Sunday school and the search for peace (The Star Tribune)

I’m not going and there’s nothing you can do to make me. As a mother, I know this statement all too well. My son, a bold-hearted first-grader with curls that don’t quit, shouts this rallying cry on most Sunday mornings.

When it comes to religious life, he leads with the word “no.” For whatever reason, that’s his signature statement. Normally I roll with it, and by rolling with it I mean he’ll be on the steps of Temple Israel at 9 a.m., whatever it takes (lately Ghirardelli caramel chocolate squares).

Read the full essay on StarTribune.com.

 

Baby in parent's hands

What Got Me Through My Baby’s Very Difficult First Year (Kveller)

It’s our daughter’s first birthday tomorrow. And while I am indescribably happy/relieved/grateful that we’ve made it this far, it hasn’t been the year that we thought it would be. Far from it.

Some things were expected, especially since she is our second child—like the epic, sprawling nights, and how it feels to hold our sleeping baby (like praying). And the way her smile sparks up the kind of love that is wild, primal—like absolutely nothing else.

What was not expected: Around 6 months, our girl was diagnosed with what we refer to as her own unique genetic map. She has a genetic disorder that has no name. It is a diagnosis that has been documented in only four other people worldwide. It’s associated with developmental delay plus a host of other concerns that I didn’t even know existed. Because there are so few cases, it is unknown what her strengths and limitations will be. Everything in her life is unfolding for us—when and how (and if) she will walk, talk, eat solid food, and process information in the way that we had imagined.

Read the full essay on Kveller.com.

5 Things A Parent Really Needs When Raising A Child With Special Needs (Scary Mommy)

Let me start by being totally clear: I’m not pretending to have this all figured out. I’ve cried more about my daughter’s life-threatening medical condition than I’ve cried about anything else. She has a rare genetic difference that affects her eating—she does not eat (she lives off of a feeding tube), and throws up regularly, sometimes without being able to stop.

I thought my life would be one way, with healthy children who needed me only for a while as they learned to do the things at the ages that kids usually do things. But, it’s really not like that. So, yes, I struggle to adjust to my expectations of parenthood—trips to see the primates at Como Zoo, the boredom of playing blocks in the basement—with what our life is actually like—rehabilitative therapies, intermittent hospitalizations, and somehow, along the way, acquiring semi-legit nursing skills.

Read the full essay on ScaryMommy.com.