Cerebral Palsy, Epilepsy, Family, Health, Our Son, Parenthood, Seizures, Toronto

Starting Point

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.

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13 thoughts on “Starting Point”

  1. Kara. I don’t really know what to say other than we love you and Seb so much and my heart really aches reading this post, it aches for you and Seb and also for myself and Coops. I am really so sorry anyone has to deal with this shit. Thinking of you xx

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  2. Oh Kara I am so sorry that your sunshine boy is having to battle the seizure monster, I know how you feel, it sure doesn’t feel fair. You and seb are strong, you will get through this too, and you’ll come out the other side stronger. If there’s anything at all I can do please let me know. I will pray that he destroys the seizure monster and returns to being mr happygolucky. Hang in there, and don’t give up the faith!

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  3. I can relate all too well. Our daughter was dx as epileptic as well just after her cp dx. Her neuro is baffled that she has yet to seize and on no meds thus far. Baffled. So that leaves me waiting, just waiting, every damn day, for one of them to pay us a visit. It’s consuming on so many levels. I feel for you and your struggles… your son is beautiful.

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  4. Kara, I have just read this piece three times. It deserves to be read over and over again. Your words are so poignant and powerful and I know they have come straight from your heart. I hope putting it into words has helped just a little.

    My heart goes out to you. It’s just not fair. Any of it :-(.

    But Seb is a star and he has the most amazing parents. You WILL find the right meds for the seizures and then fingers, toes and all else crossed that they will go away all together.

    And if you want ANY HELP at all with programming the iPad (I am assuming it’s the P2Go?) please just ask. I am more than happy to share what I’ve learnt.

    Biggest hugs from me in Melbourne xoxo

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  5. Kara, I have read this a few times now and cried. I do not even know the right words to say. I cannot in a million years know what you go through on a daily basis. The fear and the happiness all consumed in one daily bundle. It isn’t fair and there is nothing else to say. All babies are miracles and Seb is a daily miracle. The day that Alex entered our life and I waited to see if she would be okay and ran tests to make sure she was initially okay and I still wait to see if she’ll have any long-term effects from her birth mothers life. Keep writing and continue to reach down for that strength that I know some days you don’t think you have. And when you need more strength just reach out to us and we will try and carry you through the day. Hugs from Utah

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  6. Wonderful post, Kara. Maybe wonderful is a weird way to describe it, but reading it was a great release for me, because this is how I’ve been feeling (without the moving to a different country part).

    I understand the idea of contemplating about blog posts until there is so much built up it is impossible to start. That’s where I am with my blog. I can’t bring myself to “talk” about Fletcher’s epilepsy dx. Because, like you, I was finally in a good-ish place with the CP, and then bam. He went from having one seizure to the doc reading his EEG and saying that he is going to have intractable seizures for the rest of his life, possibly multiple ones on a daily basis. How do you deal with that? How do you ever exhale when you face a life of medicine merry-go-rounds and one eye always on that monitor (or in our case, we just have F sleep in our bed, which also is not an ideal solution).

    I wish I had words of encouragement, but all I can do is commiserate. And pray along with you.

    {{Hugs}}

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  7. Kara, I read your blog post with tears in my eyes. You are an awesome person and Seb is blessed to have you as his mother. He is going to be an awesome person he can because of you and your husband’s love and devotion to him. I know the days get hard but you are resilient and you will get through them all, but do know there are many people that think you and your family often and pray for health and wellness for Seb. Laura

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  8. Thank you for reading this post over and over. I too read it over and over and cried harder each time. But when I had read it the last time and then posted, I felt freer from these feelings and the pain. Which is why I should write more often! Thank you for your thoughts, prayers, love and hugs. I wrote this post with ‘you’ because I know that we are not the only ones experiencing these challenges and more. Thank you for being a part of our lives.

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