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Grieving the Loss of What You Thought Would Be

Special needs mom, Clinical and School Psychologist
09/27/21  2:39 PM PST
grieving the loss of what you thought would be

When we are faced with news or experience of loss, whether physical or perceived, we respond with shock and disbelief. We then experience all of the emotions that flood us while we are trying to accept a reality that we did not want. As parents, when our child or children are diagnosed with a medical diagnosis, learning disability, Autism, or whatever else, we may experience grief and mourning as we struggle to understand what we are feeling and why we are feeling this way.

Many times, in my private practice, parents will seek me to evaluate their child in order to answer the questions that they have been asking.

  • Is my child on the Autistic Spectrum?
  • Does my child have ADHD?
  • Does my child have a learning disability? What type?
  • How does my child’s anxiety impact his ability to learn?

By the time they meet with me, parents have already consulted with their pediatrician and maybe even a neurologist. The next step is to confirm what your child is struggling with in order to pursue treatment.  During the seeking information phase, there are a lot of feelings to be felt. A great deal of fear and uncertainty. There is seeking of information but anxiety about what your child may be struggling with.


Welcome to Holland

Emily Perl Kinsley wrote a powerful description of what it is to have had expectations for what you thought your life would be, and how a person feels when the reality doesn’t match the fantasy or “the plan.”  She also describes enjoying your “new destination” although it was not part of the trip itinerary.

Welcome to Holland


I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.” “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you never would have met. It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…and you begin to notice Holland has windmills…and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy…and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away…because the loss of that dream is a very, very significant loss.

But…if you spend your life mourning the fact that you didn’t get to go to Italy, you may never be free to enjoy the very special, the very lovely things…about Holland.




Stages of Grief

In 1969, Elisabeth Kubler – Ross so brilliantly created an understanding of grief that has been integral in the field of psychology to the present day.

She defined the 5 stages as denial, anger, bargaining, depression and acceptance. For those who have experienced grief, you know it’s not a linear process. You don’t check the boxes as you pass through each phase and once you’ve reached acceptance, you have now accomplished your end goal. Instead, we pass through the stages of grief and can regress and return to an earlier phase. As much as we would love to be able to check each box and receive a prize or certificate when we reach the end, grief is much more complicated than that.

It’s okay to stay in one phase longer than the others and to go back and forth. The process will take time as the present grief may also be triggering earlier grief or trauma that was not processed fully.


Seek Therapy

When you’re grieving, it can feel isolating, never ending, all consuming, overwhelming and just dreadful. There are days that you may feel like you don’t want to come out from under your covers, or you’re struggling to leave your couch. You may be struggling to do your job or parent your children.

There’s no need to suffer alone. Seek the help of a therapist who can help you to process your grief, accept your reality and heal.

Support groups are also a place where you can be with others who are experiencing grief as well. It’s validating and healthy to see that some will be “behind” you and others will be “ahead” of you in the healing process.

In therapy, individual or group, speak honestly to your emotional struggles and how your reality is not in line with the way you believed your life would be, or how you wanted it to be. Acknowledge that you had a different plan and process all of the feelings that come with it.


Loss triggers grief, and grief is a process. There’s no shame in how you are feeling and know you are not alone. There are many of us out there who can support and guide each other as we process and adapt to being in Holland even though we really wanted to go to Italy.


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