Just Out Of Reach

This may be a new record.  Two blogs in less than a week.  I am trying to squeeze this in before the girls get out of bed.  Mason just left for golf league and I am enjoying a cup of coffee and some quiet time before everyone else gets up for the day.  If I didn't treasure my sleep so much, I really should try to do this everyday.

This momma's heart is hurting a bit today.  This change in medications for the girlies is wreaking a little havoc.  So many blinking seizures,staring spells, too many violent seizures...I don't like what I am seeing.  I haven't been able to check yet today but, I am pretty sure the girls will have matching black eyes.  Luckily, Lauren's cut above her eye isn't near as bad as Lindsey's.  The brunt of her injury came below the eye near her cheek bone.  It's not like the big seizures have increased in numbers, they have increased in severity and are literally coming without warning.  We were at the gym last night and Lindsey most likely was over-stimulated and started to fall backwards in one.  I was right there and caught her before she went down.  We rested for a while and walked over to join the rest of the kids and while standing there watching, Lauren went down.  No over-exertion, no over-stimulation...just went down and I was a half second too late...  I can't tell you how frustrating it is to watch your child fall in a seizure and know that you weren't there in time.  I know I can't beat myself up about it but, it is hard not to.  I am their mother, protector.  I hate seizures.  I hate Dravet Syndrome.  I hate that taking my girls to do something that they absolutely love puts them at risk of injury due to their stupid seizures.  I hate that I have to sit here today and get these burdens off my chest so that I can dust myself off and do it all over again today.  But, that's the reality of this life and I have two choices...sit here and drown in my sorrows or suck it up, brush myself off and tackle this new day.  I choose the latter.

Tuesday Matt and I did an interview with KCCI regarding the new cannabis oil law.  I think it will be on next Monday night.  They interviewed a few of us families that could benefit from this new law.  We spent about 30 minutes with them and of course Lauren was having many blinking seizures during the whole interview.  I am thankful they are keeping this story in the news as our legislators need to know that this new law needs to be expanded upon.  Many of us that they were hoping to help will not benefit.  Also, just yesterday a gentleman in eastern Iowa who has stage 4 terminal cancer was found guilty for growing his own cannabis to extract oil  to treat his tumors.  I understand he was found guilty as he did break the law.  Unfortunately, he was not even able to share with the jury his medical need for it so they did not get to hear why he was growing it.  What I hate is that he was having great success treating his disease (it was stage 1 while on cannabis oil) and now he will die because it is illegal for him to do so.  It is time for Iowa to make it legal for all Iowans to use cannabis oil.  If it is good enough for my daughters' seizures, it is good enough for someone with cancer or other life-threatening and debilitating diseases.

On a positive note, my mom is slowly getting better.  We were unable to get some of her testing done due to her pain level so hopefully we can get it done soon.  Your continued prayers are definitely appreciated.  While you are at it, please pray for our girls.  I am hoping that once their bodies get used to all of the med changes going on things will settle down.  As of right now, I am having a hard time believing this new medication is going to be the magic one we have been waiting for.  I think the magic medicine we are waiting for sits just out of our reach...for now.