Instant messaging is no longer instant for me. Texts seem to have a two to three day turnaround these days…if any at all. Keep your messages coming though because I do enjoy hearing from you and my band of friends do a pretty good job of helping me respond. I do, however, have a couple of friends who like to go rogue and insert their own responses to things. So if you get a text from me that is inappropriate or doesn’t sound like me, it isn’t. It’s likely from Greg Lawler…
We laid our boy to rest two years ago today. My heart aches with a longing (it is really hard to dictate while crying) to cuddle my boy which is kind of strange because he never was one for cuddling…he was always too busy unless, of course, it was to cuddle with his big sister to warm up after a bath. Nonetheless, there is a lot of longing going on today.
I’ve definitely noticed a progression of symptoms the last couple of weeks. My ability to talk has taken a significant hit due partly to an increasing shortness of breath. I can feel it in my chest but I can also feel it in my diaphragm as the muscle twitches are beginning to travel down my abdomen to my diaphragm. I have been feeling these twitches for the past three years… they started in my left leg and slowly made their way to my right leg and eventually my arms as this disease progressed throughout my body. They aren’t painful but they are constant and can, at times, be either annoying or distressing. I’m finding them particularly distracting now that they are in my abdomen because they feel exactly like when I was pregnant and felt my babies kick for the first time. I remember describing the sensation like little butterflies and those butterflies are back. What was once an anticipated and joyful sign of new life is now a sign of my body shutting down. This is another scary development and I really wish my body would find a plateau and sit tight for awhile.
I’m really not sure what else to say. As always, prayers are greatly appreciated. The Bible tells us over and over not to lose heart and I’m having a hard time heeding that command. I’m stuck between wanting to do this whole journey gracefully but also wanting to kick, claw and scream my way through it… my reality will likely fall somewhere in between. Thank you, dear ones, for holding us all up in prayer the deeper we get mired in this shitshow. (GREG!)
Love, love and more love.
Rudy's Beat 
Love, Hugs, Prayers dear Trish
Prayers, dear one.
Praying of course and praising God he put people like Greg in your life to make you laugh! ‘God, help Trish drive this road. Let her coast to enjoy the scenery. Give her what she needs as only you know what that is hour to hour.’
Love you so much dear Trish. You are such a brave and beautiful woman of God. Praying daily sweet one~
Trish, I did have a nice little chuckle about the “Shitshow”, Thanks Greg! Trish, You are always on my heart and in my prayers. I love your picture on the bed laughing while Greg, (I assume) is concocting some delicious texts. May the Lord continue to sustain you and may His presence be so real to you each moment. I love you dearly and am holding you close in my heart tonight.
Praying nightly for you Trish. Truly I am. The last 2 years. 3 am. Yes. It’s true. Somehow at my age ( I am not complaining) I have to make a nightly run to the bathroom. When I am back in bed a lot of the time I can’t go to sleep. Sooooo. It’s truly a prayer time. And I have a List and I count them on my fingers! You are at the top! First Finger…… praying for you each night. 3 am ish. And a few others in difficult situations as yours. M Y heart goes out to you and I know I have learned so much from your openness, all your heart felt sharing, and your words of wisdom through the years. I am remembering a favorite author and speaker. Elizabeth Elliott. I am sure you know her. The wife of the famous missionary Jim Elliott. She said something like this —- Paraphrased. “ we may not understand why our circumstances are what they are. But we know WHO is holding our Hand and Who we can trust”. So I pray this for you continually. That the Lord will be ever present with you in the midst of the trials, especially the physical ones —— and that You can know His comfort and help! Love you Trish. Oxoxox Lorette.
Prayers to you, Trish. And your wonderful family. I am thinking of you all – with special prayers in the anniversary of Rudy’s passing. What a joy he was to many us – especially through your blog posts. I still remember meeting Dr. Dan when I started at Mattel 5 years ago – and it hit me that I knew him though your posts. It made me instantly form a bond with him and so many others at UCLA.
Please know that I continue my prayers for your health. I humanly share with God how unfair it is (and so much more I don’t want to say on a post). And then I pray harder for you, Rolf and the kids. You are such a light of inspiration and faithfulness. I’m so incredibly thankful to know you.
Sending you dear Trish endless love and prayers!
Praying daily for you and your family Trish. There’s no understanding what you are going through, but God….. is love. This we know. I pray for a sense of His presence continually for you. That you will fell His big strong arms around you all the time. My love to you, favored daughter. 💕💕💕
Continued prayers for you and your family. While we don’t understand why, we know who is in control of our destiny. I pray for you every day.
Gregg makes me laugh – yup! The disease is that ugly. So glad he is able to help you and make you laugh!! It truly is a miracle that there is still moments of mirth in all this!!! I remember this day two years ago …. and how you all reached out with love to every person walking through the interment line! And you are still connecting with us in love!! I hate hearing about this ticks – terrible and tormenting I am sure!!! All I can say is I am so sad for you and love you so much!!!
I saw a hummingbird in my yard just now.. I knew it was a sign from your little man to check in on you.
I am stopping in Church today to light a special candle for both of you. Big hugs through the internet for you today! xo
Always praying twice a day for you and your family as they help you battle this horrible disease. Love you so so much, my dear friend.
Praying for you, Trish.
For You, Rolf, Wil, Max, Olivia.
Love you all so much!!!💞
❤️