The Signature, The Senior and The Swimming Pool

Above you will see our two pens that Governor Branstad used to sign the Cannabidiol Bill into law last Friday.  It was a blessing to watch the Governor place these pens into the hands of the children who can possibly be helped by this new law.  It was a blessed day to be surrounded by so many families of children with intractable epilepsy and the legislators that made this new law possible.  In a sense, we have all become one very large family and I am glad to have met many new friends during this journey.  There are many moms who I have great respect for and think of as my own seizsters.  They hold a special place in my heart and it is my sincere hope that one day we will all be standing together again with children who no longer suffer from intractable epilepsy.

Unfortunately, this limited de-crim bill will not make that dream a reality for us right now.  Many of us will not be able to have access to cannabidiol under this new law.  Although this was a great first step for Iowa, it is just a baby step that needs to be expanded upon.  With the restrictions placed on this bill, many families will not even have the opportunity to pursue this medical treatment because they do not have an Iowa Neurologist or if they do have one, they are not willing to refer them for treatment.  Many of us with complicated children must seek treatment out of state from Neurologists who are experts in the field.  Unfortunately, under this new law, out of state Neurologists cannot refer Iowa patients.  If a family is blessed enough to have an Iowa physician to refer them, their next hurdle is finding a state with a medical cannabis program that allows out of state medical card holders to purchase cannabidiol.   The numbers are few and none are bordering Iowa. Or, they must travel to Colorado or Washington to purchase it recreationally, which restricts the amount they can purchase daily.  That brings along another hurdle, traveling with cannabidiol in states that it is not legal to do so and facing criminal charges.  The demand is greater than the supply and many families will need to be placed on waiting lists to get access.  The cost is expensive and dispensaries only accept cash.  Factor in this the time it will take to travel to these states and back home again.  As you can see, the process is going to be a tough one but, some families have run out of options and are willing and able to go through this process to try and help their children.  Although we are desperate to help our girls, we are not able to seek this treatment right now.  I am anxious to hear how families will be able to access this medicine and I hope to hear great stories of how it works for them. What we will do though, is stand together again with all of the above mentioned parents and legislators and fight for a medical cannabis program in Iowa that will allow access IN our state.  This can be done through a strictly run program that will allow treatment for not only persons with intractable epilepsy but, all of those suffering with life-altering and life-threatening diseases.  Just like 22 other states have already done.  It is going to be a huge uphill battle but, we have proven when you work hard and never give up, minds can be changed and progress can be made.  Our kids are worth fighting for and so are many other Iowans who are facing huge medical challenges.  If you have a loved one who could benefit from medical cannabis, I ask you to join us in our fight. If you don't, I ask you to join us for our girls.  They all deserve a chance at a better quality of life.  I know some of you are totally against medical cannabis and that is fine.  I just ask you to ask yourself; if someone you know and love could benefit from this medicine, would you still feel the same?  Would you want that option available to help them have a better quality of life?  I do.  I have a feeling that things are really going to be changing not only on the state level but, on the federal level in the next year or two so I am hopeful this treatment option will be available for everyone who needs it in the United States.

I now move on...

At the end of the day today,  we will officially have a Senior in High School, a Freshman in High School and two 7th graders.  How did that happen?  I'm going to tell you right now, I am an emotional mess even thinking about it.  Just yesterday I was dropping Delaney off at St. Edward's Preschool in Waterloo with a two year old and two newborns.  Now in less than a year, I will be watching her graduate from high school with three teenagers soon to follow.  I thank God for these four blessings but, I wish they could have stayed little just a wee bit longer.  If you are reading this right now and you have small children, savor every moment.  Even the times you are about to pull your hair out and feel like the worst mother in the world, enjoy it all as soon your babies will be teenagers.  I remember I used to think life was so challenging back then and I know it was.  Each stage in your children's lives brings new challenges.  Because we are in the midst of it right now, I think the teenage years are by far the hardest.  Those hormones....I don't like those hormones.  They make sweet children turn into monsters. I liked it back when I could do no wrong and my children adored me.  Now, it seems I can't do anything right and although I know they love me, I sometimes don't feel adored.  I know this time in life shall pass so I will savor every moment..the good, bad and the ugly.

The girls are doing pretty good right now.  The big seizures are coming about 2-3 times per week on average which is pretty good for us.  The little seizures are still too frequent to count and happen daily.  We are waiting on insurance approval for a new seizure drug.  It is not FDA approved and has to be shipped from France.  It has been proven to help patients with Dravet Syndrome so we are hopeful it will help our girls.  The hormones are out of control right now and it is a joke between Matt and I that the "beast" switches between the girls. It seems to switch daily most often.  One will have a great day and the other will be out of control irritable and moody.  Then , the next day they will switch.  It stinks as we rarely get a break from the "beast" but, sometimes we get lucky and they are both happy and sweet at the same time.  The large amount of medications they are on does not help either and I am sure if I felt as crappy as they do, I would be pretty crabby too.  Not to mention the constant seizure activity going on in their brains.

We put the pool up this year after taking the year off last year.  The nightmare was too raw last year from when we were in Pittsburgh and they both had a seizure in the swimming pool within seconds of each other.  That still remains our worst seizure memory and the girls have not swam since that time.  Swimming is by far their favorite thing to do so we decided to give them the opportunity to do so this summer.  We got in for the first time on Saturday and no seizures!  Unfortunately, Lindsey did have one in the pool yesterday.  Many precautions are taken each time they get in the pool.  Never do they get in without a life jacket, the oxygen is right next to the pool and at least two people have to be in the pool with them.  Needless to say, we do not relax while we are in the pool with them but, the joy we see on their faces and watching them have so much fun is worth it all.

I am down to my last two hours of peace and quiet before the summer chaos begins.  I am looking forward to no alarm clock and no deadlines to meet.  I am looking forward to the memories that will be made on this last summer before our first-born graduates high school.  There will be many days that I will want to pull my hair out, I won't feel adored and will most certainly feel like the worst mother in the world.  Yet, I am going to enjoy it all.  I hope my children know that they are loved and adored and when they are all grown up they know I did the best job I could.

Happy Summer!

All We Need is a Signature...

What a month it has been since my last blog.  I am mentally, physically and emotionally exhausted.  We took a trip to Rochester to see a new Neurologist at the Mayo Clinic who we really liked.  We are very excited to have her join our medical team! Unfortunately illness has been running rampant around here.  Four of us had a respiratory infection, five of us had a horrible stomach flu and Lauren was hospitalized for the first time in six years due to seizures.  We are ready for some good health, some warm temperatures and sunshine!

I am sure you have heard the news that the Cannabidiol Act was passed early this morning by both the House and the Senate.  This was a great victory for Iowa as our law makers have stated that cannabis has medicinal value.  It is a great step in the right direction and I am so thankful for the majority of Senators and Representatives who took the time to be educated and make the right choice to allow this to happen.  There are many heroes at the Capitol  that fought very hard over the last few weeks to even make this a reality for us.  Senator Joe Bolkcom and Senator Charles Schneider were the heroes in the in the Senate.  Rep. Rob Taylor, Rep. Bob Kressig, Rep. John Forbes, Rep. Jared Klein and Rep. Clel Baudler scrambled and went up against many obstacles to get this done in the House.  For my Greenfield peeps, a huge thank you needs to go to Clel.  He was the biggest opponent in the beginning, as you know.  I was very upset with him at first at his unwillingness to open his mind.  But, he took time to educate himself on cannabidiol and to listen to us.  He will tell you that this is not medical marijuana, it is hemp oil and he wants to make that clear.  He wanted to do the right thing and he knew that this was it and the time to do it was now. He did it for the kids.  There is still one more hurdle we need to get over before we can truly celebrate a victory. Governor Branstad needs to sign it.  So, the battle has not been won quite yet.

This bill, although a great victory for Iowa, is a very limited bill and they are not making it easy for those of us who need it to get access to it.  There was an amendment added last night from House Majority Leader Linda Upmeyer that states that only a Neurologist who practices in Iowa can recommend cannabidiol.  Although Iowa does have some great Neurologists, those of us with such complicated children have to seek treatment from out of state doctors who are experts in treating intractable epilepsy.  A few moms who fought really hard and had great hope had that taken away from us last night with this amendment.  We do have a Neurologist in Ames who we have seen for a couple of years who has been our local contact.  During my conversation with him last Friday, he led me to believe that he is not willing to refer patients.  Many doctors are hung up on the fact that it is not FDA approved and they are afraid to recommend it because it is not.  He is one of them.  Although he is willing to prescribe our girls a seizure medication that is not FDA approved...  I don't have to agree with his thinking but, I have to respect it.  I will follow up with him again after the dust settles and IF the bill is signed by our Governor.  Another roadblock for us is that we have to travel to another state to purchase it.  This takes time and money. Cannabis oil is expensive in itself.   I have yet to find a family who have very medically fragile children and have both extra time and extra money.

Now I am not trying to be Debbie Downer here friends, I just want to be honest with you that although this is a HUGE victory for the state of Iowa, there is still a lot more work that needs to be done. Rep. Klein said it best when he said, "This isn't a perfect bill, but it is a good bill."  It gives families that have run out of options a chance to help improve their child's quality of life.  It shows compassion to those who need it the most.  Just getting our Dravet diagnosis, there is one, possibly two medications that we need to try that could possibly help our girls first.  I fought so hard for this because I want it to be an option for us when we do run out and I personally met people who have no options left and it breaks my heart. They need this now!  I also believe with all my heart that this medicine needs to be available to all people who suffer from other debilitating diseases.  No child/adult should have to suffer when there is medicine out there that has been proven to help just because it comes with a stigma.  It is my hope that in the next legislative session, a "perfect" bill can be written.  It is also my hope that with half of the United States having at least cannabis oil legislation and the majority a full medical cannabis program, the federal government will do what is right and reschedule cannabis.  Being a Schedule 1 substance, that means it has "no medicinal value."  That is wrong.
 
This whole experience has been an eye opening one for me and I have learned a lot.  I will be honest, I rarely pay attention to what is going on at the Capitol.  I will watch the news and that is about it.  Up until recently, I had only visited the Capitol on my kids' field trips.  I can tell you one thing... I could never be a politician and I could never be a professional lobbyist.  I met many great Senators and Representatives who really impressed me and I met some who really disappointed me.  I was blessed to meet two moms, Sally and Maria that were instrumental in getting this all to happen.  Sally and Maria live in the Des Moines area and they both have children with Dravet Syndrome. They didn't leave when the door was slammed in their face in February.  They continued to fight, urged us all to join with them and together with the help of our amazing children, we won over the House and the Senate.  I am grateful to call them friends and know that we can be there for each other as we all face the same beast in Dravet. I met many other moms and dads who have children with intractable epilepsy and hopefully will be able to continue to hear from them and continue friendships with them.

I am glad that I can put my dress clothes and uncomfortable shoes away and get back to giving my family 100% of me.  After emailing every Senator and Representative I will now need to spend time taking myself off of their newsletter lists that they put me on without my consent...  Some of them asked me to keep in touch with them.  I thought  that was very sweet.  Yesterday, Lauren and Lindsey were made "Honorary Senators" of the State of Iowa.  They were pinned and everything.  They were hugged, shook many hands and had their pictures taken many times in their two trips to the Capitol.  Little did they know, they were part of making history in Iowa.    

Thank you all for your support, kind words and prayers.  Yay for Cannabis Moms!