12 Months 1 day

Yesterday made a year since my KoKo left this existence. For the last few days my anticipation of the anniversary of the day my daughter died caused me to mope around aimlessly not sure of how I felt. I found myself becoming involved with monotonous time passers like Words With friends on Facebook and flipping through magazines without reading them. I had every intention of blogging but couldn't bring myself to actually do it.

Before we left to Great Adventure 10-17-2010
Also referred to as the day KoKo died

Initially in a sad attempt to conquer a potential stigma, I planned a trip to Great Adventure's fright fest, but slowly most who planned on attending backed out. By Thursday the only remaining attendees were myself, my oldest daughter and my second to youngest sister. Oh, and her friend. A fun filled trip this did not make. By Friday  the thought of the small group of us driving for two hours to supposedly get thrills and chills on roller coasters only gave me thrills and chills of dread. Needless to say we did not go.
My daughter was very disappointed. I tried to explain to her what I was feeling and why the trip was cancelled but she didn't seem to understand. I hope she does one day.

Sunday October 16th, prompted by a dream I had two nights before, I got up and went to church. The message pertained to quite a few things going on in my life. The pastor spoke about the invisible army God has in place for us during our times of trials and tribulations. Guardian angels and such, that deliver our prayers to the creator. Before I continue I must explain for those that don't know. I'm not a christian or church goer, but I am very spiritual and I know there is a God. Uwakokunre passing over had me questioning a lot of my beliefs because I was confused, and that confusion sowed a seed of doubt. That doubt only led to more confusion and I just wasn't sure anymore.

My dreams I believe, sometimes serve as windows into the spiritual world and allow me to see that which I cannot when I am conscious. Anytime I dream I was in church, I go to church that same sSunday. And without fail, each time I go the preacher not only touches, but focuses on a subject that pertains to me and the things going on in my life at that moment.  This Sunday was no different. In addition to the sermon the Pastor anointed everyone in oil and took personal prayers anointed those, blessed and burned them. I asked my mom, who is a member of this church along with one of my sisters, has he done this before to which she replied "not since I've been coming". I confirmed a lot that day, but it does't compare to what takes place on the next.

Monday October 17th, I started the day with a post on Facebook requesting everyone to wear pink in commemoration of KoKo and her favorite color. After returning from dropping my youngest to school I argued with my 'not boyfriend' about something ridiculous. I was emotionally numb to pretty much everything he said and awkwardly drifted through the rest of the day avoiding him.

KoKo and Me (her mommy)
New Years eve 2009

I decided to go to a spiritual class being held at the church I went to the day before, later that evening. My mom showed interest in going so we decided to go together.  Me looking forward to that was one of the most eventful things of the day.  No grand displays of tears, no ultimately depressive sadness, no displaced anger. Just an overall lull of emotional silence that lasted until dinner time.

I prepared dinner for the family before I left to pick up my mother. After parking in front of the church I noticed there was very few cars. It crossed my mind that the class may have been cancelled but we went in anyway. We were greeted by a nice older man emptying water on the sidewalk who to old us that everyone left and class was cancelled. His claim was backed up by a sign on the door leading to the sanctuary stating in stead of class the Pastor will be preaching at a revival taking place in the next town. My mom and me stood there contemplating what to do next. After a couple of 'its up to you' exchanges, I told her I was curious to see what was happening. So we went.

Pastor Ron B. Christian.
This is the best picture
I could get wit my camera
but trust me the shirt is pink. 

The service was encouraging, uplifting and motivating. And on top of everything else the Pastor had on a pink shirt, and there was a pink miniature church on the alter behind him! Whether she followed us there or led the way, I felt KoKo's spirit was present in this place. My heart was the most at ease then it had been in the last year.
I was so touched by the pastors unconscious gesture of commemoration, I prayed that I got a chance to see him face to face to thank him. Unfortunately he dipped out of the back door right after his sermon.

When me and my mom got back to the car I sat and spoke to her about how the revival the the pastors message affected me. That's when the tears started to roll. I didn't cry because I was sad. Don't get me wrong I was and will always be hurt about the way Uwakokunre died, and her absence will always leave a hole in my heart, but I cried tears of relief sitting in my car after a revival in a church I'd never been to. I felt and feel like all of the puzzle pieces flying around in my head are finally starting to fit together. The weight on my heart isn't so heavy anymore and I am starting to accept that what will be will be. But it doesn't stop there.
After finding our way back to the parkway my mom calls one of my sister's who happened to be at TGIF's.  The thing is my mother asked me did I feel like going before we got on the parkway and I decided against it. I wasn't in the mood to be around average Joe's and common Jane's in a loud environment drinking alcohol and eating fried foods. But as soon as I heard my sister was there something told me to go. So we went.
As we walked through the large heavy doors, my mom questionexclaims "Is that my pastor!?" I looked around thinking she saw him on T.V. or something, but lo and behold there he was tucked away in an empty corner of TGIF's in West Orange. He was accompanied by two other people, one of whom I knew from going out with my mom. I was flabbergasted!!  I was able to thank him for wearing pink on the anniversary of my daughters death.

The Lord works in mysterious ways but if we dissolve ourselves, open our souls and really listen, we'll find it's not as mysterious as it seems. Everything happens for a reason and for a reason everything happens.
My baby is no longer here with me in the flesh but I have excepted that in the spirit she is in and around me always.
That being said I'm considering this being my last post. I do wish I posted more often but I rest assured in the fact that I posted when I was suppose to. Writing helps me a great deal and Losing My Pink KoKo has been a great deal of help. Thank you to all who've read and shared in my journey during the year after my daughter died. I hope that I'm not the only one who's benefitted from this.
Scratch that. I know I'm not the only one who's benefitted from this. So who knows, if the spirit tell me to, I may continue. Until then...... Amen

Everyday God is good and God is good everyday. 

9 Months 26 Days

Along with SMA, KoKo had PKU, which is a metabolic disorder that affects the kinds of food she can eat. She was the only person medically documented in America with both diseases. Her doctors found this fact interesting because both deceases are degenerative hereditary conditions, and the chances of a child being born with both was one in a few million.

KoKo isn't the only one out of my children with PKU. My 14 year old daughter has this condition as well, and her and KoKo share the same metabolic specialist.

Our last visit to see my girls PKU doctor was about a month before KoKo died. You can imagine my hesitancy to go there again. Since KoKo's birth our visits to see this doctor was a bonding time for my two girls. It was something they were comrades in. They had to drink a special formula and was limited to certain foods to keep the PKU in check. In short neither of them had to jump this life long hurdle alone.
Now that KoKo's gone the thought of going back for my teenager's checkup made me extremely anxious. I'd never been there without both my girls. Even when my 14 years old was living with my aunt and grandmother, when she was little, we coordinated their visits together. I was terrified of being overwhelmed with KoKo's obvious absence, and that fear made me conveniently "miss" the appointment scheduled in June.

KoKo and Montsho

I know this was extremely selfish of me. My teenager bugs me regularly about going to her PKU doctor. She's old enough to understand that she needs to be monitored and the time between visits had been very long.
I know that losing one child does not stop my responsibilities to my other children. Even in death life still continues, but the dread that I felt as the appointment day approach rendered me.....immobile......frantic......depressed. My allergies even went haywire the day before the appointment. My mental state had turned on the body that was its captor.

The doctors secretary called me a week later to inform me that I missed my daughters visit. I'm embarrassed to say I played stupid and acted like I thought it was July 27th not June 27th. I rescheduled for August.

The day came for me and my 14 year old to go to her appointment. Everything about that day was exactly what I feared. I scheduled medical transportation two days prior, and though it was the same company that took KoKo back and forth to school everyday, it wasn't a medical vehicle at all. We were picked up in a green minivan, with no lift or special equipment that I'm use too. KoKo's absence was painfully clear and reflected in everything that went on that day. We got to the doctor and the elevator was empty, reminding me of all the times I wished it was vacant of other people so I could avoid rolling over  toes and bumping into legs with KoKo's wheel chair.

Being the first appointment of the day we saw the doctor ten minutes after our arrival. Everything with my teenager was routine, and then the doctor asked me how I was doing.
I couldn't' contain the tears. My eyes welled with so much water I could barely see.
We spoke about how the kids were handling our family disaster as well as the recovery process. By the time our visit was over my makeup was wrecked and I was emotionally spent. We finished our appointment revisiting some memories of KoKo and double checking my teenagers diet plan.

When the transportation picked us up we had a fellow rider. An old Egyptian man that rode with us and KoKo on various occasions to the doctors office. I said hello and he didn't recognize me. When I mentioned my daughter he remembered instantly and asked how she was doing.
I've recounted the events surrounding KoKo's death over a hundred times now. And every time I do it it's like opening a new wound all over again.  
 

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. 

6 Months 6 days

It's been a while since I've posted. A lot has been going on. In other words I've been so busy with work and play that my mind has been distracted from my sorrows. Until Mother's day that is.

I noticed among all of my Mothers day wishes I received via text messages, there was a large group of people that did not reach out to me. My brother for one, my "God father/baba" (for lack of a better description) and all of my wonderful spiritual siblings. And to make matters worse, one of them called my sister and spoke to my mom. Nothing for me though. What the hell was going on?!! KoKo grew up with these people! How can they supposedly be on the path of riotousness when they don't practice the most common belief parallel in all religions. 'Do unto other's as you would have them do unto you' and 'What goes around come around'. Well I have one thing to say to them all...Karma is a fat hungry bitch and the kitchen cabinets are bare.

Anyway, I dusted my shoulders off real quick and decided to reach out to my baba's wife. Since I don't personally have her number I had to call his. To make a long story short, he answered, I had angry words with him concerning the fact he hasn't reached out sing KoKo passed, to which he denied. After 20 minutes of listening to him BS me, I cut the conversation short by telling him to wish his wife a happy Mother's day for me.  I guess he did because I got a text message saying "same to you" from a phone number I didn't recognize.

Now that I've gotten that off my chest, back to business at hand.
I've been going through some of my videos of KoKo and I compiled a few of them spanning from 2008 to 2010.  Every time I watch it the rest of my children surround me and we share in happy memories, special moments and funny times. I have some other videos of my daughter when she was a baby but I have to pull them off of DV somehow and get them onto my computer to edit. Nonetheless, there will be more to come.

I am smiling now and will continue as much as possible from here on.

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.

4 Months 27 Days

Uwakokunre's birthday was last wednesday, March 16th. Though the day started off kind of rough, it turned out to be a good day. 

I planned a small get together with the family to celebrate the day she would be 10 years old. But like many of my "unofficial" gatherings, this turned out to be quite the shindig. My aunts and grandmother came. My sister and her boyfriend, who I didn't expect to show cause they had plans of their own, joined us. Even one of my younger sisters' mother stopped by. 

When I first decided to celebrate KoKo's birthday, I knew I risked setting the stage for a possible cry fest. Thankfully the curtain never raised on that performance. It was all smiles and laughter just as if KoKo was there. Near the end, one of my younger sister's dropped a few tears. But I announced that I refused to let any water escape my eyes, and the moment passed and ended in smiles. 

It took me a while to get myself started that morning. I had shopping and cooking to do, but I just couldn't motivate myself to do it. Though the weather was warm and sunny, and it was a beautiful day, for a good 10 minutes I actually canceled the party. Obviously I changed my mind.  

10/17/2010
The only picture I have
taken that day.

The night before KoKo's birthday I sat on the edge of my bed thinking about how she looked when I finally walked into the hospital room after a grueling 105 minute drive from Great Adventure. I tried to prepare myself for the scene of her laying there lifeless as I rode in the passenger seat of my truck. I called the hospital about 15 times for updates as to what was going on since she was taken from home by the ambulance.  After the 10th time everybody I spoke to told me the same thing. "The doctor will speak to you when you get here." I had a pretty good idea what I was in store for at the end of my journey. I continued to call for two reasons. One, to give myself something to do during the long ride, and two, I hoped I could trick one of the nurses into telling me the status of my daughter. That didn't work. 

On my last call to the hospital I asked to speak to my mother who was there with KoKo. I was cruelly left on hold listening to the bustle of the emergency room while I strained to hear any conversation with the subject matter of a 9 year old, SMA or Uwakokunre Ayinde.  My mother never came to the phone and after about 10 minutes on hold someone finally just hung up. 

As we saw the sign to the East Orange exit off of the parkway, my heart was racing faster then it ever had in my whole life. Besides for the whimpers of my sisters sobbing in the back, the truck was silent.

At her checkup 10/13/2010

As soon as we pulled into the parking lot I jumped out the car and ran inside. The hallway from the main emergency entrance to the door the security guard directed me to, stretched out in front of me like a scene in phycological thriller. I could't feel my feet touching the floor, and my armpits where tingling with the onset of perspiration.  I could feel an asthma attack coming on as I prayed over and over in my head 'please lord let my baby be alright'. 

As soon as I walked through the doors where the nurses station was, the whole staff seemed to look at me as if they knew who I was there for. An asian woman asked me if I was Ayinde's mother, and by her body language I could tell what curtain my baby was behind. Everything was a blur. I think I whisked  passed my uncles wife who worked at the hospital, but honestly I don't remember much of what my eyes were seeing before the sight I was most dreading. 

When I pulled back the curtain the first face I looked for was my moms. I wasn't ready to see KoKo's body yet.  I needed somebody to confirm what I feared before my suspicions became a reality. I thought that would make the blow less painful. But when I saw the tears streaming down my mothers cheeks, I felt like someone punched me in the stomach, and I immediately bent over in the direction of the bed where my daughters body lay. She was gone! Oh my god please no! I wasn't here! 

She looked like she was only sleeping. Her hair looked as though there was still life in the strands.

The color of her skin was fair and golden, not pale and grey like I thought it would be. Her cheeks, torso and hands where still warm. Not cold and stiff like they portray on T.V. 

Maybe the Dr.'s made a mistake. 

KoKo chillin' with her little brother
3 days earlier 10/14/2010

I wanted to shake her but I was afraid if I did and she was still alive, me shaking her would kill her. I lifted up the sheet that was covering her body and saw her wrists and ankles bound with medical tape. There was an open ended tube coming out of her mouth that I knew led to her lungs. Something told me to check her teeth and I found them broken as a result of the barbaric unskilled attempt to intubate her so she could breath. 

I was so angry. Angry at myself for not being there. Angry at myself for letting a nurse I didn't know well take care of her. Angry at myself for not taking her to the beach that summer. Angry at myself for for going somewhere so far away to have fun. Angry at myself for not being there....... Disappointed in myself for not being home......Mad at me for not being with her. 

We as individuals  know the truth that is in our own hearts and minds. Some of us try to fool ourselves into believing what we know to be true, is not true at all. We  lie to ourselves so that our wrong doings don't seem as wrong as we know they are.  Some are good at this and others aren't. 

Some of those that aren't turn to substances, like drugs and alcohol, to forget and dull the guilt and pain that comes with knowing our true selves. Some of those that are, pray to a higher power with the belief and excuse that one must only ask for forgiveness and they are forgiven (can anybody say presumptuous?).

Then there is the question of someone committing a trespass against us. As the victim we may either forgive them or remove them from our lives.   

I believe in my heart if I stayed home that day, KoKo would still be alive. 

What do you do when even for a moment you can't forget, you don't believe in a God that absorbs the repercussions of your actions just because you said please, and you are the person you won't forgive?

4 Months 7 Days

Time is of the essence.
Losing KoKo brought much attention to my own mortality and that of my other children. Not that I didn't appreciate life before, but now I pledge to use every minute of every day for something positive, productive or both.

I dedicated a lot of my time to improving the quality of life of my Uwakokunre. Now it seems like I have a lot of time on my hands but it comes with a deadline.  Plenty of it but none to waste. I know it sounds like a paradox, but if you think about it, it makes perfect sense.

I jam my days with project after project, and if I can't do anything on one for lack of funds or resources, I clean and organize my house along with maintaining the integrity of my family.

I have three books in the works, and at night when I lay down to sleep, ideas swirl in my head like a whirlwind. Which then to my mans dismay, causes me to get out of my bed and sneak to the computer.

Sometimes I find myself wondering if I will lose one of my other children by some freaky mishap. Or maybe they'll lose me.  It's not a positive thought, and I dispel it quicker then I can say it out loud. It's just KoKo's passing came as such a surprise, and I realize now I have to be prepared for anything. I must provide my remaining children with the life that I didn't have and always dreamed of.

I want to leave them a legacy. I want them to enjoy they're term on this planet, in my charge, to the best of my ability and more. I want them to experience everything wonderful that East Orange, Essex County, New Jersey, United States of America, and the World has to offer. And all before God says it's time for them or I to come home.
I hope I can do it.  

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 16 days

My last post took a toll on me emotionally. That's why I haven't posted in a while.
There are some things in my life since then that seem to have changed dramatically for the better. I got a new vehicle. Things are looking up for my business. I've been less stressed financially. You know how they say it's darkest before the dawn? Well I'm starting to feel like I'm finally getting a clear view of the sunrise.

My new car is a Nissan Quest minivan.....that's a funny thing actually.  I figured I would need to get a minivan, or something along those lines, sooner or later. I didn't want to be associated in any form or fashion with a "mom-mobile", but I knew eventually it would be the practical thing to do when Uwakokunre got bigger and would need a lift  for her and her wheelchair to go on family outings. That being said, isn't it ironic I get a minivan after she's gone?

Whenever I'm in this vehicle I look to the backseat and can picture her face clear as day smiling at me. Even better.....in my new van we have a dvd player. Oh how she would love that! My man put KoKo's Camp Rock movie in for the boys to watch on our way to Ikea.  It was the only time my 3 year old found the disney movie entertaining! Hearing it in the background as I drove brought back so many memories.

See, Disney was KoKo's favorite channel, and her little brother couldn't stand it! When she'd be watching 'That's so Raven' on netflix in her bedroom, he would come and press pause in the middle of the show knowing good and well she really couldn't do much about it!

KoKo would call my name over and over to tell on her brother, and just as I walked through the door to respond, that little boy would press play like he did nothing wrong.
Well look at him now, watching Disney's Camp Rock just like his sister in our new (gasp) minivan! Who would've thought.....

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....