It has been an interesting journey so far.
If you recall, dear reader, the first thing I did after we received our diagnosis was to download a book called “Five Fingers Ten Toes” on Amazon and read it overnight. It has a few reviews, all five star, as is common in books about differences. It’s a simple, honest book, written by a mother who raised a limb different child in a time and place where few resources were available. She survived on faith, humor and a strong community. When the kids grew up, she took a creative writing course and wrote the book. It gave me tremendous hope when I needed it.
The founder of the Lucky Fin Project later connected me to the author, who was just as open and sweet on Facebook Messenger, offering support and advice.
I quickly realized the limb difference community is different from most communities I’m used to- people are helpful and positive, and almost aggressively so. They seem to realize what you need even if you are hesitant asking for it.
Molly Stapleman from LFP also connected me with a few mothers in our region who are raising limb different children. Again, these ladies were incredibly proactive in reaching out and offering support and advice.
I read more. I read blogs, mostly. Living One Handed, written by a funny guy/pastor. Born Just Right, written by a very resourceful mother of an almost teen with a limb difference. Stream of Caitlinness, written by a one handed young woman/teacher. When I ran out of blogs about people with limb differences, I branched out. I read blogs written by people with skin conditions that make them stand out, people with dwarfism, people with autism, people who are wheelchair bound. I was particularly impressed by Don’t Hide it Flaunt It, an organization and website run by a NY based lawyer with a genetic limb difference who, as she says, “gave birth to her difference”, i.e. has children with same anomalies as herself.
I read “Double Take”, a brilliant memoir written by Kevin Connolly, a 23 year old champion skier and photographer who was born without both his legs. He didn’t shy away from describing the brutal realities of his life. I hope he writes more.
I spoke with a psychologist who has a limb difference. I met with one of the local mothers. I signed up for and missed a meeting of the Helping Hands Foundation, a group made up of parents raising limb different children. That was the day we had our only heavy snow of the season. Instead of driving to MA, I spent the day reading “When Breath Becomes Air”, a memoir written by a 36 year old neurosurgery resident as he dealt with a diagnosis of terminal lung cancer while finishing his residency. He and his wife decided to have a child after he received his diagnosis. His wife asked him if he really wanted to have a child, given that it would make his death more painful. His response? “Wouldn’t that be wonderful?” His contention, “We agreed that life was not about avoiding suffering, but about meaning.” hit home. So I re-read “Man’s Search for Meaning.”
Someone connected me to a (HUGE) group of physician mothers on Facebook. From there I was directed to two subgroups, one of desi women physicians, from one of whom I procured a fresh yogurt starter when mine went bad. The other was physician mothers’ of special needs children. More connections forged, more insights gained.
At the recommendation of someone in this last group, I am now reading “Far From The Tree”, a beautiful book about raising children who are different. I’m also planning to meet some of the local Helping Hands mothers on a playdate. I went for another ultrasound today, with the same doctor as the first one. He had a medical student with him. Today we laughed and joked, about a materno-fetal medicine fellow who was going to join them but didn’t, about the baby and the fibroids and who shall prevail, about pregnancy induced dementia.
In the meantime I’ve taken to calling the baby Luke. I saw a onesie which had a one handed pirate monkey on it and almost bought it. As my toddler obsesses over fingers and paws and mittens, I wonder what she, an exceptionally perceptive child, will make of her baby brother. For now she is content to occasionally kiss (or kick) my belly and I’m content leaving it that way.