Feb 2016  

Mike doesn’t feel well most of the time. This is why I celebrate the good moments. This is why I’m always so happy to post a photo of him smiling or a video of him dancing…this right here is why those moments are so cherished. He doesn’t walk well but he doesn’t sit content either. If he’s awake, he’s either emptying out a closet, organizing items on a surface (just moving them around), pushing furniture around, or walking around the house picking up pieces of dirt and putting them in small piles on the nearest surface. He can’t think through actually sweeping or vacuuming, I’ve tried to let him help clean for real and he can’t. He doesn’t put sentences together correctly often. (Like when he knocks over the bars he says “I fell you over, mama”) I post this to share what his days really look like since you only see the highlights on facebook. That can be so deceiving. This video shows a quiet house because Kenzie is at a birthday party and Caralyn was sleeping and no dogs were barking. Usually there is also the chaos of dogs, a 6 year old and newborn in the background. I was supposed to take Kenzie to the birthday party but with Mike being so unsteady and needy today, I’m the only one who can handle both the baby and Mike’s bad days…so Kayla had to take her to the party and I stayed home. He walks to the bedroom to lay down because he doesn’t feel well and within moments he is walking right back out here and the same scene plays out again. That is emotionally hard on me as a caregiver…him coming out over and over again telling me he isn’t doing well and saying he wants a nap. I lay him down, he comes back out. I can’t make him better and that’s hard. For being almost 4 years past Glioblastoma diagnosis, Mike is one of the “lucky” ones to still be alive.  
So when you see the photos and videos of Mike smiling and being funny, you will understand a little better why it warms our heart so much.  

One response to “Feb 2016  

  • Leah B. Edwards

    Thank you for your honesty and transparency as you share your and Mike’s daily struggles and joys. My dear friend, Debbie, was diagnosed with Glioblastoma the end of June and she passed away December 12, just 5 months past diagnosis. I tried to be there for her as much as possible being 14 hours away-I helped her after surgery, again during radiation, and our families spent Thanksgiving together. I talked to Debbie almost every day. So I watched the progression of this ruthless disease, and how it took away her identity and eventually her life on this earth. She spent those 5 months in grief, confusion and desperation as she tried to hold onto her life and identity as she knew it. Please know you, Mike and your family and friends are in my prayers. Although I understand you don’t see yourself as a heroine caretaker, you are a hero to me because I know some of what you do each day. When you feel weak and powerless, please remember there are many of us praying for you, and the One who is all powerful holds you, Mike and your family securely in His hands.

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