3 Months 9 days

KoKo, Arrishtk and Amanaja

My oldest daughter is going to be 17 in March.
Last year I took her to Great Adventure for her sweet 16. Initially I planned to throw her a slumber party at the Hilton Hotel in Short Hills NJ but when she couldn't get her friends to participate she decided she wanted to go to there instead. This year she wants to have a game party at our house and invite her friends and the rest of our family. I think that's pretty modest for a teenager.
I've noticed now that KoKo's gone the kids want to do more things at home. For instance, instead of going to the movies they prefer to rent a movie or watch something on Netflix. When Koko was here everybody wanted to go out every chance they got. Or at least it seemed that way.
Koko's birthday is March 16th, and exactly 8 days before my oldest turns 17. I'm not sure if Great Adventure is open that early in March, but I was considering taking the kids there to celebrate.

KoKo and Montsho

Is that strange? I mean.......that is where I was when she left.

We got to GA that day around 5:30 pm. Me the girls and a couple of there friends lingered and talked for a while before we actually went to the rides. We decided to create a buddy system and paired off into 'couples' for our fun filled amusement park extravaganza.
After settling on El Toro, a ride I thought I'd never get on, we put our bags and cell phones into the nearest locker, and got on line. The line move amazingly fast for some reason. We went from the 90 minute check point to the 20 minute check point in 10 minutes! Needles to say we were thrilled!

2 of my sisters went with there men/buddy to explore the park, but most of the gang was here waiting to ride El Toro. We all sat consecutively in the the middle of the car train occupying about 4 cars. We were too chicken to get in the front or the back of the roller coaster, so we played it safe.

The ride was amazing! Dips dives and turns galore! Just when you thought it was over, it seemed to start all over again! While going over a very steep hill into a long dip I noticed a necklace suspended  in the air just as my car went over the peek of the hill. What was that? In my excitement and adrenaline rush, was I seeing things that weren't there?


When we got off the ride we were all recapping what a great time we had on our way back to the lockers. I started to feel concerned that I hadn't called home in over an hour. I remembered seeing the necklace in the air and started to ask everyone else did they see it or if anybody lost a necklace. In my process, remembering one of my sister's boyfriends was wearing rosery beads, I caught up to him and asked if he still had them on. He didn't. He didn't even realize he lost them! I seemed to be the only one that found the whole incident interesting.

We made it back to the lockers. I checked my cell phone for any missed calls while the rest of my sisters located our strayed group members. One of them got on El Toro right behind us so she caught up quick. The other was on the other side of the park and we decided to head in her direction. No more then 5 minutes later my phone rang. It was my mom. "Z, Koko's not responding" She said panicking but trying to stay calm. The feeling in my stomach was the same as going over the highest hill on the roller coaster. I took deep silent breaths and everything in my sight disappeared. "What? Are you sure she's not sleep?" I could hear my mother calling my daughters name. I told her to put the phone to KoKo's ear thinking the sound of my voice would get a response out of her. I couldn't even tell when my mom did what I asked. I felt like I was talking to nothing. I started to panic on the inside but I knew I needed to stay calm. "Mommy!" I yelled loud so she could hear me though the phone was away her ear.

"Tell me what happend I need to know exactly what's going on. What is the nurse doing?" She tried to explained to me the best she could. The nurse said everything was fine she just turned around and Koko wasn't breathing. I told mommy to put the nurse on the phone.

"I don't know what happened. I'm sorry. I don't know what to say" I couldn't tell if the nurses tone was that of guilt or sorrow. I started to drill her about my daughters condition. All she could say was 'I don't know what to say'

"I'm telling you what to say. Tell me what happened!" I yelled.
"I don't know what to say, I don't know what to say". This woman was African but she spoke and understood English very well. What didn't she understand? What didn't she know to say? 
"Put my mom back on the the phone!" I barked at her. 
My mom told me KoKo still wasn't responding. I went over a checklist with her on everything to do to try to get Koko to breath again.
"The nurse is panicking. She's fumbling with the oxygen tank" My mom told me.

I asked mommy if the nurse used the suction machine to clear KoKo's airways. "Yes, but she's not getting anything out".

Mommy and KoKo

I felt nothing but chaos coming through my cell phone. I felt so far away and disconnected from everybody at home. I tried to visualize how my daughters bedroom looked, what the other kids were doing, what the nurse looked like. I just couldn't get the picture clear in my head. My thoughts was scrambled at the possibility that this time would be the last time my daughter would take a trip in the ambulence. And I was over an hour away.  I tried to imagine the positive alternative. I would get to the hospital and see my baby on the hospital bed connected to moniters, and the doctor would come in and tell me she was going to be fine.

I hear my moms voice again "The ambulence just got here."
"Tell them they have to go to UMDNJ." I refuse to except the fact that the distance of my daughters regular hospital could affect her survival. She's gonna get there with the doctors that know her, and they will take care of my baby....everything will be fine.........everything will be fine........everything has to be fine

"We can't. There's no time." A distant male voice responds to my moms instructions, breaking my affirmation.

Mommy tells me she's going with them. At that moment everything around me materializes and I see that I'm surrounded by my sisters and friends. My 2 youngest sisters had been crying. I look over at the guys in our group and I feel sorry that the trip they paid money for is being cut short.  My eyes fill with tears as we make our way out of the park and I silently ask God to please let my baby be okay.

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 27 days

I had a dream the other night I was giving KoKo's hair a relaxer. I had her propped up on my leg with her hair in the sink. She wasn't really moving and her eyes were closed. This dream is strange to me because my daughter had beautiful hair and I would never process it. When I woke up I didn't understand why I was perming her hair. Did this mean something? I'm pretty sure she wasn't moving and her eyes were closed because it was just her body and not really her.
I felt like my sleep was a waste because I had time to spend with her and I used it to process her hair?! Needless to say I couldn't go back to sleep after that. I layed in bed quietly while I relived October 17th over and over again in my mind.
When I came home from printing our Great Adventure tickets I went straight upstairs to my KoKo's room to give her a kiss. She was still in bed watching Hannah Montana and greeted me with a beautiful smile. I immediately washed her and changed her clothes, did her hair and put her in her wheel chair with her Dsi on her tray. By the time I finished everything it was about 1:30pm and 2 and a half hours before the evening nurse was scheduled to arrive.

I got dressed for the trip in KoKo's room and kept her company right until my sisters started to arrive around 330. The Original plan was for us to leave at 3 and my mom would be with Koko by herself. It would only be an hour mommy would be alone with her before the nurse got there.
It was already a miracle we got everyone's schedules to line up on the same day. For everybody to actually be on time would be like watching God create the earth in 5 days instead of 6!
At this point I'm more then happy everyone was late. We didn't leave until 3:55pm.

I double and triple checked KoKo before I left. Her saturation's, her lungs, her diaper.........there wasn't even a reason for me to do all of this. She was fine, and she told me so. I kissed Koko and told her I loved her. She asked me when I was coming back and I told her later tonight. "When I'm sleep mommy?" I responded "Probably baby".

2 Months and 23 days

Uggh! My allergies are acting up. This can't happen! I'm going out tonight with mommy!

My mother........she's been so kind and supportive since KoKo passed. I think she wants me to do other things then just stay in the house. Sometimes I stay in bed really late because I don't want to wake up before I see KoKo in a dream or something. Does that sound crazy?
When I told my boyfriend he looked at me like I was insane, and had the nerve to bring it up during an argument where he told me I was crazy because of it.

Uwakokunre (aka KoKo) 2006

Anyway, back to mommy. Since KoKo died my income changed. I had been a stay at home mom for about 4 years now because taking care of her (before I got nurses) took up most of my time.
No place of business could work around KoKo's schedule. I've done everything from waiting tables at restaurants to painting rooms with a construction company to make ends meet.
At some point during that crazy time, I found out I could collect SSI to help my family out financially. To make a long story short, after my baby passed I could collect no more.

Her leaving this existence came as a complete shock. KoKo was as healthy as she could be. On what started out as a beautiful Sunday morning, after I gave her her nebulizer and checked if she needed changing, I left to my mom's house to print our Great Adventure passes.

My 16 year old was responsible for KoKo when either I or the nurse wasn't around. It took me a little longer to do what I had to do then I expected, but my oldest was more then capable of taking care of her sister.

Koko was very easy to care for. She would watch TV in her room, play with her Nintendo DSi while she sat in her chair and just enjoyed everyone's company.
I regret taking as long as I did or even having to leave at all that morning. If I didn't, I would have spent more time with her that day.
I've been working hard on my own business, but it isn't at the point to sustain me and my family! I've been steady looking for work but.....well, I'm not the only one who has a sob story when it comes to that.

I feel kind of guilty depending on the SSI in the past, and.......well.....I don't know. It's difficult. It's not about the money. I think It's yet another reminder of her not being here, and when my mother offers to pay for things or help me out financially, I feel funny about it.
Nonetheless, we are going to see Paul Mooney tonight at Carolines comedy club compliments of my mom. I hope I laugh really hard.....I need to

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....