Sometimes, we do not get to choose the journey. Instead, the journey chooses us.
The most intricately designed plans are not always carried out as envisioned. Sometimes, curve balls are abruptly hurled at us, knocking us off course. Our plans become forever changed.
My family’s journey swiftly changed when we received my son’s Autism Spectrum Disorder diagnosis. Months later, we would meet another bend in the road, with the diagnosis of my daughter’s rare genetic disorder. Then, came Epilepsy. Processing your child’s diagnosis and learning that his or her life will be filled with challenges feels like being placed on a confusing detour from your intended path. It throws you on a scary, unknown, and indirect course.
A line from one of my daughter’s favorite books hits this fact home, every time I read it aloud.
“Roads…bend. Detours head where you wouldn’t expect, showing you various ways to connect.”
Thinking back on the early days of receiving our children’s diagnoses, and seeing how far we’ve come, I realize now that the journey we had originally planned was simply not the one that we were destined for. Over the years, I have found that the experiences of other travelers, parents of children with disabilities and special needs who were similarly detoured, have helped us pave our way. They have made our expedition a bit less lonely. If I could reach out to parents of a newly diagnosed child, I would share advice that has assisted us in navigating our travels.
Take time to grieve. None of this is easy. Your whole world has been turned upside down. Cry. Grief will likely revisit you from time to time in waves. Allow yourself ample time to grieve. Let yourself feel it. You will stand stronger once it recedes.
Locate resources. Reach out to every single resource available, without hesitation. There are abundant programs out there to help secure supplies, therapies, equipment, and more, to help you maneuver this path. Never feel guilty in requesting all the benefits and supports that are needed to help your child thrive. Your child requires more. You are not asking for too much; never let anyone make your feel that your child deserves any less.
Find your tribe. Doctors are not going to necessarily be the experts on your child’s diagnosis. Parents that travel the same path as you will be. Soon, YOU will be. Reach out and locate support groups. Online support groups, often specific to your child’s diagnosis, are out there and they can be a godsend.
Extend yourself some grace. Do not be too hard on yourself. This job is exhausting and wonderful and demanding, all at once. It can be mentally and physically draining. Most people can’t begin to grasp the depth of that. You are giving all your best for your child; you are enough. The love that you pour into caring for your child will be unmatched. Remember to give yourself a break.
Become an advocate. Never be afraid to stand up and fight for your child’s rights. Arm yourself with a wealth of information on your child’s diagnosis. Educate others and never back down when you are challenged. Speak up when ignorant comments are uttered in your presence. Don’t be intimidated; be prepared to bravely go to war on every front, for the one you love so fiercely.
Share with other parents. If you feel compelled to do so, share your story with others in your shoes. Someday, the telling of your journey could be a ray of hope for another family. By imparting knowledge and bestowing compassion, you can greatly help others standing at the beginning of their own detour.
My husband and I have embraced our journey. We are not perfect parents, or by any means “special” parents. Over time, we have simply transformed into the parents that our children need. We stumble. We fall. We brush ourselves off, get right back up and begin again. Trial and error, love, tears, hope and perseverance have been integral components of traveling this road.
We dedicate our lives to being the best versions of ourselves for our children. To the parents of a newly diagnosed child, you will do the same. This journey that has chosen you is not an easy one, but it will be amazing. It is yours and it will bring out the very best in you. Remember to slow down and take in all the beautiful and unique sights you will encounter, every step of the way.