Fit to parent a differently-abled child….
For the past month or so, Erica and I have finally found a way to divvy up Maxwell’s night time routine- we take turns each week, on who puts him to bed. This week (1/14/19-1/18/19) has been my week to give him his meds and put him to bed. However, in an effort to assist Maxwell’s nurse, who’s pregnant, we’ve now added a bath to his nightly routine, opposed to him being bathed in the morning by his nurse.
Thus, after giving Max his bath for a 2nd straight night, I’ve realized how big he’s getting. If you follow our family on social media, then you know that Max doesn’t walk yet, and you also know that he’s getting bigger by the day and seemingly the moment. So, giving him a bath is no easy task, when it entails picking him up out the bed, bending down to put him in the tub, picking him up out of the tub, and then putting him in the bed. It’s difficult because we have to pick up Max and his “live weight” with no assistance from him and often times, he may stiffen up and extend. That’s the bath routine.
Similar to the bath routine, is the task of putting Maxwell in and out of the car. Unfortunately, our family has yet to purchase a handicap accessible vehicle, and not only is difficult at times with getting Maxwell in and out of his car seat, it’s also the task of lifting his wheelchair in and out of the car. Needless to say, parents and/or caregivers to differently- abled children, no matter their age have to be “fit” for this lifestyle.
As I write this blogpost, my back is hurting and my neck is stiff and to be quite honest, I don’t know if it’s due to my workout today or, giving Maxwell a bath. I surmise, it’s a little bit of both. Whenever I feel these kind of aches, I always tell myself, that I must get in better shape, in order that I may be fit enough and strong enough to do what needs to be done for Maxwell, to live a Super Mighty Life.
In closing, if you are reading this as a caregiver to a child, spouse, parent, family member, or friend— how important is fitness for you? How could living a healthier and more fit life be beneficial for you? Also, are their trainers or workouts, that could be beneficial for caregivers to work on? Lastly, I ask that you keep all caregivers in your prayers! It’s no easy responsibility.
Super Mighty Max Nursing Update
So, its been a while since I’ve (dad) last posted on Super Mighty Max, not because I’ve lost interest or ran out of topics to write about, but ever since I’ve started my new job in February, life has gone from 0-60 real quick. Thus, needless to say, its been a combination of not having the energy nor the time to write.
Nonetheless, since then, as you may or may not know, SMM now receives private duty nursing services in the home, and it has been a frustrating and uncomfortable journey. Thus far, I believe we’ve been through about 3-4 nurses, hoping to find the right one. There was the nurse that invited her boyfriend to the house to bring her lunch, smelled like a smoke stack, and just wasn’t going to work out. Then there was the nurse who was googling me and my church, changing the temperature on the thermostat (as if he paid bills in the house), and making Maxwell’s batch of food completely wrong. Lastly, the nurse we most recently fired, was seen on camera leaving Maxwell unsafely unattended on the couch, changing table, and decided to moisturize his body (scalp and chest) with Maxwell’s coconut oil, fail to switch gloves, but use the same glove to then moisturize my son. No, no, no, no, no. no! What was wrong this dude, what is wrong with some of these nurses in the field of private duty nursing!?
Unfortunately, when we did find a nurse that we liked and truly felt had SMM’s best interest at heart, her father un-expectantly died. As a result, they decided to bury him back home in Kenya, and we haven’t seen or heard from her since May 3rd. So, while private duty nursing has been a blessing to have, it has not been without its heartaches and headaches. As they say in the old-school church vernacular, if you know the words of prayer, then pray our strength in the Lord!
Stay Super, Make Mighty Moves, Be Blessed,