When a child receives a complex medical diagnosis, it’s difficult to know the right thing to say to their parents. You want to be supportive and let them know you care. When my son was born with a rare syndrome, I found that a lot of the common words my loved ones used to encourage me, left me feeling guilty, inadequate and frustrated.
As the parent of a child with complex medical needs, I want to explain why some of the standard assurances don’t sit well with me. While I do not speak for all parents in this community, I have seen many of my feelings echoed in magazine articles, on personal blogs and in online parent support groups.
As a person who has used all of these common words of encouragement, I’d like to share my perspective now that they are being said to me. Here are some of the well-intentioned words of comfort I would prefer not to hear when being spoken to about my son.
Please don’t say: God doesn’t give you more than you can handle.
Full confession: Some days I can’t handle it. Some days the stress of my son’s impending surgery is so intense that I hide in my closet and sob into a glass of wine. Some days the thought of him being teased at the playground is so painful that we don’t leave the house.
And on those days when I am not handling things very well, it does feel like God gave me more than I can handle. I know in my heart that friends and family tell me this to offer comfort and to make me feel like I can get through the hard stuff. I appreciate the kindness of this thought, but my reality doesn’t reflect this sentiment. And I need it to be okay for me to fall apart without feeling like I am failing God.
Please don’t say: God gives special children to special parents.
I realize that when loved ones have said this to me, they are trying to build me up and offer me comfort. You will never hear me argue with someone that tells me that God gave me a special child. I’m good with that part of this sentiment. But to suggest I am somehow specially equipped to have a medically complex child is just not true.
When my son was born, I spent months scouring the internet, searching for commonalities amongst the parents of children with my son’s syndrome. I thought I might find we all possessed some unique quality that others didn’t. I soon came to realize that the only thing we all have in common is our children. We have different professions, talents and upbringings. The other parents I have encountered are amazing, but we don’t all possess some special power that made us more able to handle a medically-complex child than the rest of the world.
Please don’t say: When will he/she be fixed?
I think it’s human nature to want to resolve problems, so often people ask me when everything will be over for my son. The truth is, my son will probably never be without special medical needs and he will never look like the majority of people in this world.
For the first six months of my son’s life I was guilty of wanting him to be fixed as well. Then, I realized I needed to stop thinking of him as broken and to start thinking of him as a whole, beautiful person who has medical needs that we will tend to as they arise.
When someone alludes to my son being fixed one day, it hurts because I feel they see my child as broken and I just see a perfect little boy.
Please don’t say: I couldn’t do it.
A few months after my son was born, I was explaining my son’s medical needs to a friend when she said, “I couldn’t do it.”
In my head I thought, “I can’t do it either.”
At the time, I had been thinking constantly about how I was going to be able to guide my son through the journey that lay ahead. There were times I worried I wouldn’t be capable.
But here’s the thing: I am doing it. My friend could do it. You could do it. Anyone that loves their child could and would do everything in their power to give them the best life possible.
Please don’t say: Anything that implies it was my fault.
Unfortunately, a few things have been said to me over the last few years that implied I caused my son to have a syndrome. My son’s syndrome is a result of a spontaneous genetic mutation, so we do not know why it happened. I see my son as an amazing product of my husband’s and my DNA, so please tread carefully around this subject.
Please don’t say: You are brave.
Honestly, I’m not sure other parents with medically complex kids have a problem being told they are brave. Personally, I wish that when a friend tells me I am “brave” that I could take it for the compliment I know it’s meant to be. But in reality, it makes me feel inadequate, as if I am failing my son for not possessing this quality.
While many parents with medically complex children may be inherently fearless, I have never been a brave person. My whole life I have been an anxious person who avoids adversity. I didn’t become a different person when I gave birth to a child with a syndrome. I am still the same fearful girl today that I was before my son’s diagnosis.
Also, being called “brave” implies I have choices in the medical and social situations that I guide my son through. I am just a parent who was given a child with differences that have to be addressed. I didn’t choose the harder path, it just happened.
I make it through my son’s surgeries and bullying not because I am “brave,” but because it’s what I have to do to give him the best life possible. There is no other option.
I am not sharing this blog post with the intention of making others feel bad.
I want to be open about the struggles I face, and how words expressed with the sincerest intent can still hurt.
After reading this you may think, “Great. Due to this over-sensitive, jerky mom, I have nothing left to say. I guess I will just say nothing.”
I promise, parents of medically complex children want you to talk to them.
This blog post is meant to help give people a jumping off point on how to approach conversations with parents of medically-complex children.
I will follow-up soon with a post about things I would love to hear people say.
Featured Image Photography: Lauren Samuels Photography