Why I'm a Pinterest mom, and you shouldn't be jealous

My second daughter, Anabelle, was born with the neurological disorders lissencephaly and microcephaly. Lissencephaly means "smooth brain" and microcephaly means "small head." What this means is that while she was in utero, her brain stopped developing, due to a random miswriting of her genetic code. Now almost 4, she is cognitively still a newborn. She cannot hold up her own head, she eats through a gastronomy tube in her stomach, she requires oxygen support when she sleeps and she cannot control her own body temperature. She has quadripalegic cerebral palsy, is legally blind and has severe epilepsy.

It is unsafe to have her outside in all but the most optimum weather conditions, and it's risky to bring her around crowds of people and all their germs.

Because of this, my older daughter, 6-year-old Elyse, spends a lot more time at home than many of her peers. There are a lot of things Elyse doesn't get to do. I am not a "Let's join the traveling soccer team and spend hours every week on the road" mom. I'm not a "Do every activity you want as long as you get your schoolwork done" mom. I am not a "playdates every weekend" mom, a "spectator at every event" mom or a "spontaneous family trip" mom." (Hell, I'm not even a "well-planned vacation" mom.) Depending on Anabelle's health, I'm not even a "tuck you into bed every night" mom.

I have forgotten to send my daughter to school in a jersey on sports day, I have missed sign-ups for things, and I have said no to classes Elyse wants to take because I cannot possibly get her there every week.

When Anabelle was 6 months old and Elyse was 3, a friend 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!

While I have always considered myself passably crafty, what I am not is wildly creative. And there it was: The ultimate guide to the perfect childhood! OK, I admit that's 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. Armed with endless ideas and step-by-step instructions, I could create wonderful memories with Elyse despite rarely leaving home.

The thing many people don't realize about being the parent of a special-needs child is that, for those of us who also have kids without disabilities, it is usually their well-being and future that cause us the greatest heartache. 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.

Elyse knows that only one parent will be there for her school events. We are the family with only one parent in the stands at sporting events and one parent in the audience for dance recitals. In Anabelle's case, she is so susceptible to getting ill that it just isn't safe for her to be in a crowd. Elyse's father and sister were not at her last birthday party because it was outside in the July heat, which Anabelle cannot manage.

Elyse does have to pay the price for having a special-needs sibling.

My typical child breaks my heart much more frequently than my special-needs child. The needs of my second child restrict the movement most parents of young children are used to in their lifestyle, and that affects both my children. It is for Elyse that I have to get creative in the ways I create memories.

It can be really hard not having the time to be the mom I would like to be. But the one thing I DO do? I spend a lot of time at home.

Anabelle's fragile health means she lives in a virtual bubble a lot of the time. I might not be able to run Elyse around doing fun activities and having experiences outside the home, but I can 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 holding the suction wand for her sister.

So please, don't take it as a challenge when my daughter 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!"