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.
One of the most widely sung hymns in the African-American church tradition, has to be Blessed Assurance, at least it is at most of the churches I’ve been a part of. In my opinion, it’s such a powerful song, mainly because of the lyrics in the refrain. Song says,“This is my story, this is my song, Praising my Savior all the day long; This is my story, this is my song, Praising my Savior all the day long.”
So, here’s what stands out to me, WE ALL HAVE A STORY! WE ALL HAVE A SONG! My story may not be your story, and my song may not be your song; but it’s my story and it’s my song! You ask me, “well, what’s a story and a song?” For me, the story is made up of our experiences, hopes, hurts, trials, tribulations, and testimonies in life. Our song, are the words of praise and thanksgiving, for making it through what we experienced. Watch this, even if we’re still in the storm, we sing a song because we know we’re coming out of the storm.
What’s the point of all this?
As men and women who have the opportunity to parent, super, mighty, and blessed children with special needs and disabilities, at some point we need to ACCEPT our story!!!!!!! Accept the fact, that your child has Cerebral Palsy! Accept the fact, that your child has Autism! Accept the fact, that your child has Down Syndrome! Accept the fact, that your child has ADHD! Accept the fact, that your child has Cystic Fibrosis! Accept the fact, that your child has Dyslexia! Accept the fact, that your child is Hearing Impaired! Accept the fact, that your child has Seizure Disorders! Accept the fact, that your child has……..!!! I’m sure by now, you get the idea. We can accept our story, because it’s our story, and it won’t change unless it’s God’s Will for it to change! At the same time, if it’s NOT God’s Will for our story to change, life won’t get better, until we accept our story!
The Good News is, once we accept our story, God will then reveal to us ways for us to find empowerment, purpose, destiny, mission, peace, and praise in our story. Then after we’re feeling empowered, purposed, destined, on mission, and peaceful, we’re now ready to sing our song of praise!
Yes, my child has Cerebral Palsy, but they’re still Super, Mighty, and Blessed!
Yes, my child has Autism, but they’re still Super, Mighty, and Blessed!
Yes, my child has Down Syndrome, but they’re still Super, Mighty, and Blessed!
Yes, my child has ADHD, but they’re still Super, Mighty, and Blessed!
Yes, my child has Cystic Fibrosis, but they’re still Super, Mighty, and Blessed!
Yes, my child has Dyslexia, but they’re still Super, Mighty, and Blessed!
Yes, my child is Hearing Impaired, but they’re still Super, Mighty, and Blessed!
Yes, my child has a Seizure Disorder, but they’re still Super, Mighty, and Blessed!
This is my song, this is my story, I’ll be praising all the day long about my child who is still Super, Mighty, and Blessed!
Love, Peace, and Blessings,