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Mom's health continues to decline. ALS is a very cruel disease and I despise it as much or even more than I despise seizures. When you see your mom, the strongest woman you know, being taken from you by the relentless beast that is ALS, it breaks your heart into a million pieces. It's unfair and I wish to God I knew why she has to suffer with this horrible disease. She is my rock. She is wise, so very wise. She isn't afraid to speak her mind and stand up for herself and those she knows and loves. She is strong and has faced every adversity in life head on. She is so patient. She loves unconditionally. She is as beautiful on the inside as she is on the outside and I am so very blessed to call her Mom. Please pray for Mom and Dad and our entire family as we go down this path in life. God has a plan...yeah I know I have heard it all before. I'm angry and I am broken. They say "what doesn't kill you makes you stronger." Well you know what? I am tired of being strong. I am strong enough, thank you.
The girls are plugging along. I would like to say their seizures are better but, they are not. The blinks and small seizures are in the hundreds per day. Lindsey has had a particularly rough couple of weeks with 8 generalized "large" seizures in one week. Lauren has been holding steady with 1-2 per week. They are at the grand age where hormones are flaring up so, we are trying to find a pattern. We weaned them completely off of one drug. We have tweaked two of their three drugs that had a little bit of wiggle room. We are now maxed out on three drugs. Our list of failed seizure medications sits at a dozen...and our last hope of cannabis oil sits just out of reach. We follow up with our Neurologist in two weeks. We were hoping some of the emotional outbursts would go away by getting rid of one drug...yeah, that didn't happen. I guess those fits of rage are not only drug side-effects but also a part of the Dravet Syndrome curse and those stinking hormones. Luckily the good days outweigh the bad as far as outbursts so we are thankful for that! They are still lovey dovey "most" of the time. They seem to be able to voice their opinions better as of late. Lauren told me just the other day, "You need to learn how to stop telling me what to do." I couldn't help but to look at her and smile because I was so impressed that she had just told me off so eloquently. Then, I nicely explained to her that we don't' speak to people that way, especially her mother.
Last week we said "see you later" to our beloved respite provider, Jewel. Jewel has been with us for over 5 years! She has become an addition to our family and we are going to miss her while she is embarking on a 6 month adventure in New Zealand. We will see her again in person in July but, will keep in touch through our iPads. Thank goodness for technology! We love you, Jewel.
As you know the 2015 legislative session just kicked off. I need to get busy and lose the "winter 10" so I can put on the dress clothes and travel to the Capitol again. Time to advocate for medicine for my girls and many other suffering Iowans. It should be an interesting year. Don't forget, you can help us by contacting your legislators and asking for their support for expansion of the ineffective cannabidiol law. If you do not know who your legislators are, you can click below. You can show up at their coffees on the weekends and bring up the issue. Public awareness and support is growing and we need our families and friends to help us with this issue. We have educated many legislators but, have many more to educate and get out of the 70's way of thinking. Cannabis is medicine. Thanks in advance for your help.
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Thanks for traveling this bumpy road called life with us. Looking forward to the day we all walk the streets of gold.
Kim
