Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Sunday, March 23, 2008

Where I am has a name!

*please read my notes at the end of this article for an explanation.*

For some parents, the emotional strain is greater
February 20, 2008
Dr. Rachel Bryant

Mourning, that exquisite pain that comes with great loss, is typically described as having four stages. When a loved one dies, we can expect to experience shock, anger, depression and finally, acceptance.

Shock is usually experienced first, as our mind rushes to protect us from the onslaught of the pain that is coming. We might feel numb or as if we are on automatic pilot as we go through the motions of the day, barely feeling connected to the experience.

Anger and depression come next. They can be separate, intermingled, and moved about at very different paces and order as shock gives way to the full impact of the loss. Depression sets in when we come to the undeniable pain of the loss. It is the longest phase and encompasses the body of mourning as it means facing life without the person or experience that is gone to us.

Acceptance is the last and final stage although we don't necessarily reach this stage and stay there. We have good days and bad days, days where we think we are getting there and days with unexpected lingering tears, numbness and even anger. Ultimately, the goal is to get to the place of acceptance, and time is an ally in this goal.

Parents who have children with chronic conditions such as autism, central nervous system disorders or other developmental disorders that rob their children of "normal" childhood experiences have a unique and little talked about emotional challenge. For these parents, there is no finite moment as with a death, but rather many moments of loss at different stages of development where the loving parent sees the things their child will miss. Professionals who specialize in this area have coined the term "chronic sorrow." This does not mean that there is chronic depression about having a child with special needs. It does mean that there is a reality with which parents of special needs children have to contend. And as with mourning of any kind, it is distinctly personal, and one's own individual timing needs to be respected.

What makes this challenge different is that the mourning, or chronic sorrow, continues to emerge at various stages. There is no end point. All families have fantasies about the life of their family in general and the future of their children in particular. We hope our children will be smart, healthy, kind, and successful. We imagine their first days at school, their first play dates, their academic successes, participation in sports or the arts, always with the desire to watch their budding independence and increasing sense of competence. We also imagine other people seeing our children succeed, and our children basking in the reflection of smiles that come from close friends and admiring family members and teachers.

If a child has mild limitations, dreams may be altered to meet the specific needs of the child. But big dreams about their life and future are still attainable. This mourning can have direction and an end.

But what if those needs are profound? What if a child's needs require vigilance, therapists, special educators and doctors? What if a parent is exhausted daily from struggling to give of themselves to fill the gaps they feel in their child? And what if the gains in return are sometimes so small they are imperceptible? What then?

The intimate connection that a parent has with their child means that there is a daily awareness of their child's struggles. And when there is no road map, no sign post that says at year 5 you will be here, or at year 20 you will be there, how do you proceed? And when you're tired of hearing, "Just take it a day at a time," or have tried to explain to strangers why your child isn't behaving as expected, there can be a profound sorrow and isolation that makes you question your very worth.

My friend who has a child with autism, about whom I've written, tells me: "You know when it's hardest? When a friend comes over and their 4-year-old is doing simple things I don't know if my child ever will. That's when I have a bad day." Many strong marriages have ended because of this unique pain and the sometimes excruciating uncertainty of where this is all headed. Again, this does not mean that the parent does not experience the daily joys of their child whom they would not trade for the world, but rather that there is an underlying reality that requires attention as well.

If you are the parent of a special needs child who is struggling with fears, doubts, and sorrow, please understand that this is normal for the parent who simply loves their child. The chronic fatigue alone that often comes from parenting a high needs child can be debilitating. Realize that you are not alone. Consider seeking the support of a professional who works with special needs children or a support group. If your marriage is strained, talk with your spouse about getting some needed support. Acceptance here means understanding there is no endpoint, to the love or the struggles.

******When Angela was born, I didn't not mourn the loss of the typical baby I thought I was going to have. Being told Angela had Down Syndrome was actually more of an affirmation of the years leading up to her arrival. But the last year or so has been rough, to say the least. I think I'm just now getting to this stage....11 1/2 years down the road!!! Suddenly things are REALLY tough and I'm exhausted. Some of those "firsts" have never happened for Angela (like being invited to a sleep over, or the birthday party of a typical peer), and I'm just realizing it. I'm also able to kind of see where Angela is going to be as an adult, and it scares and saddens me at the same time.

"Chronic Sorrow" isn't something I've always felt, but it very accurately describes where I've been for the past 6 months or so. Strange that I'm just now at that point. It doesn't mean I don't love her. It doesn't mean I don't consider her a gift that we were given. It just means I'm missing some things, and it's hard some days to see that. But more than that, I think it helps others who haven't walked in my shoes, to understand what I cannot explain to them. Don't get me wrong. I don't see myself as being in a constant state of mourning, but I'm sure that I will probably pass in an out of this phase throughout my lifetime with Angela.


Kelley said...

I'm sure being aware that how you feel has a name can be comforting, unfortunately, that probably doesn't always help as much as you'd like it to. No one who has read your blog would ever have any doubt that you love Angela deeply and consider her a gift. On days when you're feeling that "sorrow" though, I hope it helps to know that you are a blessed child of God, who has a plan for your life and just think how much he thought of you to send you the very special gifts he has in your life - If He brings you to it~He'll bring you through it. I pray for you (even though I don't even know you - God does) - for Angela, your arm, Tyler - all of it. Just wanted you to know - someone read this. Peace and love to you for those days you have sorrow and for the days you have joy and all the days in between.

Kathie Brinkman said...