Heartbroken...but not without Hope

I feel the need to write this blog tonight but, the words are so hard to write.  It has been a very long week for our family.  The girls are fine...this has nothing to do with them.  If you have been following along with this blog, you know that my mom's health has been concerning us for a few months.   As you know she has taken some falls over the last few months and has become weaker.  This past Sunday when the kids and I took our weekly trip to Greenfield, my heart broke into pieces as I watched my mom be in so much pain and have even more difficulty walking and her left-sided weakness was more pronounced.   We had consulted with a neurologist a few weeks ago and have been waiting for a follow-up appointment which was supposed to be this coming week.  We couldn't watch her struggle any longer and not have any answers.   After much debate, we took her to the hospital to get her some help.  The Greenfield hospital transferred her to Methodist Hospital in Des Moines where she underwent testing to try to figure out what is ailing her.  We did find out that when she fell on Labor Day, she broke her ankle.  The way we found out is a very long and infuriating story but...I will spare the details.  The broken ankle is the least of our worries.  After many tests which all came back normal, the doctors performed an EMG nerve/muscle test on Thursday.  The results of the test were not normal.  That day, we heard the words no family ever wants to hear.  My mom was diagnosed with ALS - Lou Gerhrig's Disease. They suggested we seek a 2nd opinion and we chose to do so in Iowa City.  Mom was transferred there Thursday night and today after another EMG, the diagnosis was confirmed.  We are heartbroken...no words can even describe how saddened we are.  Mom will remain in Iowa City until we come up with a plan to transfer her to a rehab facility to help her get back on her feet following her broken ankle and injury to her left shoulder/arm from her falls.  Hopefully early next week we will have her closer to home.  Although she is crushed in spirit and her body is weak, I know without a doubt she will fight this battle with every ounce of her being.  Determination is one thing she does not lack.  We have had many laughs this week and shed many tears.  We have met many people who have found out something that I have known for 43 years.... my parents are two of the dearest and neatest people you could ever meet.  My mother is a gem and you cannot help but fall in love with her.  I will share one funny story when one doctor came in to talk to us, his name was Dr. Gherke.  She never quite got his name correct...at one point she called him Dr. Dorothy as that was what she thought he said.  We corrected her and later as he was walking out she said, "thanks, Dr. Jerky."  Priceless!

These pictures were taken today while we were waiting for her EMG test in Iowa City.  I will treasure them always.  Please pray for my parents.  We know the road we are about to go down will be a rough one and we will hold tight to our God who will be there...every step of the way.  We are broken in spirit but, never will give up  hope.  People, treasure every single moment you have with those you love.  Tell them you love them.  Show them you love them.  Never ever take one second for granted.   

Waiting Patiently

Here we are three weeks into the school year.  Everyone has settled into the early morning routine.  Some get out of bed with more excitement than others...  The big kids are keeping very busy with their sports and the girls are keeping busy with the gym.  Scooby has gotten used to the quietness and so have I.  I wish I could say I have gotten great things accomplished but, I cannot.

The girls are doing okay.  Lindsey has had a very rough week and a half.  Seven large seizures in nine days.  Unfortunately, one day she had four and was one shy of going to the ER.  The seizures are coming out of nowhere as usual and the blinks and tremors are frequent.  We are very much on edge at all times.  Just tonight Lindsey was getting water out of the fridge and I heard water pouring on the floor.  I ran to her just in time to catch her before she fell to the floor in a seizure.  It felt like I was running in slow motion...just glad I got there in time, this time.  Have I told you lately that seizures suck?  Lauren was having a particularly crabby day today.  I think she screamed and called me a baby more times today than she has in a long time.  I guess I have been called worse...so I will take "baby."   We see the Neurologist at Mayo in two weeks.  Lots of things to talk about.

My parents have been through the ringer lately also.  Unfortunately, it has been a huge reality check that indeed they are getting older.  I like to think they are invincible.  You know it is hard to see your parents growing older and seeing their health deteriorate.  I got a frantic call from my mom the Friday before Labor Day saying my dad may be having a heart attack.  I told her to hang up and call 911 and I met them at the hospital in Greenfield.  Luckily, Dad did not have a heart attack.  He actually had pneumonia and a pneumothorax.  He was hospitalized for two nights and broke out of there as quickly as he could.  He is a patient man but, he had enough of being hooked to an IV pole.  Mom was at his side the whole time.  Dad has since recovered for which we are very thankful for.  In the meantime, we are still waiting to figure out what is causing my mom to continue to have weakness in her left side.  She is now dependent on a walker for her mobility and has very limited use of her left hand.  She has had a couple more falls since her first fall in July.  The most recent one was on Labor Day when she fell and sprained her left ankle while trying to get up.  She has had an MRI which came back normal.  She has seen a nerve doctor who diagnosed her with mild carpel tunnel and nerve damage in her left shoulder.  No explanation for her left leg weakness.  Yet.  We have been waiting weeks for her to see a Neurologist in Des Moines and luckily only have one more week to wait.  My patience has really been tested waiting this long for her to see a specialist.  I just hate to watch her struggle so much and have no reason known for her to do so.  I want her to be fixed.  Now.  God and I have had many one-sided conversations about this and I wait patiently for His answer.  As if their health scares are not enough, their basement flooded with the recent large rains.  Twice in one week actually and both with sewer backups...the latest the morning Dad went to the hospital.  What a mess.  We have spent many hours there cleaning up and getting ready to get it put back together.  While there I broke my dad's lawnmower and I broke the recliner on their couch.  Luckily, I didn't hurt either of them... I felt horrible.  They took it with such grace but,  I wonder if they gave serious consideration to sending me home?  Lots of discussions have been had in the last couple of weeks that you really don't like to have to talk about.  This is hard.  Your prayers for my parents would definitely be appreciated.  They mean the world to me and I ask for your prayers of protection and healing.  Below is one of my favorite pictures of them together.  In just three short weeks, they will be celebrating their 55th wedding anniversary.  Unconditional love at its finest.  They have been through so many trials together and their love for one another has never wavered.

I have a busy week this week with two testimonies in front of legislators regarding the cannabidiol law.  We have a lot of work ahead of us to educate and open the minds of many close-minded elected officials to come up with a medical cannabis program that we can actually use.  Every day I am reading stories of sweet kiddos who are receiving great results with cannabis oil.  Yet...we continue to wait.  There is a clinical trial of a cannabis drug called Epidiolex that hopefully someday soon we will be chosen to take part in.  If you would like to add that to your prayer list, I would be most appreciative.  The latest I have heard is that it will be spring at the earliest that the next phase opens up.  But, we are not guaranteed to be chosen.  I plan to pester our Neuro at Mayo about it in two weeks.  Meanwhile...I will continue to pester our state legislators.

Lots of coals on the fire, lots of plates to juggle and a glass to keep half full. We will continue to put one foot in front of the other, eyes focused on the future and surrounded by the ones we love.  Life is precious.  Hug those you love and tell them that you love them. And don't sweat the small stuff.  We serve a mighty God and I know the days when we don't have it in us to get through the day, He supplies the grace and the strength we need.

I will leave you with this song that I listen to multiple times a day.  I think we all can relate.  Holding on tight...

  Hurricane

You're spinning out of control again
Your life feels like a sinking ship
You're wondering how it came to this
Is it too late? Is it too far?
For him to reach you and come to where you are

Step out on the edge
Don't be afraid of it
And when you feel the rain
Call His name
He'll find you in the hurricane

Don't back down from the fight
He'll shelter you tonight
Just hold on for the change
Call His name
He'll find you in the hurricane

There's a place, there's a place
You can run when you fall
And it's all come undone
You'll be safe in the raging storm
So just let go 'cause you are held in His arms

Blessings,
Kim