Living with disabled children

 

Two weeks ago, and last week.                                            July 7, 2023

‘Can you thank Me for trusting you with this experience even if I never tell you why?’

Helen Roseveare shared that God spoke to her the above words within her situation of suffering https://youtu.be/b-BLCXWfXPs

Hearing the above words is like aha, say what?  

I am feeling ashamed that I have never heard my circumstances so ‘clearly’. I remind myself in my down moments that I am privileged to be able to take care of Anke and Markus. That my family is my life assignment.

But reading and understanding that God wants me to thank him for trusting me with my circumstances? Trusting Him for allowing Anke and Markus in my life? Wow!

So I want to ‘speak it: thank you, God, for trusting me enough to have Anke and Markus in my life. To equip me to love them even more than what I think I would’ve loved them were they ‘normal’.

Another day closer…

It is the 7^th early morning continental breakfast for a B & B guest. I put in great effort sourcing, preparing, and presenting the breakfast. This breakfast is part of my primary source of income. This is what I do in helping generate my portion of the income we need for our monthly budget in managing our family of 5 adults. I am happy to be able to offer this service. 

In the process of preparing the breakfast I became aware of something sticky on my right-hand thumb. Without my reading glasses I saw tomato sauce on my thumb? But I did not use tomato sauce? After licking the red stuff off my thumb, I realized it was blood, I cut myself without even realising it. But how and where?

Loadshedding is not helping.

Am I losing it now? I am in my 71^st year on earth (after all) and another day closer to my end? Is this part of my writing on the wall, part of my getting older script? 

But what about Anke and Markus?

Nah! I am working on rescripting things in my being. My thought processes. God is trusting me with Anke and Markus! Do I trust God trusting me?

A parent is a parent and caring for their child is in the parent job description. Lifelong. God trust a parent by giving him/her a life assignment called a child. Be it hard or not. 

Parenting is part of our sanctification process.

Caring for Anke and Markus teaches me ongoing life changing lessons. Not to give up. To actively (try and) see clearly in every moment of my existence. That every moment is enough. God has only my best interest at heart. That I am loved. God trusts me. He has been by my side as father to Anke and Markus for more than 43 years. Sanctification. Submitting. Day by day. It is enough.  

My severely disabled beautiful children, nonverbal with sensory issues and no self-care.

It is tough.

Some days I feel only like a personal care attendant of two strangers who cannot walk or talk, two people I happen to love so very much that it sometimes hurts. Can you thank Me for trusting you. Lying awake sometimes at night thinking how much I long for my real children. Wont they please come back. Please! Can you thank Me for trusting you.

I find myself in uncharted territory with my children even to this day. Forty-three years later, especially at age 71.  

This past Sunday. Mustering the strength to give Anke and Markus a haircut. I call it hair cutting acrobatics. Anke hates it most of the time, protesting until I have finished cutting her hair. Markus is so weak that I have mastered the skill of cutting his hair with him lying on a plastic sheet on the carpet. I literally climb all over him in a squatting position lifting his head as needed to get to all sides. It is challenging and at the same time very funny. I am exhausted afterwards. My reward? They look more beautiful than half an hour earlier! And I love them with fresh love.

Post haircut. My body aches more than usual but I am okay. I shower to rid myself of all the fine hairs Anke brushes off on me. My body hurts. Then what happens from time to time, while showering after such hair cutting intimate interaction with Anke and Markus I find myself crying thinking of the craziness of all of this. I would rather have my children go to a hair salon, maybe drink a coffee while waiting their turn. But then again this is what it is, repeating the hair cutting ritual hopefully only in 5 weeks’ time again. Can you thank Me for trusting you.

The Anke and Markus scheme of things is in a sense scarier in terms of our reality of getting older. It is scary seeing Anke and Markus getting older and weaker. Seeing us getting older and weaker. Please God help me trusting you!