Tuesday, June 11, 2013

Missing You

Hi Dylan!!!
It's after 1am and I'm missing you like crazy!!! It's been hard for me to go to sleep at night lately; mostly because a year has just past since you've been hospitalized. So much has changed since then and then so much hasn't.
You're still in the hospital and I'm still trying to make sense of this new life we have. I don't think that will ever change. I'll be 92 years old and still wonder why your asthma attack was so different that night and why everything else that happened after that went down the way it did. The saying (or belief) that God has a plan provides me with no comfort. It leaves me empty and questioning what my future is. I know that sounds so selfish, but it's true. With your birth, my life was defined, had purpose. I felt like I was finally living with you. Your every achievement filled me with enough joy to fill up 10,000 football stadiums. You were my greatest accomplishment. You still are, my love, don't get me wrong. But the promising future I envisioned for you is nothing more than a pipe dream now.
Your fascination with mass transit often made me wonder if you'd study urban planning but your huge heart and empathy for others also had me thinking of you as a teacher, doctor or even a politician. You were going to continue to impact the lives of those around you regardless of what you decided. I knew that. You were a great kid but were also becoming a great person.
That's what keeps me going now, Dylan. The thought that my job as your mom is to ensure that you continue to impact the lives of others. I haven't spoken to you about it yet, but I'm starting a non-profit foundation that will work with a great doctor I've met on finding the cure for asthma. It's hard work, after all just doing the work reminds me that you're not standing beside me holding my hand. But I must do it nonetheless. It's necessary and I think it appropriate as your living legacy.
As the date draws near for my 41st birthday and the end of another school year that you were not a part of, I'm still full of grief over the loss of the life we had together. But I try to stay optimistic and find joy in the blessings that God has bestowed on me recently. Things have become manageable at Elizabeth Seton Pediatric for one and I'm already seeing a change in you with all the new therapies you've been receiving. I'm looking forward to hearing the next steps with regard to your PT and OT splints so the future right now seems to be bright in that regard.  Personally, I wish you were here so you could get to know Sonny. Dylan, he's truly a blessing. Such a great person, a great man and wonderful partner. He would probably make you laugh as much as he makes me and because he's a chef, I know you would be in the kitchen right next to him helping out! He should be up to visit you again soon. And I can't wait to introduce you to your little brother or sister!!! I can hardly believe it myself, Dylan but your wish has come true for a sibling! :-) He or she is moving allot now so hopefully you'll be able to feel it on my visit this week.
Lastly, I'm trying to gather the strength to relaunch ChuggyBear Entertainment. You were the inspiration around the company and it just became impossible to work on it after you were hospitalized. But I know it's my duty to carry on and honor you by living life to the fullest and that includes living my dream of providing fun, safe and economical entertainment to the children of Brooklyn.
I love you, baby, and thank God everyday that he blessed my life with you. You stay strong and I will too!!
Love always,
Mommy

Saturday, May 4, 2013

It's Been a Long Time; I Shouldn't Have Left You

It's been forever since I've posted anything but, as usual, life had gone on. And what a life it's been! Spring had finally sprung in NYC and my fellow New Yorkers share my enthusiasm for the consistent sunshine and warm weather. Sometimes, a bit too much - I've seen way too many unmanicured toes and bare shoulders on both men and women. The one thing the beautiful weather had brought to me is a new perspective. But it's also brought me memories, most of them painful because they are of the good old days with Dylan.

May 13th will be a year since Dylan's asthma attack and brain injury. In the past year I've learned alot about me, my family, friends, strangers, life and must of all about Dylan. It's been a year of discovery about anoxic brain injuries, DNRs, the responsibilities of hospitals, doctors, nurses and nurse's aides, physical therapists, occupational therapists and my role and responsibilities in all of this. It's been a tiring year of parenting and I hate to admit it, but I don't feel that I'm worthy of a passing grade right now.</p>
<p dir=ltr>Most days I'm full of doubt and exhaustion. I'm at my wits end on how to come to terms with this new life Dylan and I share. I miss her tremendously when I'm not in the hospital with her and am full of a mixture of angst and hope when I'm there. The latter may seem impossible but anyone who's ever had to sit idly by as a loved one lay in the hospital while you helplessly pray and wait for the best to happen for them knows what I mean.

What's been the most difficult for me to deal with lately is the loss of the little things.  I no longer have a routine - my body doesn't even remember it.  I never thought I'd say this but I miss waking up at 5am to get Dylan ready for school and me for work.  What I wouldn't give right now to be complaining about having only 3 hours sleep! All those questions that Dylan used to ask on the way to school that would, at times, drive me up the wall would be SO welcome right now. I would deal with her asking me 50 questions in a row right now.  No joke.  I miss all the stories family, friends and her teachers would tell me about their encounters with her.  And I miss the normalcy of all those relationships too. There are times where - even if I've made plans to see someone - where I'm just not up to it all of a sudden.  But I go to dinner, I meet to catch up because I know I need it and it's good for me.  But deep down inside, I hate that I feel that way....I wish the feeling didn't exist in me.  And most of all, I hate that I can't remember my baby's voice.  I have to listen to a voicemail in order for me to hear it.  How sad is that?!  I find myself concentrating so hard sometimes to remember it on my own that I get a headache.

But as I said at the beginning of this post, I have a new perspective.  So while I don't have any answers, I do know that I'm feeling better than I did a year ago.  Or at the very least, I'm moving healthily through the stages of grief.  So that's what I focus on now.  That what I'm feeling is normal and to be expected.  That this will take time because it's not an easy thing for anyone to adjust to.  So thank you to all my family and friends for being there for me.  And I apologize to those that I have not kept in constant contact with - especially the parents from Excellence Girls.  Sometimes it's really, really difficult for me to speak with you all because it reminds me so much of her.  But I feel your support nonetheless and do appreciate it.

The other thing I've realized is that I need this blog.  I need to write about my feelings, I need to let them out. And I need to free myself creatively in general so I've started on a short story and may return to writing my poems if I can get my thoughts together enough to do that.  And I need to write about the other parts of my life here too.  The one thing that I can say this past year has brought me is to a ton of great restaurants!!  And  I should be doing them justice and sharing the wealth about my experiences there.  So more writing to come from me.

One day at a time, I need to find myself again.  I need to find peace.  I need to find a way to live this life of mine.  I need to come to terms with the fact that I have no idea what the future holds (the planner in me cannot stand that!).  No silver lining in this post.  Just the belief that with each day, it will get easier and that I'll find my stride.  Just the belief that I continue to hope and to fight alongside Dylan everyday.  I strive to wake up each day, be thankful and make it a great one.  That's all I can do.