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.

Friday, February 8, 2013

Open Letter to Dylan

Friday, February 8th

Dear Dylan,

Happy Birthday, baby!!! I can't believe you're 7 years old already!!  You've grown SO much!  You're getting tall (just like your daddy) and your hair is so long now! :-)  I'm sorry that I didn't have the chance to get purple rubber bands otherwise your hair would be in two of your favorite colors: purple & pink.  But I think the green, yellow & white (with a little blue) is a perfect alternative!  What do you think?

Teresa and Erin have been really happy with your progress sweetie.  They say that your limbs are really relaxed and that PT and OT sessions have been going really well.  You know that I secretly wish for more, but I'm really, really proud of you!!  I can't imagine how tired you must always be after the sessions but no matter what,  you work through it so I can't ask for more.  Things are steady now, they're not really progressing, but as long as they stay steady, we're good.  It's important to keep your limbs mobile so that you always have use of them.  Keep up the great work, my love!!

You've been opening your eyes as soon as you hear me or any of your favorite staff come in now.  I'm loving that!! It keeps me hopeful that you're hearing things and that hopefully you're seeing us....even if it's not clearly.  And I love it when you smile and - sometimes - laugh when you hear me talking.  It warms my heart!!  You're still the sweetest daughter that I know.

Quan has been asking about you a lot lately.  She misses you SOOOOO much!!  I give her hugs for you all the time.  She's such a great big sister to Cee-Cee!!  She's just like you used to be with her, Dylan.  She's caring and protective and forgives Cee-Cee when she steals her toys....most of the time (smile!).  I imagine you all playing together everyday.  I'm smiling now as I think about it.  Me, Grandma and Auntie Arleen joke about how much louder the house would be with all three of you playing together!!  Cee-Cee is such a personality....you all would've been the Three Musketeers!! :-)  Quan will be up next week to see you for sure, okay.

Mr. Jordan, Ms. Moore and the rest of the family at Bridge Street Child Development ask about you all the time.  I'm long overdue for a visit with them so I'll let you know how that goes.  It's been really hard for me to go to Excellence Girls, baby.  Seeing your friends would really make me sad.....I'd miss you too much.  But I have to go up there or at least call.  I miss Ms. Schoichet and Ms. Douin and the rest of the team.  So I'll get my strength up and let you know how that visit goes as well.

Guess what??!!  Yep, it's SNOWING!!!  I laughed yesterday when I saw the forecast Dylan.  You're finally getting snow on your birthday just like you always wanted!!!  The storm is called #Nemo and although I missed Wake Up with Al this morning on the Weather Channel, Stephanie Abrams was in Times Square all bundled up and waiting for the snow to start.  They're predicting between 6-8 inches, babe!!!  I'll take a ton of pics and bring them to show you next week, okay.

So, you'll be in Blythedale for a bit longer and then you'll be getting transferred to a long term care facility.  I'm really bummed that I can't bring you home now but it's the right decision, and you know Mommy always does her best to make the right decisions for you, right.  I know you're probably bummed too, but don't fret okay.  I'm working hard on getting some deals closed and I'll be going back to an office job before the month is through.  That brings me to my final update....

I'm not sure how often I'll be able to get in to see you during the week once I start working back in an office.  I'm going to see though.  Because since I'll be in the city, I may come to see you in the evenings sometimes and just spend the night.  We'll see how it works, but I'll figure it out so I keep up with my 3-4 times a week schedule, okay.

You see, baby, there's so much change already in your 7th year of life on this planet!!! Isn't it exciting???!!!  Yes, it is!! :-)  Well, I'm going to close this letter because, I'm visiting with you now!!!!

I love you and continue to fight alongside you forever and always...in all ways!!!

Love, Mommy