“I’m not interested in competing with anyone. I hope we all make it.” – Erica Cook

Competition can be fun…and it can be helpful. It can challenge us to push ourselves and each other to do better, work harder, and keep trying. But there is something I’m learning again and again in this journey with Eliza that extends beyond just parenting: it can also be poisonous. It can shift our perspective away from the things that really matter and create a sense that we aren’t all on the same team. And it can be so hurtful when usually the intention is anything but.

Eliza is 10 months old, and I still dread those stupid evaluation sheets that accompany every well baby visit. On each one, her scores dip lower than the last, and I find myself wanting to make notes in all the margins of just how far she’s come and how much she can do. And I hate that she’s already being measured on a standard chart with percentiles and ranges that begin a lifetime of comparisons. But the thing that stings the most sometimes comes from the very mamas sitting beside me in the waiting room.

I am on a private discussion forum with other PWS moms who seem to echo similar stories of moments when their children were sitting beside another close in age. The conversation starts out innocently…”How old is your little one? Is she walking yet? Talking? How many teeth does she have?” And when the answers are met with a simple, “not yet,” it’s followed with the other parent’s proud announcements of so-and-so’s steps, words, and four teeth. I am not saying that’s bad, but sometimes it’s hurtful. Especially when the next question is “what’s wrong with her?” NOTHING! I want to scream it out loud! She is on her own journey, and I have no doubt she’ll reach those milestones eventually, but I have no interest in racing to that finish line, because really, it’s not a race at all.

And it isn’t just kids with a diagnosis because if we think about it, all our children have special needs. They are all fearfully and wonderfully made with their own struggles and with their own gifts. So are we as parents! But somehow, we seem to have lost sight of the beauty in that diversity and instead focused on the details that don’t really matter. We see someone thinner or smarter or wealthier, and the green-eyed monster rears its head and convinces us that we are somehow less than.

But here’s the truth I’m learning: we really are all in it together. And thank God because I really don’t think I can do this parenting, living in the world thing on my own. I want to make it, I want my girls to make it, but I want everyone else to make it too. To make it not just to the finish line but also to make the journey along the way a little more beautiful than it was before…for everyone.



A good theme

“The plot you choose may change or even elude you, but being your own story means you can control the theme.” – Toni Morrison

We are back home after staying just one night in the hospital after Eliza’s surgery last Tuesday. The hips look good, but the IV was harder this time. They ended up having to sew a central line into her neck, but the good news is there were no real complications with the actual anesthesia. It wasn’t necessarily easier this time around…I was just as scared and sad to watch them wheel her away and just as relieved and grateful to have her back in my arms. I guess those things don’t change no matter how many times you walk the same journey.

I’m growing impatient now, though, and feeling more tired than I did before this latest surgery. Maybe it’s because Derrick has been on such a tough and time-consuming rotation. Maybe it’s because Amelia has been sick or because we have to start from square one with Eliza’s helmet. Maybe it’s just that I need a break that never seems to really come, and as much as people want to help (and absolutely do), there’s just not an easy way to hand over all the responsibilities that come with watching my girls even for an evening…another truth about parenting. It’s joyful beyond belief but also so demanding, so exhausting at times.

But I am letting Toni Morrison’s words sink in and remembering that while I may not always choose my plot, I can choose my theme. And if my theme were summed up in one word, it would unquestionably be gratitude. I know I keep writing about it, but it just keeps coming up. I think it’s because I continue to find myself at new crossroads where I have to decide whether to pull the covers over my head or greet the day. It’s not always an easy choice.

Like love, gratitude can be a feeling, but it is more often a practice, a choice. And even now as I write this, I can feel my heart calm just a little…and as I continue to sit in gratitude, the depth of it overwhelms me. The meals, the prayers, the messages, the nights of lying beside my favorite person in the whole world even if I haven’t gotten to see him all day, and of course, my sweet baby girls. To think God loves us even more than we love our own children is almost too much to fathom! But if I am going to be overwhelmed with anything, it should be by all there is to be grateful for…so I choose that. A good theme to any story, to any life.


“One of the most profound changes in my life happened when I got my head around the relationship between gratitude and joy…Both joy and gratitude were described as spiritual practices that were bound to a belief in human interconnectedness and a power greater than us. People were quick to point out the difference between happiness and joy as the difference between a human emotion that’s connected to circumstances and a spiritual way of engaging with the world that’s connected to practicing gratitude” – Brené Brown

It has been nearly five weeks since Eliza’s surgery…where does the time go? I am sorry it’s taken me so long to post an official update, but the time has been filled with new adjustments, new challenges, and of course, new joys. But with the next (identical) surgery just over a week away, I felt compelled to reflect on the first. It was a day filled with so many sweet words of encouragement and countless reminders both big and small that God was there too, carrying all of us through the fear and uncertainty and shining His light on the things for which we were so grateful. The procedure went as well as we could have hoped, though we won’t know whether it was truly effective for quite some time.

We were told before the surgery to expect that once in the cast, Eliza would likely be really upset and were even given advice on how to alternate night responsibilities so that at least one of us would be able to get some rest. And then we saw our girl.

While she was initially uncomfortable and hungry after waking up, she was calm within moments it seemed, happy to be held in my arms. I didn’t care about the weight of the cast or the way it awkwardly kept her from being cradled in my lap. I didn’t even care that both my arm and leg fell asleep from the heaviness of it and the strange position. All I cared about was that she was back in my arms…awake and in one piece. But true to Eliza, she added an unexpected bonus that I should really expect unconditionally by this point: her joy!

Over and over again, she teaches me that circumstance is no match for a sweet disposition and a positive outlook. I know she is uncomfortable…she must be! But she focuses all of herself on connecting with us in smiles and coos despite it all. Full spica cast? No problem! She is patient, forgiving, and so very, very dear!

I want to adopt her perspective and live in the moments of love no matter what they may bring with them. And I want to share that same sense of peace and tenderness with the people in my life because really, it’s the only thing that I can control…the only thing that no person or even difficulty can take away or decide for me. And when we do that…when we choose love, gratitude, and even joy in the face of difficulty or pain, it is somehow deeper, more beautiful, and more inspiring. It leaves us in awe.

I am in awe of this baby girl and so very, very thankful for the privilege of being her mama and learning first-hand each day from her fresh eyes. It is gratitude. It is joy.