Did you just get hurled into the world of rare-disease parenting? Did you recently receive life-changing news that your child has been diagnosed with a rare disease? Are you swimming in questions, confusion, and fear? As you read these lines, are you thinking of the million other things you need to do? Do you feel like you’re alone on an island or in a sea of people but no one can relate?
I was in your shoes, and I’m here to tell you that no one should go this road alone. The truth is, you’re not alone. 15 million children in the United States under the age of eighteen have a rare disease. That means one out of every twenty households has at least one child with a rare disease. This represents a significant segment of the nation’s population. There are literally millions of mothers out there treading down this road. There are millions of mothers braving rare-disease parenting.
I am one of them.
My younger son was diagnosed with a severe, rare disease called spinal muscular atrophy (SMA) at eighteen months old. I was hurled into a world I knew nothing about. His medical needs were beyond my competency. I was just an ordinary girl trying to live her life when my world took on extraordinary circumstances. I thought motherhood was hard. Special-needs motherhood was next level.
Along the way I learned a lot of things—things about rare-disease parenting that I wished I’d known right away. But because this road isn’t typical, it takes a while longer to figure them out. You have to learn where to turn for information, so unfortunately you don’t discover many of the things you need to know about rare-disease parenting until later in your journey.
Moms are better together—helping each other out, cheering each other along, and picking each other up when one falls down.
But can you imagine how things would be different if you knew them right away? What a difference it could make and what a timesaver it would be. Now, after years walking this road, I’ve been exposed to a whole set of rare-disease resources and special-needs moms. They have been a wealth of valuable information. In talking to other moms, I’ve realized that although our children’s diagnoses are different, the challenges we face and the paths we’re on have a lot of similarities. A multitude of things are universal to us.
These “universals,” as I call them, appeared time and again in my conversations with other special-needs moms, and I got to thinking about how it would help if we all knew the universals of rare-disease parenting right away. Our time is so precious, so limited, and pulled in so many directions. How could we get this information sooner so that our children and families could benefit from it right away? How could we enter the right frame of mind and put on the right armor to tackle all that was in front of us? How could we approach this rare-disease parenting journey with bravery instead of fear? Out of these thoughts, the idea for this blog was born.
It also came from the idea that in dealing with something so overwhelming, it sure would help to have a friend who had been through it before—someone who could relate, give sound advice, and perhaps even offer a kick in the pants when needed. Some of the most meaningful and most useful rare-disease parenting advice and guidance I’ve received has come from other moms. They are my heroes and they inspire me. Moms are better together—helping each other out, cheering each other along, and picking each other up when one falls down.
But the truth is that most of us don’t have a best friend who has been through this. Our road isn’t typical. Since most of us don’t have this type of confidante, we often feel alone and isolated. My guess is that along the way, you’ll start to meet other women whose children have rare diseases and special needs, and some may even become your closest friends. But this happens with time, and the truth is, you sure could use that friend right now. You sure could use all of that good advice today.
Yes, this journey is tremendously hard, but you can do it. Did you hear me, friend? You can do this!
So for now, I’m happy to be your rare-disease best friend and this blog can act as if you and I went out for coffee (or vodka) to talk about it all. You could cry and vent and scream about how hard this is, and I would listen and touch your arm and say, “I know, friend, I know.” Then I would tell you everything I know to help make rare-disease parenting a bit easier for you. Like any good best friend, I would give it to you straight and tell you everything—the good, the bad, the ugly, and maybe even some things you don’t want to hear. Then I would look you straight in the eye and tell you, “Yes, this journey is tremendously hard, but you can do it. Did you hear me, friend? You can do this!”
I’m living proof and I’m here to tell you, because one day not too long ago, I was you. My son was newly diagnosed with a rare disease and I was spinning in sadness, confusion, and worry. But I found my way through it and so can you.
Now there is something I should probably tell you right up-front. I know you don’t even have time to brush your hair, let alone read this, so I won’t waste your time. Straight up, here’s the deal: I never wanted to be a writer. Yes, I worked in advertising and then at a magazine for many years, but I worked on the marketing and research side, not the editorial side. I had to know a thing or two about writing for business but rarely opinion writing. I’ve never before had an idea for a blog or wanted to be a writer, yet I felt compelled to write to you.
Yes, compelled. Going through this rare-disease parenting journey has tugged on my heart. I kept thinking about all the rare-disease mamas out there going through this alone. I kept thinking about how hard it is to find information, how useful it would be to enter this journey with the right mindset, and how helpful it would be to have a coach who could come alongside and encourage you to keep going. I kept thinking about you all. You’ve been on my heart for years now. But truth be told, even though I had all of this rare-disease parenting information that I wanted to share, I didn’t have time to write. The last thing I had time to do was write. Of all people, you get it.
It took me being laid up after having knee surgery to begin writing, sitting and waiting during my son’s five-hour hip surgery to continue writing, and being laid up for another knee surgery to write some more. So here it is. All because you were on my heart, and if I could make this road just a little easier for you, then I sure wanted to try. If I could give you everything I wished I’d known when my son was newly diagnosed, and if I could give you what I thought could save you time along the way, then I sure wanted to try.
So my writing is my heart on a platter, served up raw. It’s my love letter to you. Yes, even though I haven’t met you, I already love you, friend. I love you right now, right where you are. Even if you’re sitting there in your sweat pants that haven’t been washed in weeks. Even if you’re ten pounds heavier than you were a month ago. Even if you have tears streaming down your face. I love you in your mess. I love you because I know that despite it all, you’re still showing up to take care of your child. You are the definition of love. And I love you for that.
Along my rare-disease parenting journey I’ve dealt with the gamut of emotions, obstacles, roadblocks, trials and errors, no’s, hurdles, and falls on my face—but sister, I’m still standing.
I figured, What’s the use of going through all of this if I can’t use it to help someone else? What if I could prevent you from having to go through some of those things, or at least prepare you for them? Looking back now, I can see there are steps that can be taken to move you from distress to prowess. But in the beginning, it’s hard to know how to get there without having a guide. So it would be my absolute honor to steward you through your rare-disease parenting journey.
That being said, I’m still on my journey and still learning. So sometimes I may get it right, sometimes I may get it wrong. It’s just the view from where I sit and where I’ve sat. So let me give you a few insights about the type of friendship/guidance/coaching that I will offer …
- I’m going to keep it real. What you need right now is the type of friend who’s going to give it to you straight. The type of friend who, if you ask if your butt looks big in those pants, and it does … her answer will be a loving, “Yes.” I can’t truly help you if I don’t give you truthful information. Plus, keeping it real is just how I roll. Mama, you don’t have a lot of time and neither do I, so let’s use it wisely and get down to business.
- Hope is my modus operandi, or M.O. I believe you can keep it real but still keep hope in your heart. I approach everything from a place of hope. My hope doesn’t come from blind optimism; it comes from a place of expecting and believing in the best despite my circumstances. It has helped me immensely, and I believe it will help you too.
- Humor is one of my best weapons. Though this subject matter is heavy, one thing I told myself I would not do, no matter what life threw at me, was lose my sense of humor. And believe me, I almost did. But I fight against losing it every day. Why? Because it’s one of the best arms in my arsenal. The rare-disease parenting journey is tough and you gotta pull out everything you have in your bag of tricks. Humor is in my bag and I’m pulling it out. So I hope you know when it’s being used, it’s not to make light of the subject or the hardships; it’s a tool used to get through them.
- I’m a woman of faith. My faith will show up all over this site because it’s a huge part, if not the most important part, that got me through in my times of greatest need. I know not everyone shares my faith, and that’s okay with me. But it’s been an anchor, and just like everything else, I’m sharing it with you too.
Now that you know what you’re getting yourself into with this blog, let me tell you what I believe you’ll get out of it. I’d like to offer you information and encouragement, so that you can walk away with your inner fighter awake and ready to attack. It’s the kind of encouragement that I think will fuel you to do what you need to do, and the type of information that will put you in the right frame of mind to take on the rare-disease parenting journey before you. It’s a blend of concrete tactical tools mixed with the mentality and attitude you’ll need for this journey. It’s the hope that you need to know exists, from one mother to another who’s been where you are.
Mama, I’ve got so much information to share with you. Start here for all the most relevant articles to get you going on your way. Also, check out the Rare-Disease Resources page to find helpful sites and information to help you. In case you didn’t know, there are entire organizations like NORD and Global Genes dedicated to the world of rare-disease. I will help you navigate your way through this!
You may be in the hardest part of your journey, and no one should go it alone. I want you to know that you’re not alone, you can do this, you’re a fighter, and—even if you’re in the middle of your deepest darkness—you will see the light once again.
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