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To Say or Not To Say

I am the mother of a child with severe special needs. Our daughter was healthy until the moment of birth when a lack of oxygen resulted in a significant and complicated brain insult changing the course of our lives forever. For the last seven and a half years, my husband and I have been travelling in unchartered waters. We do not have the luxury of going into a bookstore and purchasing a book on child development or a book from the “What to Expect…” series. Even the countless specialists who have been a part of our lives since her birth scratch their heads in bewilderment and are often perplexed by the unexpected and unexplainable. There are few parents like us. Yes, there are many parents who have children with special needs but we have an additional badge that we wear. We are a part of Roger’s House in Ottawa, Ontario, Canada, which is the only pediatric palliative care home in Ontario. This is where children like ours can go for respite care, for transitional care after surgery and finally for end of life care. Rogers House is an amazing place but a place that no parent ever wants to find themselves. If you are a part of Roger’s House, it is because your child has a life limiting condition or illness and therefore a short life expectancy.

At a recent parent meeting at Roger’s House, the handful of parents in attendance shared some laughs and frustrations about the numerous comments we hear on a regular basis. While we recognize that the majority of these comments are made with good intention, many comments have obviously not been thought through. I wish to share some of the more popular comments with hopes that I might shed some light on why sometimes it is better to say nothing at all. Clearly, all comments come from a good place and I understand that.

1) “God only gives these special children to special moms.”

I suppose the intention of this comment is to make me feel honoured about being a mother of a child with special needs. The reality is that many children like ours end up in foster care because the parents were unable to care for them. Although I understand why someone would think it is a good idea to say this to a parent like me, I will tell you that in most cases it isn’t comforting.

2) “You’re so strong. I don’t know how you do it.”

I suppose I am strong but I also feel like I have been given too much sometimes. This comment, like comment #1, suggests that by being a good, decent and strong person, you get to deal with having a medically fragile child and all that entails. People like to think that they are protected from these things in some way but the fact is my husband and I do not have a choice. We are parents of this child and so we love and care for her like other parents do of their children.

3) “I guess you can always try again.”

The message that I got from this one, which was said to us many times after our daughter was born, is that maybe next time we would get it “right” and have a baby that isn’t broken.

4) “So are you going to have any more children?”

I was always surprised when asked this question especially by those who were not close friends or family members. Not only is it a very personal question but they never considered the fact that we might be grieving the loss of not being able to have any more children due to the care involved with a child with extremely high needs. The reality is that even if we wanted to have more children, this is not a possibility anymore.

5) “What is wrong with her?”

In our eyes, absolutely nothing. Our daughter, with all of her disabilities and complexities, is a bright and incredible child. She has been the greatest teacher in my life. Who would have thought that so much wisdom could radiate from a 30 pound, 3.5 foot little girl? We appreciate when people ask questions as opposed to staring or making assumptions. There are many opportunities for education and we welcome questions. We prefer that we are asked what our daughter’s condition is or what her needs are as opposed to what is wrong with her.

6) “God only gives you what you can handle.”

This is one of those very well intentioned comments that people make to me on a regular basis. I have learned that some days we are given more than we can handle but that by reaching out and accepting the support and help from our families, friends, relief workers, therapists, physicians and community, we are able to cope with the ups and downs of our unexpected outcome. I suspect God doesn’t spend His time watching from above and wondering if maybe I can handle just a bit more, just enough to have me teetering on the edge of madness. The God I believe in doesn’t operate like that. I suspect God carries me sometimes when the going gets really tough.

7) “This will make you stronger.”

To which I reply, “For what, exactly?” What in the world do I need such immense strength and resilience for? Again, this is not comforting nor helpful.

It is okay to not know what to say. If you find yourself in that position whether it be in the presence of a parent of a child with special needs, a friend or family member who has experienced a tragedy or a death of a loved one or any other situation that is traditionally uncomfortable, it is acceptable to just say, “There are no words. I don’t know what to say.” We have to meet people where they are. Telling someone that God has a plan immediately following the sudden death of a loved one, for example, is not helpful. Perhaps it is true but we must allow people to reach a place of wisdom, acceptance and understanding at their own pace if at all. Be aware of the impact of the words you speak. Sometimes it is more effective and helpful to say nothing at all.

Originally Published in the Whitewater Cobden Sun newspaper June 2011