You were given this life because you are strong enough to live it.
Am I? You better get ready for this post! Strong – it can mean many things but here are some definitions – solid or stable; healthy; thriving; able to resist wear; energetic. Those that are around me outside of my admirable, fierce, intimate circle of friends think I am a ball of energy. I am constantly moving, talking or doing. I wonder if they think I sleep eight hours a night, have very little stress, and my life is like riding a unicorn that poops out glitter? It is everything opposite of that. I AM EXHAUSTED! Not tired but EXHAUSTED! I am stable – well this could be debated by some. Ha, ha. I am trying to get healthy. Seriously! I have reached out to my neighbor, who is a personal trainer, to help me with my food issues. I know you need to exercise as well but food is my problem. As you know, I hate to cook and add all the other crazy in my life on top of that I would just rather eat doughnuts for every meal if I could. Or cereal. Too bad Grayson can’t eat cereal because Kevin would be in trouble. It would be cereal for supper. And it is only by the grace of God that I resist anything but lately everything has been wearing me down.
My best friend, my husband, my Kevin stays stressed but I can’t go into detail here. I worry about him having a heart attack in his early forties. I wish he could let go of a lot and enjoy his life. I don’t want him to be sad or angry. Here I am talking when I struggle with the same.
I will forever be sad over Grayson. I just will. I don’t want to hear any stupid comments about being thankful I have her – of course I am thankful with so many children and teenagers passing away too soon here on earth. But most people don’t know what it is like to have a 19-year-old who has to be in diapers, has to be fed, clothed, bathed and can’t do anything to take care of herself. Not only does she not have any fine motor skills (she can’t grasp anything – not even my hand to hold) to point to what she needs and/or wants but she is also non-verbal. Most people don’t know what it is like to grieve every day for years and years and years. She can’t even sit up by herself. EVERY SINGLE DAY of my life I face sadness. I wake up every morning just hoping when I walk in her room I don’t find her dead from a stupid seizure. She can’t tell me what she wants to eat. I don’t know what she likes to watch on TV. For years now we rarely see her smile. She even looks sad. So that doesn’t help either. If she seemed happy I would be able to function much better. I feel like the worst mother ever because I can’t tell you these things about my own daughter and I can’t help her and I can’t change anything! I hate all the drugs she is on. I hate she can’t say “I love you, Mama!” I hate seizures that she has most days. I hate that I can’t pick her up and dance around with her anymore because of her size. I hate that I can’t lift her at all. I hate that she doesn’t sleep at night and sleeps most of the day. I mostly hate that of all people, most of my extended family treats Grayson terribly. There you go. It’s in black and white. It has been typed out. They know it. Others know it. Yet they don’t change it. I know I said ‘hate’ a lot and I don’t need the comments on how you shouldn’t use that word. Come spend a day, or less than that even, and tell me how you feel. I am tired of feeling overwhelmed with all the pressure of what needs to be done for Grayson yet I have very little support. I need to be trained very simply and slowly on her eye gaze (you’ll have to look that up). I want her to have a voice more than anyone but who supports me to help her do this? I want her school to help her and other students like her who can’t use an iPad or touch screen. She is in there! I just need a team of people who believe in her and will help her. I am so thankful for her nurse, Grace! My gosh. She goes out of her way, above and beyond, to not only help Grayson but this entire family (of course Reesy, Bella, and Copper included). I feel like a failure with her new puppy, Copper. We rescued him in November but he is 7 months old. I also need a team of people to help train him and support us in training him to be a therapy/service dog. The thing is MONEY! Everything is MONEY and this is something we have always been short on because of our situation. I have been a stay-at-home mama for most of Grayson’s 19 years. We also NEED a one story, open floor plan, handicap accessible house. We have chunks of sheetrock ripped off the corner of our walls because her wheelchair doesn’t fit very well in our house. Her bedroom is tiny and barely big enough to fit a bed in because we had to enclose a room downstairs for her years ago when we couldn’t lift her upstairs anymore. Because of where the ramp into the house is located I can barely get her in and out of the house EVERY SINGLE DAY because we hit walls while lifting almost 200 pounds to lift and turn her wheelchair to get in the door. I feel like I give all my time and efforts to help other people with no payment because I just like helping people. I don’t want payment. Can’t someone help us with these things? Why don’t people care for people anymore?
I worry about my Kloie being hours away from me and wondering if she will be okay because her school is so difficult. When I see her it is like sunshine on a cloudy day. It scares me to let her go back after she visits for a long weekend. We are even talking about colleges now and I want to cry every time because she may move very far away. It is extremely hard for me not to be selfish in that area.
I am sad about feeling isolated. Old friends eventually stop asking us to do stuff because we always have to say ‘no’. We can’t do what other people do because Grayson can’t. We can’t go where other people go because Grayson can’t. I don’t do anything on a whim because it takes days to weeks of planning on how to take care of Grayson.
And my list goes on BUT as always promised I will try to Look for the good . . . so for today, here is the good . . . I am doing pretty good on my clean eating plan. Please comment below or send me messages of some good because I am in serious need and who knows I bet your comments will help someone else. Much Peace and Love Y’all!