Jun 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,


  1. Dyan, I love how you are able to live your life on stage for us to see and learn and live through you. You are so brave. I've known how heavy these many months with Dylan have been and even some of your drama before BUT I've only experience your pain in my head, never my heart. I know it but haven't felt it for you, you know? It's because you are UNCONDITIONALLY positive anytime I see or speak to you. Even when you are shouldering things that would rip me apart, you are smiling and laughing and sharing joy with everyone around.

    This made me cry. Today I feel it with you. You and Dylan remain in my prayers. But I hope you know that in spite of it all you are blessed because you are a blessing.


  2. I just discovered your blog through Twitter and I'm heartbroken and inspired. Please know I am praying for you and your daughter.

    1. Thanks so much, Kathryn. I'm learning everyday how best to deal with this and know that more than anything I need support so appreciate yours. <3