To My Younger Self After My Child Was Diagnosed With a Rare Genetic Disorder
Dear Jen (September 2007),
I am sorry to hear about your daughter, Sydney. Her diagnosis of Smith-Magenis syndrome must be quite a shock. There was no way you could have anticipated this and absolutely nothing you could have done to prevent it.
Knowing you as well as I do, I’m sure you’re frightened and overwhelmed right now. Your fright/flight response is in full force, and you’re trying to figure how you can flee from this devastating situation.
At the same time, I’m certain you’re preparing to stand and fight. Here’s what I can offer you having been there myself. The first and most important thing you can do is to allow yourself to grieve. Cry hard and cry often. It’s cleansing to both the mind and soul.
Choose your closest and most trusted friend to do this with because there will come a time when you will prefer that others don’t remember you this way. You have a very long road ahead of you and will need to be perceived as strong for both Sydney and your family. So protect your vulnerabilities.
Once you have gone through that first round of crying (because there will be more), start talking. Talk to anyone who will listen. It will keep your mind busy and your time occupied so you don’t succumb to the hopeless thoughts that are inevitably in your head.
Trust me, you’ll want to avoid those dark thoughts until you have at least recovered from the initial shock. By talking to others, you’ll slowly learn what’s needed to begin an action plan. People love to share their experiences, and you can learn from them so listen even if they say things you don’t want to hear.
The next step involves an overall needs assessment. This step will be trial and error and may take years to fully fine tune, but it’s critical to figure out what you need, what Sydney is going to need and what the rest of the family will need. The transition to a life with special needs is challenging, so make those needs a priority in your new world. The health and wellness of your core family is vital to surviving this profound detour in your life.
Next, start to build your own personal support team. Determine who will be able to go the distance with you because the road will be long and arduous. Times will get ugly and messy, and there will be moments when you’ll want to leave it all behind. You need someone to make you realize just how strong and powerful you are. You need someone who says, “Get back in there and keep going,” not someone who says, “I can’t even imagine.”
After all of this has been put in place and you have built your foundation, you need to become an expert on her diagnosis. Although you might not believe it, you’ll find yourself empowered and inspired by how much you have learned about the syndrome and yourself. At some point, you will feel like you have choices in your life again. A new “normal” will appear, and with the support of this new life you have built, you will begin to venture out into the world again.
The final stage will bring a renewed sense of hope, and it has potential to lead you to many new avenues in your life, just like in the immortal words of Dr. Seuss’ “Oh, The Places You’ll Go!” New doors will open for you, and you’ll meet many new and interesting people.
You’ll learn the true meaning of taking nothing for granted, and you will live your life by a new creed. You’ll have a genuine appreciation for differences and begin to care about people in a whole new way.
You’ll experience setbacks along the way (everybody does), but your emotional and physical strength will surprise you.
As you make your way through your new world, make sure you keep this in mind: You’re now a warrior. You have fought long and hard and have not only survived but thrived.
There will be numerous battles along the way, but if you stay focused on the important things in life and avoid getting sidetracked by naysayers and self-doubt and pity, I promise you will win the war (the war to live a happy life).
Your loving and supportive self who has lived it and is surviving,
Jen (December 2013)
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Jennifer is a licensed clinical social worker specializing in working with special needs families. She is also a devoted wife and mom of three kids. Her youngest has a rare genetic syndrome called Smith Magenis syndrome. Jennifer is passionate about redefining what it means to be a parent of a special needs child. She is an active blogger on her Strength For Sydney site and has written numerous blogs with brutal honesty and insight sharing her unique perspective with the community. One of her blogs “My Days of Counting are Numbered” was published in the Journal of Genetic Counseling in July 2013. In 2010 she co-founded The SMS Research Foundation which is dedicated to raising money for SMS research. In 2017 she created Living Special Needs a psychotherapy practice that specializes in treating families who are dealing with special needs.
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