Moving Forward



“We must be willing to get rid of the life we’ve planned so as to have the life that is waiting for us.’ –  Joseph Campbell.

I just came across this quote and it is a very timely reminder, especially since I just crafted the following as part of a presentation I delivered on Saturday:

When our daughter was diagnosed with Rett Syndrome at 3 years of age, I can’t count how many well-meaning friends and family members sent us the Welcome to Holland poem by Emily Perl Kingsley as a way to help us deal with the new world that faced us.

How many of you might have read it?

In this poem, Emily likens the eager anticipation of having a child to the exciting anticipation of an upcoming trip to Italy and she likens the discovery that your child has a disability to unexpectedly landing in Holland, instead of Italy. She implies that Holland is simply a different destination –an equally pleasant destination, with its own interesting sites and activities for you to appreciate and enjoy.

I don’t know about you, but when I first read this poem “I laughed and then cried, finally screaming — “Holland, I only wish. My plane landed in Detroit.

When your situation more accurately resembles the dark side of Detroit – the crime, corruption and decline –  it can be very difficult to appreciate that Detroit might actually have some bright spots.  It is very easy and even understandable to get stuck or trapped in the unfairness and hardship of what this life might mean for you and your family– the sacrifices, the compromises, and the injustices that are involved.

Although in my mind Emily’s analogy trivializes the true experience many of us face when our child has special needs, it is in our best interests to look past this and recognize that  the real value in her message is in helping us see that we need to move forward and try to make the best of our situation no matter where we might have landed.

We are 9 years into this journey and I think I am finally at the point where I can really move forward, and leave what our lives should have been and could have been behind us. It is almost like shaking off the final bits of resistance that our clinging to our clothes but these little pieces carry so much weight.  I don’t think I will be able to explain completely why I feel that today marks a real divide between the past and the future, but it does and it actually feels great.

In letting go, it doesn’t mean I am not allowed to grieve or become frustrated with our situation but the difference will come from current issues and challenges rather than having deep roots to what should have been.





One thought on “Moving Forward

  1. Very powerful post. Totally get it. And congratulations to the “letting go”. So huge!! For me any kind of letting go is a long process to get there as opposed to a sudden change in mind set. You can want to accept or let go but just because you want it doesn’t make it happen. And then suddenly out of nowhere and usually after a really long time there is a shift in perception of the reality I’m living.

    Paula Sheppard Sent from my iPhone


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