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. 

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.

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....