Our Greatest Loss

Where do I begin...it's been a while since I have given thought to blogging.  Not sure what to say or if I even want to say it.  The emotions are still raw...

As you know, Mom lost her battle with ALS on March 17th.  She was surrounded by her family as we watched her take her last breath.  I can only imagine what her entry into heaven must have been like.  We held her hand, kissed her head and told her how much we loved her. We told her it was okay to let go.  She fought hard and she fought to the very end.  She never once said, "why me?" even though I am sure those thoughts were in her head a lot.  I remember the day we received the news of her diagnosis.  She was heartbroken and scared but, the one thing I remember is Mom and Dad hugging and mom saying to him, "I am so sorry."  She was apologizing...how could that be?  That's how unselfish she was.  She always thought of others before herself.  She touched so many lives even during her illness.  Everyone who had interaction with her could not believe how great of an attitude she had when faced with one of the worst diagnosis' a person could face.  One of the most strong and independent women I have ever known was forced to be completely dependent on others for everything.  She couldn't even scratch an itch.  In the end, she was barely understandable as the disease even took away her ability to talk.  But yet...when we couldn't understand what she was trying to tell us, she would just smile, chuckle maybe even, and say "it's ok."  This picture was taken as I was trying to figure out what Mom was saying.  I was frustrated, she was frustrated, but yet she had a smile on her face.  We laughed as I would say words that weren't even close to what she was trying to say.  One thing this disease never took from her was her sense of humor.  This was the last picture taken of Mom and I and I will treasure it forever.  

I will share with you something that brought me great peace during Mom's journey.  Shortly after returning from the hospital after her bout with pneumonia and having decided to enter hospice care, Mom was awoken one night.  Over in the corner of her room were three beings.  Jesus was in the middle with an angel on each side.  Mom said at first she thought she was hallucinating.  She closed her eyes and when she opened them they were still there.  She was very descriptive of how they looked.  Jesus wore a gold crown and they all wore white. They were moving about but never said a word.   She told me later that her first thought was, "I'm not ready to die, Kim is coming in the morning."  Tears...  We agreed that Jesus came to visit to let her know that her place in heaven was waiting for her when she was ready.  About a week before Mom passed away, another angel came to visit her in the same corner.  Friends, that brings me so much peace and I hope it brings you peace too.  Heaven is real and we can have reassurance that Jesus has a place for each and every one of us there if we choose to believe.  I can't wait until the day I get to see her again.  Oh how I miss her.  Every single day she is in my thoughts and I wish she was still here.  But, I do not miss seeing her suffer.  There is nothing worse than watching someone you love suffer and not being able to do a darn thing about it.  She is whole again and honestly, she won the battle because her pain and suffering is no more.  We are trying to adjust to our new life without her.  It will never be the same but, she gave us a great example to live by.  Please continue to pray for our family and especially Dad as he tries to adjust to life without his best friend.

We are now preparing for Delaney's graduation from high school.  I cannot believe I just typed those words.  Wasn't she just born?  She is very excited to be graduating and moving on to her next phase in life.  She has chosen to go to Coe College in Cedar Rapids in the fall.  We are so proud of how hard she has worked to make this a reality!  I am so incredibly sad that my baby girl has grown up but, I am equally as excited to watch her spread her wings and do great things with her life.  She is determined, hard working, passionate, loyal and I am so proud to be her mom.  More tears...  Here she is just before her last prom...beautiful!

The girls are doing pretty well right now.  Their moods change like the wind but, I guess you could say that's typical for teenagers.  The seizures are still happening way too often.  Lauren has been so sweet lately when Lindsey has a big seizure.  She had one the other night and when Lauren left her sister's side for a minute, she turned to her dad and said, "Dad, will you keep an eye on Lindsey for me?"  As much as they get on each other's nerves, their love for one another is so amazing.  I am so glad they have each other to travel this journey with.  The girls have had a hard time understanding that Grandma Rose is no longer with us. They know that Scooby and Grandma Rose are in Heaven.  Lauren asks frequently if we can call Grandma in Heaven.  We sing about Grandma Rose being in Heaven every day.  That somehow seems to help make everything better for a while.  

We are still hoping to have access to cannabis oil soon.  Please pray that we will have that opportunity sooner rather than later.  I'm not sure our legislature is going to come through for us this year.  Or rather they would sure like for us to believe that.  If you haven't reached out to your Representative yet, please remember to do so.  If you would like help in doing so, please let me know and I would be more than happy to help you.  The people of Iowa that want this medical option available need to make their voices heard.  Sometimes it falls on deaf ears; but know that there are some pretty amazing legislators in the gold dome who are working very hard to try and make this a reality for us.  We are so thankful for them.

I will leave you with a little reminder once again.  Do not take one day for granted with those you love and hold dear.  Tell them you love them.  Call them, text them, whatever you need to do.  If something is coming between you and those you love, make it right before it's too late.  We are not promised tomorrow.  Thank you all for your cards, gifts, thoughtful words and for holding our family in your prayers.  We are very grateful for them all.  

Kim

    

Rollin' With the Punches

Sometimes you know, life is hard.  We have been challenged greatly these past few months.  My only description that I have is that it's like we are Weebles.  Remember those round bottom toys? "Weebles wobble but they don't fall down."    Well I think our round bottoms are getting a little bit worn and we are starting to get a little slower coming back up for more.

The girls are plugging along.  We met with our Neurologist a couple weeks ago.  She decided that we need to put them back on the medication that we had stopped a few months back.  The girls were in a tailspin and the seizures were way out of control.  So, we are now back on four seizure medications. Things have settled down some since we started and we are hoping they will continue to get better as we increase.  We talked at length about the CBD clinical trial.  We should receive a phone call from her in early March to start the initial phase of  qualification for the trial.  Just because we fit all of the criteria for the trial does not mean we will be chosen.  There are only 130 patients world-wide for this trial and the qualifications are pretty strict.  We hope we will be part of the 130 so please join with us in prayer that our girls will be chosen.

If you didn't already see it, we did a news story with the Des Moines Register a couple of weeks ago.  Des Moines Register is the link if you would like to read it.  We still have a few Republicans who are content with a law that doesn't work.  Hopefully they will have a change of heart and see the need for change.  There a lot of lawmakers who are working hard for us and we hope that once again their hard work will pay off and we will  have access to this medicine.  Not just for those of us suffering with epilepsy but, also those with other life-threatening and debilitating diseases who could benefit. I made a trip to the Capitol yesterday and had a frank discussion with Clel Baudler.  He is one of the Republicans that are content with the law that doesn't work.  It seems the progress he made last year has been completely lost. To say that I am frustrated with him would be an understatement.  If you haven't already done so, please reach out to your local legislators and ask for their support for expansion of the current law.  Find My Legislator  is the link you can use to access your local information.  Sick Iowans need access to this medication IN IOWA.

Our beloved Scooby passed away three weeks ago.  Although he had been dealing with a health condition for a few years, it was very unexpected.  It's quiet here without him.  We don't have a warm welcome every time we walk in the door.  We don't have a vacuum cleaner to clean up our messes on the floor.  We don't have a warm snuggle buddy as we watch TV.  I miss the times he would pass by me and nudge me with his nose; just because.  He was a good dog and he can never be replaced.

"You just gotta roll with the punches."  Those were the words my dear mother spoke as she laid in intensive care after she developed pneumonia and spent 5 days at Methodist Hospital a couple of weeks ago.  I am happy to report that she is back "home" to Fontanelle following her stay.  Unfortunately, her health continues to decline rapidly.  She is now under hospice care at the Good Samaritan Society and our main focus is to keep her pain under control and keep her comfortable until God calls her home.  We had many hard conversations over the last couple weeks and have shared some very emotional times.  Please pray for Mom's comfort and peace, for strength and peace for Dad as he only leaves her bedside when relieved by one of us kids.  For those of us who are blessed to call her Mom, Grandma Rose and friend.  She is handling this with such grace and dignity, I am in awe of her every single day.  She deserves only the finest mansion heaven has to offer.

Thank you to those who are going above and beyond to help take care of our family while we travel down this path of life.  The meals, the cards, the house cleaning, the words of love and encouragement mean the world to us.  There is no greater thing than to see the love of Christ being lived out by those He loves.  "Not all of us can do great things. But we can do small things with great love." - Mother Teresa

With Love,
Kim