Sunday, March 22, 2015

8 Weeks on Weed

Tomorrow marks 8 weeks of Julia taking medical marijuana for epilepsy.

Julia Anne aka "Jules"
8 weeks on weed!

So far we feel she is doing awesome!

I've written previously about our decision to start medical marijuana - which was primarily driven by our concern for what seven years of pharmaceuticals were doing to Julia's little body. In the 8 weeks she's been taking Haleigh's Hope we were able to wean her off of all other medications. So, for about six weeks she's only been taking marijuana, nothing else, and while it is still pretty new and her dose is fairly low, we think we are seeing a really promising response.

(Side note: Some people have suggested to me that I not call it marijuana, that calling it something else would help people who are against it to be more supportive. But no, I'm not going to do that. I'm just going to call it marijuana. Partly because it's easier for me, but mostly because that's what it is and my whole point is that we shouldn't have to cover anything up or package it a certain way for the comfort of others. Reasonable people don't care if I call it marijuana, they don't care what I call it, they care that it is working, period!)

So, Julia has been doing really well overall!  In the past two weeks she had a few seizures - two were very clearly linked to her having the flu. She had a high fever and was throwing up all the medicine we were trying to give her to reduce her fever and so it made sense to us why she had the seizures and I honestly think she would have had them even if we had still been on Keppra.

She had another seizure last week in speech therapy which we actually believe may have been stress induced.  This is new for her and I think perhaps in the past Keppra might have been keeping this type of seizure at bay - I really don't know, I'm guessing. But bottom line, I don't necessarily view this as a negative because what we are seeing is a less doped version of Julia (ironic?) and perhaps as a result we are learning about some of her triggers we weren't aware of previously because the medication was dulling her response to life. So now we have a girl who is more in tune to her environment and we are, as a result, more aware of the risk that can come with her getting overly stressed. We may go up on marijuana at some point to increase the threshold of keeping this type of seizure away, but we can also do a lot on our own to try to minimize environmental stressors for her without just automatically going up, up, up on more and more meds.

At this point in our journey with epilepsy I feel like we have a healthy understanding of our situation. We know that because Julia was created with a uniquely formed brain she is always going to be at risk for seizures. There will never be a "cured from epilepsy" day for us this side of heaven. Even if the Lord blesses us with long stretches without seizures, like He has in the past, seizures will always be on our minds. It's not a lack of faith, it's a realistic understanding of our situation. And it is okay! We will keep trying our best to find that balance, that sweet spot, between enough medication to keep seizures away and as little medication as possible so that we can know Julia as best as possible! It's going to be our lifelong challenge.  And we are happy to do it because she is so very worth it!

And so for now we believe we are gaining some ground in our challenge! Since starting medical marijuana (and getting off of Keppra) Julia's agitation has decreased quite a bit. She has attempted some new communication strategies which have been exciting to experience, and she has been very attentive and in-tune to the people around her. For example, today we visited with friends who have a 1 year old. Several times I caught Julia stealing sideways glances at little Rosie. She shared her iPad (sort of) and when  Rose gently grabbed for Julia's hair Julia did not freak out at all, she just moved a little to the side and continued watching Veggie Tales! These are all really big developmental steps for Jules! Another example of this progress; last week we went to visit the four week old puppy we are getting for Julia and during our visit she let the puppy put his paw on her hand.  Seriously, the puppy put HIS PAW on HER HAND and she allowed it!!!!!  I cannot over emphasize the enormity of this type of development. The girl is getting the chance to be comfortable in her own skin and it is glorious to witness!
Julia and Macaroni aka "Mac"

In the past eight weeks our story has been shared and we have received so much support for which we are very grateful! (And some constructive feedback as mentioned above, but mostly support.) One supporter repeatedly encouraged us not to give up! Don't give up! Don't give up! I found this to be so sweet and I love the encouragement, but it was also a little confusing because we have absolutely no intention of giving up! We are thrilled by what we have seen so far and this is only the beginning. We have so much hope for what is ahead with Jules taking marijuana. If anything we are more determined than ever to spread the word about how this is working for our family in hopes that more families will get the chance to try it. More families, in their own home state or country, without having to disrupt their lives, leave their people and become medical refugees in Colorado, will be able to give their loved one this chance at life with fewer seizures - we can do this!

Please get involved, please spread the word, please help us legalize medical marijuana on the federal level so our friends can return home and we can go to the beach!  Thank you!

#legalize #cannabisismedicine #marijuanaismedicine #legalizemedicalmarijuana #haleighshope #illegallycured

Wednesday, March 4, 2015

If A=B and B=C

I'm not the first parent of a child with special needs to write about ending the R-word.

I've seen many beautiful, touching and vulnerable posts from parents and loved ones of a person with special needs appealing to the world to stop using such a hurtful word. Almost every one of these appeals brings me to tears because I love these people and I know the pain they are talking about, the pain this word causes.

The other thing that nearly brings me to tears is that undoubtedly there are people who continue to defend their use of this word even after hearing our pleas. People who don't care about the personal stories being shared, who refuse to hear that for some of us this word truly does bring pain, people who continue to defiantly use this word with pride. 

I've never experienced the type of attachment to a word these people apparently have for the R-word. It baffles me. It saddens me. It infuriates me.

So, because of people like that, I am NOT going to write a heart wrenching plea to the world about the R-word.  I am NOT going to tell you about my amazing daughter and how using the R-word perpetuates a negative stereotype about the most beautiful and vulnerable people among us.  Nope, I am NOT going to do it.

Instead, I am going to SHOW you how using the R-word is lousy using basic math. 
That's right, I'm not going to do anything, math is going to do the work for me.

The transitive property of equality (sounds fancy but it's not, I'm not that good at math) tells us that:

If: A=B and B=C, then A=C.   

There you go! That's it. Math just showed us why we should not use the R-word.

 Let me explain further in case you aren't following. 

For this particular equation:

A= A Person with Special Needs
B= the word Retarded
C= bad, stupid, dumb, messed up, mistake, undesirable, etc...

Soooo, according to the transitive property of equality (I like saying that, it makes me feel smart):

(A) A person with special needs = (B) Retarded (I know some will argue this isn't used anymore, but the whole point of this equation is that this WAS at one time the meaning of this word)

(B) Retarded =  (C) bad, stupid, mistake, undesirable, etc... (how it is most often used now days)

(A) A person with special needs = (C) bad, stupid, mistake, undesirable, etc.... 

Is this making sense?

Here is a picture for visual learners:

See how that works? See what math is saying to us?

It is not ME asking you not to use the R-word because it insults people with special needs, it is math showing you how using the R-word insults people with special needs. 

It doesn't really matter if you continue to think using the R-word is okay, because math is telling you it's not. Math is telling it is kind of a crummy thing to keep doing.

And it doesn't really matter if you claim you didn't "mean it" like that, because the transitive property of equality is math, it doesn't care about what you mean! 
It exists outside of intent.   

Math can be brutal right?!?!

A cool thing about this equation is it can be used for other terms as well, not just the R-word! I made this handy table to you show you what I mean, I'm helpful like that, I want math to make sense for all!

If A=B
And B=C
Then A=C
If a person with special needs =
And if Retarded                         =
Bad, stupid, mistake, etc.
Then a person with special needs 
Bad, stupid, mistake, etc
If a person who is homosexual =
And if Gay                               
Bad, stupid, mistake, etc.
Then a person who is homosexual =
Bad, stupid, mistake, etc
If a person who cannot walk   =
And if Lame
Bad, stupid, mistake, etc.
Then a person who cannot walk 
Bad, stupid, mistake, etc

I hope this is making sense now... I find examples and tables to be very helpful. 

So what have we learned from our math lesson today? 

Well, we've learned that if A=B and B=C then A=C 
and we've also learned that
If you keep using the R-word after reading this blog, then you are a douchebag!  

Plug that into the table above and see how it works out. Thank you!

#spreadthewordtoendtheword #rword #respect