7 Months 26 days

My mind has been very unsettled lately.
Visions of KoKo dominate my thoughts. It seems as though everything I look at remind me of her. My youngest son blurts out at the most random moments "Mommy, KoKo died?" or "Mommy KoKo died." It's happened 5 times this week alone. It always causes silence in anyone within earshot. My man thinks him saying that is inappropriate. "He's too young" he reprimands every time he hears my son make the statement or ask the question.  I don't think there's a problem with it personally. Death comes to us all eventually.

I've been getting light invisible caresses against my legs and shoulders recently. Some spiritual beliefs dictates that this is a sign that something is trying to contact you from the spirit world. That along with my renewed interest in SMA and other children that suffer and has died from the disease, makes me wonder if it's KoKo spirit making the hair on the back of my neck stand on end. Is it possible that God allows the souls that completes their cycle to revisit loved ones on the earthly plane? If that is the case I wish it was a little more obvious. I would love to see my baby walk towards me uninhibited by her human form. What do I need to do to make this happen? What candle do I need to light? What incense do I need to burn? What prayer do I need to recite or spell do I need to conjure? Just a few clear finite moments, please! That's all I ask.

When I walked into the hospital room that horrible night, I didn't feel her soul at all. My conscious mind looked at her and wanted to believe she was still earth bound, but my spirit knew the truth. I knew she was gone back to our creator. I knew that her life energy had become part of The One again. My soul and mind was also in agreement that somebody was accountable for her leaving me prematurely. Someone was a tool in my daughters demise and I began to hate her.

I looked for the nurse that was responsible for KoKo's well being while I was gone. When she saw me the fear in her eyes almost made me abandon my confronting her. For a split second I wondered if she had children and who was watching them while she worked.  I ignored the thought, and interrogated her in a private room in the ER. All she did was repeat "I'm sorry, I don't know what happened" like a broken record, as she clutched the thick blue folder that held the nurses reports from the last few weeks.  If I'd suspected she was going to leave without letting me know, I would've taken the folder from her to see if she had noted anything out of the ordinary.
I didn't know what to do. I felt so helpless and out of control.  I couldn't, and still can't forgive myself for not being with Uwakokunre when she left this plane of existence.  After I couldn't get any answers from the nurse and fighting the urge to put my hands around her neck, I left her alone in the room.

When I got back to the curtain my daughter was behind, I pulled it back to find some of my sisters in the room crying over KoKo's body. For some reason my tears dried up and my sisters seemed like strangers to me. I wondered why they where crying, what was they sad about.  As many times as KoKo has been in the hospital, very few ever came to visit her. Trying to be compassionate in a situation that is foreign to most of my family, I pushed the thought aside.

My oldest daughter came in with tears in her eyes and her shoulders hunched over a few minutes later. I could tell she was hesitant and didn't want to believe she wouldn't see her sister again. She approached KoKo's body and kissed her on the cheek as she sobbed.
In the past when it came to her helping to take care of KoKo, I struggled on occasion with my eldest. I would get so angry when she forgot to change her sister, or put her feeding up when I told her to. Being the eldest myself, I couldn't understand how she didn't feel automatically responsible for her younger siblings. How could she look at her youngest damn near helpless sister and not want to make her life as comfortable as possible. Nonetheless I constantly explained the importance of KoKo's care to all of my other children, and I was sure with enough repetition one day it would stick.
My Mother looked very confused behind the tears streaming down her face. Though I knew she was at the house with the nurse,  I didn't feel like she was responsible. I think I put her in a category with all of the children in the house titled 'doesn't know any better'.

As I write about what I was thinking that night, I feel like I was being judgmental. I don't think I was judging the people around me. I'm not one to judge so easily because I don't like to be judged. I think my anger was a little displaced and in actuality I was mad at EVERYBODY.  None of these things really matter anymore, but at the time, they mattered so much. Maybe they shouldn't have.

I thought there would be more time for all of my children to develop a better sense of empathy and sympathy for their sister before the inevitable.  I guess God decided that what they learned was sufficient. As for the rest of my family, I'm sure they had every intention to come visit the hospital the next time around. No one knew the next time would be the last.
As they say, we make plans and God laughs. 

5 Months 5 Days

I was in the kitchen last night sharing out dinner for my family. The mood was joyous. My oldest was playing music from her Ipod for her little brother to dance to. My boyfriend was sharing his food out with a smile on my face. My two other children where giggling and laughing at something I don't even know. Everything seemed perfect. Then I realized someone was missing.
At that moment it hit me what Michael Jackson's song (which I'd always skip on the CD) 'Gone Too Soon' was about. So I went on you tube and played it right in the middle of all the happiness.

My boyfriend rolled his eyes and looked at me like 'why'd you have to go and do that?' I felt a little guilty ruining the moment, but for some reason it seemed appropriate. He then told me he was going to make a collage with pictures of KoKo and that song in the background. I told him he should totally do it. Until that happens I want to include the song in this post.

3 Months 30 Days

My man put together some shelving for my pantry. I love organization. I can find everything I need at the time I need it.

In my rearranging process I found some pictures we took at the Make a Wish Foundation holiday party in 2009. It was me and all of my children minus my eldest, who wasn't feeling well that day, sitting (and standing) with Mr and Mrs Clause. KoKo was planted front and center in her red chair looking somewhere else other then the camera. She and her youngest brother were distracted by all of the toys displayed in the far corner. We had so much fun that year.  

I gazed down at the picture thinking about how the skin on KoKo's cheeks were so smooth and bright. How the crook of her neck smelled like a baby in the morning. I imagined what she would be doing at the moment if she was still here, and I try to smile because my thoughts are truly happy.
But happy seeds must sprout sad flowers because whenever I reminisce on the days we were all together I cant help but feel the vast void left by my missing child.

To not think of Uwakokunre makes for tolerable days and sleep filled nights. When my mind stays occupied on everyday malarkey, my mood is light-hearted and happy. Why must it be this way?

When I think of my daughter laughing at me as I carry her up the stairs, within seconds the picture in my mind metamorphosizes into the moment I saw her lying on the  hospital bed closed eyed and lifeless.
When I imagine how fun it was to sit with her in her room and watch movies, I can't help but feel sad at how we won't get to finish The Women Of Brewster Place together.
When I laugh at something stupid on a Disney Channel show or try to watch a scary movie (KoKo loved scary movies) I am reminded of how much my heart aches with every minute of her infinite absence.
I never, ever want to forget KoKo, but my memories of her causes water to incessantly stream from my eyes and down my face. And as for my mood....well lets just say if you are in my vicinity you'd understand why the word gloomy and rainy days go hand in hand.
I think happy seeds can sprout sad flowers, but I do have faith one day those flowers will make a beautiful bouquet...........I just don't think for me it will be anytime soon.

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 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....