Sometimes I Wish…

Today, I ventured out to WalMart with Evy and Lydia on my own. This may be only the 2nd time that I have ever attempted to run an errand with these two, without Scott along with me. Cody and Evy? Yup, they’re no problem. Cody himself is even a big help, sometimes! Cody and Lydia? I take those 2 out together all the time! But the particular combo of Evy and Lyddy is a rare occurrence. “Why?”, you might be wondering… Well, let’s just say that having a 3 year old who doesn’t yet understand basic safety, follow many commands, or answer any questions means that I literally always need to be on guard; ready to physically keep him safe, should he dart out unknowingly in to traffic, or try to touch something unsafe. Couple that with a baby girl who, until very recently, was NOT happy outside of mommy’s arms (and wasn’t afraid to scream bloody murder until I gave in and picked her up, carrying her around for what felt like eternity!!), this meant that taking our two tiniest humans out for an errand was not only daunting, but was very risky safety-wise.  But today, I decided I needed to concur that fear. I had barely anything on the list, and only the one store to hit. So, after lunchtime, I packed the tiny ones up, and away we went!

I’m so very happy that we went. Not only did they both do great, aside of Lydia hilariously throwing whatever items she could reach back out of the cart, but I also got exactly what I needed. I’m not talking about the stuff on the list, either. I’m talking about the warm hug I got from a friend I ran in to there.

You see, I’ve been feeling quite…alone…lately. Isolated. Blue. Not all of the time, but more often than I would like to. When I ran in to this person (I’ll call her “G”), after we caught up with how one another were doing and agreed to get together soon for a BBQ visit, she then told me that she follows my blog; she mentioned that she loves my writing, that she can tell it comes straight from my heart. As sweet as the compliment was (and it really was!!! Thank you G for following!), what was even sweeter was how genuine she was in letting me know that she is right here for the journey. I could feel from her that I am NOT alone, after all. She thinks of Evy often, keeps us in her heart, and I could feel her camaraderie, mother to mother.

Thank you, G. Your warmth was all I needed to brighten my day. It was a lonely one before seeing you…

Sometimes I wish that I could tell people how difficult it can be to do the most seemingly mundane things (such as run an errand to WalMart). Not so that anyone could feel pity for me, god that sounds apalling!! But when someone makes a remark that they “know how it is” because they have children too… I sometimes choke back tears. I swallow my feelings, because in public, that’s what one does. When inside, what I desperately want to say is “please don’t say that”. Because…the truth is that unless you have a special needs child yourself, you probably don’t know how many teeny considerations and/or worries come along with planning out & executing everyday tasks. I know that I’m not the first special needs parent to feel this way, and I won’t be the last. Nonetheless, it can feel isolating.

Sometimes, when comments are made that I “should” be getting out more, I wish I could find a way to say “I would love to…but what you don’t understand is how complicated that is for me. Between breastfeeding Lydia because we cannot yet try cow’s milk, and needing to be mindful of Evy’s unique needs, and of Cody’s day as well…life often gets to feel too overwhelming once you throw in other daily tasks” I often want to say “Could you please HELP me to get out more, rather than making comments that I “should” do so?” But of course, I adore the people in my life, and I fear that any honesty that deep might hurt someone’s feelings, when I would never intend for that. So…I keep silent. More isolation.

Sometimes I want to tell people that last summer was horrific for me…that I am still emotionally, and psychologically, working through much of it’s damage. I want to tell people that after Lydia stopped breathing in my arms at 2 weeks old, little did I know (…but would find out months later at a specialist appt…) that given everything I went through in 2017, this was the tipping point; it was the critical point that landed me with “Acute Stress Disorder” last summer….and, as time went on, PTSD. But, as a society, when we hear “PTSD”, we think almost solely of soldiers coming home from traumatic events. So, I do NOT say that term out loud, to anyone except for Scott. I have worked hard since diagnosis in October to deal with the core of it, to form new neural pathways through CBT (Cognitive Behavioral Therapy) and most of all, to be present and ENJOY LIFE to the fullest. But when people seem confused as to why I have to be mindful of how much I take on or commit to…I sometimes wish I could tell them what I still deal with. Yet, I don’t. It just isn’t something that one can easily slip in to conversation without sounding overly dramatic, or without worrying the other person. So, once again, I keep that to myself, and feel a little more alone.

Sometimes when people ask why I’m not at our cabin more often…what I want to tell them is that being there triggers too many memories of last summer. Evrett began showing signs that something was really wrong for him while we spent our first nights there; he had a terrifying seizure-like episode at 1:30 a.m., and Scott had to bring him in to town. We were off to the hospital the next morning, and that was when our medical journey to finding out his diagnosis began. I want to tell people that Evrett’s safety is an issue out there…he doesn’t comprehend the mortal danger of the lake, and he will break out of the cabin and make a break for that damn lake whenever he can (and he is insanely fast!!!). Unless we have more adults than children out there, it’s a safety hazard, and it means I just cannot relax. I want to tell people that I am trying to make new neural pathways in my brain through the exposure technique; which means taking it one short visit at a time out there, making new, positive memories, enough times to replace the old pathways. (For example, if I had 5 negative experiences there, it will take 5 NEW ones to begin replacing the body’s automatic stress reaction) But this takes time and patience, it will likely take this entire summer to do so. I want to tell them that I likely won’t be out there a whole bunch just yet because of the journey I am on…but, all of that sounds way too heavy…how much do I want to burden anyone with that story?? I don’t, not really. So, I simply smile and nod at their suggestion. See? Isolation island.

Sometimes I wish that people would offer to help. It tends to be said in our society: “if you need anything, just ask”…but being the one to reach out and ask (usually with the knot of fear in my stomach that I am inconveniencing whomever I am asking!) can start to feel…yucky. Lonely. I wish I could say: please offer to help with Evy’s many appointments, or ask what our current goals are with him and try them out, or help somehow with the delicate balance of juggling 1-on-1 time with all 3 of these angels who all have such vastly different needs…or best of all, simply come over and lend me a hand or shoulder to lean on while we chat over coffee/tea.

It isn’t that I wish people knew how lonely this gig can get….because of course, none of us knows what anyone else’s life is like. Not really. If we aren’t living it, we cannot fully know. It would be absurd to expect that anyone could know, I understand that.

What I DO sometimes wish, is that a bit more compassion could be practiced. A bit more consideration, for how immensely hard I work at our life, and how isolating it must feel at times. A bit more of a “we’ve got you” type of feeling.

 

 

 

 

 

~P.S. Thank you to G, who gave me that warm feeling today!!