One F***ing Pin!

Has it been 2 months?

I am back to college at 43 while taking care of a family and running a business. Blogging has seemed to be put to the side for a minute.

This week my hubs went to his homeland of Ireland to visit family. I am single parenting for 10 days and let me tell you I have never missed him more!

It’s been a long week with my 13 year old autistic epileptic lung child! Medical PTSD and loneliness did Conjure up this week. One lesson learned: Just like step 4, never read IEP goals alone. You need someone with you to balance out the negative and put things into perspective.

He requires so much attention from me that it has been impossible to study. By the time I get him to bed I am so tired I pass out with him.  He loves taking long baths but needs constant supervision in the bathroom. He cannot dress himself independently and eating…whatever! This week has me contemplating quitting everything to stay home with him just to get him closer to becoming an independent productive adult. For Christ sake, he has hit puberty and still pulls his pants off in public because the snow made his pants wet.

I’m not complaining about taking care of my son. I love being with him. We have amazing moments of laughter and sharing so much love that I actually want to live forever with him.

What hurts the most is the loneliness. He has no friends coming by to hang out. My friends or family are not breaking the door down to visit with their kids. This week has brought that to light for me, yet again. I love being around my friends and their kids, but they don’t love being around me when I am with my kid. #TruthBomb

How do I move forward? I have no clue. The summer is approaching and he will miss his Special Olympics friends and Special Recreation Day Camp for the 2nd year in a row because he is on Oxygen.

I need ideas for the summer. I need places to be and people to see. He needs friends outside of mom and dad. I need to see him engaging with other people, learning to behave appropriately and enjoying it.

We could go bowling every day and meet the elderly team we met last year. They loved him, even named their bowling team after him, “One Stinking pin!” and “Oh! Coconuts!” Those are Johnny’s ‘good words’. The originals were “One F$%^ing Pin” and “Oh! F%^$”. It took almost a year to replace those words! (I guess I can’t blame parents for keeping their kids away from mine!)

In the meantime, I will continue to ask around, reach out and ask for help in a network of people I have never met on social media. Hopefully, something will fall into our laps. Part of me knows whatever happens is meant to be. We always seem to be in the right place at the right time. #Blessed

via Daily Prompt: Conjure

 

Medical PTSD…Gratitude?

On the evenings I am not working Kevin and I put our son John to bed together. It is always filled with laughing, hugs and kisses. John takes a dose of melatonin every night right before bed that allows him to relax enough to fall asleep on his own. He is a happy boy, especially when he is home.

Daddy takes him into the bathroom for P and teeth cleaning while I go into the bedroom and set up the night light and sheets. Some nights I chase him into the bed pinching his little butt while he laughs and swats my hands away. He throws himself into the bed laughing hysterically, so much so his lips turn blue.

“Johnny stop laughing so hard, your lips are blue, breathe!” as Kevin and I look at each other nodding our heads with the look of “Wow, can you believe this kid”.

Kevin and I lay in the bed with John between us. We laugh at the silliness of John and usually mention how handsome or grown up he looks. Tonight, we mentioned how straight his teeth are and how beautiful his smile is. He has Kevin’s teeth, I had braces.

We say the Our Father Prayer with Kevin’s hand across us both. Tonight, Kevin was rubbing my back. John took Kevin’s hand and moved it away and began rubbing my back himself. We all laughed and kissed good night.

Sobriety brought me here….I am forever grateful for these moments that I do not rush and adore so much.

However, sometimes my mind goes to a dark place. For literally a second, my mind imagines the space between Kevin and I in that bed empty, without John. It gives me a knot in my stomach with a weakness I cannot explain. I shake it off quickly.

Death is something I think of a lot. I don’t do it on purpose. My mind just goes there. Sometimes I wonder if it’s my brain preparing me for the “what ifs”. But, my smarter brain tells me not to think of the ‘what ifs’ and to live in the present. I am not sure how to make these thoughts stop. I feel like it’s a symptom of medical PTSD, from all the years of watching him almost die or struggle to breathe.

I just don’t know how to make it stop…