Originally written by Dr. Katinka van der Merwe on The Spero Clinic blog. Reposted with permission for the RSDSA blog.
To Parents of Children with CRPS –
I want to acknowledge one of the groups of people affected by CRPS the most—: parents of children with CRPS. It doesn’t matter if your baby is two years old or fifty-three. As a mother myself, I think the only pain worse than CRPS is watching your child suffer from it.
My phone calls with you, brave parents, both horrify me and inspire me. You tell me stories of endless suffering. Stories of your daughter missing her prom, and of your son never being able to walk on to a baseball field. Stories of your children crawling instead of walking, and of their days in bed, as you watch their friends play sports, go to school, date, and move on to college. At night you worry about their future. Will they find love, careers, and have babies? Who will watch over them when you are gone? Your lives are not understood well except by other CRPS parents. Your misery is an island, unfathomable by most.
How can anyone understand what it feels like to watch your child burn alive every day?
You give me your children’s medical history in a matter-of-fact way with military precision, which tells me you’ve done it a hundred times before. You don’t want my pity. You’ve put up a wall that rejects pity like a dam wall holds in water, for if this wall should crack, your sorrow may drown you. You cannot afford to drown. You are fighting for your child, and you can’t, won’t, give up. You will spend every penny you have fighting, because this is your baby. You were charged with protecting them.
My God, do I admire you. You did not choose this, I know, but you are surviving it day by difficult day. You are the pillar that your child leans against, and you stand strong so they can do so. I admire every part of what you do with every part of me. You are the reason I know that this is the most important thing I will ever do in my career.
As a parent, I cannot imagine a more horrific hand to be dealt by life than to be forced to stand by helplessly while your child suffers from daily, unimaginable pain. Please allow me to say that my heart goes out to you. I cannot imagine anything more difficult. As a parent, we want only what is best for our children. It is our job to protect them. We do everything in our power to make sure that our children are safe, happy and protected. However, sometimes, life will present them with circumstances beyond our control and our sheer willpower. CRPS is one of those circumstances.
As a parent of a child who suffers daily, you have only one true choice: You must become an asset to your child.
This will require incredible strength and willpower, sometimes under very difficult circumstances. While it is normal to want to scream at the heavens “‘why?!”’ at the top of your lungs, it won’t ultimately change a thing. CRPS cannot be kissed away by a parent’s love.
However, by becoming steadfast and informed, you will be a strong pillar for your child that they may hold on to during the worst of storms.
While your child will need to cry on your shoulder sometimes, you cannot allow yourself to collapse into a puddle of pity at those times. Your child needs to feel secure in a world that is made very insecure by the very nature of CRPS. They will look to you for strength when they are in pain, doubtful, in a state of self- pity, angry, and scared. You will be their constant port in a storm they cannot control. Yes, love them always. Cradle them always.
However, you must understand that your child needs you to fight for them. They need for you to be strong when they can’t be. While it is important to be able to be honest with your child, you need to hold on to your strength so that your child never has to see you fall apart.
Children who deal with daily chronic pain feel acute guilt because of the effect that their condition has on the entire family. It is very important that you tell your child that even though they are not physically perfect as far as their health is concerned, that this does not change how much their sheer existence contributes to your life, as well as that of the rest of the family. They have to know that they still matter in many meaningful ways. This is where counseling becomes incredibly valuable, not only for them, but also for your marriage or relationship, as well as your relationship with your child’s siblings. While your family will face more obstacles than most, these obstacles can be overcome and at the end of the day, leave your family stronger than before.
I know you can do this. Do you know why? Your child chose you. They were born into this world through you. Their souls saw strength in you that therefore must exist.
They picked you to be their parent, and in that choice bestowed an incredible privilege upon you.
“Your children are not your children. They are the sons and daughters of Life’s longing for itself. They come through you but not from you. And though they are with you, yet they belong not to you.”
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