“As long as they are healthy.” Isn’t that something everyone says when expecting? Basically, we don’t care what their sex is, we just care they are healthy. I used to say the same thing, but now all I can think to ask is but what if they aren’t? Then what?
We were not given any inkling that things weren’t 100% perfect with our daughter when she was born. We were a young healthy couple; my pregnancy showed no signs of anything but typical. Her birth even seemed totally normal. So, as you can imagine watching our 3 weeks old baby have a seizure was as frightening for us as I imagine it would be for any parent.
It did not say anything about this in What to Expect When you are Expecting. There was no handbook for this. Suddenly, we were swimming in a sea of hospitals, tests, doctors and specialists, medication, and state services and we didn’t know which way was up. We knew things were very wrong with our daughter and we were scared, and we were so uncertain, and we were so heartbroken. We loved her with every breath of our beings. We wanted her to be ok. We were learning she wasn’t going to ever be “ok.”
Like many new parents with anything going on with their children, I sought refuge on the internet. Google would lead me down dark holes and don’t even get me started with WebMD. I was in an endless circle of what could be and how terrible that might be.
Google also however landed me on forums and online groups and places where I could say “your child has all the same things my child does! Tell me more!” I landed on a goldmine of parents who were swimming in the same sea of the unknown as us. Some had been swimming a little longer than me and had some helpful guidance. Some were in the same place and offered solidarity and some were a little behind us in the journey and I was able to offer them the knowledge I had learned. It was support in every meaning of the word support.
We have wonderful family and friends and never lost any of that physical support, but there was something so magical in landing in a sea of others who lived the same lives. Cried the same tears. Fought the same fights. It was the best place to be when facing so much hard. A place with safety and trust.
As much as I loved the online support of strangers who became friends, we were also introduced to a network of local families in a similar situation. We landed in an in-person support group when our daughter started receiving services from the school for blind children. Our daughter wasn’t blind, but had enough of an impairment to receive services there and with the wonderful early interventions they offered, they also offered parent support groups.
Every Monday we would sit and eat and cry and laugh and share. We would share knowledge of the best specialists and the best therapists. We would say things that worked for our kids and better medication combos for epilepsy. We offered each other the only thing we had and that was our experience, and that experience was life-giving to each other. I can honestly say we were grateful for our daughter’s visual impairment that led us to this wonderful group of teachers for our daughters and wonderful parents for us. 18 years later, we are still friends with these families.
Our daughter finally received a diagnosis when she was 6 and that allotted us a name to find other families and as technology has grown so has our web of support. Families worldwide now all congregate on Facebook and help each other out with their journey. Some asking advice on medication, some on expanding their family and somme just needing a safe place to say “I love my child, but this is hard” and everyone saying “we know. WE. KNOW.”
When you are thrown into a sea of unknown you need life preservers. You need something to get you back safe to shore. I can’t say this enough: the support of other parents going through the same thing will always be the support we needed to find.
If you find yourself swimming in the same sea as we did (and still are!) seek out others who see you, hear you, who are you. There is no telling who you will find and who will find you!