Moments in Time

Its not every day that we ponder the “normal” or actually take a full account of an uneventful weekend. But as anyone that follows our blog or even stays loosely updated with our journey knows, normal is somewhat spectacular. Now I must add that our normal still consists of a central line in her chest, 12 hours of IV nutrition, oral medication 4 times daily, miralax in her juice, strict diet restrictions, and cautious fluid consumption.

But all that aside today and yesterday were essentially “normal”. We went to church, we came home, had lunch, took a nap with Maliyah, had friends over, went to costco, went out for breakfast, cleaned the house, watched a movie, etc. You know, normal things that happen on a normal weekend.

But let me tell you about a miracle. Maliyah woke up every day, she was happy, pain free, and growing. She’s getting taller, more curious about the world, plays longer, laughs more, and runs every emotion on her sleeve. She loves going to her swim lessons, she is beyond extraverted, loves playing with her friends, and cries when she has to leave. She sings about everything that is happening at that moment. (terribly off key, random thoughts, to the tune of misc song snippets). She loves to dance, and get everyone involved. Friday for instance she introduced herself to several older girls…. maybe 7 or 8 years old and was like “come on guys follow me” and they did.

Her smile, energy, and personality seem to draw pure strangers in. She has this magnetic aura that can only be described as Maliyah. Some of the hardest things we have to do in our day is correct her when she’s being disobedient, or belligerent. We are actually encouraged that this is “normal” behavior. (Parenting isn’t for the faint of heart). But the one that gets me the most is, “I love you Daddy, you’re the best!”

In the moments of doubt, in the moments of hardship, and the moments of deepest depression, it’s impossible not to see that glimmer of light in her smile. Every little “tag, you’re it” or every “lets play hide and go seek”, or “I love you” makes us happy that we have reached “normal”.

A good friend of mine always said “normal is only a setting on a dryer”. As right as she is, we try to take notice of every “normal” moment we have.