Dear mama of a child who just received a chronic diagnosis,

Your world will never be the same.

It doesn’t matter if you knew the diagnosis was coming, or if it came from out of nowhere; hearing a doctor say “this is forever” probably took your breath away.

And that’s OK.

You’re allowed that. You’re allowed to feel numb. You’re allowed to feel sad or angry. You’re allowed to feel guilt and/or relief. You’re allowed to feel all those things. Or none of them. Because though this is your child’s journey, you’re along for the ride. And that ride can be brutal.

Feel whatever you need to, as long as you need to.

And don’t let anyone tell you otherwise.

If and when you share the diagnosis, friends and family will meet you with platitudes. They’ll tell you things like “God will never give you more than you can handle,” or, “After the storm, the sun will shine.” And you’ll probably want to punch them. That’s ok . . . but don’t. They mean well. They just don’t know what to say. You’re going to have to get used to that.

You’re going to hear a chorus of people saying, “It’s going to be OK.” And you’ll want to punch them, too. Because some things are never ok.

Like thinking of your child being buried before you.
Or praying that you outlive your child because you are their only caretaker.

But keep your fists down. Because what they mean is “life will go on”. And they’re right about that.

Life will continue, mama. Maybe not just as it had before, but it will go on. And the days will hurt less.

You’ll see beauty in it again, maybe even more than before. Because you are reminded every day just how precious life is.

Breathe it in.

You may not feel strong right now, but you’ll grow to be.
It’s what happens when you have no choice.

The words you’re hearing may seem foreign, but medical jargon will soon become your second language. And daily therapies your workout.

If there’s equipment involved, don’t fear it. There was once a time you didn’t know how to care for an infant, but you figured that out. Practice with it. Ask questions. Do what you need to. You’ll soon be able to interpret numbers on monitors, flush lines, and silence alarms in your sleep. Meeting our kids’ needs, whatever they are, is kind of a mama’s superpower.

You’ve probably heard, “Stay away from Google.” I disagree. Use it for good. Learn all you can. After all, knowledge is power. And so is connection. Seek out support groups, others who get it. They are your people.

Mama, today your world is spinning. And that is OK. It will settle soon enough.

The love you have for your child will carry you through this journey. Nothing about this situation is OK–but you’re strong enough to get through it.

And in the end, every though not all moments will be easy, they will all be worth it.

I promise.

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A Mother’s Mind Never Rests, Because We Carry The Mental Load

Cara Arnold

I’m a mama to 3 whose learning to balance parenthood and chronic illness at the hands of autoimmune encephalitis. Some days I’m a soccer mom, carpooling like a boss; other days I’m a relentless advocate, taking on doctors and insurance companies alike. But, if you’re looking for consistency every day I’m a hot mess. My life is a puzzle that’s still not together. I used to think pieces were missing. But it's all finally fitting together. It’s not what I envisioned, and some days I mourn that; but it’s mine. And knowing how fast that can change I try to appreciate every moment of it.