I woke up this morning feeling sleep deprived, grouchy and resentful of the damn call button my son uses to ring me at night when he needs to be turned. I say I’m resentful of the gadget instead of my son because I understand he needs me 3 to 4 times a night BUT I can’t stand that ringing tone in my ear waking me up from much needed sleep!!!!
The drama just continues. I woke up needing to change my perspective. The willing nights and days after his surgery of me going at it with my whole heart and soul to care for him gently and lovingly are leaving me. Part of it is because he is back to school and I am started to think more about myself and MY future which of course takes up some of my time and energy.
You see, if God doesn’t intervene, this disease is going to take his life and his brothers life. The disease has a statistic of taking these boy in their twenties. My oldest with Duchenne is already 18 but in good health, thank God. I can’t even imagine being without them. If caring for them right now seems like a lot of work, as their disease progresses, it will be even more work.
I was touched while in the hospital by a calling. A calling I don’t really want (I’d rather be a dancer or an artist of sorts) but a calling that has pulled at my heart and has resided in there turning into passion. I’ve come up with a plan to be able to live (and I mean it, LIVE) life after they are gone. I am planning to take an adventure first. One that can take 1 week to 1 month. I placed this plan on my husband’s lap one evening and invited him although I know it’s something he would never in a million years dream up nor ever want, but I told him regardless of him, it’s what I AM going to do for ME.
You see, I want to take a healing adventure. I am an endurance athlete of sorts or a “wanna-be”. I’ve been doing CrossFit for 2 years and enjoy long runs. I recently purchased a road bike and plan to ride in the MS150 next year from Houston to Austin. My dream and plan is to ride/run across the states or all over the states in an organized running and/or biking adventure. I just know I will meet myself in this journey and make piece with the pain I will then have to live with for the rest of my life till I go to heaven and see my boys there. After this adventure, I want to be able to come home and get back to what God has skilled me with, care giving. So this week, I signed up and I am going back to college. And let me tell you….It’s been a journey that has been testing my patience. I have been struggling with many little tiny things that get in the way of me fulling enrolling into the class. It sucks. I have to go back to the campus today and I hope to get everything resolved so I can start classes on the 26th. I really much literally feels like a test at every phone call I make and wait for hours, at every line I stand in and wait for hours and at every time I sit in front of the computer and feel like I am living in the time when computers first came out and needed to dial up! What is up with THAT! I thought we were in the times of fast internet!? That hasn’t been my experience.
My dearest friend who went through nursing school herself while having twin babies at home and a daughter (she is my childhood friend so I remember that time well as I heard her tears and frustration and wanting to give up) said, “It is a test. A test to see if you want it bad enough.” OF COURSE I DON’T WANT IT THAT BAD!!!! Who would? I feel called into the PICU Pediatrics ICU where trauma children come in, where parents are distraught, where death could very well happen. But who else to be there for these parents and care for these children if not a mommy who has gone through the same thing? Empathy people! That’s what we need more of in this world! I feel it gives my life such BIG purpose after my purpose with my children is taken away. So….as any endurance athlete would do, I just have to keep pushing onward to get to the finish line. This reminds me of a verse:
The Need for Self-Discipline
24 Do you not know that in a race all the runners run, but only one gets the prize? Run in such a way as to get the prize. 25 Everyone who competes in the games goes into strict training. They do it to get a crown that will not last, but we do it to get a crown that will last forever. 26 Therefore I do not run like someone running aimlessly; I do not fight like a boxer beating the air. 27 No, I strike a blow to my body and make it my slave so that after I have preached to others, I myself will not be disqualified for the prize.
-1 Corinthians 9:24-27
Aaaah, that hit the spot. I feel better now that I put my life back into perspective through writing. I will get V up in 30 minutes and bath him and get him dressed for school with gusto. Thank you blogging world for helping me through this grouchy morning. Can you somehow give me the feeling of being well rested too?
Oh and by the way, before I go. Even though hubby was totally like “I would never want to vacation on a journey that requires me to live primal like with no fancy hotels, no beach with a fixed drink on hand”, has started to really workout for the very first time in his life since boyhood. He is 43 ya’ll!!!! I think he kinda loves me 😉
Talk to you laters!
Day 1 of no pot (I will keep this tally at the end of my posts going forward) I am positive I am going to feel the absence of my new habit today. Keep me in your thoughts and prayers. It’s a good thing there is nothing I can do about that one. When it’s gone, it’s gone. No way of getting it so I guess I will be on the look out for new ways of coping through life.
Ciao beautiful people!