Hey look, I'm not saying I showered, and keeping MY kid alive is NO JOKE!
And yet, I will totally own the fact that I am a Pinterest mom. I'm that lady. I threw my daughter, Elyse, a superhero 6th birthday party and made everything by hand:
I create whimsical Halloween costumes:
I make occasion-appropriate snacks:
I do not do this to bolster my flagging ego or to one-up my fellow moms. I do this because, as a special needs mom, there are a lot of "mom" things I am NOT. I am not a "let's-join-the-travelling-soccer-team-and-spend-hours-every-week-on-the-road" mom. I am not a "do-every-activity-you-want-as-long-as-you-get-your-schoolwork-done" mom. I am not a "playdate-every-weekend" mom. I am not a "spontaneous-family-trip" mom (hell, I'm not even a "well-planned-out-vacation" mom). I am not a "spectator-at-every-event" mom. I am not even, depending on Anabelle's health, a "tuck-you-into-bed-every-night" mom. I have forgotten to send my kid to school in a jersey on sports day, I have missed sign-ups for things, I have said no to classes Elyse wants to take because I cannot possibly get her there every week, I have skipped bath time several days in a row from sheer lack of hours in the day.
When my second daughter was born profoundly disabled by the rare neurological disorder lissencephaly, one of my first and biggest concerns was how this was going to impact the life of my typical, then almost-3-year-old. How was I going to give her everything I wanted to give? How was I going to provide the kind of childhood I wanted her to experience? Had I, in the attempt to provide her with a life-long companion, instead given her a life-long burden??
The thing many people don't realize about being a special needs parent is that, for those of us who also have typical kids, it is usually THEIR well-being and future that cause us the greatest heartache. These are the kids who can see what is going on. Who will feel the taunts of schoolmates over having a special needs sibling. Who will miss out on vacations and field trips and dance class because there is neither the time nor the money to provide those things. Not to mention, who miss out on having their parent be involved in their life. We are the family with only one parent in the stands at sporting events, one parent in the audience at the dance recital. And I know we are blocking your view with our cameras videotaping every detail, but this is the only way the other parent gets to experience this. Because it is too hot to bring the special needs kid to the ballpark, and the auditorium is not wheelchair accessible. Or, as in Anabelle's case, she is so susceptible to getting ill that it just isn't safe for her to be in a crowd (she has, numerous times, ended up hospitalized over what to the rest of us is a mere cold), and her parents are the only ones trained to care for her needs. There are a lot of charities and organizations out there designed to give the special needs child what they need, but the truth is, it is the REST of the family that usually goes without. Anabelle has never wanted for a thing in her short life. It is Elyse who never has two parents at her side on outings, or may never get that trip to Disney World she so desperately wants. My typical child breaks my heart much more frequently than my special needs child. It is for Elyse that I have to get really creative in the ways I go about creating memories, as the needs of my second child are restrictive to the freedom of movement that most parents of young children are used to in their lifestyle.
When Anabelle was 6 months old, a friend a sent me an "invitation" to join Pinterest. It was like opening the golden gates to never-ending possibilities for the trapped-at-home mom I so often was now! Because while I have always considered myself passably crafty, what I am NOT is wildly creative. And here it was: the ultimate guide to the perfect childhood! (Okay, I admit that is overstating it a little bit, but I was a desperate, terrified, newly-inducted special needs mom with a bored, over-active toddler on my hands). Endless ideas with step-by-step instructions. I CAN DO THIS!!
It can be really hard not having the time to be the mom I would like to be. My typical child does have to pay the price for having a special needs sibling. But the one thing I DO do? I spend a lot of time at home. Anabelle's fragile health has her living in a virtual bubble a lot of the time. I cannot run Elyse around doing fun activities and having experiences outside the home. What I CAN do is try to create fun and memories INSIDE the home. Elyse helps me with most of my Pinterest-inspired activities, it allows us to bond and express our creative energy. It allows me to contribute something meaningful to her childhood beyond hospitals and therapists and "hold the suction wand for a minute".
So please, don't take it as a challenge when Elyse and I make her teacher's end-of-the-year gift:
I'm just using what I have so my daughter has one thing about which she can say, "Hey, MY mom does that!"