Jan 5, 2013

Our Next Leg - Weeks 25-28


I wasn't sure how to start this blog since the past few weeks have been emotional ones for me.  So at first, I lashed out and started by telling you how much my first Christmas without Dylan was excruciating.  I went on to let you know that I woke up at around 4am and spent the majority of the rest of Christmas Day crying.  I was realizing that the day was actually a culmination of the last 7 months of angst I've been feeling.  And I admitted to myself over the holiday that I was pissed.....really, really, pissed about the fact that I was without Dylan.  So I spent the morning of Christmas Day by myself crying - I've been babysitting my girlfriend Sarah's cat and apartment - the middle part with my cousin watching movies and chilling out - what's up Neil! - and then the evening talking through my emotions.

And I realized that I had alot of pent up anger, frustration and pain.  So it was a good thing that I was in an apartment alone.  It's not a great place to be when you're wondering how your life makes sense, but a great place to let everything out.  And even though I'd reached out to someone via text when I first woke up, because of the hour, I didn't expect to get any lifeline anytime soon.  And, to be quite honest, I didn't really want a lifeline.  I was actually tired of "doing okay" and "hanging in there" and all the other song and dance cliches which were nothing but lies.  I am NOT okay! I am NOT hanging in there! And I am NOT fine!!  I'm fucking pissed off that my baby is not with me.  That I didn't have any reason to put up a tree or lights or shop for presents this year.  I'm pissed that Dylan has brain damage.  I'm pissed that I spent Halloween, Thanksgiving and now, Christmas without her.  I'm pissed that she won't celebrate New Year's Eve with me either.  I'm FUCKING PISSED!!  So I cried about it.  I talked about it - love you, Sonny - and then I cried about it some more.  I prayed about it.  Cried about it again and then took a shower.  That, literally, was my day on Tuesday.

But I don't have the luxury of staying in that state of mind.  None of us do really, so I spent Wednesday in deep reflection with the objective of getting myself to the state of mind where I could deal with the flurry of emotions that I felt all the time in a way that is positive and healthy.  I'd need help in maintaining that state of mind so I've decided to go back to therapy in January.  Knowing that I would not be trying to deal with all that I have ahead of me alone made me feel better and made outlining my first few To Do's for 2013 easy.

So, first things first, I needed to get through the process of bringing Dylan home.  And I'm hoping to have that done before her birthday on February 8th so the pressure is on.  First, I needed to call the long term care facility and be sure they kept her on the waiting list just in case things didn't work out at home.  I doubted that highly, but it was smart to have insurance just in case.  Next, I needed to follow up with nursing care agencies since I was hoping to get 20 hours/day care for Dylan.  That would be daunting since there are so many agencies (I'm open to any referrals and/or suggestions) and trying to find the right person is just as hard as hiring for any open position.  Then I needed to provide the proper paperwork to Blythedale, who are assisting with the process, to ensure I received approval for the 20 hours/day of nursing care.  Next, was getting my mother's house approved as adequate to accept Dylan and all the equipment that would be necessary for her care, including a hospital bed, ventilator and all the other medical supplies.  That takes place the first week of January.   Then I have the meeting with the Physical and Occupational teams at Blythedale to order the hospital bed, wheelchair and  equipment to bathe Dylan as well.  That takes place on January 2nd. And let's not forget my visit to Social Security - Sean, what days are you in the office? Lol  I'm well on my way!!

Next, I had to go hard at getting D&P Entertainment Group and ChuggyBear Entertainment earning regularly.  2012 had allowed me the opportunities to meet people and learn the hard way that I had to amend my approach to who I worked with and how I worked on a project.  I'd made mistakes, been lied to, used and manipulated but I held no grudges and instead thanked those that gave me the lesson.  I would not be fooled again.  So for D&P, the next few days will be spent on tightening up proposals and submitting them for approval, confirming the level of my involvement in projects that I started work on this month and confirming additional projects that I could be involved in.  For ChuggyBear, I needed to get my website back up and running and getting back to work on establishing the brand.  The website, new events and new clients were needed to enhance that as well so the first half of January would be spent on confirming and executing the gameplan.  It would be alot of work for me to do myself, but definitely worth it.

The most important thing that I need to do business-wise is completing the establishment of Dylan's non-profit.  Asthma awareness is a message that is vital to everyone, especially parents and kids, and the fact that there is no organization that exists specifically for NYC is, quite frankly, shocking.  Additionally, all of the research that I've done on stem cell and some of the amazing work of one of the doctors in particular, Dr. Chris Hansis, needs to be recognized, discussed and - most importantly - financially supported.  And, finally, as the parent of a child that was suddenly incapacitated, I've found the need for a resource for parents to turn to which will answer their basic and complicated questions.  What are your options in the first few hours and days of the incident?  What are the different type of brain injuries?  What's the latest treatment for brain injuries?  What are your choices of facilities - long and short term?  What do current and past patients say about these facilities?  Is taking your child home the right option for you?  These are just a few of the questions that I had and could not find answers to.   And it's great that hospitals and facilities like Blythedale refer parents, however, if you're anyone like me, you like to make decisions based on all the information that's out there.  Trying to locate a long term care facility for children with ventilator capability within the five boroughs was so daunting a task that I couldn't do it and gave up after a week of reviewing long lists on the internet.  I doubt that my decision to take Dylan home would've changed, but knowing that I have an option closer to Brooklyn would've definitely made my first few months of the year a lot different.

Personally, I have a lot of work to do.  I have to get back into therapy as soon as possible.  I need to work through my emotions and I also want to get away from spilling my guts to the men in my life.  I don't like seeming or being helpless and right now, I feel like most of my time was spent that way.  Not attractive.  I know that how I'm feeling is all understandable given the situation with Dylan, but if I'm tired of feeling this way why would (or should) anyone else want to hear me talk about it all the time?  You see, one of the things I'm working on getting through is how to live my life without having my feelings about Dylan completely change everything.  I refuse to give in to what's deemed "normal" in this situation.  I cannot live every waking moment in pain about how her life and mine have changed.  And I also cannot ignore the fact that everything has changed.  So how do I deal with that?  Is there a way to balance it all??  That will be what I'm working on with my therapist.  I hope you're ready Jimmy!

And, the love life.  Well, how do I start?  Last year around this time, I had decided to stop seeing one guy who consistently disappointed me to seeing one exclusively that, as it turns out, would disappoint me as well but not as much, or in the same way.  Let's call him Mr. Routine.  He's been great through everything with Dylan and was my rock for most of the year.  But like with all relationships we were in a rut and the thrill seemed to be gone between us.  We'd become simply a part of each other's daily routines and were operating more like a booty call than having a meaningful, caring and growing relationship.  So I naturally started to feel like I couldn't count on him for the big things, and started to pull back.  I also started to realize that I had overlooked a lot of things that I wasn't happy about, including how routine things had become, because I was scared to be alone.  I'd decided subconsciously - and a bit consciously - that it was better for me to be with him and a bit unhappy than to be alone and miserable.  But I'd been in a relationship like that before and all it did is postpone the inevitable.  So I started to distance myself from him and was trying to figure out how to say this to him.

Around the same time, I was introduced - innocently - to someone else.  I'll call him Chef.  I was shocked at how attracted I was to this person and am still shocked by my initial reaction to him when I think about it.  I felt like a teenager: giddy and gushy with gaga eyes.  It was hilarious and a bit embarrassing.  Embarrassing only because I felt like I was too old to feel like this about someone and especially someone that I didn't really know.  Well, after a couple of weeks of that and getting to know him a bit better, I realized that it was not just infatuation and that I needed to explore things (whatever it was).  But what to do about Mr. Routine?  After all, I was partially to blame for the state of our relationship.  Were it not for my fear, I'd brought up my concerns and misgivings about the way things were about six month ago....yes, before Dylan got sick.  But I didn't so I owed him an explanation for what was going on.  But I'm a punk so I kind of avoided him for about 4-5 days.

He flat out asked me what was going on finally so I came clean.   I told him that I thought we should take a break, that I needed to sort things out emotionally and that I'd become too dependent on him. I told him our daily routine was "saving" me from depression.  That he'd become a consistent distraction that allowed me the immediate comfort I desired when I was at my lowest, which was normally at night.  But what that also did was assist in us becoming a routine, which led to my feelings of the relationship not meaning too much to him.  That feeling was also exacerbated by the fact that Mr. Routine is an extremely self-sufficient person who doesn't ask for much and seems not to need anything.  That was a huge change from the men I'd normally dated and took some getting used to.  But even with all that understanding, it's tough when you're in a relationship to feel like things are all one-sided.  I knew that he helped me with my personal shit.  He'd held me and rubbed my back on many occasions when I couldn't contain my emotions.  But since I never really had the opportunity to offer him advice, I didn't see how I was of value to him - outside of the bedroom, of course.  Now, he never treated me like we were just fucking, but I sometimes felt that way because of the dynamic of our relationship.  We were no longer going out to movies or dinner, etc. so it really felt like the relationship was one dimensional.

Mr. Routine's response to me was unexpected, sweet and moving.  He told me that he didn't want to repeat a past mistake and so was not going to just allow me to walk away.  After us speaking on the phone for about two hours in a conversation where he explained how much I meant to him, he came over and we made love for the first time in a very long time.  It was amazing!  And he's been trying since then to be the perfect partner. But I cannot deny the attraction that I have with Chef.   And I complicated things by sharing some intimate times together...they were electric, powerful, breathless.  He was extremely caring, respectful and naughty all at the same time: a dream come true.  And the mind-piece!  Wow!! What an attraction!!  We could talk for hours about anything and his perspective on life in general was a true turn on.  I can honestly say that I liked him as a person and wanted to get to know him more.  He was the kind of person that you just want in your crew, know what I mean.  So what to do?  Because, emotionally, Chef was winning and since just recently he'd also tamed me in the bedroom, I was a bit caught up to say the least.  So what to do?  A male friend of mine said that I should just enjoy the time with each of them and as long as I'm respectful to both it's not a problem.  But I don't like not telling the complete truth to people and that's what I'd have to do in order to keep this going.  No one is worth lying to so I'm just not sure what to do.  I do know who I want to explore things with and that's Chef.  But for almost two years now it was Mr. Routine who I contemplated the possibility of a future so I can't just throw that away.  What's a woman to do?????

So that's what's on my mind right now in this moment and it's a lot. I never claim to have the answers, but I'll share my experience with you as I try to figure it all out! Come follow me!
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