I have always heard about the five stages of grief–denial, anger, bargaining, depression, and acceptance. Until recently, I never realized I have personally experienced all these same stages of grief regarding the diagnosis of my son’s disability. So I have decided to describe some of the emotions I have felt on my own journey. For those of you who are parenting a special needs child or maybe just know someone who is, I hope it gives you a little insight into the complexity of all the feelings that go along with this special path many are on.
Denial…When James was young, I knew he was delayed but I had a hard time admitting that he had a real disability. He had difficulty walking, talking, and eating, and we had been told he had a genetic deletion. But he was young and nobody knew much about this deletion anyway. I knew things were challenging, but I could never really admit that we were past the level of just a learning disability or a mild delay and had moved into the realm of a life-time, permanent disability. I remember being surprised when a stranger, who had noticed the difficulty I was having with James, walked up to me and handed me a card for a mother’s day out program geared toward kids with special needs. This woman knew that my son was “different”, but I still was in denial.
Anger…The desperation of trying to find a solution to all of James’s challenges just caused frustration. Nothing was working. Nobody had much information to give us. My anger often was focused on everyone else. Why would nobody help us? Sometimes it was focused on my son. I thought he just needed to try harder. Other times I was angry that I had to deal with this at all. Why? Why me? Why couldn’t I have a “normal” life with “normal” kids? [And yes, I realize it’s terrible to say this but I believe it’s important to be authentic about the not-s0-Godly emotions we have.] Why couldn’t I have the life everyone else had? Looking back, it’s almost embarrassing to think about the anger I felt toward so many people, including my son, but I also recognize it was part of my growing process.
Bargaining…This is where my feistiness kicked in. Ok, so James has this disability, but I bet we can do something about it. Surely with the right therapy and with time, he can improve and catch up. I thought, “This is just temporary. There must be a way to fix this. There must be something I can do!” Honestly, I think I went back and forth between anger and bargaining, or maybe I experienced them at the same time. During this season, I was always busy trying to find solutions. I wore myself out working, and when I wasn’t working, I was thinking about what I should try next. My mind never stopped. This was a place of constant striving and then disappointment when my expectations were not met.
Depression…After so much striving, I moved into this dark place and stayed here a while. Exhausted, overwhelmed, disappointed, and frustrated, I struggled each day to just keep moving forward. What was the point? I tried so many things with seemingly little progress. When progress is so slow it is hard to even see it, and I often got bored and hopeless teaching the same thing over and over with no success. I cannot tell you how many years I spent trying to teach James his alphabet using every possible method, and he still does not know but 1 or 2 letters. During this season, I did finally go to counseling. I didn’t know how to define what I was feeling, but my therapist looked at me after only a few minutes of my first session and asked, “How long have you been depressed?” I had described my life to her as if I were swimming in the ocean trying to tread water and holding everyone else’s head above water at the same time, so tired and unsure how much longer I could survive. Fortunately, through counseling, support from others, and truly seeking God in my pain, I moved on to a much better place.
Acceptance…I’m so thankful to be here. Please don’t misunderstand this final place in the journey. It’s not all rose gardens and picnics. It’s still hard and overwhelming at times. But I have learned to just embrace what is, let go of things that will never be, and still save some hope for miracles. I give myself and James a lot of grace. I take it one day at a time, doing what I can do and then laughing when things don’t work. I have accepted that my life with James will look different than life does for many others. Occasionally, I cycle back to one of the other stages and linger there a bit. Fortunately, God often pricks my heart a bit and helps guide me back to this better place.
A few years ago I read an essay called “Welcome to Holland”. It is a well-known description of what it’s like to find out your child has a disability. When I read it the first time, tears welled up in my eyes because someone had finally put into words so much of what I felt. It’s not a perfect description; it tends to lean toward a more beautiful image of the experience, omitting all the truly ugly emotions you feel. However, it certainly helps put it all in perspective, and it’s worth a read.
As I continue on this journey as the mother of a special needs child, I realize I’m on a path that very few of my friends and family have ever traveled themselves. Sometimes it is lonely. Sometimes it is just hard. Sometimes there are perfect moments of delight where God shows me just how much He is with me and helping me on this journey. These are the moments I try to cherish.
For any of you who are walking down this same road, know that you are not alone in your grief, you are not alone in your struggles, and you are not alone on your journey. I pray you remember to reach out to others and most importantly, reach out to your Heavenly Father, who will equip you, comfort you, and strengthen you beyond what you can imagine. May God bless you on your journey!
Growing By Surprise 