Best Advice from 5 Seasoned Rare-Disease Moms

I believe we, as rare-disease moms, are so much stronger when we learn from one another. So let’s keep sharing our stories. Let’s impart our knowledge. Let’s spread our “tried and trues.” Let’s continue picking each other up and helping each other out. Let’s brave this together!

I’ll be featuring lessons learned and stripes earned from rare-disease moms, who’ve risen up from difficult diagnoses. Get inspired and learn from these Rare Mamas rising!  

Claire, Rare-Disease Mom—CANDLE Syndrome

“My best advice to other rare-disease moms is to take care of yourself. As moms, we are accustomed to letting our needs take a backseat to those of our children. This goes on overdrive when you have a child with a rare disease. But I cannot stress the importance of taking good care of yourself in order to be able to take care of your child. Put your life jacket on first, then put on your child’s.”

Samantha, Rare-Disease Mom—Spinal Muscular Atrophy

“My advice to newly diagnosed rare-disease moms is to surround yourself with supportive people who want to help. It may be hard, as you may want to push them away, as you learn the ins and outs of your new reality. Your anger over this new reality can shut you off from your family and friends. Don’t let it. You will find that there is still so much happiness and joy to your beautiful child. The diagnosis is just that, a diagnosis. It does not take away their personality or the joy they are meant to give this world. I am not saying there won’t be hard days when you feel like there isn’t anyone that can understand how you feel. There will be. I still have them, nine years into my son’s diagnosis. Every time your child is left out and mistreated because of their physical disability, your blood will boil, and your heart will ache. You will find it’s usually very unintentional, but it hurts all the same. You may be angry that you have to be the one to teach others about inclusion and compassion. But when it happens, and your child is included, your heart will soar, and you will know why you were given this job. Lastly, I would say get yourself involved in the community for your child’s diagnosis and attend conferences and meetings as soon as you can. These are your people, and there will always be someone that understands and will walk alongside this new life you are learning.”

Rachel, Rare-Disease Mom—Retinoic Acid Receptor Beta

“My #1 piece of advice to rare-disease moms is to journal every night and notate specifics on milestones, concerns, and victories you notice. Then read it at the end of each month to get a clearer picture of what is working and, more importantly, what isn’t!”

Lisa, Rare-Disease Mom—Duchenne Muscular Dystrophy

“When you first become a rare-disease mom, it is imperative that you find and surround yourself with other special-needs moms. It will make you feel less alone in a world that can often feel very isolating. Seek out these relationships, and I think you’ll find that other special-needs moms are willing to help because they’ve been where you are.”

Ann Marie, Rare-Disease Mom—NGLY1

“If there’s ever a time to look at the glass as half full, this is that time! You have the next ten minutes to have yourself a real, good pity party … go ahead … cry it out to the heavens, yell, stomp that foot, and scream, “Why?” After that ten minutes, my advice to you is to roll up those sleeves, rub your palms together, sway back and forth, and say, “Okay, God, let’s do this! Bring it on … I’m ready to be your hands, feet, eyes and anything else you need me to do to help this child you’ve gifted me with, because, together, there’s nothing we can’t do!” Then open your eyes and mind to “do the do.” Ask questions, seek out resources, say yes to suggestions, get out of denial and into action, put your thick skin on every day, and say your prayers. Most importantly, live in a state of gratitude as you pay close attention to the many blessings that will come your way on this journey. I guarantee that, if you do this, you will look back one day—maybe it’ll be in a month, a year, or ten years from now—and see the goodness in this rare-disease mom journey. One day, you will know why, and you’ll be thanking God for the transformations and blessings that come from the most challenging of times. One day, you’ll be stronger and better for being chosen to be your child’s parent. Then it will be time to raise that half-full glass and toast to the gift you’ve been given. That is the gift of having the opportunity and the honor to make a difference in the life of another human being who also happens to be your precious child.”

Welcome to the Rare Mama Sisterhood! Check out this article to learn even more about what other rare-disease moms want you to know!

Have a great tip, useful perspective, or something to share? Write and let me know at nikki@raremamas.com

I want to hear about all you Rare Mamas rising!