family and friends who rallied to celebrate that life.

This is the true spirit of Christmas… and all year through.

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This post originally appeared on Above All Else, Love.

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