Being a parent, or caretaker, to a special needs child has its moments of isolation. You are constantly looking for a way to put into words what you are feeling, or for people who understand what you are going through. I can’t tell you how many times we have heard, “I can’t imagine what you are going through.” No truer words have been spoken. Unless you are living with a special needs or medically complex child, there is no way to possibly know.

Like with many things in life, there are multiple steps you may go through when you find out your child isn’t developing typically. Denial, anger, guilt, sadness, and ultimately acceptance, to name a few. Everyone processes information differently, so the amount of steps might be different, as well as the duration you stay at each one. There is no right or wrong way to feel. It’s really specific to each person, child and situation.

I have learned over time that Dr. Google is not my friend. Doc G. sends you on roller coaster of emotions. He (in my world google is a he) can give you false hope, and until you get any type of diagnosis, fills you with numerous possibilities and the most dire outcomes. I am told constantly by Steve, friends, family, and medical professionals to stay off of google, but at some point, I always get sucked back in.

In the past few years I have joined multiple social media groups that are filled with people who are searching for, or who have found answers. They share suggestions and provide guidance to those who are in need of help. I have made new friends and reconnected with old friends. These individuals have become my greatest resource when I need answers to the simplest of questions. There is never judgment, and no question is off the table. I have yet to inquire about something that didn’t get at least one helpful response, and have had the pleasure of helping others as well.

When Ella was about two, someone in one of my groups posted a piece written by Emily Perl Kingsley titled, “Welcome to Holland”. (I will attached a picture of it below for everyone to read.) After I read it, I immediately said, “that’s me.” She offered a different perspective on raising a special needs child, and it totally made sense. The comparison she provided was spot on.

It essentially says that life with your special needs kiddo may not be what you expected it to be, and all the things you had been looking forward to may not happen. That doesn’t mean that the life you will have with your child won’t be equally, if not more, magnificent. It’s just not going to be what you pictured. You aren’t taking the journey you wanted, but in the end, it will be one worth taking.

When days get tough and I wonder what Ella’s future, and ours, will bring, I read this piece and am reminded how incredibly blessed we are. The people we have met, the people we have become, and the things we have learned, have made us all better people. The truth is, we can’t miss something we never had. We appreciate all the blessings that Ella and her disability have brought to us, and continue to live each day feeling just as we should….grateful.

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