They stand, side by side, at the easel. Footy pajamas, chalk grasped in little hands, colorful scribbles on the board. I peek at them from the kitchen, smiling silently, not wanting to disrupt the sweet sister moment. Eventually I creep in for a quick picture, then sneak back out and leave them to their art.

To the casual observer it might look like an everyday kind of moment. Cute perhaps, but simple, nothing to celebrate. Yet to me it is a moment to treasure.

There have been many moments to treasure these past months. Little everyday moments. Simple moments. But each is an incredible gift.

For so long I carried a weight of fear and stress. Since before Hope was born I carried it, like a heavy pack I couldn’t take off or a dark cloud hovering always overhead. In a strange way I became so used to the weight of it that I didn’t realize how heavy it had become until it finally lifted.

The journey will never be over for Hope and her complicated heart, but another huge hurdle has been crossed and I feel like I can breath more easily for the first time in a long time. Our brave little girl is healthy and growing, her heart more stable than it has ever been in her life thus far. Her scar begins to fade and our days settle into a blessedly comfortable routine. Life feels shockingly “normal”.

Sure there are things that stand out, those atypical things associated with Hope’s care. All winter we’ve avoided crowds and most public indoor places, staying home and inside more than we’d like. But as cold and flu season wraps up and warm weather inches closer, we look forward to being out and about more. Feeding continues to be a challenge and my calendar is marked with bi-weekly OT and PT visits. But the in-office doctor appointments have become less frequent and we’ve seen incredible progress in Hope’s mobility, language, and overall activity.

And every day, in the little, simple, “normal” life stuff, I find moments to treasure.

The way her hair looks after a bath.

Her tiny voice saying “hiiieee” as she peeks over the edge of her crib to let you know she’s awake.

The sound of her laughter.

Her nestle-close hugs.

The way her smile lights up her face.

Watching my girls play, side by side, seeing how they love each other.

Little, simple, normal moments… and yet so much more. These are moments to treasure, each and every one.

 

Hope Update: This is much later in coming than it should be, my apologies for that! Hope’s heart surgery in Boston (in November) went very well and the surgeon was able to do some work on her heart towards a potential bi-ventricular repair. We will have to wait and see how her heart responds, namely if the left ventricle and valve on the left side grow enough to be able to proceed down the bi-ventricular path. If not, she also had the necessary 2nd step done for a single ventricle repair. She should have a longer break from surgeries now which we are very thankful for.

Her recent surgery makes her heart more stable, but doesn’t change her oxygen saturation levels, which remain in the low 80s. These would not be expected to increase until after her next surgery.

We made it through winter without any major illnesses and Hope has been growing steadily thanks to continued tube feedings. She eats by mouth, but inconsistently, so we do rely on the tube for the majority of her caloric intake. She is crawling everywhere and stands and walks when there is something or someone to hold on to. She talks constantly! I love seeing her personality develop and come through more and more.

We cannot say thank you enough for the prayers throughout our time in Boston and beyond. We continue to appreciate prayers for Hope… that she remains healthy and developing, that her heart stays strong and, ideally, grows enough that a bi-ventricular repair is feasible. Prayers also for her eating to improve (and for Mommy and Daddy to have patience through the work that goes into it!) are also appreciated. Thank you again, we are so grateful!