After I got to know a lady who had a Down’s child, I ask her if she knew before her son was born or learned at birth. “At birth” she remarked, “Same time we learned he was a boy and a red head, a lot to take in at once!” She broke into a huge smile. “Just having a red head was a shock.” This time I was the one breaking into a huge smile.
How we react to disability is as unique as our children are. Some issues are known at birth or a few days later. Still others hit out of the blue a few months or a couple of years down the road. These blows seem harder, the child you had is not the same child. Not only do you loose the dream of who your child would become, you actually watch a child regress or loose the skills they already had. The loss can be confusing to the rest of the family and your friends as well. Comments made during this time can also be hurtful. I had people tell me I had not “lost” John he was still there and yet, the John we knew and loved was most defiantly not there anymore. Our son, the one who sang the Barney song and loved animals, was not there at all.
As I have joined groups of parents in the disability circle, I have learned two very real facts. One, there are stages of acceptance and there is no time line for how long you stay in one stage before you move to the next. A few times you move backward in your feelings. The second thing I learned, you will move on. You will cope, you will grow a thick skin and you will be happy again.
The five stages of grief are listed as denial, anger, bargaining, depression, ending with acceptance. When a child is born with a disability or develops one later in life, it is common to pass through these stages. Understanding what you are feeling when you are feeling it, can help you cope better with your feelings and thoughts. It can also help you cope with the overwhelming feelings that come in waves when you least expect it.
Denial is common and for some may last a few hours or months depending on the situation. A family who learned their baby daughter was not crawling and seemed to be loosing what skills she had, discovered she had Rett’s syndrome. For the Mom the first reaction was, “Not true, she is just find someone made a mistake in reading a lab report.” This was her stand for months, until the day she watched other children in the daycare walking and doing other things her daughter could not. It hit her only when she saw children six months younger than her daughter progressing. Minutes later she was hit with a wave of red hot anger.
We talked about her anger, something I knew well and understood. I wavered between bargaining and anger for over a year. I was angry because my bargaining with God went unheard, then I was angry because I felt like God didn’t care, so I went back to bargaining with God to get back in his favor. All long I was just in a stage of grief and unable to cope. When I finally broke, I allowed myself a time of depression, time to hurt for what we had lost. We lost both the dream of who we thought our son would be as he grew up and we lost the boy we knew. I had to deal with both issues before I could move on. As Mom and “fixer” of all things broken, I did not allow myself to dwell in depression long; I had to get busy accepting the challenge before me and move on.
Acceptance is a unique place. It does not mean you accept all things, but you accept were you are in life and know before you can move on; you have to understand where you are and what needs to be done. You can accept that your child is disabled without accepting the unknown reality of disability. This is a time of lets see where this takes us. You know you have accepted the situation the day you wake up and your first thoughts aren’t about disability, but about ability. When you look at your child and all you see is your child, not the disability end. It does happen, but for some it takes longer than for others.
I talked to a Dad who told me he truly feels like he dealt with all five stages of grief the day his daughter was born. In his words, “I was truly shocked to see the chromosome disorder in the delivery room, everyone was caught off guard. But in a matter of minutes I was holding her in my arms and I just said to myself, get over it, this is your beautiful and perfect daughter, love her, enjoy her, give her the best life has to offer.” As we spoke about Cate, he told me how he actually swelled with pride to know how rare her disorder is, in that proud parent kind of my child is one in ten million way. He went on to tell me that his only issue was just not knowing life expectancy or developmental issues that lie ahead. If I had something to accept, it was not knowing her outcome, he told me, but then again do we really know the outcome for any of our children?
It is important to understand that having a child will change your life forever. Having a special needs child will change you life as well, in more ways than you can imagine. Some of these changes will be difficult, while others will be blessings in disguise. Journaling will help you cope with the roller coaster of emotions you will feel over the years. Sometimes it’s fun to look back and read how far you and your child have come, other times it will be just too painful to remember the dark places. No matter what stage of dealing you are in today, know that others have had and share your feelings.
Find a kindred spirit to share your journey with. This person does not necessarily need to have a special needs child, but is a person willing to allow you to talk when you need someone. It helps if they share your values in life. I found it hard to speak about John to a close friend of mine who chose to abort her special needs child. I felt she did not value John as a person, and saw his disabilities as problems that were better dealt with by placing John in a home. I did better talking to a single friend who had never married or had children, but was the aunt to a child similar to John.
Most importantly make time for yourself. Rest, eat a real meal, take a long walk and recharge your batteries. The healthier you are, the saner you will be when it comes to coping with hard days and long nights. Life is full of surprises and it just might surprise you to discover, having a special needs child will offer you more fun and happy surprises than negative ones.