A Letter to a New Rare Mama

Written By Brittany Milstein

Dear sweet mama, 

Welcome to the rare mamas club. I wish that I could wrap you in a big hug and tell you that everything is going to be okay. It may feel like your world has come crashing down right now, but I promise you that you will learn to fit into this new life. 

I know this rare disease club isn’t one you thought you’d ever be in and there will be days where you want to wish it away. You will have days where this life feels impossible and days where you wonder how you ever lived a different life at all. You will find the beauty in the rareness of your child and see how they were created just as they were supposed to be. 

I know I’m not far ahead of you on this journey, but I’ve learned a lot along the way. I want you to know a few things: 

It’s okay to grieve. 

I think there’s a big misconception about grief where it’s only allowed if you’ve experienced a death. It’s as if suffering a physical loss is the only permissible thing to grieve. But really, you are suffering a huge loss. Your child may still be physically with you, yes, but the person and future that you pictured may look completely different than you thought it would when you were dreaming about their life before they were born. 

I want you to know it’s okay to grieve the loss of what you thought your child’s life would look like and it doesn’t mean you love them any less. It’s okay to grieve the milestones they might not reach, the baseball game you might not see them play in, the parties they might not get invited to or the wedding they might not have. It’s okay to miss the person you never got to meet.

And know that the grief you may feel will come and go in waves. One day you might feel perfectly fine and the next day you might break down in the cereal aisle of the grocery store because you see a child the same age as yours doing something your child can’t do. 

However grief presents itself for you is perfectly normal and it’s healthy to feel all the feelings that may come your way. 

It’s okay to feel mad. 

I felt very angry when we found out my son’s diagnosis… and honestly, sometimes I still do. I was angry that he was struggling. I was angry with the diagnosis. Then I was angry that it was so rare. I was angry at God for allowing this. I was angry when people said the wrong things. I was angry that everything felt so out of my control. And then I felt guilty that I was angry and was angry with myself.

Anger is a perfectly normal emotion and it’s okay to feel mad when things aren’t going how you thought. The important thing is properly managing any feelings of anger and not letting it take a hold of you in unhealthy ways or directing it towards others. 

Channel your anger into something good. Take a kickboxing class. Pick up a new hobby. Take a 30 min walk. Go for a coffee run. Turn on your favorite song and dance for 3 minutes – it’ll be hard to feel angry after that!

And don’t be afraid to talk to someone if it feels like too much. There is no shame in talking with a friend or a professional for help in managing anger. 

It’s okay to take time for yourself. 

You know the whole oxygen mask scenario on the airplane? Putting your mask on first before helping those around you. That could not be more true being a rare mama. 

You’re about to embark on a very long, tiring journey. Unlike most journeys that have a clear destination, this is a lifelong journey with no real end. And the burnout is reeeeeal. 

This journey might come with tons of medical appointments and therapies. You might feel like you spend all of your free time working with your child to meet certain milestones and the very little free time you actually do have is spent on the phone sorting out appointments or issues with insurance. You might also start to see your date nights or time with friends start to diminish. 

So put that mask on yourself first and don’t you feel bad about it. Never feel guilty for needing a night away (best thing I’ve ever done for myself!) or taking the long way home from the grocery store so you can get your nails done first. The only way you can be the best parent to your child is if you’re first taking care of yourself.

You know your child best. 

You’re about to get a lot of input from other people. A LOT A LOT. You’re going to get input from doctors, therapists, friends, family or your random neighbor who knows a person who knows a person who has something similar to your child. 

If your doctor suggests a new medicine and you don’t feel right about it, it is YOUR decision to accept or deny it. If your therapy team so sweetly suggests a new toy or device or something for your child and you just know it won’t go over well, you have the power to say yes or no. 

Never ever forget that nobody knows your child better than you. You are your child’s biggest advocate so always, always, always speak up on their behalf. If it doesn’t feel right, it’s not right and it’s up to you to change it. 

You are not alone. 

Know that you are never alone. There is an army behind you of other rare moms and dads going through so much of what you’re going through too. It may feel isolating at times, but you will never be left on an island by yourself like it sometimes feels like. 

Find your people. Reach out to other mamas and make friends with people who know what you’re going through. I’ve connected with several mamas who I’ve never actually met in person, but it’s so comforting knowing they just get it. 

When I started on this journey, connecting with others was like a balm for my hurting soul. These are a few places I turned: 

Some podcasts to listen to: 

Some books to check out: 


Last but certainly not least, know that you can do this. Just focus on one day at a time and worry about tomorrow when tomorrow comes. 


From one rare mama to another, 
Brittany



Brittany Milstein
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