Sometimes, looking back, I wonder how in the world I have survived Kiran’s life so far. These 3 1/2 years have been chock-full of hard news, large joys, heart-stopping moments, gut-wrenching tears, big lessons, and lots of fear.
One year ago, tomorrow, Kiran finally had his brain MRI, revealing what we already suspected: Brain abnormalities. We know, now, our hopes for Kiran to “catch up to his peers” and “live a typical life” are unattainable.
We have no idea when his skills may plateau or what he will be capable of learning. We have no idea if he will need his wheelchair for a short while or forever. We have no idea if our communication goals will work for him, or if we will always be guessing everything he wants to express.
The unknown is the hardest pill for me to swallow, one year into knowing what we know. I wish I could have a sense of what to expect for his life, so I could prepare. So I could make the best decisions for him. So I could, once again (and maybe a final time?) go through the cycle of grief and acceptance and move forward.
But it’s one step at a time. Always. Kiran time. And I have to force myself to stay in this moment, today, and meet him where he is. Support him on where he’s going.
My mama heart has been struggling lately. Just in the sadness, right now. Sometimes, all the hard overwhelms, and I struggle to find all the joy.
But it is there. Every day. When he hugs me tight and pats my back. When he reaches into a bin and pulls out a block during independent play time. When he plays our game of clapping hands and then patting my hands on repeat. When he smiles and gets excited and laughs. When he reaches for the appropriate word picture multiple times in a row while playing (He wanted “more”). When he grabs his purée pouch off his tray and, more than once, brings it to his mouth correctly, wanting to try a new method of eating.
So many seemingly small joys and celebrations. He’s learning. He’s happy. He’s loved. He’s a wonder to behold. He’s Kiran.
We journey together. And I’ll survive today too.