Day #21 – Rise After I Fall

risefall
Mirror mirror on the wall
I’ll always rise after I fall
And whether I run,
Walk or crawl
I’ll set my goals
And achieve them all.

Author: Brie Edison

For many years the day by day journey has been for an everyday occurrence of let’s just get things done.

I have awoken every day of my 40 odd years with the knowledge that if my legs are not walking and my brain isn’t conjuring a plan that will get myself and those around me through the day… who else but me would take the given day and slam themselves headfirst into making something of a day that has no guarantees and zero plans!?

I am writing my blog post today about how each day of my son Sean’s life has been a struggle of sorts, hospital visits, medicine rituals, late night road trips or mercy dashes… oh how the list goes on.

From the very moment that Sean was born I knew Sean had something about him that made him different, I knew that my main focus had to be raising Sean in a way that strength.pngdidn’t set him aside from other children.

As a child, he was perfect in every way… He was born with Spina Bifida but despite his health issues he was just perfect… Sean was slowly growing, in days and months but yet remained small & vulnerable for what seemed forever…

I remember this one day when he was being given his medicine… He was downright adamant that he was not having it… Hmmm, there was no telling him why he should have it, the reasons and benefits of him having it… So I pulled the one thing that I could think of that he loved to do and began to tell him ” no medicine, no shopping at target, no cars or books…” trying once more I locked his feet and hands and brought forth the syringe full of his meds to his mouth…

Screaming in an emotional mouthful… He spat it out broke free of my grip and smacked me a good one right in the eye… With what I am not sure. So I let him go and sat pondering at the wall in silence. Alone and frustrated, Steve had already left for work… Sean had run off to find his hideaway…

Sitting and venting along with questioning me, I could hear Sean talking but I paid no attention… Again he spoke “Mummy if I take my meds I will be ok soon right? Then we can go to target… Mmm yeah whatever… I said….. He pulls out a syringe full a new dose of meds shows me and says is this right… (he wasn’t even 3, he can’t even read), I remember telling him your not funny… as I stared back at the wall… He began patting my leg… Mummy Mummy… shoving the syringe in my face, medicine gone – can we go target now…

I remember asking him “why all the fuss, why can’t you just take it… I can’t fix you on my own”… His next comment was enough to fix things ” medicine yucky..wheeeeeelie gross… And it makes me poo way too much.” We never fought again over his medicine needs… Every day since… he took his meds… No attitude or frustration just !! Down The Hatch !

He was older in his mind then he was in his body… I looked at him and told him this ” you need to take your meds or you will get sicker… Not just today but forever & remember that you are not special to any other but to me”

images2YI3NZ8TYes, we went shopping at Target that very day…proudly sporting my well reasoned with black eye. That was one of many lessons that Sean and I taught each other but I never really understood how much he took in until he became self-involved in his care… He used to say things like it’s my body I know what I want… I am here talk to me…

Then one day at the hospital after his major back surgery the specialist came in and asked Sean if there was anything he needed… He said pointing at his nil by mouth tag… “Take this off please my mum will not eat and drink until I do… She always waits for me…” & then the wheelchair came into the room, the doctor said ” you will need this… You’re new wheels till you are better on your feet… Well, he served the doc a good one when he sat up saying in a definite voice just as he had that very day when his meds and  he slapped me in the eye; “take it away… It isn’t for me… I won’t ever use it… I will walk… I will prove it… No chair for me!”

Can’t argue with his knowledge of his own abilities… That very day he walked… He was smiling just as grinningly as he was on that black eye medicine day.

imagesI5NNF2T0Sean is a testament to today daily written quote:
Mirror, Mirror on the wall
I’ll always rise after I fall
And whether I run,
Walk or crawl
I’ll set my goals
And achieve them all

Sean does not need to say theses words, for he walks the walk and talks the talk every day in his many hours a week job and at a time 1-2 shifts a day… Sean was never going to be a butt ass lazy kid… he was always full of charisma and spirit. He doesn’t grumble. whine or woe. He is easy going and just gets shit done. His struggles will never end but his meds are now not given as often and he certainly doesn’t take as much as he once used to… But still, he says !! Down the hatch !!

Sean to himself; is a credit to him and his strong will… Whilst he may never be 100% he to me is perfect in every way.

So fast forward some years… and now it’s my turn… Primary progressive ms diagnosis… Two years ago the wheelchair moved in… I named it ” F U C K E R ” it isn’t truly directed at it but it is directed at the annoyance of knowing that it has become a visual status symbol that I am now struggling with; something that has taken me to using that wheelchair named ” F U C K E R ” even if it is occasionally!

Ooh, how it annoys me… Not ” F U C K E R ” but ignorance that the wheelchair brings out in others… I hate so much that people look at you with pity eyes… no one sees me for what I am… a wife, a mother, a web designer, a friend, a sister, a counsellor and my latest conquest ” A Ms-Warrior ”

target.pngEach day I awaken, take my meds… Shower n brush my hair & teeth… Prepare with my hubby the kid’s daily events… School or play. Work or home… I just get doing what needs to be done… maybe a little slower and taking a little longer… But slowly and surely… each day as it comes.

The days at times can be long and hard… The energy it takes to do somethings at times… Can leave me to feel overwhelmed yet knowledgeable in the fact that no matter what…

I’ll always rise after I fall
And whether I run,
Walk or crawl
I’ll set my goals
And achieve them all.
The Mirror, Mirror on the wall will be the testament to all that we; Sean and I have and will endure.

Signed
Author. Tanya Kelly
365daysomethings.wordpress.com

8 thoughts on “Day #21 – Rise After I Fall

    • Dearest Maggie … i so look forward to hearing from you… your words are empowering and far far stronger than you give yourself credit for.

      I hope to introduce you to my 4 men and little lady…. through my words and writing…

      Ty for the no pitty faces you are gem 💐

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  1. Oh Tanya, what a gift your posts are, thank you so much.

    I feel ashamed to say how afraid I am in the fact of all that you have been through and handle and manage every single day, of brave Sean’s journey. Just now I am so afraid about my little Delilah. I have to take her back in to the vet in an hour to get a shot to help manage her pain better than what I have to give her. She is so tiny and I can’t bear to see her suffer. Because of my mental health issues my dogs are like service dogs for me. If something happens to one of them I just come undone. And then I look at you, and read what you’ve written, and I sit up a little taller, and feel a little stronger.

    Thank you so much. This helped me so much today. Like Maggie said above you are so much stronger than I am. Bless you honey. Warrior indeed.

    Hugs,
    Maitri

    Liked by 1 person

    • I cry very little… but your response to my write up about sean caught me… thankyou for gifting me tears … i only hope that he has the knowledge that as hard as i am that he is all the better for me love… ty Maitri For your support and beautiful words

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  2. Thank you for sharing your journey. You are so strong and brave. While I admit I cry reading everything you have had to deal with it is not out of pity. It is with the realization that you do all you do because of the shero that you are. You display so much strength and resilience. I admire you. I respect you. I keep your family in my thoughts.
    Gentle hugs,
    Lauren

    Like

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