Let this be the place we allow the beauty of Down syndrome to shine on the world.   

Parenting and Medical Needs

Parenting and Medical Needs

‘Oh you’re pregnant! Are you having a boy or girl!? No matter, as long as they’re healthy.’

Well, our daughters were not going to enter this world in good health, and we knew that. Our beautiful babes entered prematurely and with heart defects, going straight from womb to oxygen, instantly in need of medical interventions. For seven months now we have lived out parenting children with health complications, and tomorrow arrive at our peak moment, our greatest rival- Charlotte’s open heart surgery.

With each diaper change I find myself staring at Lottie’s bare chest, kissing it on repeat. Her porcelain skin, for this last bit of time, stretches as a smooth plain, free of ragged and risen scarring. Just under and below that thin layer however, erupt the short sudden shakes of her labored breathing. Shallow breathes pull in her rib cage, revealing her strained efforts.

Cody and I have joined a team, in the league of ‘parenting children with medical needs’. Here we frequently scrimmage panic, precaution, isolation, and fear.

Waiting for this major operation has been an ever nearing championship game. Surgery is the battle we endlessly strive to reluctantly reach. From our first fetal echocardiogram, mid-pregnancy, we have been anticipating the repair of Charlotte’s AV canal defect. Our little girl fought hard to make the requirement of six months and 12 pounds, and we too have put in our pregame hours.

Our family has done our all consuming, very best to get her as strong as possible, as big as possible, and as healthy as possible to reach this goal. We have learned that with navigating health complications come day to day complexities, vulnerabilities and a mountain of uncertainties that few others understand.

Germ awareness has gone from a lenient five second rule at the park, to changing clothes at the front door, sanitizing all things, and avoiding public exposure. The boys sacrificed a slough of summer social activities, play dates were sparse, and their birthday parties low key. Yes, the medical side has had an impact on our family dynamic, our social interactions and the way we plan into the future, but once again, through trial we have gained deeper wisdom and empathy. 

We are about to get some skin in the game. Tomorrow I hand Lottie over to a stranger, and have her wake four hours later, to see our faces from a bed of wires, tubes and gauze. Trauma will likely embed itself. We accept that, and stand at the ready. Offensively, we are praying over every bit of unavoidable confusion and broken trust. Our defense shifts in this inning from protection to comforting and support through her time of pain.

My advantage is having learned the strategy of the opposing team: fear. Fear loves to cock an eyebrow and ask, ‘So how do you plan to handle this?’ It puts a period where God wrote a comma. It has guided too many a parent to feelings of inadequacy and pressure to carry the burden of medical, futuristic unknowns. Don’t allow that! Battle fear alongside me, with hope and thankfulness.

Hope considers the situation and calmly says, ‘Easy does it, let’s take this as it comes.’ Hope holds on, taking your hand through the days one by one, some difficult, but all containing precious moments and encouragements that give you strength for the next step. I hate that my child must experience pain, but each day I have gotten to be her mother has been an honor and blessing, the most precious gift imaginable. Yesterday’s hope gave me another today. Our parenting will likely involve medical needs long term, but we are solidly thankful for any future that has these beauties in it.

Now my finger slips into Lottie’s palm. Aching with thankfulness at her strong grip, I reflect her small heart’s mighty perseverance. It’s game on. We have prepared, prayed, and are anticipating victory. We are avoiding fruitless fear that drains our energy, and are focusing on the game plan: Hope.

When Lottie Got Sick

When Lottie Got Sick

Feeding Our Twins

Feeding Our Twins