I will reap that which I will sow, says David in Psalm 41. Same thought mentioned by Hosea,, and then repeated in the New Testament. Galatians 6:7-10 says,
Life has been disheartening. Extremely disheartening. This life, MY life. lost its pure unadulterated joy in 2011, the day I first started dealing with debilitating and increasing pain. The chronic low iron deficiency anemia, I could handle. Expensive – even with medical aid, I have to pay the R6000 each iron infusions cost myself. But it’s not continuous. I haven’t needed a drip of iron since 2020 and my iron has remained constant. The IBS I could handle. I knew it came every month during PMS, if I ate anything that triggered a flare up, or in times of stress. But I knew it would eventually pass. The gastritis- was not all the time- not the severe stomach inflammation that sent me to Trauma where a CT scan showed severe stomach inflammation. It was mild in early 2023 and gone this year. I hope it doesn’t come back.
I could handle the bad winters and the flus that wipe me out when my chest gets involved. I knew I’d eventually get better, or end up in hospital and then get better. But it was hard, treating the children who would have shared the viral infection with me, and also taking care of myself. (Remember the GP who reprimanded me for only worrying about the children yet my lungs were in big trouble?) But, I knew it would pass. And truth is, the less often we’ve gone to church, the less sicknesses we’ve had. So there’s a mini solution there too.
I couldn’t handle the AS diagnosis. Knowing the damage in my bones would be getting worse was a hit that sometimes still takes my breath away. “I had dreams!” I cry desperately to the Lord. I wanted to visit the sick, to do more street ministry, to go sing to the sick in hospital. Seriously!! I’ve had dying people tell me I sing like an angel. I don’t, but I think God changes my voice for their sake.😊 I wanted to be an angel before the patient died or before they went home to their extremely lonely lives (One person we saw in hospital had no family so had no visitors. That is SAD. ) I wanted to have lonely patients looking forward to visiting hour instead of watching other patients in the ward have loving visitors while they spent weary hours alone with their thoughts.
But I can’t. I won’t be able to. And the reasons not to are only getting worse.
Yesterday I felt like someone was throwing everything possible at me to finally make me break. My daughter’s paediatrician was telling me to ignore her chest pain and hope that when she reaches puberty, it will end. What??? She clutches her chest while we are seated doing school work!! She gets up to go fetch something, and the pain comes! She can’t run. She has stopped jumping on the trampoline- something she NEEDS to do even for her occupational therapy purposes. She’s not a child (in the carefree sense of the word) right now. She’s suffering. And to think I always, always was thankful that I didn’t have children with my childhood where operations and needles and X-rays and asthma pumps was normal. But now that’s gone. What did I say about being thankful and then the thing I’m thankful for being taken away?😝
I am not waiting till puberty, as he and the surgeon he spoke to said. I am going to a paediatric cardiothoracic surgeon and if she can’t help, I will look in Johannesburg. I am not going to sit still and wait like I waited while AS ravaged my bones and my lungs. She needs help NOW! Her ribs irritate her nerves! Do you know how painful irritated nerves are?? I do. I felt it with my elbow nerve surgery.
Yes, I wrote that AS is ravaging my lungs. We did a CT scan last week. The pulmonologist was quite sure that we would see nothing, but at least it could be a baseline and he could be more sure that we know it’s my ribs not opening that is causing the reduced lung functioning. Friday came and went and Monday was silent, so I foolishly thought the danger was over. ‘Perhaps he didn’t want to phone just to tell me that there’s absolutely nothing in my lungs themselves,’ I told myself. After all, he’d looked at a 2020 scan and my lungs were fine. Maybe my rheumatologist didn’t see what she thought she saw in a 2023 scan… Then the email came saying he had left a voice message after not being able to reach me. (I think he called my old number.) My lungs are NOT clear. There are areas of something in them. He didn’t say WHAT. Just that there are a few localized areas that he believes are damaged by AS that we will watch when I go back again before a year is over and that he has told my rheumatologist and primary care physician.
It was not surprising. I can’t breathe properly when exercising. But I’d let hope in. And that was a mistake. A clear scan in 2020. A scan with early AS damage in 2024. What next?
My children are also out of sorts and challenging. I looked up the meltdowns my youngest was having, just to see how other parents handle it day in and day out without losing their minds like I felt I would yesterday. It’s one thing to begin the day already fatigued and in pain. It’s another to try be something impossible to an extremely challenging child who pulls you everywhere but doesn’t always know what they want. A child who threw such loud, screaming meltdowns and tantrums that I had to close the windows so we don’t disturb neighbors. It was difficult-seeing one twin happily talking and telling me she is warm in her towel (So cute!!) while the other had to be carried from the bath -one who had been raging and screaming while in it, became louder when taken out, then screaming even louder and longer for something that couldn’t be done. (Dressing her teddy bear in specific clothes that are way too big and fall off. And she wants HER clothes on it. Even though I had even bought newborn clothes on sale at JET in the hopes she’d stop wanting people to dress her teddy in her clothes. Didn’t work. Now I need to create space and take out all clothing from the wardrobe. And that is where we store other family members’ clothes too. It’s the room with the largest wardrobe. How? Where? Where do I put them?) And with what strength when I feel broken down before talking my first step of the day?? It’s a small thing. But on top of all the other things…
But I go back to David. Despite a terrible day with no rest and nobody to cry with over how awful it was, I know God is still God. I know He is waiting for the reaping time. And I know that though I can’t do my street ministry, my hospital ministry, that I can and do minister in other ways. And I know that God sees me and is with me on my sickbed.
The first few verses of Psalm 41 assure me that what I am able to do for others is good enough for God. And that He sees me. It says,
With each patient response I give when I really just want to cry, when my older middle children make no sense whatsoever, He tells me I am good enough and will reap the reward of my kindness. When I close the windows and try figure out a plan instead of rounding on my poor child and smacking her as I’ve seen others do in public, He knows I’m doing the best I can despite the sheer fatigue and helplessness- and will reap my reward. I can’t work miracles. I can’t wake up and make her “less autistic.” But I can wake up with purpose to be better than the behaviour I’m seeing. To be the calm to her storm.
When I did my search on YouTube, the first video that came up was about an Australian mother who killed her autistic son because of behaviours like the ones my daughter has. He too was not speaking.
She’s not the first mom to kill an autistic child and she sadly won’t be the last. I don’t deserve a medal for doing what everyone who has no clue how bad it is assumes I should be doing- loving, caring, protecting, but I know how hard it is to do those things when they aren’t appreciated by the recipient and instead even MORE is expected. I know that the good I do to my children, I do to their Maker. He told me so when Christ said that whatever I do to the least of these, I do to HIM. I will not only be kind to my children, I will be kind to all God’s children. I don’t need to go to hospital to be with the sick. My phone is available for that. And so, I will do the best I can. I share my money, my heart and my time. Every time someone responds positively or with gratitude to something I share in an AS group or special needs group, I am visiting a patient. God will ease my trials while on the bed of languishing. He might not remove me from my sickbed, but He will allow me to use my feeble strength for good and not for bad.
I will reap what I have sown. And so, I sow, kindness, patience, love, tolerance, mercy, sacrifice and empathy at home and abroad. I will one day reap a brand new disease-free body and an even more loving heart.
How I wish today was reaping day. But it’s not. I wished for a sister so desperately yesterday but I had none even far away to bear my burdens with except one who despite her own worries over her niece, kept checking on me and asking for updates throughout the day. You too, as the caring concerned long distance caregiver will reap what you sow. So yes, I still can’t wait for reaping day. But I will wait. We will wait. For the trying of our faith worketh patience, boy how trying life is! But we will let patience have her perfect work so we may be perfect in Christ too. Keep sowing, even when sowing with bitter tears and hearts overflowing with pain. Sow.
They said I should write a book 