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



Filed under Uncategorized

Nikirah’s Ohana & CHOP’s Daisy Days

I have created a team to support CHOP’s daisy days. Its going to be our first fundraiser as Nikirah’s Ohana.DaisyDays

Leave a comment

Filed under Uncategorized

Changes Coming

Since Ne-Ne was diagnosed with NF1 as a baby I have wanted to do something to make a difference. In fact it was since I was a kid, then when Ne-Ne was diagnosed with cancer I really wanted to do something.

Her illness while so brief was overwhelming. I lacked the confidence all my life to do something and now while I’m not sure if I will be successful I can’t give up on the ideas that God has laid on my heart nor can I give up on Ne-Ne’s goal of helping others.

I will be starting a foundation eventually called Nikirah’s Ohana. Named after her favorite saying which was from the movie Lilo & Stich “Ohana means family, and family means no one gets left behind or forgotten.”

Leave a comment

Filed under Uncategorized

5+ years

Its been quite some time since I have posted here. It has been even longer since I saw my baby girl in person, held her hand or heard her voice. She is always in my heart and never far from my thoughts. So much has changed since I last posted. I have a new baby well not so new he is almost 3. I am a home owner, a college graduate, a graduate student and yet most importantly I am shaped most by Nikirah’s absence in my life. I am a bereaved parent, a mother missing a piece of her heart, so damaged, so sad yet its hidden by the trials of everyday life, the need to be and do better for my other children as well as to honor Ne-Ne and learn the biggest lesson that her death taught me although I knew it tomorrow is not promised to any of us. Not to an infant, a baby in the womb, a ninety year old man or even a 10 year old little girl who dreamed of being a teacher and a mother from the time she was a toddler.

Ne-Ne used to say she was going to have five kids and two babies. During her treatment I remember worrying that her treatment may not allow her to have her dream. I don’t think it ever really crossed my mind that today or rather that day in 2007 that cancer wasn’t curable. I know people that survived cancer, plus death of a kid only happened to other people usually those featured in a Lifetime movie special. I still wonder at times is this just a bad dream that I will wake up from. Will I walk down the hall in our new old home and she will be there one morning? Its a hope, a prayer, a wish I only share with myself.

I am still sad, angry and hurt. I am even angrier and more hurt when I see people her age wasting their lives, with no goals, no plans, making bad choices, being selfish, etc. I think why my baby, she had goals and dreams, she was a good girl. She wanted to feed the hungry, help the poor kids, be a teacher and a mother. I then have conversations with God and I hope one day He will forgive me for my bitterness, my questioning and my anger.

During this time I have found comfort in the presence of strangers. Me and my kids have went to Camp Sunshine in Maine for Bereavement family camp. Our first time was when Eli was just weeks old and we have been back at least two other times since then. It has been a blessing. To be with others who understand, have walked in my steps or are walking where I once was. Its Disney for bereaved families, no rides but joy, tears, memories and hugs.

Well I end this post kind of open ended. I just felt like posting and actually remembered my password lol. I am forming a team this year in memory of Ne-Ne called Ne-credibles and will be decorating the house with yellow ribbons and maybe a sign to raise awareness of pediatric cancer. We didn’t do anything for her sweet 16 this year although last year we dropped off a basket for a 10 year old to the hospital. Imagine Ne-Ne at 16 I cant but I have ideas, she would be begging Taga for rides and trying to hang with her big sister. Doozie would be stealing Ne-Ne’s clothes like she does Taga’s and Ne-Ne would be stealing Taga’s. She would be spoiling Eli and a regular at Buffalo Wild Wings most of all she would be happy, full of a promising future teaching kids and probably volunteering at Camp New Friends for kids with NF. So today as I do everyday I take solace that she is happy in heaven with Jesus the best parent ever.


1 Comment

Filed under Uncategorized

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.

Leave a comment

Filed under Uncategorized

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”

1 Comment

Filed under Uncategorized

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%.

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.

Leave a comment

Filed under Uncategorized

The future???

Ne-Ne's gravestoneDoes 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???

1 Comment

Filed under Uncategorized