On My 30th Birthday

My reality at 30- husband with ALS edition

My reality at 30 is always being the one to drive, rarely a passenger. Making all the phone calls, fighting the insurance battles, fighting for disability benefits and for accessibility. Fighting for our family to stay afloat. Always being the one who has to carry in the groceries, all of the bags and do all of the packing. My reality is wiping every butt in the house, dressing, bathing and brushing everyone’s teeth. Cooking all of the meals, making sure everyone is fed, by mouth or otherwise (thank goodness I am a nurse). Do I have everyone’s water bottles? The right kind of straw? The right supplies in case of an emergency?

My reality is out to dinner with some moms, all of them talking about their husbands, I am sitting in silence, they are talking about the challenges of their relationships. About the blissful moments when their house is empty, no kids home, no husband home, how nice and quiet it is. When I’m out with other moms, sometimes I just feel like I don’t fit in. My reality is that my husband has a terminal illness. My reality is something I never could have imagined. My reality is the very real fear about each stage of ALS and how I will handle it. How will our children react? What do they understand, what do they feel, are we supporting them correctly? My reality is also mothering without a mom, without her shoulder to lean on. 

My reality at 30 is goddamn hard… 

My reality at 30 is also beautiful… 

My reality is living life in the here and now, not taking things for granted. My reality is learning lessons that I never even imagined, seeing my strength through it all and when I don’t have the strength, knowing that is ok, too. My reality is being able to see the bliss in the tiniest of moments, like drinking my favorite tea at the perfect temperature. My reality is making all of the memories. It's our amazing community, friends, family, strangers, stepping up, stepping in, holding us. Nominating us for free dinners, picking up groceries, mowing the lawn, shoveling, helping with our finances, insurance, phone calls when possible, bringing over a meal, a quick text to check in, supporting our GoFundMe. It's having my dad here with us and my nana close by. My reality is the most amazing children who are prospering and thriving. Finding their way, connecting with me, their dad, family and friends. Their reality is hard too and something I try not to dwell on because that is too goddamn heavy.

My reality is having a bad ass husband who spoils me with love, compliments, gifts, limo rides to Hamilton with my favorite people. A husband who trusts me and supports me at every turn, even when I decided to start grad school in the midst of all of this. 

Our life is hard, but our life is beautiful. 

This year I will be leaning into the beautiful and the hard and continuing one day at a time.

Leah