When things are busy, I’m quietly making my way through. When things are happening, I’m quietly reflecting. Until I get to boiling point. Then I’m not so quiet anymore. When I’m quiet, posts build up in my mind. Then I get to a point where I need to get it out and then…where to start? I usually post a picture. And I quietly contemplate what’s next.
So here it is.
My husband is in the kitchen making fudge that I cannot eat. Music for friends we don’t see is playing in the background. To say this past week was rough would be an understatement. It came after a week of visiting nurseries and preschools for disabled kids. Mostly.
First your son is born blue and gray. He’s not crying. There is no breath. There is no cuddle. You think that he could die. This thought never fully goes away. You always wonder or worry that something will go wrong, in the back of your mind. In the place you do not share with others. It’s there. You don’t believe it. But when your child almost dies, you can’t ever leave this thought behind. It is always with you. Even when he is healthy and happy and you are all together. It exists. Because he almost did.
Then your son lives in the hospital without you for days. 16 days. You create a routine you never imagined and it works. But every time you hear the beeps of those machines when you are in the hospital in the future (because you will be) for someone else, for some other reason, you remember your son being hooked up to those machines. Those wires. Those IV’s. It happened. You survived it. But it still happened.
Then you are told, maybe, probably, your child will have cerebral palsy. An image of a child in a wheel chair that can’t do anything flashes in your mind and you hold your husband close as you both cry out of fear and the unknown. But then you learn a bit more and you hold on to hope.
Then you learn, yes. Your son has cerebral palsy. So you order books from Amazon about cerebral palsy and you get ready to learn all about it. You read pages and pages on the internet. You find other moms with kids with cp, you join online groups and you accept it, your son has cerebral palsy.
Then your son has another MRI and you watch him struggle under the anesthesia into sleep. Afterwords you forget about it and go on holiday to see your family. When you come back to see the doctor you learn your son has dystonic cerebral palsy. So you put most of the books you bought on a shelf and never read them because this type of cp affects only 20% of people with cp. And there is a lot less info about it out there.
Then you find other families with kids with the same type of cp and you have hope for the future. And you find new friendships and support in wonderful women who know exactly what you feel so much of the time because they too have experienced it or something so close to it.
Then you find out and start new therapies of all kinds in many places and you do all that you can for your son and he is smiling and laughing and everything is good. Life is good.
Then. Just when you get into the cerebral palsy groove. Your son is diagnosed with epilepsy. And you think, ok, we can do this. He’s not having seizures yet. You monitor him closely. You sit with him while he sleeps so he gets enough sleep. You make sure you do everything to keep him from having seizures. And for months, he doesn’t have any seizures. You are hopeful.
Then he starts to have seizures. And you research more medicines. More side effects. And you watch your son change. You watch it become harder for him to do the things he was learning how to do and to have the energy to do it. And he still has seizures. So you change the medicine and you watch him get more tired. And more irritable. And he gets through it. And you get through it.
Then the seizures stop. You move to another country and things are going well. Until the seizures start again and you call your doctor and he tells you want to do. You do it and the seizures stop again. You watch your son sleep on the new video monitor that you never thought you would need. Just in case. Everything is smooth for a couple weeks until they start again.
This time, the doctor cannot help you because you are too far away. He cannot get you the medicine you need because you have to go to a doctor in your new country. But you don’t have one.
So you have to go to emergency. At a special hospital just for kids. And this time you think, really? REALLY? We have to do this? We have to start over. We have to get more doctors and more medicines and more needles and more blood drawn. And stay up all night and have more seizures because of over exhaustion. But it’s a good hospital. It’s a really good hospital. With good doctors. Doctors who get you in to see specialists faster than the Canadian health care wait lists allow. Doctors that get you medicine that will help the seizures stop. Hopefully.
Medicine that you didn’t want your son to take in the first place. Medicine that can make your son’s hair fall out. Make him feel dizzy or sad. Make his tummy hurt. Make his liver weak. Make it hard for him to do the things he was already learning to do because now he’s on two seizure medications. And do you know that seizure medication is also bi-polar medication? But it’s going to make his seizures stop. And you pray that those other things just don’t happen. Because then what?
Then what are you supposed to do? How are you supposed to hold it together when you feel like your son isn’t as happy as he used to be? But you have to make the seizures stop. So you do what the doctor says. And you hope. And you pray. A lot. All the time.
Then you have to use a program on the iPad to help your son learn how to communicate with you. And you think. Is this it? When does it stop? It doesn’t. It just keeps on going. And most of the time it’s ok. Everything is fine. You are all happy. And laughing. And living life as a family in Canada.
But sometimes. Sometimes.
It’s just too much.