Nov 12, 2012

Our Next Leg - Weeks 16-18 - Working Through My Thoughts – Part 1

Since my last post, it’s been busy…as usual.  I’ve been on the normal rollercoaster of highs, lows and everything in between.  I’ve been angry, happy, sad, okay, fine, etc., etc., etc., but I have not been at peace.  Each day seemed to become increasingly difficult to deal with.  Even mundane things like just getting out of bed seemed monumental and after putting the effort forth to accomplish the task, I was usually exhausted or simply disinterested in doing anything else.  It wasn’t strange that I was feeling like this, but it was still annoying that I did even though I knew that the feelings were normal and to be expected in my situation.  I got to thinking about what it would take to get me to a place of peace and I realized something:  I don’t know; but more importantly, it’s okay that I don’t know.  How many of us could answer with 100% conviction that they knew exactly what would get them to a place of peace.  Not happy or content now.  I’m talking about a place where the only feeling you experience is the pure love you have in your heart.  I think parents feel it whenever they hold their child in their arms for the first time or hear them cry immediately after birth.  It’s a place of perfection where you have everything necessary in life.  Your priority is love and experiencing it in as many ways as possible.  And you’re filled with the knowledge that experiencing love is the only thing that you need in this world.  It’s a place that we all are experienced with even being in even if only for a fleeting moment.  The trick is staying in that place – that’s where I needed to be.  So now that I realized that I wasn’t sure what it would take to get me to that coveted place, I understood that I was in good shape.  I was at the starting blocks.

Instead of being caught up with “how I should feel”, I could feel freely.  So if I was overwhelmed, that was okay.  If I was completely exhausted, that was understandable.  If I just wished I could wake up and things were the way they were before 10pm on May 13th that was completely fine.  I had taken the power away from the negativity that had started to surround me.  I had some family members making their displeasure known about the way I was handling things versus the way they believed I should be handling them.  It had become such an issue that I was actually trying to avoid all conversation with these people who felt like there snippy and slight comments toward how my time and days were spent were not only necessary but also didn’t see them as hurtful and – most importantly - unfounded.  Like one aunt said to me, ‘no one knows how you’re feeling’ so family should just be supportive.  But everyone has an opinion and, unfortunately in my family, they must let everyone else know what it is so the past month or so have had an extra little something added to my stress level by the very people who should be there for me.  It was unnerving and extremely disappointing.  More than ever, especially during the end of September and into October, I’ve felt like a woman without a home.  It sounds dramatic and I’m being just a bit, but it is the truth.  How could I feel at home in a place where I’m surrounded by those who seem to go out of their way to let me know that I could be doing more?  Where I’m not allowed to be emotional about my situation but am expected to carry on with life – as they had.  And I really mean that last part.  One of the things that bothers me a lot about dealing with Dylan’s health is the fact that life has gone on.  School has started, all her friends were now in 1st grade and had new stories that wouldn’t have anything to do with her.  My nieces continued to grow and become smarter every day and unknowingly reminded me of Dylan with just about everything they did.  And, yes, my family had gone on with their lives, gone back to work, to the supermarket, to church, on trips, on errands.  So as far as I was concerned, I was the only person that was still living in the moments immediately following Dylan’s asthma attack on May 13th.  Now don’t get me wrong, they love Dylan and want more than anything for her to come back to us, but as far as them understanding where I was coming from? They had no clue.  And I didn’t expect them or anyone else for that matter to have a clue as far as that’s concerned.  But what I did expect from my family was for them to support me as much as possible, which would include keeping negative and hurtful thoughts and comments to themselves.  But, that’s my family – a family of opinionated women who were masters at ganging up on someone.   As usual, however, I have a plan of action in place to assist me with dealing with the day-to-day situation with the perspective that there is an end in sight.  And so, I keep it moving forward.

With me realizing that I’m at the starting blocks gave me a renewed sense of ownership over my emotions.  I will not allow others to penetrate my fortress unless I consciously allowed it.  Gone would be the days where I worried about how not calling someone back, answering the phone, replying to a text or just exchanging pleasantries with a stranger on the street made the other person feel.  I had to deal with how I was feeling and stop trying to ensure others felt comfortable by acting as if all was fine.  Being a parent of an incapacitated child is a hard job and I had to stop denying that the difficulties of the job sometimes just made me a moody bitch.  I’d try to avoid contact with people on days that I felt like this and just stay to myself – which just made me bitchier.  But for those moments where human interaction was necessary, if you didn’t pick up on my mood and continued to try and pry, you were most likely met with an attitude.  To those of you who fell victim to this, I apologize….kind of.  Next time stop being so wrapped up in yourself and take a moment to notice someone else.

That felt really good to say! LOL

So, I’m not quite as worried about letting my feelings be known anymore.  As uncomfortable as it makes some family members feel, I cry at home.  And lately I’ve been full of tears, mostly the tears that I’d held in the first few months after Dylan was hospitalized.  Nope, I wear the fact that I can become emotional at a moment’s notice as proudly as I wear the hospital bracelet I received from Brookdale Hospital the first week after Dylan was hospitalized.  And with this ownership of emotion, came the control that I had been seeking in my life the past six months.

I now had control over Dylan’s present and future.  You don’t quite understand what I mean?  Well, the answer is simple.  I’ve left the decision regarding Dylan’s outcome will up to The Most High.  He knows what’s best and is keeping her close to Him until He’s ready to return her to us.  So for the first time – and I’m actually stating this for the first time out loud here in this blog post - I’m okay with what’s going on with Dylan.  She is my baby and I’m right there with her every step of the way.  This realization has stopped me from free falling into another bout of depression.  And I’ve actually gotten a bit of sleep the past week or so since admitting it to myself.  See, I was starting to allow the feelings of others about Dylan’s situation to affect me.  Whether it was the doctors, nurses, experts and specialists or family and friends, it was all starting to get to me.  I wished to be alone with her and with my thoughts about her and her future.  But for a while there, I felt like I couldn’t escape the questions about why Dylan wasn’t progressing more, why I was acting flaky or not as involved in outside life as much as I used to be and needed to be right now.  Certain members of my family offering “advice” on why I should be a the hospital 24/7 but not being supportive in any other way, to me realizing that sometimes when I walked into a restaurant that I was near tears because it was a place Dylan and I used to go to all the time.  I mean, I even had to admit that I wasn’t in the mood to think about things with ChuggyBear Entertainment because of how much Dylan had to do with the spirit of that company.  And all these feelings were leaving me guilty because I was attaching all that I was doing to Dylan’s outcome.  If I lived at the hospital, she’d get better.  If I made a few more phone calls, her muscles and limbs would loosen.  If I sent another email and stayed up all night doing research, she wouldn’t need so many meds.  If I worked harder and closed this deal, I’d be able to find the solution to fix it all.  I was setting extraordinary goals and therefore setting myself up to fail.

So what’s next?  Part 2 will be posted on November 14th.

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