They have been reminders of what my boy faces everyday without complaint, until he can’t.
The anxiety, the discomfort, the PTSD that is so ready to grab hold of him by the smallest of triggers.
The frustration, the need to gain control, the unknowns and what if”s that plague his being.
He wants me to solve it. He wants me to fix it. He wants me to have all the answers. He wants me to make it go away.
I wish I could. I would in a heartbeat. But I also see him trying. Working through the discomfort. Coming up with ideas and his own what if scenarios. He is problem solving for himself. He is processing all this stuff that happens to him. I even heard him for the first time tell me about a feeling that I have never heard him describe before. I am sad he has to go through this. But damn, I am always so proud of him.
These are the moments that I dread as a mom, but cherish because I am his safe place. The moments where he wakes up, not feeling well, and he wants me to help him. He is confused by what he is experiencing. He would much rather “be sick” than have his bowels causing his symptoms.
But he and I both know all too well what his symptoms point to. Bowel impaction.
He and I know all to well what has to be done. Bowel clean out.
He and I know all to well the possibilities that he may face from this moment forward.
But as we always have told him, we will always do everything in our power to help him at home. Use every trick in our medical manual of experience to clean him out at home. (Quite honestly this is when I am so glad he still has his cecostomy button. It just means we have more capabilities to help him at home and avoid surgical clean out).
He asks lots of questions. He wants answers and for me to tell him what is next. But I know better. Boy do I know better. Reality is he needs the control. He needs to make the decisions on his own. He needs to do what he feels is best. I learned a long time ago that the trauma he has is always associated with me because I was always by his side for every hospitalization, every blood test, every X-ray, every barium enema test, every nasogastric tube placement, every surgical bowel disimpaction, every time he was wheeled into the operating room, and every time he opened his eyes when coming out of anesthesia.
I was always right by his side, holding him in my arms when he was little, nursing him when he was really little, and laying next to him in those very uncomfortable hospital beds. So every experience he had medically that was traumatizing to his mind, body and soul; I was with him. I wouldn’t have done it any other way, but it makes our relationship a challenge when he struggles to process essentially “why did you let them hurt me” which is how a little scared boy perceives those experiences. They started when he was so young, this is what trauma looks like.
So for both of us, even though it isn’t as frequent, it is no less scary; for both of us. I hate seeing him hurt. But to see his growth and processing little by little. For him to see he has the control, I’m just beside him following his lead is something that makes me smile.
These are the very hard lessons I had to learn the hard way. Unfortunately it was the opposite of all the professional advice on how best to support our child. Their advice only made things worse. This wasn’t a typically developing child. Without taking everything into account, his experiences from birth, through those early brain development years, to preschool, age 5, 6, 7. What his life experiences were in all those early years was pain and hurt mixed with our love and compassion. That is really hard for a child to process.
But I understand this role. I understand that even though I was there to meet all his needs that I could as his loving mom, I couldn’t prevent the pain and the hurt. No matter how hard I tried. It took so many years for doctors to listen, to figure out what was going on, to help him. By that time, the damage had been done. We knew it. You could see it in his eyes.
So when he comes to me in the middle of the night, complaining that his stomach hurts, his side is cramping, he feels nauseous, my heart sinks. But I also know he needs me. I have always called us “Team Ty”. We are a team. We make a great team when this situation comes up. We get things done.
The first day of trying to clean out his bowels at home, he decided, yes that’s right, he decided he wanted to drink the magnesium citrate liquid rather than putting it through his cecostomy site. He told me, for the very first time ever, “he doesn’t like the feeling ( yes he said feeling) of the liquid going into his site”.
Wow wow wow wow wow.
That was a huge milestone in his ability to effectively communicate something that is happening inside his body. I literally turned away to smile with huge mama pride. Reality is I couldn’t let him see that joy, it would have ruined the moment and he would have misinterpreted it for sure. I do know my boy.
Anyway, a crazy week. We have a few more days to keep trying to clear his bowels at home before we have to talk next steps. Fingers crossed it works. Because although it has again been 2 years since his last hospital visit, these experiences set him back emotionally and physically. They are hard. But 2 years is better than the every 6 mo as it was for so many years just up until 4 years ago.
Maybe it is a good thing that we decided to take on a build project. It is kind of the stress relief both B and I needed, plus it has given us something to focus on together. That’s always good for a marriage. Better than therapy. Lol
We are building an “office” shed so that B can move out of his office tent in the backyard. The pandemic isn’t going away anytime soon. He is fortunate to be able to work from home during this time. So as we just got the perimeter of the foundation done, I’m literally working with my saw and my drill, Ty calls me, needs me. I have to take off my tool belt and get out all my medical supplies necessary to do his bowel flush.
As I was prepping his kangaroo gravity bag, cleaning tips with alcohol wipes (which by the way the smell of rubbing alcohol is a huge trigger for Ty. It always reminds him of the hospital. He calls it the hospital smell). Anyway, as i am prepping, pouring his solution into the bag, he is over my shoulder freaking out in the only way he knows how, to be mad at me. I just hate when it starts to regress to this. It breaks my heart for him. But I know he doesn’t want to. He is dysregulated, elevated in his anxiety, and now the smell of rubbing alcohol and knowing what is next is just now screaming in his mind.....TRAUMA TRAUMA TRAUMA
Everything goes wrong, everything is my fault, everything is awful. I can only show empathy and compassion and patience in a non verbal way. Right now words are an assault on his senses. Words, no matter what they are, make things worse. I can only communicate with my body language and my eyes.
Our eyes are the way he and I have always communicated. When he was in the hospital when he was so little, 2 and 3 and 4....and he needed blood drawn, or anything even having the routine nurses check that was done like every hour (ugh).....I would sit with him, on the hospital bed, holding him close to me, and tell him to look at mom. Look into my eyes. Focus on mom. Look deep. His eyes always showed so much fear. It was so hard to see. But I would share my strength. The only thing I could do was be present in that exact moment with him. So I was.
His eyes still show the fear. He still experiences the fear. I know this because of how frustrated and angry he gets at me when I am simply pouring the solution into the gravity bag. When I ask him gently if he wants me to hook up the extension to his cecostomy button or does he? When I ask if he wants me to start the flow of the gravity bag or does he want to do it himself? When I remind him how to slow down the drip to ease any discomfort so it it’s flowing rapidly into his bowels. And I am just met with frustration and anger. This is how I know he is scared.
It is never easy, 16 years later. It is never routine. It is always traumatizing on some level. It is always heart breaking.
I have no idea what today will bring. I will get some work done on the shed. I love using my tools and building things, anything. Hopefully I will be regulated enough to share my regulation and my calm to support him and whatever the day brings his way. I’m pretty sure it will be a 3rd day of mag citrate. And hopefully it will bring the relief he needs and clear him enough to not have to go to the hospital. Fingers crossed!!!!!!
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