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The 3 Milestones We Needed to Settle Into Life as a Special Needs Family

Emily Perl Kingsley wrote “Welcome to Holland,” a beautiful poem about planning the life we intend to have with the healthy child we anticipate, and learning to live with the profound challenges some of our children have. Emily talks about planning a trip to Italy and ending up in Holland – a strange place you’re not ready for, but in time, you see it has beauty all around.

As the father of a 5-year-old boy named Jack who has cerebral palsy, cortical visual impairment, epilepsy, and dysgenesis of the corpus callosum, I can relate to the challenge of that transition. I intended to share all of my favorite things with Jack, like motorcycles, airplanes and playing catch in the yard. All of the plans I made going into fatherhood didn’t apply to my little boy, and it took some time to recognize how amazing our life in this unexpected place really is. I have a short list of milestones I believe were crucial in transitioning into what has become a life more fulfilling than anything I could’ve ever dreamed of.

1. We stopped isolating ourselves and reached out to friends and family.

In December 2011, Jack had MRI results that indicated he had leukodystrophy, which is a difficult diagnosis that carries a very serious prognosis. I don’t recall that period of time very clearly; it’s a blur. My little boy was likely going to be leaving us early in his childhood. My whole being cried… body, heart and soul. I cried until I couldn’t cry anymore. I was also distraught knowing my wife was the primary household earner, and she wouldn’t be free to spend her remaining time with little Jack. 

I set up a crowdfunding project to raise funds that would allow her to stop working while she stayed home to focus on our boy. The effort was received so well by our family and friends, and quickly we had support from all over the United States and beyond. Then, about a week into the funding effort, the phone rang and the doctors retracted the diagnosis of leukodystrophy. Wow! A lot of prayers were answered in that moment. Ultimately, we ended the funding effort and returned the money that was so generously donated. Only there are some things you just can’t return – mainly, love.

When the initial email went out describing our situation and Jack’s challenges, the most common response was, “We had no idea you were going through this! How can we help?” Without even realizing it, we’d become so buried in challenges that we cut ourselves out of the lives of friends and family. Coming out of that isolation was the most helpful thing we did to become comfortable and ultimately embrace our life as parents of a special needs child. If you’re isolating yourself right now, please know many of the people in your life want to help, so let them – the first step is opening up and letting them in.

2. We found a unique way to connect with other special needs families.

The amount of love we’ve received from the world since Jack’s arrival is, like so many things in our lives, hard to describe. I found myself so surrounded by it, I felt obligated to give back to other families like my own. As it turns out, Jack bought me a guitar after we learned he was blind, and that became one of the primary ways we bond with each other. 

Ultimately, it was this bond we used in our effort to make Holland a better place when Jack inspired the creation of Giving Songs.  This is an all-volunteer group helping families with blind, multi-disabled children through the sale of locally recorded music. The remarkable thing is that every family we help offers some form of help in return, in addition to a priceless new friendship. I’m not suggesting every family should start a foundation, but I do suggest finding a local organization that supports your child’s community and getting involved. You’ll make friends, learn to avoid unnecessary pitfalls, and learn about resources you didn’t know existed.

3. We realized we’re happier where we are than where we thought we wanted to be.

In 2008, I answered an interview question about my five-year plan with this: “I’m 30 – I want to finish my MBA, buy a home, start a family, and ultimately be sitting on your side of the desk.” I did get that job, but my five-year plan was a bit bumpier than expected. Although I completed each of the goals I mentioned, I didn’t know that I’d also become an entirely different person. 

I know what true love is now. I’ve watched an amazing woman raise our amazing boy. I know what’s important, and it isn’t the stuff you buy with money (except for wheelchair-accessible vehicles, those are important and typically require money). I’ve learned to embrace the world as it is, and the people in it as they are. 

The road we’ve travelled is so much more difficult than I ever could’ve imagined, but it’s equally as rewarding and beautiful. The day you realize that you’re happier where you are, than where you thought you wanted to be, is the day you’re truly at home here in “Holland.”

brent johnson the mighty

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