Tag: autistics and hair

I shared the above this morning in the SOP Reading Club that Claremont SDA Church has formed. I hope it will be a blessing to anyone else out there. A blessing and an encouragement.

Jesus was never cold and unapproachable. The afflicted often broke in upon His retreat when He needed refreshment and rest, but He had a kind look and an encouraging word for all. 4T 488.1

Good morning🙏🏾

This reminded me of the patience mothers also ought to have. I recall from
AH how “frequently the call of mother, mother is heard…” and the mom has to stop whatever she’s doing and patiently and kindly be interested in what interests the child or care about their little woes even if in mom’s mind, it’s nothing.

This is so hard especially when sick. Like the disciples, I’ve even heard my older children telling my one twin 4 year old daughter to not come when I’m resting, but she will insist, “I need to see Mommy! I want to talk to her.”❤️🥹So I often yell out that it’s ok, she can come into my bed.

When I told my children that my recent appointment proved that my pain was truly increasing as things were getting worse, my 17 year old exclaimed, “But you’re always so cheerful! I didn’t know!
Mom, you really don’t need to force yourself. It’s ok to rest more and to not be so happy.”😅

That’s what matters most. That THEY feel seen, loved, cared for and secure. I want them to see the Saviour’s love through me.

I will apply that to whatever we are involved in and in whatever sphere we are in. May we ever be patient and warm as opposed to “cold.” Welcoming even when we need “refreshment and rest.” May our “they” that is watching us see Christ’s love and patience through us.

Yesterday was awful. I am usually awake by around 5am to study God’s word-on weekends. And during the week it’s 4am. (Mainly because my husband wakes at 4am so he can also do his study before going out to run before work.) It gives me time to try get the stiffness out my bones so I can exercise a bit.

So, I woke up. I couldn’t shake the pain and stiffness. 6:20am I was out the bedroom and moving but still, the stiffness and heavy pain persisted. You know how AS includes swollen bone marrow? It’s as if every single bone in my body was struggling with it, not just my pelvic bones. (Maybe they were! I just only have had MRI on my pelvis and that’s where we know for sure my bone marrow is swollen.)

By 8am, I was struggling. I struggled to take bedding off the bed. Then I wanted to lie down. On the unmade bed. I didn’t have strength. I am now always using the little ones to at least put the laundry into the washer for me- I did two loads yesterday/ usually I do three. We are eight! We have a lot of dirty clothes especially when there are ADHD girls who soil their clothes daily. Badly soiled. Who forget to wear the T- shirt they put paint on that I now keep as their ‘eating top’ so their clothes don’t get food on them. My poor nine year old eats like she needs a huge bib. But I’m too busy to remind her at mealtimes to put it on before she starts eating.

I did go grocery but there too, I struggled. I had to lean against the till behind me. My word, yesterday was horrendous and I’m still unable to bear weight on the worst leg even now at 5:16am. The pain was indescribable. Just folding four pieces of dry laundry killed my shoulders too. I wanted to weep. What is the point in being alive if I can’t do much?

I’m SLOWLY tightening my nine year old’s locs. I just can’t stand long and the fatigue is all encompassing. So, there I was in the evening standing doing her hair before evening worship. I’m in the left bottom corner of the security camera.

I was weeping silently. Before this, we’d been listening to One Voice singing I Can Only Imagine. It was already emotional. Just to imagine myself able to RUN to God, able to kneel at His feet without pain, imagining all of us in the family-me and the children-made whole…

See, I’d made my for old pictured at the top of this post, cry. Like her twin who’s hated us touching her hair forever, she’s now also not into her hair being washed. But it has been too long. I started preparing her last week for a b hair wash. She kept refusing. My teens had said they’d do the hair so I don’t hurt myself. Except my poor angel was too stressed and was crying and her sister just couldn’t do it. I went into the bathroom, told her I was just going to wash her hair with plain water, it had been too long, and just water, no shampoo THEN water. (Hey, anything is better than nothing.) The tears rolled down her face. We have those little rim cap things that ostensibly prevent water flowing into their faces (doesn’t really do that very well but it’s better than nothing) I asked her sister to hold the face cloth over under the rim of the cap thing so no water rolled down into her eyes and just ran as much water as I could over her hair, squeezing out and scrubbing the scalp as much as possible. But the tears came. “Mommy, why are you doing that. Please stop, Mommy.” It was awful! I felt so sad for her.

I could not wash her twin’s. I was in too much pain by then. So the teens will do it in batches-mostly really just using a very wet cloth and shampoo for her because she’s even lied about to handle her hair being touched,

It was a combination of pain, heartache and hope that led to my secret tears as we watched. I truly needed to feel raised because I was down. It was emotional, watching my not very talkative angel standing mostly still sound while the songs were playing. She too feels the emotion in the songs so doesn’t do her usual racing around.

I watched videos of dads talking about their autistic children, the dreams they had that they’ll never be able to fulfill. Playing with their children, playing ball…It was truly cathartic to cry as they too wept. I get my support and validation off my feelings from the emotions other parents are feeling that mirror my own. The suffering when the world hurts the child- light, noise, people, whatever… It’s a terrible worry, not being able to make life easier for them.

And so, I wept.

Usually I go hide in my room at prayer time as sitting with everyone during worship calls my daughter to come sit on me which strains my bones. Add the womb pain and I definitely haven’t gone to pray in the evenings. But every evening, she’d come running anyway, insisting that she has to talk to me.😅So I decided to stay so she doesn’t feel the need to burst into my room. It worked. She got her fill of me and didn’t follow me into the room.

And my heart! She kept trying to sit staring at my face while hugging me with one arm around my neck. It felt kinda weird too, being stared at while singing!😝But it just showed me that yes, I’m unable to do as much as I would have liked, yes I had even googled to see if anyone had ever done assisted euthanasia due to AS suffering (found one in Canada) but I couldn’t leave this world yet to rest even if I wanted to. So I took a photo.

My children need me in whatever state I’m in. I hope we can all have the energy to bear our children while sick. To love them when we too need loving and nurturing. She doesn’t care that I didn’t finish putting her clothes in her wardrobe, that I didn’t finish ironing her underwear. (We have spiders on the washing line. Almost everything gets ironed. More so after Ammy’s terrible hospital admission due to an infected spider bite) She just wants me. And I’m here. That’s all she needs. And so while I wait for release from this suffering, I wait knowing my children would prefer it that way anyway. Waiting. Not yet released….