Holiday Blues

I am sorry I haven’t been in touch lately. We received Halloween goodies from Angel Amy (www.chemoangel.com). The kids enjoyed them quite a bit.

 

I have been down in the dumps as the holiday approaches and really don’t want to do anything. My sister is pushing me to come to my moms for the holiday and I am not quite I am up to it. I usually cook and bake bread. Last Christmas was the first time we didn’t bake cookies and give them to family and friends since we started the tradition because Ne-Ne was sick. I am not sure I am going to be up to it without Ne-Ne.

 

 

I am house shoping right now and hoping to find something to suit our needs and wants soon. I want a fireplace, basement and wall oven. Most in my price range need significant repairs which is something I can’t do. So I am just praying and looking.

 

 

School for me and the girls are going well. I have been quite grumpy lately and a good friend Sumer bought me to task on it. I have been holding so much in. I want to cry but rarely have a place or time to do so. I want to be comforted but can’t seem to find any. I think I am depressed and am considering meds but not too sure about that.  My hair is falling out, my weight is up and I sleep way more then I should.

 

 

I am usually a Christmas pig. I love putting up the decorations, buying gifts, etc. Even being on a budget never stopped me. Now I just cant get into the spirit. I feel almost guilty for having fun without her.

 

 

Last night Doozie built a fort with empty hampers, blankets and other furniture in the living room. I was happy that she was playing by herself using her imagination but so sad because I remember Taga, Ne-Ne and Doozie doing this just a few short years ago.

 

 

The other day Doozie had a picture of Ne-Ne and she was playing pretending the picture was Ne-Ne. I ache for my babies. Taga talks about Ne-Ne on her MySpace page and how Ne-Ne was her best friend and the only person who understood her. Ne-Ne’s love was so unconditional. She was accepting of all of us faults and all.

 

 

The online support group thru yahoo for bereaved parents of brain tumor children helps quite a bit. I wish they had some sort of camp or retreat for parents whose children died from cancer. I think its different then when your child passed in an accident or some such. (Although the pain is there no matter) With cancer you have devastating news but hope that there’s a cure. You fight for many years of fighting, for some remission, and then relapse, then death and for others there is no remission before death. To go from caregiver and adapting your life to that fight knowing you’ll sacrifice anything for your child to losing him or her you wonder sometimes where you went wrong. You look for blame where there is none wondering should of could of. Was it the fall off the bed at 1 or standing in front of the microwave before I caught her and told her to move stop watching the food cook its not good to stand there.

 

 

In the end I know what the Bible tells me and what my faith says that our birth and death is already written. So if not cancer it would have been something. Yet the pain isn’t lessened. The belief that this is for a purpose doesn’t make sense. What kind of plan involves taking a sweet innocent child from their mothers loving arms? Why not a child who is going to group to be a murderer or rapist? Why my baby who wanted to be a teacher and help the poor kids?

 

 

I’ll never know these answers not here in this life. Once I’m in the next life I know I won’t care anymore because since I missed so much of her life I will be trying to catch up and hug and love on her for the times I missed.

2008 Ne-Ne & ‘Ems Team

Thanks to everyone for walking and fundraising! We exceeded our goal. I don’t have the final count but thanks so much. Hope to see you next year. Photos coming soon from Cousin Shontay!

Jay Budd*

Katherine Budd*

Marie Goddard

Shartaga Milbourne

Shannon Phillips

Patty Young

Nyfeesha Phillips

Nicole Goddard

Dante Cunningham

Dante Cunningham Jr.

Sumer Smith

Quaadir Smith

Shanice

Richard

Latavia Milbourne

Shontay McCray

Janay McCray

Nicayiah Cunningham

Nylil Cunningham

 

 

*Not in  photo

More photos on the photo page! Thanks Cousin Shontay for the photos.

Race for Hope 2008

 Today was a mixed day. Two of my cousins met me at the house and we rode together. Unfortunately, they thought I knew my way ore then I knew. We got to the walk a little behind schedule due to parking difficulties and confusion with another walk. Our team started out separate since we did not meet up like planned for various reasons. I am positive that we exceeded our fundraising goal of $500. One team raised over $300,000 Wow!!! We all agreed we plan to walk again next year. A few of us plan to run next year or ride bikes. We also decided to fundraise a little early and spread the word more to reach our goal!

 

I saw some of Ne-Ne’s team from the hospital. It was so good to see them show up. I talked to Dr. Belasco for a little bit during the walk. We talked about the candle lighting ceremony, which takes place twci a year. I didn’t have the courage or strength to go to the ceremony in September. Another one will be coming up soon and I’m not sure if I’ll be able to go. Dr. Belasco explained the ceremony a bit to me and told me it would be there for me when I am ready to go I just love Dr. Belasco. She really cares about us. The night Ne-Ne passed she came in to the hospital to see us and say goodbye to my baby!!! Not many would get up out their bed to do so especially after so many years of practice.  It was also nice to see Dr. Mantour, Nicole Pier our social worker and Connie the nurse practitioner! They were such an important part of our lives during that time. I just wish I could go back and just hold and smell my baby. Kiss her and love on her.

Almost everyone returned to my house afterwards for a mini-BBQ. The kids enjoyed the walk as well and want to walk next year again.

 

The mixed part came in on the way back home. The Ben Franklin Bridge was closed this morning. I figured out why when we had to detour to get home. The motorcycle toy run to the hospital was happening. WE ended up near  CHOP and it was so heartbreaking to remember how much hope I had last year on this day. I even know which room Ne-Ne was in. She had been in so many!!! The motorcycle Santa came up to her room to bring her a present, took a photo with her and gave her a t-shirt. I can still her smile and remember how much hope I had for her recovery. I almost broke down driving. I just had to keep smiling for everyone. It was so bitter sweet. I am happy that there are such wonderful people in the world that helps others. I just wish my baby was still her to enjoy it. Driving in that area reminded me of my favorite pizza place Drexel Pizza. The lady that owned it with her family went to Greece while Ne-Ne was sick for a bone marrow donation to a family member. She was so nice every time I went in she asked about Ne-Ne and we talked about our families. She loved her husband and children so much. I occasionally wonder how she is doing. If her family is okay? I don’t pray much anymore but when I do I try and remember all the people who have touched our lives. I am not even sure if everyone realizes the impact they had on us.

 

Sumer always encourages me. She helped cook and do dishes while at the house. Shontay got me a card and everyone signed it. You never realize how much your loved and people care until times like these.

 

The other day I dreamed about being on campus at school at Franklin University. Me and Taga, Ne-Ne and Doozie were there. We were there to live on campus for a semester. Ne-Ne was on the school bus coming home and I was trying to get her off. When I woke up I cried. I remember going to William Carey College in Mississippi and how they girls used to join me on campus for various activities such as working in the student café, student council meetings, the library and volley ball. I wonder what happened to Ms. Una, Beth and Troy to name a few. Ne-Ne used to call Beth’s daughter Barbie. She used to say mom where’s your friend whose daughter’s name is Barbie. It wasn’t Barbie it was Darby. The memories were kind of like heaven sent because the next morning on tv was the Winnie the Pooh show with Darby!!!! Sumer always reminds me how good a mom I was. I feel like such a bad mom at times. I cussed at Taga Friday on the phone about cleaning up then I felt so guilty.  I talked to her yesterday.

 

I think I shouldn’t of went back to school so quick. I am overwhelmed with work, school, grief and parenting. Yet it keeps me busy a little less on the crying and its not fair. 

 

I am so angry that my baby didn’t survive. Why did she have to get cancer? Why not just a low grade optic glioma? Why a high grade tumor in an inoperable area.? I tell myself all the quaint clichés but it doesn’t work. One mom on my online support group talked about the pain and sadness. I so understand her pain. How can you hurt so bad without feeling physical pain? I understand now the things people in grief or trauma do to hurt themselves. Its like how can you feel such pain inside without feeling physical pain. I used to wonder how someone could waste away from grief now I understand. I keep going each day taking one step at a time. I know it will get more manageable.

Ne-Ne & Em’s: Race for Hope-Philadelphia

We are walking on November 2 in Ne-Ne’s Memory!!! Join our team and help find a cure!!! If you can’t walk with us just show your support every dollar helps no matter how large or small!!!

We will also be selling professionally designed and printed team shirts with Ne-Ne’s picture. If you want a t-shirt please email or call Marie with your shirt size.

www.braintumorsociety.org/goto/NeNeandDem

Hope to see you there!

Ask my mom how she is today

My Mom, she tells a lot of lies she never did before.
From now until she dies, she’ll tell a whole lot more.

Ask my Mom how she is and because she can’t explain, She will tell a little lie because she can’t describe the pain.

Ask my Mom how is she, She’ll say “I’m alright.”
If that’s the truth, then tell me, why does she cry each night?

Ask my Mom how is she, she seems to cope so well.
She didn’t have a choice you see nor the strength to yell.

Ask my Mom how she is, “I’m fine, I’m well, I’m coping.”
For Gods sake Mom, just tell the truth just say your heart is broken.

She’ll love me all her life, I loved her all of mine.
But if you ask her how is she she’ll lie and say she’s fine.

I am here in Heaven. I cannot hug from here.
If she lies to you don’t listen, Hug her and hold her near.

On the day we meet again, we’ll smile and I’ll be bold.
I’ll say, “You’re lucky to get in here, Mom with all the lies you told!” -unknown

Quick entry

Since Nikirah has passed my life and the life of my girls has changed so dramatically. While she was sick I didn’t touch this blog. My time online was spent searching for that miracle cure. I didn’t think her illness would progress so quickly. Her setbacks would be so large and so quick just like her death.

I plan to use this site for the next year or so to journal, fundraise, and support other families. I think it will be kind of therapeutic to go back and journal about this past year and the changes. I have visited other families sites whose children have died from cancer and the emotions they talk about are so similar to mine. Sometimes I am shocked and wonder if I wrote those words. The experiences are so similar, the sadness, grief, rebuilding of life and changing of outlook.

 

Taga and Doozie are doing. Our life has gotten back into a routine with us saying I love you just a bit more and hugging just a bit longer. We still take each other for granted at times but then we remember that tomorrow is not promised. Guilt and worry is there for us all as we think and talk about the should of, would of could of.

Doozie saw a commercial on tv for St. Jude and asked why didn’t I take Ne-Ne there because they could of made her better. Taga holds back tears when we talk about Ne-Ne and I hold her and tell her its okay to cry.

 

I wanted to cry when I saw Junie B. Jones books in Wal-Mart and shopping has been hard. You never realize how much special things you buy for someone. I almost cried last night when I saw the Naked Brothers Band has a new movie. Ne-Ne had a crush on them as does Doozie!!! I should of made meeting them her Make a Wish. (more regrets of things never to be)

 

We have decided as a family to do those things that were important to Ne-Ne. Like reinstituting our family nights, helping Camp New Friends and the kids whose family are mean to them. I am back in school online and plan to march by the summer. My girls are supporting me. Ne-Ne is cheering me on from Heaven.

 

Taga is dedicating her high school career to Ne-Ne and she is off to a good start. I am so proud of how we are pulling together as a family. Doozie and Taga still argue but they are both brats as was Ne-Ne. My babies but rotten brats none the less!

I don’t have a lot of time to write so I just really want to let everyone know some of the things we have done or are planning to do. Pics, as Taga says and more detail will follow.

 

Events:

Philadelphia Race for Hope: We are walking on Nov 2 to raise funds for the Brain Tumor Society. Please join us. I am getting t-shirts made up with Ne-Ne’s picture.

 

Big Apple Circus: We will be going to the circus in New York. This is sponsored by the Children’s Brain Tumor Foundation. The girls have never been to NY so we are going to make it a fun day trip. (so many regrets for things Ne-Ne never got to do or see) Taga wants to shop but we are saving for a home so that’s out. Okay maybe we’ll buy one thing.

 

Camp Erin: Taga and Doozie went to this grief camp in Pennsylvania for a weekend. Taga didn’t want to go but I made her. She had a ball. It was kind of therapeutic for them. I am looking into another camp for Taga.

Birthdays: We made it thru. This was the first birthday that Ne-Ne and Doozie didn’t celebrate together since their birthdays are so close. I visited the cemetery and decorated the grave with their dad on Ne-Ne’s day. It hurt so much but her tombstone looks good. I plan to do a memorial garden when we buy our house in the next few months

 

Camp New Friends: With the help of Ne-Ne’s wonderful Godmother, Leta and Godsister Tesha we made Daily Survival Kits and mailed them to the camp for campers and counselors. It was hard knowing Ne-Ne wouldn’t be somewhere where she blossomed so much. More on this later….http://www.nfmidatlantic.org/newsletters/nfAug08nwsltr.pdf  

 

Fred’s Footsteps: We went to a fundraising dinner for the families they supported. There was high society, mini-golf and Doozie being a Doozie. This agency is wonderful. They helped us those last few months with bills, repairs, etc. They support working families whose children are ill.

 

Emmanuel Cancer Foundation: Earlier in the year we did a kids walk for the Emmanuel Cancer Foundation for children. We didn’t raise much but it was family time. I made t-shirts for the kids and Taga, Doozie, Za-Za and Na-Na walked. We ate some donuts and enjoyed the fresh air on the boardwalk in Ocean City, NJ. We had a great counselor/social worker thru them. Sadly her husband was diagnosed recently with the same type of tumor Ne-Ne had. Keep her in your prayers.

 

I remind myself when I want to waste away that God has a plan, even if I don’t agree with it. I have to keep living; fighting and getting up if I want to one day join my baby in heaven!

nightmare

I keep feeling like I am living a nightmare. I see Ne-Ne’s picture and I think this is not my life. I am going to open my eyes or go home from work and she’s going to be there. I let my other two girls stay home from school on Thursday. We had been running lately and they were exhausted. My 6 year olds teacher sends home a note Friday stating that she hopes attendance isn’t going to be a problem this year like it was last year. Well I wrote her a note informing her that while school is important so is having a breather. When she has walked in my shoes then give me a call. My youngest daughter brings home stories she wrote in class about her family.

Her teacher does a student of the day everyday. When this happens all the kids write stuff about the student down and the teacher makes it into a book for the child to take home. Well Latavia’s book came home and the kids said stuff like she’s nice, friendly, pretty, etc. They also said that Latavia lives with her mom and two sisters. Sadly Latavia no longer lives with two sisters but just one. She must tell everyone about Ne-Ne in the present tense. I remember when I told her Ne-Ne had died and she wouldn’t be coming back because the part of her that makes her her went to heaven with God. She said Mommy will God let Ne-Ne come play with me sometimes? I had to tell her no. She cried and said whose going to play with me and sleep with me? She had been dealing with Ne-Ne being sick thinking and praying that she would get better so they could play, bathe and sleep together.

This teacher who doesn’t know us from a can of paint is going to send a nasty note about being absent!!! Watch your child’s body get bloated from meds, and no cure is available. Hear your baby apologize for needing assistance to eat, drink or use the bathroom. Answer her when she asks you why do bad things happen to her? Then tell me that getting to school everyday is your number 1 priority. Yes life goes on but sometimes we just need a minute to sit back, relax and smell the roses. I am angry that the earth is still rotating and my sweet girl is not here. How is it fair? How do I keep acting like everything is ok each day? Working, cooking, cleaning, going to school, worrying about the bills, and the car breaking down when there is such a hole inside of me. I am bleeding internally yet no one knows I’m hurt so bad!!!

Going to school, being kind to others, prayers, none of all the good stuff we did gave us our happy ending. There was no last minute cure. No one woke me up to tell me that it was just a bad dream. I’m waiting why someone won’t wake me up and tell me its okay it was just a bad dream?

I am angry that I didn’t get my kids to Disney or buy us a house before Ne-Ne left. Watching Lilo and Stich makes me cry because Ne-Ne always said “Ohana means family No One Gets Left Behind yet she’s going.”

My Ne-Ne her last year of school in 2006-2007 it snowed and school was opening late. Most of my friends and neighbors were keeping their kids home. I had told them to stay I didn’t have to work. Ne-Ne whined because she wanted to go to school well in the snow and all she trudged to the bus stop and waited 30 minutes for the bus because it was late till she finally turned back and came home. After I called the school she went back out to get on the bus. This was maybe 9 months before diagnosis. A year after this on February 29, 2008 she takes her last breath.

The funny thing is of all of us Latavia who lost her companion and play mate has not lost her faith in God. It hasn’t diminished one bit. She will lose something or hurt herself and she will say I prayed to God to make it better mommy. When we go shopping and I say no you cant have that she says mommy remember I prayed to God for a whole lot of money for you and when he gives it to you we can get a new house, a new car and you can buy me xyz. To have the faith and innocence of a child. I wouldn’t even pray if it wasn’t for her making sure I talk to God.

A big sister’s view

Okay so the small one in this pic. is Nikirah a.k.a. Nene. And im the other one, and her older sister. We’re not how we look in this picture though, because its old. Anyway,.. im goin to be posting blogs on this now because Nikirah passed away about 7 months ago. And now that i think about it, it seems like it only happened last week. She passed February 29th of this year (2008). Ever since them things have changed alot around here; and in my life. I looked at things differently; stopped caring about things i used to; and i care for things i didnt. People dont seem to understand everything i’ve been through & they swear they do; but they really don’t. Its beenhard on me and my family, but we been doing okay

Nikirah’s Heart

A poem about NF

NF is a gene that causes tumors to grow

Inside or outside of your body do not

Be scared to wear tank tops or any thing

Shows your NF when somebody

Makes fun of you don’t be sad

Cause you’re all beautiful in different waysJ