Nope, not a typo. I have a mind full of thoughts. They are all clamoring around in there, racing in circles. Just when I grasp onto one thread, and try to form coherent thoughts on one topic, something else pops in and I’m headed in another direction. Squirrel!
I spent the last six days in Washington D.C. with the March of Dimes. Each Fall for the last eight years, minus one, I’ve traipsed off to attend their Volunteer Leadership Conference, followed immediately by Share Union (another conference/reunion of parents – and a few grandparents – who have been affected by premature birth, infant mortality, and/or birth defects for which the March of Dimes offers an online community). It is a time to celebrate the current year’s March for Babies results, and be invigorated for the coming year’s efforts. Since we were in D.C., we also spent a day on the Hill advocating for maternal and child health. I had the honor of telling our story of prematurity and how the March of Dimes saved our oldest son. It is a busy, and exhausting conference. But I love going.
Three of my favorite days of the year are spent with my Share family. These mommas (and dads and grandmas) just get it. Do you have someone like that in your life? They have all faced what we faced. They understand the pain, the guilt, the fears, and the stress. I don’t have to try to explain it. There are always lots of hugs, lots of tears, and lots of those belly-aching laughs. I would wish away Big Man’s prematurity, but through it, these amazing people have come into my life. Even more incredibly, through that, I have found support and resources in those same people for our autism journey.
I am not, and never will be, over Big Man’s beginnings. Seeing those March for Babies videos with photos of micro-preemies takes me right back. I cried every day of the conferences. You don’t ever forget what it’s like to see your too small, helpless, very sick child covered in tubes, wires, and tape, their lives dependent upon the machines attached to them. You never forget what it’s like to watch your child crash and turn gray, praying stimulation and extra oxygen will bring him back. You never forget the fear of walking out of those NICU doors and going home without your baby, to wait by the phone for the call that might come telling you to come back because things are going downhill quickly. But I don’t think about the NICU or Big Man’s beginnings every single day as I used to. He’s thirteen years old now. We are far removed from the NICU, far removed from follow-up care, far removed from our release from follow-up. Even the few challenges he does face are run-of-the-mill to us now…..asthma that’s managed, ADHD that’s managed, visual processing disorder mostly resolved. He’s healthy, and he’s amazing. We don’t see the evidence of his premature birth every day. So when I’m not seeing videos or photos to take me back to that place in time, I can put it behind me.
I cried more this weekend over what we do stare in the face every single day….E-man’s autism. Thinking about it breaks me. Talking about it ramps up my anxiety. Considering all the options for his schooling and therapies makes my brain hurt. And when our Share community host, whose son is also autistic, looks me in the eye while wrapping up the conference, the tears rush out of my eyes. This road hurts. It hurts constantly. It will hurt always, because it doesn’t go away. There is no end. He will not ever be released from its effects.
It’s not that Big Man will stop being a preemie. That’s part of who he is. But we are past it. He has overcome and beaten the odds. The NICU cannot swallow us again. He does not stare down the challenges of his premature birth every day of his life. No one who looks at him now, if they don’t know him, would know how his life started.
While E-man will be okay and will overcome his challenges to an extent, this is his life. He will always have to work at it. He will never walk into a social situation and not have to think about responding appropriately. And the work it will take to reach even that point is huge. I spent a half hour in his class today with his reading group. In just 30 minutes, he had to bring himself back to calm and focus five times, twice with help. No wonder he’s exhausted by the end of each school day. I left the school this afternoon wanting to cry. I know how hard he works. I know how he struggles. I see on his face the hurt of knowing he is different. I see the strain of having to go through each day this way. It’s haunting. Thankfully, when I picked him up from school, he told me what a great day he had. And I think we are on a good path back to a level place now. I did breathe a sigh of relief today, but only a small one.
So exhausted, I am home and working on re-entry. I am already looking forward to my next Share Union, and time with some of the most amazing people I’ve ever met.