That’s It

I’m officially done. We read of Hezekiah crying and wailing, upset that God has told him to set his things in order as he’s going to die. His tears move God and the sun goes backwards.

Nope. Not for me. The pain is unbearable. I’m tired of being woken by it. I’m tired of being sad over my children’s struggles. Struggles I can’t help. I can’t anymore. My lungs seem worse, I’m more breathless with exertion But maybe all would be? Maybe I’m imagining a decline. I just know that carrying loaves of bread to the car made me breathe hard. Maybe it’s because it was raining so I walked too fast??

I revelled in the jumping happiness when my girl received her Temu Pharaoh hat. I tried to ignore how inept my almost ten year old was when we made these below for a “ladybug party” suggested in her Preschool book. It was physically and emotionally draining, dealing with three children of very different ages but all as clueless as the four year old. Nothing helped-not showing, demonstrating, slowing down… I regretted doing such a simple activity as it took a lot out of me physically and emotionally. If they can’t copy and follow along with big objects, how will they read well? Lots of adjusting to put the blueberry head where it should be, and the wings how they should be.

I suspect Cosentyx has caused abdominal problems.

I tried so hard to find positives even though the disease is progressing and making it hard to do my children’s hair and to cook- my arms this time, not only the back. AS stinks.

And then..no sleep! Both girls are awake! Both twins! Help!🤣🤣It’s 3:44am, been up since 1:47am. Bedding and pyjama changes as they weed and pooped through!

My life is crazy. My husband was telling me about a colleague whose sons have now left home and how he and his wife sometimes have no clue what to do with themselves. He said I too would be so lonely and bereft.

Not really! I always enjoyed my own company and I’d finally read books for myself, not on therapy! But, I’ll never have an empty nest. I’ll always be supervising and making sure this child doesn’t hurt that child and finding things for them to fill each day. 😩

I have seen some adult day cares for people like my children. Maybe in my 70’s I’ll get a chance to breathe during the day on week days. It’s my only hope for a break from the relentless supervision, breaking up arguments and keeping the other safe from the other and lack of mental and physical rest. We’ve looked even in other provinces for centres but they only help children with moderate special needs, not severe like my non verbal angel.

Help!