Grieving the Loss of a Child With a Disability

In my experience, people who have never lost a child have the false impression that a child with a disability dying is somehow a loss that is “less” than when a parent loses a child from a car accident, murder, suicide, addiction, or accident in general. Our loss is no less and no more. We all have lost children. We all have to deal with the circumstances in different ways. Some people think it’s easier to lose a child living with disabilities because parents have to know that child may not live as long.

Some people seem to think parents of kids with disabilities should get over the loss within a few months, and feel the old  cliche of, “She is in a better place,” or “God needed another angel.” Our heads might already tell us this, but our hearts are broken and gaping. Just be there for us. Be there to listen. You can never understand, and I don’t want you to have to ever understand. I will never get over the loss. Not in days, months or years. It will always be a part of who I am. We will move on and the pain will change, but we will never get over the loss of not having our child in our arms. Walking past their bedroom and knowing I will never get to walk in there to give her morning hugs or night time kisses.

These misconceptions are so far from the brutal truth.

Our daughter, Megan, had a significant brain injury. She was not expected to live but a few hours. My life was devoted to her 24/7 365 days a year for 20 years to ensure her life was the best life she deserved. Imagine caring for your child every single minute of every single day, then after 20 years, that is stripped away. No, her death was not easier because she was sick. Her death was no less traumatic than any other parent who has lost a child. In our society, many people see a child who is in a wheelchair and can’t speak and assume their lives are somehow less than that of a child without limitations.

As the parent of a child with a disability, you can live with the fear that your child will die, maybe sooner than other children, maybe not. It is in the back of your mind. We don’t dwell on it, but it is there. Just because we live with that added stressful thought, it doesn’t mean it is easy when our child does pass away. We are dealing with not only losing a part of our soul, we are also trying to figure out who we are now.

I was always referred to as “Megan’s mom.” Our life was much different than most of the “typical households.” My friends were doctors and therapists. My weeks consisted of numerous doctor appointments and trips to medical supply places, daily home therapy and homeschooling, giving medication and making sure all medical aspects were in place. Vacations were few and far between. When we did go on a vacation, I had to plan extensively and I felt I had t pack my entire house. I had to make sure we had wheelchairs, joggers, oxygen machines, feeding equipment, medications, special bedding supplies, monitors, etc.  When that was all ripped away, I found myself at a complete and utter loss. A part of me doesn’t know how to function in the world. I was not able to be in the social circle. My heart is not only broken in two, but I truly don’t  know how to function in a world that I have not really been a part of.

A few months after our daughter passed away, a well intentioned person asked, “ So are you living life now?”

Truly, I was at a loss for words.

I get it. I get the whole thought process behind the comment. My daughter was in a wheelchair, nonverbal, had seizures and fought every day of her life. So, because she is “in a better place,” some people think I should be able to move on. After all, it’s been a few months.

I’m still in a state of “this can’t be real.” I am just now beginning to feel the real pain of her being gone forever. The first months, I was still in a state of disbelief. It didn’t seem real even though I knew it was real. I would walk every day out to the cemetery and stand there. But it was like I wasn’t really there. It was like I was standing there, but in a nightmare. This can’t be real. But it is. As each day passes the realization settles in.

I feel I have two choices. I can keep living in the past, or I can move forward with the present. I still wake up and go to sleep every day with my heart broken. For me, I had to make sure our daughters memory would never be forgotten. We started a “giving back” program in her memory. We donated all her equipment to other children with disabilities. Every year we donate a sum to a family in our daughter’s memory. I believe our daughter would want us to be living and helping others. She would want laughter and joy in our lives. Our Megan was the poster child for unconditional love, strength, joy, courage and overall perfection. I was blessed to be her mother. Because of her, I was able to see what so many never do. I witnessed real miracles. When I looked in her eyes, I saw God’s pure and most innocent creation. I may have only got to love her on earth for 20 years, but her legacy and love will continue on forever.  This mamma will see to that.

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