My machines this morning that keep me here. My junky table with a myriad of things from my daily adventures. See the dried flowers brought by my big brother yesterday that didn't make it to a vase. This is my "spot" where I revive myself literally with machines, reading , writing, praying, and reflecting.
In my mind today, I'm thinking about birthdays and trips around the sun. Beware! I'm going to be very raw today. I'm going to give you a peek inside the life of living with PMA/ALS. It's not in the least bit glamorous.
This morning I was roused from my sleep by Ken. He kissed my forehead and whispered Happy Birthday. He said, "You look beautiful as an almost 50 year old woman." I smiled under my mask. Pointed to my Buddha belly and said, "Yeah, right. I'm grateful you still love me." He reminds me all the time that regardless of my physical appearance, I'm still the girl he fell in love with. He embraced me and we spent some tender time together. It's in these tender moments that I want to catapult back in time and grab him and squeeze him with all my might. I want to lie in bed together all day and let it just be we two. Reminiscing about our journey together and counting our blessings. Acknowledging the tough times were easier because we have had each other. Thanking God for our children, grandchildren, family, and friends. Ken is so much better than I am. He never forgets to make each birthday special. This comes from being a planner not a procrastinator of which I've been guilty of many times in our marriage. We surprisingly still make such an amazing team. He begins asking me what I want for my birthday weeks in advance. I'm not worthy of such an awesome and attentive love. I really want for nothing because he has given me everything a wife and mother could ever want. What I was want now is not attainable anymore because we can't catapult back in time.
It's my birthday but we keep the daily routine. On Saturday's our routine has a little wiggle room. We sleep in a bit because Ken doesn't have to work. We have always coveted our Saturdays together. He then struggles to sit me up on the side of the bed, moves my wheelchair, and gets the lift. He places me in my chair and we go have breakfast together. He makes my coffee and oatmeal. We talk about life as I roll around a sleeping household in my bra and diaper. I told you to beware! Lately this happens more often, my lungs begin to crackle and wheeze. Ken wakes Ben to come hook me up to the cough and suction machines. These times I feel like I'm drowning on dry land. It takes so much of my strength. This is becoming our new normal and I don't like it.
My sweet Ben is diligent in caring for me. When I look at him I see a young Ken. I hope God gives him someone special to love and love him back because his beauty is hidden well. Like I said, he is so much like his father. I pray he finds his own "Sarah" that will uncover and appreciate his unique splendor. Here's another birthday wish or prayer of mine.
After the crisis is averted and my lungs are cleared, I usually start my reading, praying, writing, and reflecting. So here I am typing through tears and getting these emotions in order so I will celebrate 48 trips around the sun with my friends and family. I want to live each day as if it were my last and I'm doing a pretty good job of it don't you think? Although my body is becoming misshapen and weaker, I'm here and loved. What other birthday gift could I ever want? Thank you for giving me reasons to keep rolling. Thank you for the gracious birthday wishes. Each and everyone have made it into my heart and will feed my spirit. Happy Birthday to me.
Sarah Anderson Alley
Quote of the Day:
"If you quit, then it's the beginning of the end. Don't ever stop."
For you Ken, I won't Ken. I won't."
Note: I felt compelled to share this with you not for pity but because wherever you are in your journey, stop and look around. Embrace all the good and blessings in your lives despite the bad. You will miss your life because there is no magic time machine. This is it. This is what you get and it's only as beautiful as you make it. I want you to love the life you've been given. Hey, it is my birthday! Can you grant me this one wish?