ALS 2 years

Two years ago today I heard these three words, You have ALS. Sixteen days later a baby came into our lives and he breathed life into our devastated existence. God knows exactly what we need and He knew we needed Ryan.  His timing is always perfect. I have to admit these last two years have been a roller coaster ride with many ups and downs. But God has been with us giving each one of us strength each day to face this beast. My home is inundated with machines, medications, tubes and formula. 
Today I am grateful for toes and fingers that still wiggle, for arms and legs that still move, my feeding tube that nourishes me, my DPS that keeps my diaphragm strong and technology that allows me to communicate.
I am thankful for my husband who daily tells me I am beautiful and that he loves me. I am grateful for my daughter who is my best friend and my biggest cheerleader, a son in law who is compassionate, my grandson who gives me reason to get up everyday, my son who is strong and has brought laughter into our lives and a daughter in law who understands my signing.  I am grateful to my sister who has held me when I cried and prays with me. I am thankful for the family and friends that visit me. I am thankful for mama who believes I will be healed. Most of all I am thankful for Jesus who gives me mercy and grace. 

You can read another great post by my daughter. 

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One YearAgo

One year ago today I took my last phone call at work. My speech was so bad that no one could understand me. I had known for quite awhile that I shouldn't be answering phones or for that matter even working. But that particular day was especially difficult. I had to admit it to myself and then take the step to actually do something about it. Through tears I told my coworker Rhonda that I couldn't do it anymore that I needed to leave.  I was shaking from the stress of taking the phone calls and trying to communicate with patients that stood before me.  They would look at me like I was crazy. Is she drunk?  Is she okay?  I texted Kenny and asked him to please come get me. We headed straight over to my doctor who promptly put me on medical leave and started the referral process to see the neurologist at Barrows.  I had already done all the preliminary testing to rule out stroke, MS and a slew of other diagnosis.  By that time I had already been to nine specialists. It was actually a relief to be off work.  I was trying so hard to push through, be strong and keep going.  When the doctor looked at me and said you shouldn't be working it was both a kick in the stomach and also a free pass to finally put myself and my health first.  That was a difficult day. But who knew what DIFFICULT really was. Three months later the three letters were spoken that would define difficult once and for all. ALS. 

ALS is a BEAST

I can no longer say what is on my mind. I am not able to pick up the phone and call a friend and have a spontaneous conversation to discuss the days events.  I can no longer give words of encouragement without hesitation. I am no longer privileged to pick up the phone and encourage my daughter through difficult times.   I can't speak all the sweet thoughts to my grand baby.   This is harder than I could have ever imagined. ALS is a beast!  

I Am The Fixer

I am mom. I am the fixer. I have the answers. I take care of the little things. I take care of the big things. I put out fires before they start. And if they are already flaming I know how to put it out and make sure everyone and everything is patched up. I am mom. I am the fixer. I know what is going to happen even before it is thought of. I am mom. But now I can't fix things anymore. My mind races with the things that I should be doing. I have important things to say. I have phone calls to make. Appointments that need scheduled. Questions for the insurance company. Decisions to make. But to do all that you must use the phone. I can't use the phone. I need assistance. That makes me want to scream. I am mom. I am the fixer. I have the answers. Not anymore, now I am mom with ALS. I miss conversation. I miss interaction with friends. It takes so much energy. I am stingy with whom I will use energy on. My family. I am mom.
ALS steals spontaneity. ALS steals independence. ALS steals conversation. ALS is heartbreaking.

ALS Diagnosis

Have you ever wondered how you would react if you were told you are going to die or were given a diagnosis that is almost certainly terminal.  I don't think I had the reaction I would have predicted.  I was shocked, questioned whether it could be something else, was he sure?  Then I tried not to cry.  I looked at Kenny and he was in tears trying to hold it together.  I was on the examining table and he was in a chair that seemed to be a mile away.  This cannot be happening. 
My doctor proceeded to tell us about his multidisciplinary clinic and how all of my care would take place there.  He spoke of speech therapy not to regain my speech but to teach me how to effectively swallow so I don't aspirate and get pneumonia.  He says that is very critical in someone who has ALS.  He then told us how we will be proactive in getting speech aides in place before I lose my ability to speak completely.  Everything from now on is all about preparation for what we know is coming.  At the first sign of losing weight they will place a a PEG feeding tube before you lose your ability to swallow. 
I have to say it was a lot to take in.  Nothing like I had ever imagined.  The doctor left the room to get his RN coordinator for me to meet and Kenny and I stood at the big window in the exam room.  We are on the seventh floor looking down at the people walking about.  There was a "Seasons Greetings" sign all lit up on the side of the hospital.  Kenny held me and we stood in silence.  We tried to catch our breath and hold it together.  Like we were we expected to?  It is really crazy how you try to be strong because you don't want to appear be weak.
It has been one month since I received the diagnosis.  In that time we have had so much happen in our little family.  My first grandchild was born at 35 weeks gestation.  My daughter went through so much with her pregnancy.  She was on bedrest for most of it.  Then she is told her baby isn't growing and he will have to be born early to prevent him from getting really sick.  At 9 days old he spent his first Christmas in the NICU.  After thirteen days in the NICU he was released and was able to be home for the New Year.  We are so very grateful that our little baby was not sick just young.  He is so very precious and has been a great diversion from my own agenda.

Nana and Papa

My daughter is in the hospital in labor with my first grandbaby.  What a wonderful feeling to know that a new life is coming into our lives.  I already love baby Ryan so much.  The doctors are concerned that he isn't thriving in the womb and would do better if he was delivered early.  At 35 weeks he is measuring about 4 pounds.  They say he is close to a month behind in growth.  I am trusting that this little guy is going to be a Samson in strength.  He is so active in the womb and has a very strong kick.  Watching my daughter go through this process has been hard.  Her pregnancy has been anything but enjoyable.

Medical Leave

It was three months ago today that I took my last phone call at work.  My speech was so bad that the patient couldn't understand a single thing I was saying.  I texted my husband to come get me.  We went directly to my primary care doctor and I was put on medical leave.  That was the first day that I had to truly admit I wasn't getting better actually, I was getting worse and rapidly.