Hellobee

Sharing in other’s perspectives is so important. I came across this moving cartoon from The Telegraph‘s political cartoonist, Bob Moran, which details his journey to fatherhood with his daughter with special needs. I cried and cried (but may be overly sensitive given my own situation) so I caution you from watching this at work!

Watch the cartoon, Father’s Days, here.

Sometimes, the special needs parenting world can be so isolating. There are so many common experiences that I just can’t relate to with D, even if I was able to experience them with K. I wasn’t able to hold him for days after he was born, and even then he was a tangly mess of wires and lines. It sounds so simple and stupid, but I had never seen a drawing or cartoon of a baby with wires everywhere, until I saw Father’s Days. That little act of recognition of how fundamentally different it all was, that shared experience, meant so much to me. Even the static and the beeping in the background felt so familiar – we’ve been out of a NICU setting for over a year and a half, but I’ll never forget that atmosphere.

There are quite a few similarities between D’s story and Moran’s – the first few hours and days were very confusing for us, and we really didn’t understand how serious the situation was. D had hypoxic ischemic encephalopathy, or oxygen deprivation to the brain. I also didn’t have a good sense for what cerebral palsy was, although in our case we didn’t learn that D had it until several months later. My brain filled with the same questions – wheelchair? braces? do we have to move? will he walk? As he mentions, the real superheroes in our stories are the people who helped us along the way – our doctors, nurses, counselors, therapists.. too many people to list! And just like the Morans, we came around to accept D’s differences as our new normal, and really have so much fun with him. He is such a loveable goof who keeps us on our toes!

There are some big differences in our stories as well – the Moran’s were discharged after 12 days, and I don’t get the sense that their daughter was born prematurely. As I’m sure you’re all familiar, D spent his first 2 months in the NICU, was home for a month, and went back for two more. They also went home without heartrate and apnea monitors, which D had for his first stint at home. Those helped ease some fears about him suddenly not breathing or having some kind of emergency. Of course, the NEC emergency was not detectable through those means!

In some ways the cartoon is so frightening for me. As you’ll see if you watch, his daughter’s struggles don’t end at birth, but she is diagnosed with epilepsy when she’s slightly older. D had his own big post-birth scare with NEC, but a part of me is just SO AFRAID that the other shoe is going to drop, and he’s going to have another medical crisis. Of course there’s nothing I can do but take as good care of him as I can and hope for the best, no one knows what the future will bring.

Our whole deal is sometimes still hard to deal with, which I try to share as openly as I can here. Just as Moran says that drawing the cartoon has helped him a lot – blogging through D’s journey has helped me so much. I can’t thank you all enough for the wonderful, supportive comments you’ve given our family every step of the way. Even before the post is published and commented on – just the act of writing it all down, choosing the right word even for very painful situations, is freeing somehow.

Did you find Father’s Days as compelling as I did? What feelings did it bring up for you?