Our son’s diagnosis came in 2006 while I was twenty weeks pregnant and expecting a perfectly healthy baby. On “D-Day” or diagnosis day, our world was shattered, and I began to grieve. This grief came not at the permanent loss of a person, but the loss of a dream of having a healthy, able-bodied child.

“You have to grieve for the child you were expecting before you can accept the child you have. Some stages of grief you might experience are: denial, anxiety, fear, guilt, depression, anger and acceptance.” (Extraordinary Kids: Nurturing and Championing Your Child with Special Needs by Fuller & Jones).

What I didn’t realize at the time was that this grieving cycle would be a continuous rollercoaster ride. As a special needs parent, I am always living in one or several of the stages of grief. Some crazy circumstances in my life helped me come to that realization, and ironically it released me.

In 2011, our SN son had an unexpected four day hospital stay with few answers as to why. We left our inpatient room to immediately drop in to an out-patient appointment, only to schedule his tenth surgery. He was only four years old and in special needs preschool. At the time, our older two boys were in elementary school. As a result of Toby’s hospital stay, I missed the field trip of son number two, was in the middle of painting my kitchen, and had a long list of other family which included end of the year school chaos…ahem…festivities. I was also carting around a toddler and packing for a trip back home for my sister’s bridal shower. 

If you’ve had a child in school, you realize how crazy end of the year events are. There are parties, programs, field day activities, and chaos! Most parents breathe a huge sigh of relief when it’s over. Without the ability to clone myself to be in three places at once, I enlisted the help of some family members.

It was going to be a simple stop at the library to return some books while on my way to the school for the above mentioned activities. I was slightly apprehensive because I needed to fess up to them that our toddler had damaged two of them, one of which is was a board book. Don’t they make those more durable? I thought they were meant for toddlers! The librarian didn’t know what was coming to her that day or that she would experience my Mommy Tantrum.  As she informed me that I needed to pay the full library book binding price to replace both of the books, I had a meltdown: tears, anger, and the assured vow that I would NOT return to her particular branch of the library ever again.

Later as I began to reflect on what in the world would cause such emotional turmoil over Library Books, I realized several things:

• I had been running on adrenaline – I had no space to breathe or process that last unplanned hospital stay.
• I had not allowed myself time to grieve or mourn all the losses that had occurred – time with family, a field trip, letting down my other children. I never want them to resent their brother because they didn’t get their share of my time and energy.
• I have to be strong for Toby in the hospital as he endures pain. I need a clear head for making tough decisions, educating nurses, and advocating. All of these are exhausting.
• In order to keep a clear head, I was stuffing down the emotions, turning off the “feel”, and later they came back to bite me in the rump.

Usually, our tendency in the middle of a crisis is to buck up, pull ourselves up by our bootstraps, and shut off those feelings, but later – later grief is going to come.

We need to expect it, plan for it, and not be surprised by it. During trauma, you are in shock, denial, and don’t have the time/space or energy to grieve the losses that have just occurred.

In the years since that experience, I have come to name, accept, and embrace that the journey of a special needs parent is one of living in that grieving cycle. Sometimes it’s small things that make me grieve, sometimes they are big realizations or major medical emergencies. There are many days of living in acceptance, but sometimes there is denial, and anger. This is okay!

So, why is this important? There is healing in naming what emotions or grieving stage your are experiencing. There is mending that occurs in your heart when you can engage with the events that have occurred in your life and talk about them with others.

In a podcast by Adam Young entitled “Why Your Story Matters More Than You Think” he says, “If you are able to tell your story while remaining connected to your emotions, then the neural networks in the left part of your brain will link up with the neural networks in the right part of your brain. This is very healing!

That day after I left the library, the still small voice from the Holy Spirit helped me recognize that this grieving cycle would be one I would always live on as we raise our special needs son. I am the type of person that really needs to know what to expect about any situation and because I could expect that these emotions, especially grief would come again. It has made it a bit easier. When those emotions of grief, pain, anger, and anxiety come, it’s much easier for me to pause, reflect on what has been happening in our lives the last few months to identify the source. When I name it and grieve it. There’s healing.

What has your experience been with your grieving cycle? Have you ever thought about how a special needs parents is always living in it? I would love to converse about this with you in the comments. Be sure to subscribe to my monthly newsletter and you will get a free download entitled “Five Tips for Healthy Ways to Process Grief”