Words of Wisdom From Jessica Fein

If I could go back and have a conversation with myself the day my daughter Dalia was diagnosed with MERRF Syndrome, here’s what I’d say:

Pace yourself. It’s a marathon, not a sprint.

While the disease will define so much of Dalia’s life – and yours, it does not define either of you.

Don’t be so busy advocating, scheduling, and trying to find a cure that you forget there’s a little girl who just wants to play and learn and cuddle. Like any kid, she only gets one childhood. Don’t waste it trying to solve this. It can’t be solved.

But you know your child best. Keep journals of her symptoms. Speak up even when it’s uncomfortable. Learn everything you can about the disease because you will soon be the expert to whom even the doctors turn for information.

Your other kids will look at you to see how they should respond. If you always act like everything is fine, they will wonder why they feel hurt, angry, or scared. Be honest with them in a way that’s appropriate for their ages.

Your friends won’t know what to say to you. You’ll be annoyed when they complain about their child’s sprained ankle or strep throat. You’ll be upset when they don’t tell you about their child’s sprained ankle or strep throat because they know their issues don’t compare to yours. Trust that they are trying their best.

You’re going to need to shift your priorities, and you’ll wish you’d done that sooner. You’ll worry less about grades and having a pristine house and focus more on the smiles and the small victories.

Do not feel guilty if you find yourself grieving the life you’d imagined. It’s okay to throw a pity party every once in a while; just don’t dwell there.

You’ll learn more about yourself and what you’re capable of than you have in your whole life up until now.

You got this.

Guest post by Jessica Fein, MERRF Advocate, and Rare Mama to Dalia