Well, it is March. Apparently Mother Nature thought ‘Michigan hasn’t really had a winter. Here, have a few more weeks of teens and twenties.’ Just enough after a week of the 60’s to get everyone sick because we felt good outside without 5 layers and now we are boycotting the cold. People are outside with no coats because they have put away their winter coats and gloves gleefully hoping to never see them till next fall. They REFUSE to get them back out and would rather freeze. To my West coast friends and friends down south, this is why you will see us ‘snow birds’ without coats when it is in the 50’s. It is a heat wave when you are 20-30 degrees warmer then where you live. To my friends on the East coast, here’s a warm mug a cocoa spiked with Rumchata or some spirit because apparently, you did something to Mother Nature to piss her off. My condolences.
Update on Phyllis for March 16th.
She has had to start taking higher doses of her Gabapentin. The nurses have said that if she reaches 12 a day then we must switch to Morphine. Unfortunately, she is maxing out her doses some days. But she goes others only taking a few. We are still trying to hold out on the Morphine but it is a balance of managing the pain. She has been having pain in her shoulders and knees and the massages she gets weekly have helped with that as well. She has also started to eat less. She can not handle the full container of formula and only can do half of it since she said “it feels like it is coming up my throat”. We stopped down last weekend for a short visit and she was in good spirits. Phyllis will be turning 70 on Monday! So please give her a shout out on facebook or messenger and say Happy Birthday.
Speaking of missing…
For the most part, dealing with the changes with ALS, I do my best to look past what is truly happening and be in the moment. Helping out with Dad and Phyllis and stopping in to make them smile, get a “thumbs up” from Phyllis and have her write me something random like “ Your Dad can’t find …., can you go look in …” and I make her laugh by saying “he was looking with Man-Eyes, It is not a condiment!”. I try to keep things as “Normal” as they can be given the situation. But I have moments where I slip into “Missing”. I recently heard this term from the mother I spoke of that recently lost her 14-year-old son. She is doing the best she can be dealing with her “changes” but she commented on the “Missing”. Missing a smile, missing goofy moments. The Missing of events, characteristics, or personalities. That describes the moments when I say I slip into “Missing”. Pardon the f-bomb but ALS fucking sucks. I can describe it elaborately with emotion and anger but that pretty much describes it. I am sure all the things I miss, Phyllis misses too. But the horrible thing is that my friend misses her son who is gone and physically not here. Whereas I miss the things that are gone but Phyllis is physically here. I thought about this the other day and remembered when I lost my brother Jeff, if I had a chance to talk to him, what would I say? What would be my last conversation with him? I “missed” out on that chance and decided I am not going to miss out on it now.
What I miss..
Phyllis, I miss your voice. I could and would call you up at any given moment to just talk about my problems, the goofy stuff Hunter was doing, things John did to make me mad :). You would tell me advice, laugh and then tell me the latest trouble my dad got into. I know you love us. I know you are thankful for us. I know you would tell us if you could.
I miss your happiness. You would walk into a room and people would see the smile on your face, the friendliness in your voice and sparkle in your eyes. I always think of yellow when I see you, even now, because you still brighten a room with your smile and make anyone feel comfortable. I know you are uncomfortable. I know you are being strong for us. I know you don’t want us to be sad but to be happy.
I miss you being grandma. You love being grandma. You would be the first one at a gathering to find something to entertain all the kids. Painting rocks, looking for pinecones, going for walks. Now I am blessed that Hunter has other Grandmas, but you took on the role with a mission and Hunter loves you dearly.
I miss your independence. Ok I know this one sounds selfish and it kind of is. But I could call and have called at 9pm on a Wednesday night and say “Hunter is sick and I have a meeting I cannot get out of at work”. You wouldn’t let me finish and just say, “What time do you want me to be up there” and when I got home my house was clean, my laundry done, and Hunter thoroughly spoiled while being sick. You were a lady that would take care of business when it needed to be taken care of and then go 200% past that.
So as I said, I am not going to miss out on the opportunity to tell you as I know you will read this. You are my bonus mom. You have treated me like a daughter and I will forever be grateful for that. You have been there for me through the great times and the sad times. You are loved by many and I will keep our memories with me forever.
Happy Birthday to my Bonus mom, Phyllis
Love Lisa, John, and Hunter