Dark Day #3

 Dark Day 3 is today June 3rd

I didn't get much sleep that night so about 6am I headed to the hospital for an update. On my way there I got a phone call from the doctor to tell me that his brain function was basically gone. He was pretty much brain dead and it was time to make a decision whether to put him on machines or to just let him go. I turned around to go back to the kids so I could let them know what we were now faced with. After talking with them I called the hospital and they graciously agreed to let my kids go and say goodbye. The only thing is it had to be one at a time because of covid restrictions. So I walked my children into the hospital one at a time to say goodbye to their father. It's something all too familiar to me as I had done that same thing 23 years ago with my siblings. After they had all said their goodbyes I went back up to sit and hold his hand until he officially passed. My family who I am ever grateful for and a dear friend stayed in the parking lot to console my children in what was the most difficult time in their young lives. It wasn't long after the medical aids were taken away that he was gone. Being the 3rd time of having to make that life ending decision wasn't any easier than the other two. Can I just say that ALS sucks!! It doesn't just take away the one diagnosed. It also takes the family with it. The people who nutured that person and tried their best to make sure everything was exactly how they wanted it. They were there for his every need knowing that the outcome would be the same in the end. For all the people living with ALS and their caregivers, I feel for you and I pray for you. 

Dark Day #2

 Dark Day #2 is today June 2nd

This is the day I believe he died and already left us. This day haunts me a lot. It plays over and over again in my mind like a horrible movie on endless loop. I asked him about the remote because he always had it. The look in his eyes scared me. He didn't sleep that night so I convinced him to lay down. Edgardo got him his bypap machine which he used when he slept. I watched him and at one point his neck stopped moving. He stopped breathing at home. I have never felt so helpless and hopeless at the same time in my life. I was at a loss of what to do or where to turn. I panicked and yelled for help as I was feeling his chest for movement and I couldn't feel any. My brother in law who was outside working on our van and my brother came in and put him to the floor. My brother in law called 911 while my brother did CPR. He was a junior member for NAVA and volunteered for them so I was confident that he knew what he was doing. We waited as paramedics worked feverishly on him thinking they were going to say that there's nothing more they can do. Then I am told that they got him back and were taking him to the hospital.

Because of covid I had to sit in a waiting room all by myself waiting to hear what would come next. I waited thinking that maybe he would make it and he would have a little more time with his children. The doctor finally came in to tell me that they had him packed in ice to help his blood pressure go back up and they were giving him quite a bit of medicine for that too. She said that it would go on for a little bit and then they would see how he would react to it. The doctor also said that his heart had stopped on the way to the hospital in the ambulance. It's less than a minute drive from the house. It was a little while later that I was told they were able to reduce the medicines which gave me hope that things were going in the right direction. They took him from the emergency room to the ICU so I went to be with the kids who were with my sister Danielle. 

Dark day #1

 I now have 3 dark days of June as of 2020😞

The first day being today June 1st.

It's been 23 years since I lost my mother.  I go back and think about what could have been done differently. If the doctors would have seen it for what it was and not what they thought it was. I also think about the times I gave her a hard time (especially as a teenager) and wish I could take every single one back. One of my fondest memories is the day she called into the radio (98 PXY the station she listened to most) and was actually on the air answering a trivia question. She was a whiz at trivia. She was super excited that she actually got through and I was equally excited that I was hearing my mother's voice on air. Listening to the radio together was something we used to do and something I missed when it didn't happen as I grew older. I think about her love for children. Thinking about how she would love to be able to love and care for her grandchildren. She loved to take care of babies especially. You could ask her just about anything having to do with her family and she would be able to tell you what you needed to know. I get my love of people from her and I'm grateful for that. I miss her!😥