What Keeps Me Up at Night as a Special Needs Mom


What keeps me up at night — my list is endless. I imagine yours is, too. In the very early days, the worries were somewhat smaller. When will you catch up? At some point, that when turned to if. Around the same time, my concerns turned to: Will other children include you? Will they adore you as I do? Will your teachers be kind? Will they treat you with the dignity and respect you deserve?

What will medical insurance deny this time? How many months and endless follow-through will be required to straighten it out? How many doctor’s appointments and therapy sessions are scheduled today, this week, this month, this year, and how do we continually coordinate your care? What obstacles will our school district force us to overcome? What happened to kindness, integrity, respect?

Will you take your medicine? Or will your sensory system prevent you from getting it down? Will you end up in the hospital as a result again? Grow resistant to antibiotics?

Are you making progress? What more can we be doing?

Over time, the worries change, but they still systematically infiltrate what feels like my every waking moment.

What happens when you grow up? What happens when I’m gone? Who doesn’t worry about that? No matter how much we try to plan and prepare, will it ever be enough? How does one heed the advice to live in the present, when so many of our actions are driven to plan for the future?

Will you be able to be independent? If not, who will care for you? Is it wrong to ask your sister to step in? What if she simply chooses not to? Who then, if not her?

Will you be able to drive? Meet the person of your dreams and get married? Have children? Who will see to your medical care? Who will see to your needs, that you live comfortably, are well-nourished, have proper clothing? Who will manage your finances?

Who will advocate for what you need and make sure you get it?

Will you be safe?

What does your future look like? Will it shine brightly, like you?

I know I’m supposed to stay strong, cast my doubts aside. I can’t always do that. Often I just don’t know how.

For tonight, I hope that what keeps me up at night will instead be my overwhelming gratitude for my husband for his love and patience, for my daughter/your sister for her understanding, for my parents who have gone above and beyond the role of grandparents, for your talented and devoted medical team, your amazing and dedicated therapists, for those who support us in this journey, and for you.

I love you with all of my heart, and with all of my soul, for your strength, your joyous spirit, your resilience, your grace, your beauty, for your smile.

I will be forever grateful, for you have transformed our lives in ways we could not have envisioned. You make me and those who surround you better, simply by being you.

Mom holding her daughter. They're on a beach.

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