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

Help! Its a setup

Ok I was challenged by a friend that I couldn’t run the 5k Brain Tumor Walk on November 1. If I can run it he will donate $100 to one of Ne-Ne’s causes in her memory. If I can’t run it I owe him $100. I have been training but it doesn’t look like I am going to make. I can’t even walk 5k. It’s too late to back out now what do I do. I’m never going to make it. Help! Help! Help!

I keep telling myself I can do it then on days like today when it is 100 degrees outside I think I am crazy and lazy. I can’t do it. There is no way short of a miracle that I will be able to walk it let alone run. I am like 80 pounds above my optimal fighting weight.

He’s not going to let me back out and several times a week he likes to ask “what are we doing for lunch today Marie?” He is setting me up!!! I need some serious help and tips. I have this plan called from couch potato to marathon runner it’s not working. I can’t breathe, my knees hurt, my ankles hurt, my calves hurt., my ankles are swollen, and my feet hurt. I’m HUNGRY! Someone put me out of my misery. Hopefully after reading this he will take mercy on me but I doubt it.

God’s Will (Not)

The title above may get some people upset. Yet after reading the eulogy of Scott Lysenko a little boy who had NF1 and a brain tumor like Ne-Ne I knew I had to share this. Scott has been in heaven since 2004 and I am sure was there to help show Ne-Ne the ropes. I have copied and pasted the sermon below because of everything anyone has said to me about Ne-Ne’s illness and death this has probably helped me the most.

When I read it it was like a light bulb went on in my head. This is not God’s will. His will is for us all to live a long life. Okay I am going to stop talking and let the Rev. Francis Hubbard of St. Barnabas Episcopal church say it. For those of you that knew Ne-Ne you can just place her name where Scott’s is in many of the words below. Be sure to read the scriptures noted as well for true understanding.

For Scott’s full story visit his families caring page. Several members of them have nf1.

“Lamentations 3:22-26, 31-33
Psalm 23
2 Corinthians 4:16 – 5:9
JOHN 14:1-6

Sermon for the Funeral of Scott Lysenko
February 27, 2004

Scott packed a lot of living into 7 ½ years.

He threw himself enthusiastically into a blizzard of activities with family, friends, schoolmates. He loved Cub Scouts, T-ball, soccer, swimming, Vacation Bible School, playing in the woods, catching lizards, frogs and, yes, geckos. And smuggling them home, even on airplanes, much to the surprise of his parents. He loved to draw, loved to bounce on the trampoline, loved to play Gameboy and Gamecube. He loved to go out at night with his Dad, searching for animals. He loved to pray, too, and got very, very good at it.

He was a terrific boy. And he used every opportunity to be a kid to the max.

And he was born with a condition, neurofibromatosis, that left him susceptible to brain tumors, like the one which cut all that full-speed-ahead boyish living off just a week ago.

It stinks. It really, really stinks. It hurts. It’s not fair. It doesn’t make sense. What kind of a world is it where this can happen to a kid?

It’s a broken world, this world we live in, in which terrible, tragic things can happen to good people, and to innocent little kids. We see the brokenness of the world manifested sometimes in the hurt people may inflict (deliberately or carelessly) on other people, sometimes in the accidents all kinds of people may have, and sometimes in mysteries. Like this one.

I don’t know why Scott had NF, or why he got the brain tumor, or why now. I haven’t heard any medical explanations for all this, and even if I did, they would not answer all of the question “why.” And I don’t have any “cosmic answer” for why this happened either.

But I do know that some of the so-called “cosmic answers” I’ve sometimes heard are wrong.

This tragedy is not a “test” of anyone’s faith. How cruel would that be. Scripture contradicts that theory: as today’s Old Testament reading says, “The Lord does not willingly afflict or grieve anyone.” There is no celestial sadist at work here.

I also do not believe that “this is God’s will.” Jesus never told that to a grieving person. Instead he affirmed that God’s will is life, healing and love.

But we live in a broken world—made by God, pronounced “very good” by God, but now broken. Broken, but one which is beginning to be made new by God.

In the Lord’s Prayer, Christians pray “Thy Kingdom come, Thy will be done, on earth as it is in heaven.” This prayer reminds us that God’s will is done perfectly and all the time in heaven—and that God’s will is not done perfectly and all the time on earth. Not yet. That is why we pray “Thy Kingdom come, Thy will be done, on earth as it is in heaven.” When the Kingdom of God comes, God’s will will be done on earth as it is in heaven.

In the meantime, God is with us here on earth, helping us to get through the pain, loving us and helping us to love others, opening our eyes to the wonderfulness of life here and now and promising that no matter when individual lives on earth end, that isn’t the complete end of those lives.

God understands pain. In Jesus Christ, God absorbed all the pain his torturers could inflict on him and never let himself be lowered to their level—he never let himself hate. Even and especially on the cross he radiated love—love that is stronger than pain, stronger than hate, stronger than death itself. God also understands helplessness; God the Father had to let his Son suffer and die without intervening so that he could absorb all of the world’s brokenness in his broken body on the cross, and so begin making the world new.

So if we’re ever in pain or ever feel helpless, God understands. God’s been there.

And as painful as suffering and death are, God promises that they are not the end.

St. Paul writes in today’s Epistle, “even though our outer nature is wasting away, our inner nature is being renewed day by day.” That happened with Scott. His illness was not just the last part of his life on earth; it became, you could say, “spring training” for his new life in heaven. His inner nature was being renewed day by day. And his renewal did not just benefit him; his precocious spiritual strength is an inspiration to us all. Just two days before he died, he reminded his mother they needed to pray for courage. He already had it, and got more.

The Lord is our shepherd. “Though I walk through the valley of the shadow of death, I will fear no evil, for you are with me.”

Jesus promised his disciples—and all the faithful—in today’s Gospel reading that “I will come again and I will take you to myself, that where I am, you may be also.” Christ has been through death to new life—life unfettered by any illness, pain, disability or sorrow. Life without limits. Christ during his earthly ministry took children in his arms and blessed them; he always had time for kids. He still does.

Imagine what Scott is learning now about animals from the One who made all creatures great and small.

So today is a day we really hurt. Though Scott doesn’t hurt anymore. And today is a day it’s o.k. to ask “why?” Though ultimately, perhaps that isn’t really the big question. Perhaps the question is “How should we live?” I propose that we live with as much love of life as Scott had, and that we use the love that Scott inspired to join God in the healing of the world. There is a tidal wave of love that Scott inspired which has been visible all week, is visible today, and can continue to be visible for a long time to come.

Our broken world has too many children who no one takes to ponds to look for animals, who no one teaches to play soccer or to draw, who no one serves as a scoutmaster or a swim coach or T-ball instructor or Sunday School teacher, who no one reads bedtime stories to or teaches to pray, or visits when they’re in the hospital, or comforts when they’re lonely or discouraged. Let’s find some of those kids and share our love with them and make a difference in their lives, and when we see their eyes sparkle, we can say to ourselves, “This is for you, Scott: thanks for reminding us how to live.”

Scott’s O.K. now. Actually, he’s way better than O.K. It’s we who hurt. But we only hurt because we love, and therein lies the cure: not to love less but to love more, and to let the love of God flow into us and through us not only to give us hope for heaven, but to inspire us to make this world a little more heavenly.

(The Rev.) Francis A. Hubbard

St. Barnabas Episcopal Church”

What we learned

A family I met is holding vigil by their sweet daughters beside as she struggles to win the fight with a brain tumor. She has been in and out of consciousness, struggling to breath, blood pressure up and heart racing. Please pray for dear Alexa and her family. Don’t pray that her family accept her death but that Alexa is healed 100%. http://www.caringbridge.org/visit/alexabrown

Today her family posted about the anguish of not being able to communicate. When Ne-Ne stopped talking the joy went out of her. Within weeks she stopped playing connect four and Uno with me, her sisters and other visitors. The only time a smile lit her face was when I returned to her room. Even her favorite snacks stopped bringing her joy. She no longer wanted Icees, hot wings, or hot chips. She was tired. To be trapped in your body and not be able to talk, to not be able to go to the bathroom and barley able to feed yourself the horror and frustration she must of felt. I pushed for her to try and write and she refused. She would struggle to say Mom and it would only come out as Ma. I can still here her sweet voice calling me. It is unfair for anyone to suffer thru this let alone a child. She would try to communicate her wants and needs using that one arm but too soon she couldn’t even do that. She was unconscious and gone within two weeks. Her battle lasted just over six months.

It would take me at least five minutes to figure out what she wanted. Sometimes I think she would just finally agree because she was frustrated. She used to have a speech impediment when she was little and one day she told me she just said yeah because I didn’t understand what she was saying. For her to work so hard to get beyond that as a preschooler to end up even worst as a child who was just beginning to spread her wings and become independent. She was planning on walking to school with her friends in sixth grade instead she learned to stay at the hospital by herself when mommy couldn’t stay. She learned about cancer, chemo, radiation, tube feedings and how not all nurses and doctors care. She learned that stranger’s care and many believe in prayer. She learned her mommy couldn’t make it all better no matter how much she tried and doctors don’t have a cure for everything. She learned NF1 can kill. She learned that some people are too scared or selfish to visit a sick dying child.

I learned that you can live with a broken heart, that some people never change for the better no matter what happens, and that sometimes death is the only cure. That love is not always enough. That Jesus can take my anger, hurt and pain and will hopefully one day sooth it all.

Taga and Doozie learned that prayers don’t always get answered the way we want and they are definitely not like wishing on a magical lamp. They learned Jesus is always there even when we are in pain. They learned sometimes strangers and friends hold you down more than blood. They learned we are strong together and that we should hold each other tight because tomorrow may not come. We learned that love is an action word and if you’re not there in sickness we won’t allow you to be there for the good days. We learned to live each day right because we don’t know when we are going to be called to answer to God but when He calls us we want to be ready so we can see Ne-Ne again.

Most of all we learned that love is forever and can stand thru it all. We can do things we never thought we could like insert feeding tubes, clean catheters, change diapers, use a shower chair and love unconditionally forever and ever.

The future???

Does it get any easier? I have realized that the answer is no. Recently on PBTAngels@yahoogroups one of the parents explained how the 2nd year was even harder than the first. I understand. Life goes on. I mean it really really goes on. Even for Ne-Ne life is going on. She is about to be 12 in heaven. Yet for me she is still frozen in time. She is still my Ne-Ne at 10. The Ne-Ne who never learned how to ride a bike because she didn’t want to. I bought her a bike for Christmas when she was 7 and she asked me to take it back get her a doll instead she didn’t want a bike. That was my Ne-Ne.

I finally packed up her room. Given away things still with tags and toys never opened. Other things keeping that just remind me of her such as her t-shirt that says Homework just say No! When I say that shirt it was so Ne-Ne.

I ache as I look at other families who are fighting this dreadful disease. As I tell those never give up hope a miracle is always possible. Heck if Jesus decided too he could bring Ne-Ne back and take her out of the grave she is in. Realistically do I think that’s going to happen No but I know with my God all things are possible.

I remember Pastor August spoke many years ago about how it wasn’t that the dead couldn’t be risen it was our lack of faith that prevented so much. Its hard for me to think that my lack of faith may have been the reason Ne-Ne wasn’t healed. What is most comforting to me though is the realization that this was not God’s plan or his will. The bible tells us it is not his will that any of us should perish. He wants us to live a long life.

Ne-Ne is not dead she is alive and in heaven. I miss her in this earthly form. I miss hearing her precious voice, pinching her cheeks and teasing her about getting boobs soon. Today we went to museum and as usual Ne-Ne was missing. Sadly I have to get used to her missing. Last time we went to the museum together was in New Orleans and Ne-Ne was tired and wanted me to carry her but I was carrying Doozie who was around 2 then. It was the Faberge egg display and we had a nice time looking at the intricate designs.

Sometimes I think I am a bad mom that I didn’t do enough or spend enough time then I remember those little trips and things we did together. Going to Lynn Meadows or family movie night. All things we used to do not every day but we had a good time. Baking Christmas cookies, drinking hot cocoa and let’s not forget all the spicy foods Ne-Ne loved. Hot chips, hot fries, hot sauce, hot wings, noodles w/ hot sauce, Spicy pork rinds and the list goes on.

She enjoyed life and experienced more than many people in life, sickness and death in her 10 brief years. It’s not fair. God it’s so not fair. The ache is so big and so wide. It will never ever go away. I don’t think counseling is the solution. Group therapy has helped me realize that everything I am going thru is normal. Other parents are feeling the same as me that have went thru the same. The illusion of control is the other thing I lost when I lost Ne. No matter how hard I try, or work you cant protect them from everything.

Unfortuantly for Taga and Doozie I still have a hard time applying this. Taga cant go to the teen club and I worry about her MySpace, boys, her friends and associates, college, sex, her future. She just wants to have fun. Even when I was her age I worried about the future. Taga only worries about today. I am like take AP classes for college credit. She just wants to get thru school. The most she thinks long term is to talk about living in Japan for a month having fun and taking in culture and getting a penthouse in NYC. I do have to credit her though she wants to do counseling of some sort to help others so I am happy she has a goal. She even told me she was proud of me for buying a house all by myself as a single mom. I love that girl!!! She drives me crazy at times but then she is so sweet. If I’m crying they hug me. Taga cleans or cooks.

Doozie is a doozie and right now I don’t worry too much about her except for her need to antagonize her sister. She is clingy some is just how her sisters were but the rest is anxiety due to all the loss and changes the past 4 years. First a hurricane then Ne-Ne. Lots of upheaval in her young life. She lost one of the closet people to her at a very young age. She still sleeps with me. If she is away for more than a night she cries for me. She is a clown and loves to make us laugh. From silly faces, dances or jokes. She will do stuff just to get our attention. The other day we were out walking and Doozie runs ahead and keeps making all these little funny moves to make sure we were paying attention to her and not just talking.

Well time for me to go to bed I have work and the next few days may be rough since its Ne-Ne’s birthday and I am nervous about getting to closing on the house. All my part is done now I just have to wait for the rest of the ducks to line up. Hopefully my two man moving crew doesn’t back out. They have moved me more times than a little bit so hopefully they won’t forget me. Any volunteers out there???

Ne-Ne’s 12th Birthday in heaven

I can hardly believe it has been over a year since my baby left. I remember when she was five years old and said to me Mommy when is Jesus going to come back and make my fibromas go away? I can almost hear her little voice in my mind. A few months ago I was brave enough to play a tape she made for a book she wrote me in 4th grade. It was so sweet hearing her voice again. Not much has changed in the world overall. It didn’t stop spinning because my heart broke. Life has gone on as it has for thousands of years. Sadly I have met many parents whose children have left their lives behind here on earth due to brain tumors.

When I visit the various pages online, see the pictures and read their stories I find that we all share so much in common. The type of brain tumor may have been different but our children progressed thru the disease almost the same except for the pace.

Headaches (early warning signs often unrecognized)
Sleepiness
Loss of mobility
Speech difficulties
CT Scans
IV’s
MRI’s
Biopsy
Steroids
Temodar (chemo)
Atavan (to control seizures/anxiety)
Radiation
Hair falling out
Loss of Speech
Increased hunger (due to meds)
Port/Central Line
Tumor still growing
CCNU (chemo)
Unconscious
Feeding tubes
Death rattle
Death

Funny or ironic that there are so little drugs to save our children. The standard fare is used and they continue to die. Not much money spent on kids cancer research let alone brain tumors which while one of the deadliest second only to leukemia is underfunded as are all childhood cancers.

Next week is Ne-Ne’s twelfth birthday. She will be celebrating it in heaven. It was especially hard this year anticipating Doozie’s. For Doozies birthday we had a mini-BBQ at my mom’s. This was bittersweet since this was the last place Ne-Ne and Doozie celebrated their birthdays together. Just 15 days before my world fell apart on August 19, 2007. I had kind of known something was wrong with Ne-Ne deep inside. I wondered about her sleeping so much but I figured it was just a growing stage. Even the day we drove to my mom’s that she was diagnosed I worried thinking it was a fibroma or a stroke since she had trouble with one side. Little did I know.

I remember one day Taga dragging Ne-Ne into my room because she was saying a word funny. Taga got mad and scared thinking Ne-Ne did it on purpose and Ne didn’t help because she laughed when she said the word again on Taga’s command in front of me but this time with no problem. I can still hear her going Whaaat? And grinning. The speech was another early sign I didn’t see. I don’t blame myself because I know no matter how early or late we got treatment with this ugly beast living inside of her the result would be the same.

Things emotionally have changed little. The pain, guilt, sadness, loss, and broken heart are still there. Difficulty enjoying things still there. I miss her so much. My friend was over recently and said watching Taga and Doozie play she realized how I must feel. Something was missing she said she thought and then she realized that something was Ne-Ne. It had always been my three girls Taga, Ne-Ne and Doozie or Doozie, Ne-Ne and Taga. If I called one I usually called all three.

I am about to become a homeowner actually we are. One of my few remaining dreams that can still come true. It’s hard to realize that your dreams of growing old have changed. The grandkids Ne-Ne always wanted won’t ever be there. She had plans when she was Doozie’s age to have 5 kids and 2 babies. Her dad was going to be her husband she said. She even had names after Taga, Manny-Man and Shaheim. They were Shartaga, Taga, Manny-Man, Shaheim, Nikirah. The babies were going to be Ne-Ne and Wetsey Betsey if I remember right! She loved Wetsey Betsey. My mom bought her that doll and we still have it. It came with Ne-Ne whenever she went somewhere including evacuating for Hurricane Katrina and to the hospital for treatment. Her plans for having kids hadn’t changed much nor her plan to be a teacher so she could eat candy in class. Mrs. Yeager her kindergarten teacher inspired her to be a teacher.

She wanted to help other kids go to NF camp and I plan to continue on with this dream of hers. I am about to seek out help to start a small non-profit and do fundraisers to sponsor kids to go to Camp New Friends. They are at a new location this year that I know Ne-Ne would have loved. It is bittersweet to see the camp getting bigger because I know how much Ne-Ne would have loved it. She enjoyed that camp! After her first time going just for one week she came back changed. Julz said it doesn’t matter how you look Ne-Ne said. She didn’t care about wearing tank tops anymore or kids teasing her. She was happy in the skin she was in. Being with other kids who had fibromas like her helped. They went thru the same adversities. I want every child with NF1 to have an opportunity like Ne-Ne had so that they learn to accept themselves just as they are. That camp gave my baby back her self confidence. She wanted to help poor kids go to her camp never realizing she was one of the poor kids. She wanted to help kids whose parents were mean to them because she had a friend whose mom did mean things to her so she lived with her grandmom. That was my Ne-Ne always wanted to help others. When she was younger and someone was asking for money outside of a store she wanted to give them money. She wanted to know where the homeless slept and could we help feed them.

I remind myself that my Ne-Ne is now in heaven helping others and in the Lord’s presence worshipping him like she loved to do. She is now learning about God sitting at his feet and absorbing all the lessons He has to share. No more pain, her hair is back, her speech is perfect in that sing song voice of hers she can now speak again.

God’s will was not for her to die. She died because of sin. Now she lives in perfection with the best Father and teacher there ever was Jesus. She is healed which is something I nor any man could do for her.
In November I will walk again in the Race for Hope Philadelphia, in memory of my baby. In hope and prayer that God will grant some researcher, scientist or doctor the knowledge and wisdom to find a medicine that will increase the survival of children with brain tumors. It may not help Ne-Ne but there is someone else’s child being diagnosed today after months of small signs that his/her parents wondered about but thought they were being over protective only to find out that no matter how early they found it there is little hope, few medicines and no chance for cure.

Continue to pray for me and my girls and I will continue to pray for you and your family.

Why?

I have been asking myself that question for a long time. Why? I was able to accept all the other bad things in the world but Ne-Ne’s illness and death I have not been able to accept. I have asked myself why.

Today I had it out with Nick. Not really out but I just let him know all the stuff that has been bottled up in me. Stuff I don’t say to the counselors or anyone else. Stuff I barely admit to myself. Such as my anger at God, the world and life in general. Like how my heart is broken. So Nick read me the riot act but it was God using him.

Well in addition to Nick, my dear friend and pray warrior Pam lit into me as well. She talked to me, prayed with me, for me, cried and held me. Well something must of broke lose.

I am still hurting but I am up a little. Not on my knees yet but not on the ground anymore. As the bible says “For a righteous man falls seven times, and rises again, But the wicked stumble in time of calamity.” I was acting as wicked man and wouldn’t get up. So now I am talking to God again and asking him to help me up the rest of the way.

Well low and behold he sends me a message thru Rick and Bubba. Yes I said Rick and Bubba. Its a radio show and Rick lost his own son to drowning. Rick has a message about why. What’s funny is his message coincided with Nick’s message to me today about not giving up. Rick explained that we are all responsible for his son’s death. How you may say. He went on further to explain that as sinners the wage is death. I am by no means explaining this as well as he did so I suggest you listen to his sermon by clicking on the link.

Well anyway back to his sermon he said how his son had to die for someone to live. Some got saved as a result of his death.

He went on to eloquently explain how his life changed after his son Bronner’s death. That he is living with a weight around him. His family now lives ready to go home as we all should be. We should be living that when we go do home whether today or tomorrow that we get the well done. As at many funerals we all say this and plan to do this but we don’t. I am going to challenge you as I am challenged to live so you can hear well done my good and faithful servant.

Nikirah’s life and death is preparing us and molding us into who God wants us to be. Thank you Lord. I did not pass the quiz but I am up and ready to pass the test. I want to see my baby again. I want to see others that have passed on before me as well. Will I see you their on the other side?a>

6In this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. 7These have come so that your faith—of greater worth than gold, which perishes even though refined by fire—may be proved genuine and may result in praise, glory and honor when Jesus Christ is revealed. 1 Peter 1:6-7 (NIV)

 33“I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.” John 16:33 (NIV)

On time all the time

I have been kind of depressed and snappy lately. Last weekend a friend helped me snap out of it a little. Pointing out all my blessings, how I help others, how I am a good mom, etc. I was feeling a bit more optimistic and kept trying to see the positive.

 

Well this morning I woke up sick, after fighting a cold this week. I had resolved not to go to the store and spend my car repair money and I got such a wonderful uplifting surprise from Fred’s Footsteps. My attitude after talking with Sumer while improved was still not full of hope but just acceptance that things may never go my way.

 

I have seen God at work in my life this week with my attitude. Their wonderful package has helped remind me of hope. That I can reach some of my goals. That even though I work hard and setbacks keep happening its okay something will happen to help the situation. Thank you so much to all those that give others hope. Sometimes you feel so alone and overwhelmed and and then their your are letting others knows know that we not alone and there are people out there who care.

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.