3 Months 1 day

Yesterday my oldest was playing songs for my 3 year old from her I Pod. She came across a Justin Bieber song and asked him if he wanted to listen to it. In response he exclaimed, "KoKo loves Justin Bieber. That's Koko's song!"
The room fell silent as we waited for for my little boy to inquire further about her absence.........He didn't.
I wondered what that meant. Obviously he hasn't forgotten her, but has he really excepted that she's not coming back?

It saddens me to know that he will grow up without her, and by the time he's old enough to fully understand, his memories of her will be comprised mostly of photographs and videos. 

Photographs and videos. I realize even more now how important it is to log our lives in some form or fashion, and I kick myself not only for the times the video camera wasn't charged, but also for the fact that the picture quality of my phone is shitty unless the lighting is perfect. Which is not often.


Uwakokunre's 9 year old birthday was about a week after she got out of the hospital with a bout of  pneumonia. I planned a surprise party for her to come home to after school. There were pink balloons and pink streamers everywhere on the first floor of mommy's house. I got a gorgeous princess tiara with blinking lights to put in the birthday girls' hair and if I remember correctly I found a Hannah Montana Mylar balloon.  I remember looking for my video camera so I can get her reaction and record this celebration of the day she was born, but for the life of me I couldn't find it anywhere!
Everything was ready before her bus pulled up and all of her cousins had gotten here just in time.
Our timing was actually perfect!

When Koko came through the door and she saw everyone screaming "SURPRISE, HAPPY BIRTHDAY!"  the look on her face was priceless! Her jaw looked like it dropped even though her mouth was still closed. Her eyes were stuck so wide open I had to ask her was she okay. Lol!
She stayed silent looking around the room for a good 20 seconds before she finally said "This is my birthday party mommy?"  "Yes daughter, happy birthday. You're 9!" I said in reply.  Koko dropped her head to one side laughing and blushing in excitement as I kissed her on the cheek.

I gave up looking for the camera about half way through the party thinking, 'no matter. Next year is gonna be bigger and better anyway, I'll definitely record it then'.
How wrong was I................

2 Months and 21 days

It's been 2 months and 21 days since my Koko left this existence.
I would know down to the hour but unfortunately I wasn't home when she died.
Uwakokunre (Aka, KoKo) had Spinal Muscular Atrophy. Commonly known as SMA, this disease produces muscle weakness in the children that have it. KoKo had type II SMA and needed a lot of physical assistance. She was in a wheelchair and on respiratory support at night. Despite her life's challenges, my daughter was a beaming ray of sunshine.

On October 17th 2010 my sisters and I were going on a trip to Great Adventure which I had been planning for 3 weeks. It had been a long time since I went on a trip like that with just us girls.

I had nursing for Koko which helped me out a great deal from the point she came home from school to the time she went to bed, and sometimes even overnight and part of the weekend.
I want to make clear my daughter wasn't what is considered sickly. Sure she had moments; bad colds, pneumonia, hospitalizations, but most of the time Koko was the picture of health. She was happier then most girls her age, and her joy and laughter was as a contagious as a yawn.
She fought with her brothers and sisters for rights to the T.V. just like any other kid with siblings. Pink was her favorite color and she was crazy about the Jonas Brothers and Justin Beiber.
Her limitations was mostly in her ability to walk and get around on her own.

Koko had just seen 3 of her doctors earlier that week and the week prior. During these visits everything from her lung health to her diet and mobility was adressed and tested, and she passed with flying colors :)

Our nurses mostly helped with administering medication and cleaning and changing Koko. They were also her friends and companions. We all grew very close and settled in a regular schedule. So why of all days does the schedule have to change on Sunday October 17th?! I ask myself that every single day. If I would have just held my ground and stayed home with the new nurse like I've done with every nurse that have taken care of my daughter in the past.........maybe the outcome would have been completely different.

I went to celebrate one of my sister's 21st birthday last night. We went to Sea Thia restaurant in the meatpacking district in NYC. I had a good time I guess. It was a bunch of my other sisters (I have 7 of them) and their friends, along with my mom and one of my sister's mom. While everybody was laughing and having a grand ol' time, my eyes gazed across the room over my moms head, and everything went blurry. I must have zoned out because all I remember of that moment is seeing Koko's face smiling back at me in the crooked way that only she does saying "Mommy you're so beautiful", and then I was sad....