4.4.14 That Moment

You know those moments when you feel that your heart is bigger than your body? Like the one when your child first flings their chubby little arms around your neck, or the one when you share a commonality with a stranger, or when you finish a deep conversation with a friend. Those moments when you notice uncommon details and paste them in your mental scrapbook. The ones that make the doldrum of day-to-day life sacred. Often, for me, these moments happen while putting the kids to bed. At night, during the most wonderful, most challenging time of day. Though it is a time of weariness, I am also grasping onto these details as they quickly pass by.

Getting Aimee ready for bed is a particularly automatic process. Sometimes I stir myself to be in the moment, but it is a time of tedious little tasks that are each performed and recorded in the same manner and pattern that they were that morning and the night before. Yet, at the end of it all, as I tuck her blankets under her arms, secure her mask around her head, and prepare to turn on her musical 'go to sleep now' cue, there is a moment. That moment. I pray over her. I whisper in her ear. I kiss her. Finally, as I press my face against hers and sigh, she responds. Oh, not every night, but this is the most common moment of connection we have. She talks to me in that moment. Last night, as I finished praying that she would know even more how much she is treasured, I said to her, "even more than you already know. Cause you do you know you are loved, don't you?". Her blue eyes lit up and she laughed an affirmation. And that moment makes all the tedium fade. My heart swells and I am thankful that deep inside she knows.


I do have more news to share.

First, there is the tshirt fundraiser. I did set a goal with this fund of $1850, though it wasn't so much that I expected to meet it as it was a way to let the contributors know which of Aimee's needs their funds would be covering. In the final hours of her fundraiser, together with donations given privately, we raised $1900. WOW. We are so blessed that an entire week of therapy has been paid for and are tentatively scheduling this for the beginning of June. We are amazed to show you her wonderful new seat where she can safely be near her brothers without being stepped on and without reflux issues, and where she can also get pedicures ;). One of the most exciting elements of this fundraiser to me is that each contributor that chose to will be receiving a shirt around April 17th that will remind them of Aimee and her beautiful joy. We can't wait to wear ours!

Second, I have not yet shown you the beautiful set of books we purchased for Aimee's birthday that include several pages with your special messages to her, all the posts from this blog up to her birthday, and loads of pictures from her years so far. These will be read and treasured for a long time!

Lastly, we spent some time yesterday in the Neurology clinic. We hadn't noticed a positive change in seizure activity since starting a new medication, in fact, I felt there had been more frequent events. I urged for a repeat EEG and was thankfully successful this time. We will try one more medication increase, but will also schedule a 48 hour EEG for this summer in the hospital. Praying for clear results.