Life is Hard

I always sit down to write and never know how to start.  I have all of these thoughts and emotions that I want to talk about but always struggle with how to put it down on "paper."  It takes me back to my school days in English class (one of my favorites by the way) when you have a creative writing story to write.  You have to come up with your lead sentence to capture your reader's attention.  It sets the tone of your story and is the make or break statement that controls your story's destiny.  I struggle with that. So here's my lead sentence...  Life is hard.

Yes, life is hard.  Some days just really suck.  Others are just peachy keen and some are just okay.  Forrest Gump's Mama was right...life is like a box of chocolates.  Yesterday was like biting into a coconut cream candy when you are anticipating a caramel.  I went to work like any other Thursday and was having a productive day.  I  had to run some errands and stopped to grab a bite of lunch around 2:15 and my phone rang.  On the other end was the school nurse.  I could hear the panic in her voice as soon as she started talking.  "Kim...I am going to give Lindsey Midazolam. She's been seizing for over 10  minutes and the Clonazepam didn't work."  I'm in Urbandale...25 minutes away from school and stood there in Hy-Vee gathering information and feeling helpless...the world stopped for a moment.  I told her to go ahead and call 911 as neither girl has seized that long in a long time and it's better to have them there sooner than later.  Luckily, Lindsey stopped seizing shortly after receiving the 2nd dose of rescue medication and they didn't need to transport her to the hospital.  Matt was at home and was able to get to the school before I could and brought both girls home.  The paramedic encouraged us to have them take her in due to the amount of drugs in her system, and not knowing our situtation, I would feel the same if I were him.  But as you know, this is our life and we've been down this road many times.  But, this one shook me... We have gotten used to "short" seizures lasting 2 minutes or less and if you can ever get comfortable with seizures, we were.  But, after this one,  all of the "what ifs" started going through my mind.  What if it's the CBD oil wean that caused this?  Did we make the right decision?  Should we stop the wean and go back up?  Did we make the right decision to try to get into the new trial?  What if we get off the oil and the new drug doesn't work?  Is she going to do it again?  Is Lauren going to have one next?  What if it doesn't stop next time?  What if she goes into cardiac arrest because her heart rate is over 200?  What if one dies or even worse, both?  Yep, every single one of those "what ifs" have gone through my mind the last 18 hours.  Riddled with fear, anxiety and helplessness.  Life is hard.

Mom's been gone for almost 2 years.  Still seems like yesterday...  Last week after Dad's prodding, my sister and I met at Mom and Dad's house and went through Mom's things.  We have put it off because it seems so final.  I'm so glad we were there together to support each other as it was hard.  We inspected every piece of clothing, remembering how much or little she wore it and sorted them all into piles.  Some had special memories tied to them and others hung with the tags still attached.  Mom had a lot of clothes.  Some still carried her scent and I found myself standing there smelling them and wishing she was still here to wear them.  We were able to get through them all and then moved on to memoribilia.  We placed those in a box because we just aren't quite ready to go through those yet.  We found another unopened tube of "Vintage Wine" lipstick that I placed in a bag to take home.  If you ever saw Mom in public, she had a fresh application of Vintage Wine on her lips.  It was her signature color and she never left home without it.  I now have three tubes of it and wear it when I need a little encouragement or have a special place to go.  It makes me feel happy to wear it.  We were able to get a lot accomplished that day and each of us left with some precious memories of mom to take home.  My car was loaded with Mom's clothes as I headed back down the highway towards home.  They stayed there until yesterday when I dropped some off at Goodwill and others at the consignment store.  It was hard to let them go...  Life is hard.

I recently found out a dear man with whom our family adores, who has prayed for our family for years, is an ear to listen and voice to counsel any who need encouragement, a godly man who is a blessing to so many, was diagnosed with advanced esophogeal cancer.  I know there are many, including me, who wonder how God could allow this to happen to a man who serves Him daily?  It's hard to wrap your mind around.  But, we all know there's a purpose for everything in life.  Sometimes we don't understand that purpose and we just have to trust that God knows.  Please pray for Chuck and his dear family.  Cancer sucks and we have lost too many friends because of it.  Life is hard.

Two nights ago I had the pleasure of having dinner with three fellow epilepsy moms.  We try to get together on occasion but, it had been a long time since we had the chance.  None of us chose this life as an epilepsy mom and we share a special bond of understanding exactly what the other is going through.  We sat there and gave the low down on each our our kids, shared our struggles, frustrations and fears.  We laughed, smiled and recalled some memories we have shared over the last couple of years.  We let our hair down, relaxed and enjoyed each other's company.  It was a lot of fun and I left there feeling refreshed and so happy to have the time to spend with them.  Would we be friends if our children didn't have epilepsy?  No, probably not.  But, we were placed in each other's lives because of epilepsy and the desire to help our children have the opportunity to have a better quality of life given to so many others.  I am thankful for the journey that brought us together.  We have fought together for three years now and we will continue to fight together until the battle is won.  Life is hard.  But, it's worth the struggle.

Happy New Year.  2017...it will be a year of change and hopefully the year compassion wins.  

"Life is hard.  And it isnt' fair.  And it really hurts like hell sometimes.  But if you focus on what is within your power to change for the better.  You can. And you will."

A New Trial

As I sat down to blog, I saw this:

She made it clear that I was to not be blogging; she needed some snuggles.

Then this happened:

Who am I to turn down puppy snuggles?  Which then turned into a nap. Stella has brought so much joy to our family.  We couldn't ask for a better dog!  

Here we are...almost a year since my last post.  I'm not even sure where to begin.  Everyone is doing well.  We made it through the 1st anniversary of Mom's passing.  It's been tough.  I think about her a lot.  Sometimes I think about her and the tears just start to fall.  Other times I find myself in a situtation and think "what would Mom tell me to do?"  Most of the times I am thinking to myself, "I really wish Mom was here..."  But, she's in a much better place, I know.  No more pain and suffering.  For that, we are thankful.  

Delaney and Mason are doing well.  Delaney is still at Coe College in Cedar Rapids and keeping very busy between school, sorority and work.  She will be home for Christmas break soon!  Mason is a junior at SEP.  He played golf this fall and keeps himself busy going to the gym or playing video games.  L&L are now freshmen at SEP.  I still cannot believe it.  They really like school and the highlight of their day is riding the bus to and from school.  Matt and I celebrated our 20 year anniversary and spent a few days in St. Thomas in October.  It was a very relaxing and fun week. 

The girls finished year one on their clinical trial for CBD oil and we signed on for another year in August.  I would like to say it is making miraculous changes in our girls and they are free from seizures but, I cannot.  I can say that it is making positive changes in certain areas.  Their cognitive/communication skills are the most improved areas.  That makes perfect sense since CBD is a neuro-protectant.  Yes, that horrible drug marijuana is helping my daughters' cognition; can you believe it?  Sorry...I digress. They crack us up and amaze us when we can see the wheels turning.  It's amazing to watch and listen as they communicate with each other and others.  The seizures...not as good of control as we had hoped. The number of seizures are still about the same.  They seem to recover more quickly.  Unfortunately we still live in a constant state of panic if they are up and about as seizures strike at any moment.  We can often be found whipping our heads around ready to jump into action if we hear a strange sound coming from them.  Sometimes they look at us like we are crazy.  There's never a dull moment...and we are always on edge.   

In October, our former Neurologist at Mayo called and asked if we would be interested in taking part in a new clinical trial.  It is for the drug Fenfluramine.  It has been showing great improvement in patients with Dravet Syndrome in Belgium and the FDA has started a clinical trial here in the States.  She said she was excited for this trial and encouraged us to consider.  The girls would need to be weaned from two drugs that they are on or they would not qualify for the new study.  One is Stiripentol, another non-FDA approved drug they have been on for about three years which we were planning to try to wean anyway.  We started weaning the Stiripentol back in October and the girls just took their last dose this week.  The wean has gone pretty well with only a couple of rough patches along the way.  The other is Epidiolex (CBD oil.)   We had an appointment with our Neurologist in Iowa City on Monday to discuss stopping the Epidiolex trial.  We decided to go ahead and will begin that wean around Christmas.  I'm a little torn on this one.  We have seen some really great improvements as I stated earlier with their cognition and communication so I worry we may lose what we have gained.  Once we withdraw from the Epidiolex trial, we will not be able to access it again unless it is FDA approved.  But, at the end of the day, our main goal is to reduce seizures.  Epidiolex isn't doing that.  Plus, IF we can cut down on the number of seizures, we should have better cognition and communication.  So, if all goes well with the Epidiolex wean, we will have our first appointment at Mayo for the new trial in late February.  It will be a lot like the Epidiolex trial in Iowa City except our travel time will be doubled.  The new double-blind placebo study will take about 3-4 months.  When it is done, the girls will be able to enroll in an open label study like we did with Epidiolex where they will both be on the real drug.  There are some possible side effects with this drug, the major one causing heart problems, so the girls will be going through a lot of testing during the trial.  That's the scary part...what if they are harmed?  It's unlikely and with the frequent testing they would catch it early but, you still worry.  

So, that's where our journey is now headed.  Please pray for our girls.  Specifically that the Epidiolex wean goes smoothly.  Please pray for their safety.  Weaning medication is always scary as you really don't know how well it is working until you take it away.  

So this just happened...

I guess that means it's time for me to sign off.  We wish you all a very Merry Christmas and a Happy New Year!