Behind starburst eyes

There’s Always A Reason

During a pandemic isn’t the most obvious time to decide one is going to start working on a trailer and planning a trip across the Americas.

While yes a part of the reason is definitely because we couldn’t go on our grand adventure across Europe, another part was the lump I found on my sternum. I needed something to focus on while I waited for results.

While many people equate Autism with a certain amount of social oblivion, where my boys are concerned momma being upset sets off alarm bells real quick! Couple that with this pandemic already having them more anxious and the inability for me to go off from them for awhile while I process and you’ve got the potential for a whole lot of additional stress and meltdowns on their part (totally warranted mind you!)

So instead I focused on the trailer and creating a sanctuary for the kids and I to have. For a place to make memories for years to come as we adventure together, because the alternative wasn’t something I could afford to focus on in such close quarters with them.

With all the additional medical precautions in place for Covid, getting a diagnosis wasn’t as quick as I would like. It took over a week to be able to physically see my doctor, another 2 weeks for the ultrasound, and then a week and a half for inconclusive results. My actual sternum is inflamed and swollen, so I was prescribed an anti-inflammatory for rheumatoid arthritis to see if it helped to decrease the swelling and then an appt with radiology 3 months from now to look at it again. ūüė¶

The idea that I should just sit around and wait 3 more months to see what exactly it is because most medical procedures that aren’t for Covid or for immediately saving one’s life is so disheartening and makes me wonder how many people aren’t getting timely treatment because our government cut funding for hospitals too much for too long and so they can’t handle both right now.

The bright side is that the pain is less with the medication and I think the lump is smaller so fingers crossed it actually is shrinking, and isn’t potentially life-threatening.

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Our Epic Camping Trip: Chapter 2 (Growing our village)

When¬†N was born 2 months early and had to stay in the NICU one of the hardest parts was that I couldn’t hold him all the time, he’d get¬†too cold no matter how he was bundled and he’d have to go back into his incubator after the smallest amount of time, and that was when he wasn’t under the lights for such severe jaundice when we couldn’t touch him at all. I swore that once he was home with us I’d cuddle him every single day for hours and hours. Until he was¬†about a year old he was okay with that,¬†but then slowly day by day, little by little it changed. By the time he was 18 months he hated being touched at all, he wouldn’t¬†allow cuddles and he’d have a complete meltdown if I tried to hug or kiss him. It was at the point that I’d cry regularly to my sister-in-law that it was SO hard to raise a child that would¬†hit¬†me and scream if I tried to offer affection.¬†I’ve written about the pain and struggles of loving a child and not being able to show them love through cuddles and touch here
Perhaps it was the lack of additional stimuli, perhaps it was that a bond had been formed between them a year prior when N had his horrific allergic reaction and “D” was his medic, perhaps it was cause¬†D was L’s dad and N knew this. I don’t know, and the whys really don’t matter.

What does matter is the picture I have imprinted in my mind of watching, heart bursting as my youngest son asked someone intentionally for a hug, received it and kept on holding on until he was picked up for a full on cuddle!!! N cuddled into D, resting his golden-haired¬†head upon D’s shoulder, one little arm slung across his other shoulder and a clump of brown shirt gripped with chubby fingers completely content with being held, with resting upon him. MY son was content being held, and I was trying¬†not to cry. There was the man who¬†had saved him a year before, doing something almost as amazing, he was cuddling with N, because N wanted him too!¬†He wanted to be held, and I didn’t give a rat’s ass who he wanted it from. I was trying not to cry because it was so beautiful to see, it gave me hope that one¬†day he¬†would be okay with physical affection on a regular basis. Not just from me, but from others too. He felt safe, I could see it pouring out of every fiber of him, and I was almost brought to my knees, I was so humbled to be¬†gifted with this sight.

Then it just gets better, cause honestly this camping trip was truly and utterly epic in the fact that I wondered when I’d wake up half the time, so singularly beautiful were the scenes woven into my family’s tapestry those 3 weeks.

My husband and I went to the fire pit ___ feet from our tent (I use ___ cause I’m terrible at guessing distance, but suffice to say it was super close, close enough that you could hear the wee ones while at the fire pit if they woke,¬†and you could hear the people from the fire pit while in the tent) Someone was playing a guitar and I was sitting beside them and so I didn’t immediately hear N wake up the one night. M (D’s¬†phenomenally stellar wife) came to tell me N was awake and D went to him while she came to get me.¬†I felt so blessed that D had not chosen to “respect my privacy” by not entering my tent, that instead he’d chosen to enter¬†so that my son could be immediately comforted. That alone was so incredibly heartwarming for me.¬†I¬†understand that in our day and age people often won’t do something like that out of concern that they would upset the owner of said tent with what¬†would often be viewed as an invasion of privacy. While I understand that is why¬†many would¬†not enter at all, when it comes to one of my children being upset I don’t feel that way about my tent at all.¬†I appreciated GREATLY that my child’s emotional wellbeing was the only concern of D and M and that they made the choices they did!

My throat constricted at the scene before me as I entered my tent:¬†D on his knees with his arms¬†gently cradling N, and¬†once again¬†my sweet boy had his head resting calmly upon D’s shoulder. His eyes were already shut again, a tear track the only trace of¬†upset left upon his serene face. While I was saddened that he’d had a bad dream and had woken up upset, what transpired with D and M and him will always be a memory I treasure, in part because again there was N, totally and utterly¬†accepting of this other person as someone he could trust,¬†and also because there were 2 people who cared enough¬†about N, not¬†just in a vague “all children should be valued” way but in a concrete, “N is important to us as the individual he is”.¬†He was in essence taken in as a¬†part of their village for the duration of our camping alongside them, and for that they both will always be a part of the village of¬†my and my family’s¬†hearts.

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