Thursday, September 26, 2013

Getting "IT"

I have been struggling with writing this post. The more I thought about it the more I felt I needed HAD to write this post. When I began this blog it became an outlet for me to work out some pretty intense emotions (anger, fear, guilt, name a few) and share with others that find themselves in a similar situation to our own. I once told a friend that I didn't write for my friends, I wrote for myself and for those similar to me. That being said, by not writing about "getting it" I was refusing to allow myself to deal with it in the one way I have found to be helpful. Let the chips fall where they may...


We've all heard this phrase at least once in our lifetime, "Don't judge a man until you have walked a mile in his shoes." For me, it speaks to more than just judgement. It also speaks to how well someone may understand another persons circumstances, their day to day life, their ups, their downs, and everything in between. When I was younger, I didn't give this concept much thought because everyone is dealing with their own big bag of crazy (otherwise known as life) and we all stress, worry, grieve, etc... It's just different types of stress, but stress is still stress regardless of the cause. Right???


I was very, very wrong. I can admit that now because I find myself in the middle of a particularly challenging life at times. Stress is high. Rewards are few and far between. Looking back on my twenty something self I am appalled at how arrogant, offensive, and insensitive I was to at least one of my closest friends (I'm sure there were others...give me a break I was young and a bit stupid and/or self absorbed). I insisted that our stress, our worries, and our lives were the same (they so were not even close to similar) that I "got it."

I was single, in college, living with my parents, and my paycheck was for whatever I wanted. She was a single mom, living paycheck to paycheck, no assistance from her ex, and responsible for another persons well being. She is someone I have always admired for her strength, her sacrifices, and her love of life/family/friends (even if she can be a bit dramatic...pot calling kettle black). I hurt her. Worse yet...I emotionally invalidated her. My insistence that we were the same and that her life was no more stressful than mine invalidated her. I was wrong. So very very wrong.

I am sorry.

When we were together in her home I was given a brief glimpse into her life. I played honorary aunt for a few hours and we laughed or cried while drinking a couple of beers. Then I left. I waved goodbye. Her door closed. I slid into my truck (a black Chevy S-10 I miss that truck) and I went home. I drove off into the night without another thought to her life as a single mom and all the hurdles that came with the job (in all fairness that isn't entirely true I thought about her daily). I thought I understood her life because I was peeping in her window and surely I was empathetic enough to "get it." But I could turn it off. I could close the door and walk away. She could not.

There are many different ways a person can invalidate someone else's feelings. The "Minimizer" tells you it's no big deal and everything is fine (someone out there has it worse). The "Denier" will insist that nothing is wrong, it is all in your head and/or you don't really feel that way. The "Fixer" doesn't really listen to what is being said because they are too busy trying to figure out a way to "fix" it for you (sometimes it can't be "fixed" and all your want is someone to listen). It doesn't take much to make someone feel as though their feelings don't matter...heck I do it without even realizing it at times...we all do. But for the purpose of this post the invalidation I am struggling with is the "Relater"(BTW: I totally made that one up). The "relater" attempts to relate your life to someone else or their own which may over simplify the situation or the feelings you have regarding the situation.

So, what does that have to do with my life now? Well, sometimes well intentioned people believe they "get it" and try their best to relate to me/us. They adamant that they understand everything our life entails. I do not agree. It has become a huge chasm that needs to be bridged, but neither party involved will acquiesce. I have agreed that they probably "get" some aspects of our life, but that is not enough. It feels like it has to be all or nothing. They are hurt and offended because of my refusal to say they "get it" in its entirety. I feel emotionally invalidated.

In case a few of you may be shaking your heads, thinking I am being dramatic, let me explain why I feel invalidated. I need safe places to vent. To be emotionally distraught. To allow myself to sob uncontrollably. To rage at Rett Syndrome and all that it has stolen from my daughter, from us, and from everyone that loves her. I do not do this with everyone. I can't. It can get dark and ugly. At times I feel ashamed of my own feelings. I doubt myself as Rae's mom. I fear a future of loneliness (remember we're a May December romance). When someone offers to be a dumping ground for all my emotional trash it is with great hesitation that I take them up on their offer. They don't need to carry my baggage because I'm pretty confident they have their own. However, when pushed enough I can't prevent it from spewing out all over whoever I'm speaking with at the moment. That is what happened one afternoon (and at other times). Then the invalidation began...

Rae will be three in October. On her birthday, Early Intervention stops and she will be starting school soon. She has never spent more than three days and two nights from us (and that was with her Mimi and G-Boss). Her medical care becomes increasingly complex as she gets older. What started as therapy once a week turned into three therapy sessions, more specialists than I can count, one machine for respiratory therapy, multiple pieces of medical equipment, three medications twice a day, and feeding complications due to aspiration.

Entrusting Rae to complete (qualified) strangers makes me anxious. I finally start to express this and I hear, "You're just feeling like every mom that has to leave her child in daycare and return to work." Um...not really...thanks. I once confessed that for weeks after putting Rae to bed I mentally ask her to please wake up in the morning. "Every mother feels that way." Maybe...hmm...maybe not so much. I expressed the fear of having to confront the words "mentally retarded" on Rae's evaluations. "Well, there are different levels and it doesn't mean what you think." I know that, but I still don't want to see it in black and white on official documents. It still hurts. I don't think of her that way. I'm pretty sure if the shoe were on the other foot they might not be so comfortable with the term either. By the end of our exchange we were just talking circles and neither of us were willing to back down. I felt like the safe dumping ground I was promised was no longer safe (I'm sure she felt the same, but I didn't offer a safe place).

Some people need you to know they can "relate" to you and your life. That either their own home life is, in some way, similar or their experience is more than enough to make them believe they "get it." That isn't the worst thing in the world. Having someone that really "gets" your life is one of the most satisfying, supportive, rejuvinating relationships a parent with a special needs child can have (or a widow/widower, a single mom, an alcoholic, anyone get my point). But that life isn't one that just anyone can fully understand unless it has totally consumed almost every fiber of their being. The further away you are from ground zero the less likely it is that you'll fully "get it." Of course, this is my own opinion and others may have different feelings from my own.

Most days I feel rather drained (physically, mentally, emotionally, spiritually) from what I absolutely HAVE to handle and keeping myself glued together that I don't have the emotional strength to deal with much else. This is one reason relationships suffer when you're traveling down such a different path than others. I don't really know where to go from this point... Some would advocate walking away from the realtionship, but that isn't really my style and not an option. Others would just limit communication or interactions with the person, but again that is not really an option. I'd like to figure out a way to mend this bridge, but I am not sure how to find a resolution that will make all parties happy. I guess I'll just have to wait and see where those chips land.


  1. I totally understand what you mean. This is a life that NO ONE can "get" until they have lived it. Every day is an emotional rollercoaster fraught with unpredictability and stress. My daughter does not have Rett Syndrome (at age 10, she is still undiagnosed) but she has so many similarities to a child with Rett's that they have done multiple DNA tests for it. So yes, I get it and even though there are many blessings amidst the heartaches, it is a journey no parent and child should have to go thru. Sending you good thoughts.

    1. Thank you Jo. Knowing the diagnosis was a blessing and a curse. It brought me into a wonderful supportive Rett family and also brought a deeper understanding of all the potential dangers. Sometimes I feel like a walking Debbie Downer and try very hard to put it aside when I'm out with friends. Not always easy since we eat, sleep, and breathe all things Rett.