A few weeks ago I was in the library with all of my kids. I was tired, as usual, sitting on the floor while my 3, 5 and 6 year old girls played games with the other kids. Phineas was next to me, his 14 month old belly on the train track rug, with his head in his hands, chewing his fingers. I still remember my gut curling up inside me and silently watching him. Watching my three year old play with the play food and chatting with the little girls around her. Watching the 9 month old baby four feet away from me pull herself up to the play kitchen and stand with such ease, her chubby hands holding the side for support. I tingled with that pain I’ve become accustomed to and forced the tears to not fall, sting them back into hiding. Don’t let it come out now; not here. This is not the place for grief. All of these moms who have no idea. Who really breaks down post story time, in the middle of happy kids playing? Not me, not right now. So I don’t.
My story, our story, is that my sweet Phineas has a rare syndrome called Foxg1, a genetic mutation that happens in the womb. As with autism, there is a spectrum of abilities and disabilities, but most kids have little to no speech and very few can walk or sit unassisted. It is a world of seizures and feeding tubes, of medical equipment and sleep disturbances for these precious Foxg1 kids. We are just at the beginning of our journey and we don’t know what will come for Phiney. We choose to live on the side of hope in all the challenges he will face (more on that later).
Most days I remain optimistic and hopeful, but some days there is a surge of unexpected grief that comes when the life you imagined for your child doesn’t turn out that way. As much as I process, as much as I come to learn thanks for what was not my expectation, there are still waves that hit hard in places that don’t seem to hold the grief as they should. Or do they?
Seeing the little blonde haired boy running right in front of me at the grocery store can grip my heart and I hold tight to my blonde haired boy in the baby carrier, his head laying on my chest, fast asleep. Again the tears sting, again I choke them back, again I say “no” to letting grief have its way this time. I want to see my son run like that one day. But I realize now how I regret not letting sorrow and pain be what it is in that moment.
I see more than ever how taboo emotion in public can be. What would happen if I did just have a good cry? Maybe the lady with the toddler sharing the aisle with me would extend compassion. Maybe not, but I would have grieved a little more, come to grips a little more with my own new reality for my son, would have healed a little more. I think that’s worth it. And, I think there’s a great deal we can gain from engaging with the vulnerability of humanity. I can take part in that.