We read this submission by a reader and had to share it in full…

Our daughter turns 1 this month. We are tidying up our living room, and I pulled out a few of the books we’ve accumulated on our side table over the past year. They reflect the progression of her first year pretty well. My initial reaction was that familiar pang of sadness over “what might have been” or, really, what I expected. But I’ve learned a lot this year, and it didn’t take me long to reframe my thoughts about this collection. It represents what parenthood is all about. You can only plan and prepare so much. You adjust and do what needs to be done for those you love the most. And if you are fortunate enough to have a support system (no one can parent alone, much less parent a medically complex child) and are able to get more than three hours of sleep a night, you begin to realize that everyone’s journey is unique, and we just happen to love someone or someones with a journey more unique than most. We do not have control over most of the circumstances that shape our lives. What we do have control over is how we react to those circumstances, and how we allow them to shape us. 

Over the course of her first few months, we learned what our daughter needed to nourish her body. It was a slow and painful process full of tears and anxiety and so, so many sleepless nights. But since starting continuous feeds through her feeding tube, our daughter has been thriving. She started crawling just over a month ago, and we’ve gotten used to following her around with the pump and formula bag required to administer her feedings. This weekend, for the first time, I watched her crawl across the room on her own while wearing the backpack, half her size, holding her pump and formula. Was this a sad reminder of how different she is from a typically developing baby, and how much harder she has to work for things that come easily to most of her peers? Or was it a chance for our family to celebrate a unique milestone, filled with pride for her strength and determination? Both are true. But I get to choose which one to focus on. 

I won’t always make the decision that brings peace. We all deserve to say “This sucks!” and recognize how hard things can be, and be listened to and comforted and acknowledged. I also want to acknowledge that in the spectrum of challenges faced by families in the medically complex world, ours have been minor so far. Of course we pray that our daughter continues to thrive and that the medical complications possible with her genetic diagnosis remain just that — possibilities. But we have realized that nothing in life is guaranteed and learned to appreciate each good day, knowing that tomorrow might bring new challenges to face. 

Parenting a medically complex child, having a disability, living an atypical life are not things that people “overcome.” Our stories are beautiful and complex and valid and should be heard, regardless of whether they have what most people would consider “happy endings.” But I do genuinely believe that there are moments in our days and our lives that give us the opportunity to appreciate our journey and the journey of those we love. I’m making a conscious effort to recognize more of those moments. Thank you for letting me share one with you!

 —Medical Mom Milestones

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Ultrasound surprise

—Sarah SB

We went to the 32-week ultrasound to discover the luscious locks of hair that the baby has! With a few more weeks before meeting said baby, I am envisioning the epic helmet hair that will appear when they arrive. Who knew that hair could be seen floating around in the amniotic fluid?! Hopefully the baby will arrive looking more like Dolly Parton than Kevin from The Office. A ridiculous pre-parent win.

Once upon a desk lamp  

—Mother Goose

Our 2-year-old is learning to use the potty, and when he’s using a public restroom he needs me to read him a story to help him relax. During a hot, harried, spidery visit in a park bathroom, I realized I hadn’t packed any books. I rummaged through my purse and found… a Bed Bath & Beyond coupon. I pumped up my enthusiasm like it was the greatest story ever written and — it worked! Today I took a chance not lugging books again, and he only asked for “his coupon.”

Alexa, why?

—Tell Me I’ll Miss This Someday

My 4-year-old son had endless meltdowns this week, including one because I wouldn’t let him send an Alexa announcement of a fart sound to my daughter’s room at 5:30 a.m. and one because “the toast is round on top.”

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