Not alone

Starting out with a shout out to my mama for her amazing post last week, “Grandma POV”. If you haven’t read it yet, you should. Before I started my blog I used to write the occasional long form Facebook post - as I’m sure many would-be bloggers got there start. Aaanyway, a post I wrote two years ago this week came up in my Facebook memories. It was about my love/hate relationship with social media and it was fascinating to re-read and see how far I’ve come on this special-needs parenting journey. The following is an excerpt from that post when a swipe through social media was the equivalent of navigating an emotional minefield:

Perspective two years later, 4/11/19

Perspective two years later, 4/11/19

“Today my daughter is 18 months old. I stopped taking photos of her with a sign displaying her age after 3 months when it became clear that she was not developing along a normal trajectory. I watched as friends who had babies around the same time posted photos lamenting their little one who could not sit still long enough for a photo. If only. To be clear, the point of this post is not to make any parent of a typical child feel guilty. We should all be proud of our children. I love posting about my able-bodied son’s achievements: be it rocking out at a pre-school performance or helping Daddy cook dinner. However, this post is for the parents who see these images and question whether their child will even be able to attend a traditional pre-school, let alone stand and sing with their class.

Social media presents a difficult space for parents of developmentally delayed and/or medically complex children. A simple Instagram scroll becomes a harsh reminder of everything our children are not. I don’t get to track milestones. In fact, I received a shower gift of milestone note cards to track my daughter’s firsts and sold them at a garage sale last summer. Of course, in an ideal and rational world, we never compare our children to others… but, wow, that is really freaking hard.” April 17, 2017

In the two years since I wrote that post I have accepted Adelaide for the amazing little girl that she is and it no longer pains me to see pictures of neuro-typical children her age or younger. It admittedly took me a while to get to this place but connecting with other special needs families significantly helped and the same social media that had caused pain now brings me community. Yesterday, as I scrolled through instagram, I was struck by how much my feed has changed. I’ve chosen to connect with and follow so many other special needs families and as a result I am greeted with photos of other differently-abled individuals. Our posts ebb and flow with developments and setbacks as chronic illness dictates the day-to-day inchstones of our lives. Milestones are still celebrated but consist of receiving new equipment or achieving longer durations of seizure freedom. First steps videos are not of babies but of 4 year olds or 6 year olds and usually involve adaptive devices. Life is also celebrated a little more sweetly since this community understands the life and death stakes: most of us know families who have lost their child to one condition or another. This is our reality and we all understand that each day with our children is a gift. For those I’ve found online that I’ve been able to meet in person, there is a sense of instant camaraderie and friendships come fast. But there are even more people that I’ve connected with online that I many never meet face-to-face but know that should we have the opportunity it will feel as if we have known each other for ages.

Our first meet-up with special needs friends and their siblings in Chicago after meeting on Facebook, 12/2016

Our first meet-up with special needs friends and their siblings in Chicago after meeting on Facebook, 12/2016

It is also not lost on me how social media has transformed special needs parenting as a whole. On this journey I have been fortunate enough to speak with and learn from caregivers whose differently-abled children are now adults. In these conversations, social media and the internet often come up. They mention how lonely they felt, how they were certain that they were the only ones struggling or that their child was the only one whose seizures could not be controlled. Finding a like-lifed community was challenging at best and often impossible outside of a hospital setting. Then, of course, without the internet their only source of information was from their medical team. I often feel helpless WITH the internet, I can’t even imagine how powerless it would feel to have to rely on (and trust) someone else to provide valuable information. The connections we can now make, awareness raised, knowledge gained, research and medical needs funded - all through social media - never ceases to amaze me. I’m beyond grateful to be parenting in an age when I have access to these tools… but please don’t remind me I said this when Jackson is a teenager and I’m stalking his online profiles.

Celebrating and fundraising at the 2018 CURE Benefit with super mom friends, 10/15/18

Celebrating and fundraising at the 2018 CURE Benefit with super mom friends, 10/15/18

Of course, I have to acknowledge the ugly sides of social media as well, where trolls and bullies hide in dark corners with offensive memes and hurtful comments. It’s certainly not all rainbow connections and, truthfully, I also still have days when the emotional landmines are more challenging to navigate than usual. But on those days I know I have a fierce cohort of super-families to turn to for encouragement. To the caregiver out there that is still looking for their support circle, for those people that truly “get it”, I would like to leave you with the conclusion from my 2017 post:

“It may feel like your child was the only one without cake all over their face on their first birthday due to diet, g-tube, or other setbacks: you are not alone. It may feel like your child is the only one not able to attend dance class in that adorable leotard: you are not alone. It may feel like you know your way around the hospital better than your way around the children’s museum: you are not alone. Please know, whatever battle you are facing, you are not alone.”

Grateful for each and every one of you, thank you!

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