Over the past month, I've gained a partner in life (yes, the Chef IS the man!) and planted seeds with new business colleagues and am awaiting the fruits of that labor to begin sprouting this month. But, I've had a major disappointment in that I had to delay Dylan's homecoming. Very long sigh..... It was a tough decision to make and I will not get into specifics as to why I had to make it but I will say that I realized that sometimes you must take a few steps back to take a huge step forward. The plan is to get my own place and then bring Dylan home. So, unexpectedly, last month changed from a month of preparation to bringing her home to one of getting ready to transfer her to a long term care facility. It was a 180 degree change in my perspective and emotional state and I suffered for it.
I ended up getting the flu - or the flu-like bug that was plaguing the New York area - and then I was so strapped for cash that with both those circumstances happening one after the other, I went for the longest time without seeing her for the first time in our lives. Each day in the house was more agonizing than the next and by the time that I got back to seeing her in the hospital, I was exhausted from the guilt and the anger. Yep, anger has finally set in with me and I don't think it's going anywhere anytime soon.
I'm angry that Dylan is laying in a hospital bed, can't speak or move without assistance and is not even 1% of the wonderful 6 year old girl she used to be. I'm angry that the doctors have no faith in miracles and only treat Dylan as an incapacitated child; that her best chance is that she won't go back on a ventilator. I hate that no matter how much I speak with her, kiss her, hold her hand, play her favorite music and movies or read her favorite books, I get no response. I hate that I no longer have the joy of parenting that I did prior to 10pm on May 13th. I hate that I no longer participate in activities at Excellence Girls Charter School or with the organizations, Families for Excellent Schools or Charter Parent Action Network. I hate that I don't have the zeal for life that I once had. I hate that I'm her only parent fighting alongside her. I hate that I normally feel like no one else fucking gets it. I hate that I have to take every reference and suggestion from her doctors as law because I just don't have the time or energy to do the research on alternatives that may exist for her. I hate that I know so much about stem cell research and all the great work that Dr. Hansis and his team are doing at NYU. I hate that my life is completely different and that I have no fucking idea what my or Dylan's future holds.
I never knew what the future was, but I had a clear vision of it. That vision is gone....or at the very least extremely faded. It's like seeing a building after its owner's attempt to erase a stunning piece of graffiti on the walls: I can barely make out the outlines of the entire work and the focal point is gone. I'm walking around completely naked in the world now. No compass, no map and really no idea where the road is heading. I pray everyday and I've kept my faith and strength through this all but God dammit!! It's fucking hard! I'm angry at being tired all the time and constantly having to fight the feeling of just not doing anything and giving in. I'm angry that I can't fall asleep at night and it's gotten progressively worse since the holidays. I'm angry that I'm angry and that there doesn't seem to be any end to this existence in sight.
I've closed off from my friends; I force myself to answer the phone each time it rings. I lash out at family sometimes and sometimes also cry at the sight of my two youngest nieces, Quan and Cee-Cee. Everything they do remind me constantly of what I don't have anymore: my Dylan, the Ode to My Joy.
I could go on and on about how shitty I'm feeling but I also know that for as bad as I feel, someone has it worse. I know that I am blessed. It is truly a miracle that Dylan is here and every day that she breathes is a blessing. She should not be here by all medical accounts. She was without oxygen and medical attention for at least 25-30 minutes. She is truly an angel and God is watching over her. This I know. I know that He watches over me too. Lately, I just haven't felt it. God forgive me, but I just don't. I pray now for my own peace of mind. I pray for perspective and for a positive outlook. I pray for me to see the silver lining in this enormous cloud. I pray that I eventually don't see a cloud. I pray for the return of me to me. I pray for my joy.
As I prepare to move Dylan to a long term care facility and for me to a place of content, I'll write more. I'm going to have to because keeping it bottled up inside has not been working well for me. And I need to be me again for Dylan's sake and mine. I'll keep the faith and I'll keep fighting right along side you, Dylan!!! LOVE YOU ALWAYS IN ALL WAYS!!!