It’s been more than a year and a half since I began Noah’s Road in the dim light of Noah’s hospital room in the Pediatric Intensive Care Unit. I still remember sitting on the burgundy vinyl pull-out chair, my legs tucked under me, thanking people near and far for a fountain of love, support, and prayers. Though Noah had nearly died, and despite heartache so deep I could barely breathe, I had no idea how different our life would become from everything I had always dreamed. I didn’t understand all that I do now about Shaken Baby Syndrome. In the last year and a half we’ve faced hundreds of moments as dark as those first nights in the hospital. I’ve blogged about many of them. You’ve read my words, felt my pain, and known that often as I type, I cry.
Tonight is different. Tonight I want you to feel my joy. Tonight I hope you will smile. You’ve guessed it; I must be transparent now: Noah is still seizure free. He’s been seizure free for 88 days. 88! Who knew there could be a number even better than ZERO? Every day Mike and I thank God for our miracle. I know that the seizures could come back. Every day is a gift, and we’re embracing each day as it comes. So far the Ketogenic diet has been our miracle diet. You will hear utterly no complaints from me. I would stand in the kitchen for hours on hours – and I do – so that Noah might never have another seizure.
Since Noah has been seizure free, he has come leaps and bounds. Every day he does something new. I’ve begun to keep a journal of Noah’s accomplishments. I do it because I don’t want to ever forget all these tiny, yet momentous steps in his life. And I do it so that on the sad days – they do still happen, though far less often – I can read something positive and be reminded of how far Noah has come. Even now, as Noah is tucked away in his bed, passed out with his head on his giant stuffed monkey, I can’t help but smile. He is surpassing all my expectations. I am in awe of him.
Let me give you a little perspective, a glimmer into our life with Noah these days. First of all, Noah has Global Developmental Delays. He’s behind in gross motor, fine motor, and speech. In his therapy sessions, for months and months, we’ve been working on putting items into containers, clapping, signing “more” and “all done,” and keeping his attention more focused. It’s tough when I see Avry begin to do these things effortlessly and only at 9 months old. Noah will be two in two weeks. He still has no words, while his friends are beginning to speak sentences of several words. Noah is beginning to run, but he has low tone in his trunk and he toe walks, which makes bigger gross motor gains difficult. We all work hard, even outside of this therapy sessions, to improve Noah’s skills. Until he went seizure free, the gains were slow, very slow.
Since his little brain has had a chance to relax, Noah has been thriving. He’s clapping and dancing. He’s giving “Five” to Mike and even does “High Five” and “Ten” now. You should see Mike’s face glow when Noah does this. It’s always a perfect bonding moment. Noah is climbing on everything and getting more confident every day. In fact, much to our newfound anxiety, Noah has climbed out of his crib three times this week! Noah is also perfecting his slide down the windy, tunnel slides – the faster and higher the better for our adrenaline junkie! Noah’s eye contact is improving almost daily. He used to rarely look into our eyes and I longed for it. But now he locks eyes from across the room and comes running to me. His feet are heavy on our wood floor. I love the sound. He and Avry are a sight to behold: two brothers, tall and lean, full of energy, giggles, and laughter. They crawl around the house together, play in their tunnel, hold hands while sitting in their carseats, and yes, they bite each other and pull hair. Mike and I feel so normal sometimes watching them play or fight.
We wake before the sun. I rarely get a chance to eat. It’s a slow day if I’ve changed less than five poopy diapers. And when I sit down at night, my heart continues to beat heavy for an hour before it calms down from the storm of our day. But the nights aren’t filled with tears now. I don’t have images of Noah’s head dropping more than a dozen times. I get to write down accomplishments instead of seizures. There are moments now that feel so utterly normal in their chaos. I hope to hold onto these moments forever, savor them, and sink my teeth into them.