Psychologically Speaking

Wednesday was our day at the Psychiatrist's office.  We have to go every three months for medication regulation and refills.  Dr. Denny is one smart guy and gets along well with the kids. 

Psychologically speaking, it's been a tough month.  There's been alot going on medically and a lot in all the other areas of my life.  I've been burning the candle at both ends just trying to make things work.  Being tired and stressed is not a great combination. 

I've really struggled as I look for work, to think about leaving the kids for 40+ hours a week.  The reality is, I really need a flexible job.  Someone is sick every single week.  We rarely experience weeks when no one has to go in to the clinic.  Then there is the emotional side, the mother in me that is afraid to leave them in case something happens.  It sounds completely lame, illogical and a pointless.  It's not like they are 3 years old anymore.  I have two adult children and a teenager. 

I had a job interview this week and the only thing I couldn't accept were the hours of work.   I asked if I could work from home so I could be there for my kids a little more.  I'm sure he thought I had little ones and I'm certain when I told him their ages, he thought I was nutty but that's the way it is. 

It's a really hard concept for people to understand.  Dr. Denny has mentioned on previous occasions that kids with chronic illness are incredibly advanced and mature in some areas but in other areas, they are developmentally behind and in some cases even regress to when they were a child.  That may seem strange to some but to me, it makes total sense and I see that happen a lot. 

I asked him if the same sort of thing happens to parents of chronically ill children too.  I told him about my attachment issues and what he said gave me a lot of comfort.  Didn't fix anything but I am going to stop worrying about how dysfunctional I am. 

He said that Fathers with chronically ill kids tend to just carry on with their life and don't expend too much energy on the facts of the illness and in many cases they leave the caring and nurturing to the mother.  (Disclaimer:  I know at least 3 fathers who are not checked out but are seriously involved with disease process and I'm sure there a more.) Mothers on the other hand are the ones who carried the child for 9 months and tried so hard to make sure she took her vitamins, ate the proper nutrients, stayed away from anything that might harm that child and then it's born with problems.  Mother's become riddled with guilt and anxiety that somehow, they are to blame for the health problems. Because of these feelings of inadequacy, they double their efforts to protect their kids from anymore problems but there is no way she can stop the disease and things get worse and she tries harder and harder and somewhere in the vicious circle, she gets to the point where she can't even let them out of her sight.  No one else is engaged in her family like she is so it creates this very isolating and scary situation.

Wow, he just described me!  He explained that all these thoughts happen sub consciously but come out in ways that make people around them go, "HUH?"  It was so good to finally have someone understand me and validate that I am not crazy...Shwachman Diamond Syndrome and Mitochondrial Disease are crazy! My kids were in the room as we talked about this and Shelbie admitted to times when she just wants to be a my little baby again and be held in my arms and rocked.  The boys on the other hand, their developing egos would have none of that.  Things may get a little harder as they are growing up and making the transition from being my child to an adult and there may be periods of regression when they can't make that step into the world.  It's just something we have to work through. 

I think now, when I quiz my kids with not 20 questions but 145 questions as they leave to be with friends, they understand that it is more about my fears and insecurities than it is about trust.  When we understand where someone is coming from, things tend to get easier. 

On this same thought, it didn't help that on Thursday, I decided to go up to Girls Camp for the evening and while I was gone, Sam was hit by a car!  I felt sick that I wasn't there.  He is okay and because of some quick thinking on his part was able to skid the back tire of his bike mostly out of the way but the left side of his body did broadside the car and he took out the guys mirror. The man who had given him the sign to cross somehow changed his mind and floored it.  Sam was already in motion and neither one were able to stop.  The guy continued to drive off and left Sam behind. So, now I'm on high alert until I calm down from what could have happened.  Yes, he was blessed, yes, everything turned out fine but this psychological component is really tricky.  Sadly, not many parents like to talk about this kind of thing. 

This family has a lot of tough stuff to work on.  


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