~seizure FREE me~

~seizure FREE me~

Monday, March 21, 2011

Every mother has a little bit of warrior tucked deep inside...

Just finished Mother Warriors by Jenny McCarthy, amazing book, the last story about the little boy with seizures that ended up dying made be bawl! I don't understand why some people refuse to acknowledge that there are children being healed from Autism or seizure disorders through alternative means. {diet, supplements, biomedical interventions, etc...} There are many moms out there {me included} who have living proof... I had to fight every step of the way to heal my son, why is that? I had to suggest the diet to my doctors, plead my case, and watch him suffer through one medicine after another before we started on the diet. Why didn't they suggest the diet to me? It's a diet, it has a lot less side effects then the medicine, some of which have never been tested on children. It makes me angry. It makes me want to do something to get some change happening, get people talking.

What can I do?

I want to spread the word, help other mothers faced with the seemingly impossible. My son was diagnosis with intractable seizures. The out look was gloom at best. Brain surgery was being tossed out there into the open air, mentioned more and more. Brain surgery! My heart breaks for other mothers who didn't know that their child could be healed by a diet and went through brain surgery for their child. I am aware that it's not a one size fits all sort of a thing. I am always saying that nothing, absolutely nothing is one size fits all. I know that the diet hasn't worked for everyone who has tried it for one reason or another. But it has worked for many. And it could work for many more if more parents knew about it. If it was talked about in doctors offices. Not just because the parents brought it up but because the doctor is giving them another option to try. A way to heal. Seizure medicine stops seizures for some, but it's not healing. It's suppressing. It comes with a lot of side effects that the child {and family} then has to live with. I wanted to heal my son. Many, many moms want to heal their children. They just don't know how, or when they do come up with ideas they are shot down by the medical community and others. They second guess their intuition. It's an absolute shame. So many mother's voices going unheard. So many parents being turned away, shamed and humiliated for speaking the truth and wanting to heal their child. What is the big deal about thinking outside the box, taking the blinders off, and witnessing things you never thought possible?

Some times it just takes a voice or two to change a persons life. For me it was a women, a fellow mother herself and a stranger to me, mentioning the Ketogenic diet in an elevator at Children's hospital. And then my mother soon after mentioning it to me again over the phone when I was at the point of desperation. Those two women were the voice that caused the change for my son.
They could have held back worried about over stepping boundaries, saying too much or looking odd, but they didn't. Their voice planted the seed for me. I want to do that for someone else. I want to pay it forward. We need big change, and we need our voices heard.

The last chapter in her book is titled A Mother Warrior is... it is beautifully written heartfelt thoughts of encouragement for all mothers out there who feel unheard and often unsupported. I read it a few times over, and tucked it away in my heart. After reading it I now realize I share the title Mother Warrior with some amazing women!

MOTHER WARRIORS! Just saying that gives me the strength to keep going.

Monday, March 14, 2011

A first...

This past Sunday you went to Sunday school and stayed in the big kid room the whole time! This may not seem like a big deal to some but for you this was a major event. We've only tried this one other time since your seizures stopped and you only lasted about ten minutes. Because you also have sensory issues, little things can set you off (at least they seem little to others, and have been hard for me to understand at times). You generally have a really hard time with with transitions and commotion. When you were little we stopped going to church because you wouldn't stay in the baby or toddler rooms the numerous times we tried and you would absolutely melt down during the singing/music portion in church with us (Nor would you sit still for the sermon). It was a night mare. You have come so far and matured so much it shocks me some times. I think I had a harder time being separated from you then you did. Not that you would have know because I kept my game face on (as we call it in our home). I had a hard time focusing, I was so worried and was checking my phone for the expected text the whole time. I had a hard time keeping my mind from wandering into fear. At the very end of the sermon when the music starts they always bring the kids over to sit with their parents. I was worried that the music would set you off so I waited by the door to hold you, sure that I would have to. You walked through the doors with a big smile on your face and put your little hand in mind. You followed me to where daddy was sitting with sister and sat on my lap listening to the music, and even dancing! I'll admit tears were streaming down my face. I never thought I'd see the day. Loud music has always been a trigger for you. But not this time. I was totally overwhelmed. Since your seizures started we have never left you with any one but very close friends and family and always at our house. You have never spent that amount of time away from me in that sort of situation before. Of course you had your wonderful, protective heroes {brothers} with you. A team for ever, brother to the end. The fact that you guys are such a team is what helped in this situation because you hated having to stay home with daddy while your brothers when to Sunday school... we did this a few times in a row and then you were ready to try your hardest to stay in the big kid room, just so that you could be with your brothers. That was the key, the team building has paid off. :) I hope that you have now been able to see how fun it can be and how proud you made your parents. My fingers are crossed that next Sunday will go just as well.

It's hard letting go, it's hard trusting that everything will be okay even though I'm not there watching over every little thing. It's hard trusting the people caring for you will truly understand how important it is for you to stay on your diet. How you absolutely can not get your hands on any food not allowed on your diet. Seizure triggers. We have worked so hard with this diet and getting him seizure free that it would be heart breaking for him to have to suffer another seizure just because someone wasn't watching close enough. A big part of me doesn't like putting that burden on another person. I try to make it as simple as possible, bringing his own snacks, explaining his diet and the importance of it in simple and to the point form, giving everyone who watches him his seizure care plan from the hospital, and generally planning ahead for success. I am that mom with Atty, the seemingly over protective, pestering, have to do AB and C with my kid sort of mom. But I don't care and I won't make apologies. Although it does embarrass me some times I will admit. We normally don't like to cause a fuss as a family, we are quiet and try to be easy going. But it is what it is. It has almost been a year of you being seizure free, on the 26th of May was your first seizure free day last year. This is possible because of your diet. Your magic diet.

I am realizing that I am steadily changing my mind set. The fear is subsiding. We went to the park the other day and I didn't think about his seizures even once! I didn't realize this until I looked at the pictures I took of him climbing all over the place, up ladders, across bridges, down big tunnel slides. He was playing with a freedom he hasn't experience since his seizures started. I was not hovering, or telling him he couldn't climb that high or go on that certain toy. He wasn't wearing a helmet, or holding a hand. He was truly free to play at will with his brothers and it was a beautiful thing. I was also a beautiful thing that I did not worry and stress the whole time. I have slowly been letting go little by little and trusting in his magic diet and the fact that he has not had a single seizure in 10 months! Even with being weaned down to only one seizure medicine. {Hopefully we will soon be going down on that one as well...} From trying 6 different medicines and being on three at once at one time, to being on one medicine and a magic diet. It's been quite a ride!