Archive | March, 2012

Sick …. in poetry form

29 Mar

Guest post from Elizabeth Weiss McGolerick, meningitis survivor, who used her writing skills as an MFA to express her feelings as she fought meningitis

Sick

 

1/

Under her hair, there’s a permanent shadow

of God’s finger on her spine.

 

2/

Hey, Haddy Handrigan,

welcome to this amusement park called my brain.

A lady in a chair is sinking into her stomach

until all that’s left is her coat and some curls

ripped out on the way down.

 

I have a headache just thinking about it.

 

Haddy Handrigan, I can’t turn my body.

Talk to me.

 

3/

The eye in the jukebox sees every choice.

It’s not her reflection. There really is a giant eye

made of marshmallows and rain,

living in a marvelous sphere of absurdity.

 

Peering out into night and skyscrapers,

two iridescent dandelion puffs float by.

The clouds are suddenly pink,

the vase is empty, there is something in her eye,

and the moon is melting again, upwards.

 

4/

Oh, Haddy Handrigan, I had to turn out my own light at night.

I had to sit alone when the hours were over and listen to your song.

I couldn’t lock the door.

I couldn’t say stop to

 

 

5 a.m.         she wakes me up             graham crackers             orange juice

another pill that won’t make it go away                  a needle in the bag

“… my head hurts …”

cheap perfume          pat on the arm          “… take your blood!”

 

5 a.m.         graham crackers                 orange juice

a needle in the bag         three in the little cup

“… my head hurts …”

cheap perfume              tsk of the tongue               “… take your blood!”

 

5 a.m.         crackers                 juice

breathing                      making sure of breathing

“… my head hurts …”

can’t roll on that arm         breath           “… there you go, honey …”

 

5 a.m.         crackers                 juice

my head                        hurts

 

 

I wanted to say goodnight and mean it until 8 a.m.

I was in another land, Haddy Handrigan.

No blue reflections. I even forgot

all the blue I used to know.

I wondered if I’d get anywhere,

to a sitting position for more than thirty minutes.

 

I was walking the tightrope

that tied their mouth masks around their heads.

Just talk to me, please, Haddy Handrigan.

I’m tired of hearing your song.

 

5/

There is fluid in her head, but not so fluid it lets her move.

They tapped her, but didn’t let her see.

She’s wearing glasses, but is almost blind,

constant tremors waving over her eyes.

 

6/

I decided to breathe in private

and bend my elbow with nothing inside.

The neon springs in the ceiling

sucked up the smell.

 

I felt them rip out some pages.

I pretended I didn’t care

if the whole spine disintegrated.

 

Come here, Haddy Handrigan.

Tell me what I’ve missed.

 

7/

Her hands grow older.

She can see a hundred miles in front of her

but won’t see the hallway until the sixth day.

They won’t let her leave until she walks.

 

 

It’s Not “Just the Flu” When It Happens to You

26 Mar

Guest post by Laura Scott, Executive Director, Families Fighting Flu

 

Winter is now over and only a handful of people I know got sick with influenza. Besides, it’s just the flu…right?” As Executive Director of the national nonprofit Families Fighting Flu, I hear that a lot. A mild flu season or one that peaks late can give us a false sense of security that it is “just the flu.” But, as I know all too well, the flu doesn’t care about the mildness of the weather, the month of the year or the age of the infected. When it strikes, it can be deadly.

We’ve been fortunate this flu season in that, unlike past years, there have been fewer childhood deaths due to the disease. But even one death is still one death too many, and I worry that this mild flu season will give a false sense of security to those most at risk, including children. With two new flu strains anticipated to be circulating next season, it’s critical that we continue to promote the importance of vaccination for everyone six months of age and older.

This year, for example, we created a new national public service announcement that featured a member’s survival story as a cautionary tale. For those communities affected by a flu-related death, we also created a resource toolkit that provides useful information on how to cope with a loss and how best to prevent another tragedy from occurring.

Given these tools, I’m thrilled that mid-season data suggest that the rate of childhood influenza vaccination has increased since last year. Still, it breaks my heart to see news headlines from across the country detail the loss of a promising athlete, an aspiring artist, a friend, a son or a daughter due to flu. That’s why raising awareness is so important—it’s our best defense against the false sense of security that can come with a mild flu season. After all, it’s not “just the flu” when it happens to you, or to someone that you love.

A Dad’s Grief …

23 Mar

Usually I hear from moms whose children have been affected by bacterial meningitis.  This week I heard from a dad.  Dads grieve just as much as moms, but their voices aren’t always heard.  I heard this dad’s voice breaking, as he talked about losing his 16 year old son this past summer.  He is lost in his despair, and as a single dad, now focusing on the health and mental well-being of his 14 year old daughter.  Since his son was 1 ½ years old, the two were on the hockey rink.  Many years of memories and good times that were wiped away in less than 24 hours by this relentless disease.   There is not any family member that is not affected by losing a child.  Parents, brothers and sisters, friends, other family members. Everyone is in shock at the quick way this disease has taken their loved one.  I carry these stories in my heart, wishing I had the words to make these people feel better.  But, I know from my own experience, there are no words.  It does help to talk to other people, who understand what has happened, because we have lived through it, but we can’t make the loss go away.  It doesn’t take away the grief to talk, but it gives you a chance to talk about the life that you loved more than you can ever have imagined.

Phoenix Rising – An Ounce of Prevention is Worth a Pound of Cure

14 Mar

Guest post by Clare

It has taken me several weeks to pull myself together, to sit down and take a breath. I don’t imagine this will ever get easier or hurt any less. But I have to tell this story and hope that because of it, one less child will die from meningitis, meningococcemia, or any meningococcal disease.

I have always thought this saying to be true, “An ounce of prevention is worth a pound of cure.” Therefore, on the one-month anniversary of Phoenix’s death, the time has come to tell his story.

Phoenix is my beautiful, intelligent and amazing son. I want every parent to know that he was a precious child who was loved, cherished and cared for by his parents and his twin brother. In just a few days, I went from being a happy mother of two playful little boys to a grief-stricken mother trying to find meaning in such a tragic death. On the morning of February 9, 2012, Phoenix woke with a mild fever. He played with his brother, ate his breakfast, and then played some more. After eating lunch he laid down for his nap and around 2:00 P.M. woke up with vomiting and with diarrhea. Being the mother of twins, I am used to having both boys sick at the same time, so I thought it was a bit odd that Gryphon showed no signs of being sick at all. After getting Phoenix all cleaned up and settled down, I decided to check his temperature again. When I saw that it was now 104 degrees, I strapped him in the car and headed to the emergency room. As we arrived at the ER, I noticed a small spot on his arm. I couldn’t linger on this thought because things started moving pretty fast with the doctors and nurses checking his vital signs and asking me a lot of questions. I couldn’t keep my eyes off of Phoenix. I started to realize he was now acting very strange; it was like he was hallucinating. He seemed at peace and started to sing to me.

Nobody, not even the doctor, recognized his symptoms. The hospital staff had decided to just keep an eye on him and monitor his temperature.Phoenix asked me to take him to the bathroom, and while he was sitting on the toilet, he kept losing his balance and falling off. Immediately I knew something was wrong, so I started screaming for help. Several nurses came into the room, and at this time, the doctor decided to do a spinal tap. Even though it is such a painful procedure, my precious Phoenix didn’t move at all.

The doctor and staff called for the helicopter to transport him to Oakland Children’s Hospital. In the meantime, the results came back positive for meningitis. When my husband came into the room, Phoenix’s face lit up and he asked his baba for milk and cookies. He appeared to be responsive and cheerful and started to sing E-I-E-I-O. The anesthesiologist suggested we put him under to help eliminate any pain that he may be feeling. That was the last time we heard his sweet voice.

When the helicopter arrived, I demanded to be transported with him. As we were walking out to get in, the hospital chaplain walked with me. We stopped to pray for a miracle. It was at that moment I knew my baby was dying.

After a 50 minute helicopter ride, we arrived at the hospital.  While they were getting him out, I could see that his tiny body was covered in purple splotches called petechiae; his legs, his arms, and his torso .Phoenix was raced to the ICU. Coming into the room, I could see at least four doctors and ten nurses scrubbed in and ready to go. I was asked by the head nurse to stay in the waiting room and was told they would brief me on his condition. Those were the longest two hours of my life. When she came back and told me Phoenix was the sickest boy in that hospital, I felt sick to my stomach. My husband had not yet made it to the hospital, so I stood there alone and in shock, trying to make sense of all that I was being told. As soon as my husband arrived with Phoenix’s twin brother, Gryphon, we were taken straight into the ER to make sure that Gryphon didn’t have the same thing as Phoenix. The decision was made to keep Gryphon under observation for the night until we could get a better grasp on what was happening with our baby son. The nurses came in periodically and updated us on Phoenix’s condition. I couldn’t bear being separated from either one of my boys.

I was so worn down that I couldn’t possibly process all the information that was being given to me.  At times, I didn’t understand it, or maybe I simply didn’t want to believe it. I cuddled up to Gryphon and tried to fall asleep with him. Around 2:00 A.M. Gryphon started laughing in his sleep, sat up, hugged the air, and said, “I love you.” Little did I know that, at around the same time, Phoenix’s heart had stopped for 15 minutes. I didn’t know it then, but I know now that Phoenix had come to say goodbye to Gryphon. For the next three days, machines kep tPhoenix’s little body alive. Then, we received the most devastating news we hoped never to hear: “Your son, at this moment, is the sickest boy in the whole world.” Phoenix was hooked up to countless IVs, lines, and machines, at least 15, going into his little body at one time. They also had him on an ECMO machine that was inserted into his arteries to help oxygenate the blood.  He was so unstable to move that they could not do a CT scan on his brain because his heart had stopped, and his temperature had reached 106 degrees. They held off until Sunday evening to do the CT scans. From Friday to Sunday evening, we heard from the doctors, “Your son possibly has severe brain damage due to his high fevers, he has pneumonia, looks like we will have to amputate some toes and fingers, looks like we will have to amputate all four limbs.”  It was shocking and horrible; it was hell. On Sunday evening, they were finally able to move him and did a CT scan. The scan confirmed there was no brain activity. Monday came, and the neurologist confirmed that he was, in fact, brain dead. Throughout this extremely long weekend, the chaplain of the hospital stayed close with us. Sister Breanice was an absolute saint, and through her words and kindness helped Bart and I become at peace with where Phoenix was about to go. She was right there as we watched the surgeon take the ECMO out of his body, and she was right there as Bart and I held his little hands and watched his strong heart slowly die. Our baby was pronounced dead around 1:00 P.M. on Monday, February 13.

Please pardon my anger and sadness when I express how devastating it was to read the article regarding Phoenix in the local newspapers, a simply put story regarding a nameless three year old who had contracted the meningococcal disease. There was no follow up to his condition, no call to action for parents to talk to their healthcare professionals, not even a note on what symptoms parents should look for in their own children. No one knows where Phoenix contracted this disease. What I know, after doing my own research, is that this disease is only carried by humans and is passed along in close contact situations: crowded areas, high schools, dormitories and even preschools! I also know that this disease has a high fatality rate in children and adolescents, and many who are lucky enough to survive usually don’t escape its devastation without the loss of a limb, some form of brain damage, hearing loss, or kidney failure . As a mother, I don’t understand how something like this can happen. That “something” being that any child in theUnited  States could die from a disease that currently can be prevented by a vaccine. That is right: there are vaccines that help prevent the spread of disease and pointless deaths.

I am sure many of you have heard of polio, measles, mumps, and rubella, and how our society has done its best to eradicate these dangerous diseases. Every child that is born is required to get vaccinated at some point, and I am a parent who says, “That is great!” Why should our children die from a disease that can be prevented? How often do we hear of an outbreak of polio? Not often, or really ever. Thanks to vaccines.

I understand that there are many families who choose not to vaccinate. I respect your right to choose. However, I do vaccinate my children and expect to be given all of the necessary information to make an informed decision. Herein lies the problem: I was never made aware of the vaccinations available for meningitis. It is hard to believe that we currently have vaccines which protect against types A,C,Y and W135. One of the vaccines is approved for use in children as young as nine months of age. There are five different strains of bacteria that can cause meningococcal disease, and we can currently vaccinate against four of the five. The vaccine is offered to teenagers, college students, military personnel and other selected groups. Although this disease is known to have a high mortality rate in young children, for some reason, this is the age group not offered the vaccine.

I am lost. No, I am more than lost. I am angry and saddened that this disease can take the life a child, and no one seems to care. Why aren’t the younger children protected with a vaccine recommendation? Without any kind of public outcry, pleas of parents who have lost their most valuable treasures are going unheard. Our government needs to help protect our children and change the way our medical system works. Something has to be done but won’t be until we raise our voices loud enough to be heard. I didn’t want to be an advocate. I would much rather be holding my precious son in my arms, watching him play with his brother, tucking him in at night. I have to say that without the love and support from our friends and family, I am not sure my husband and I would have gotten through this. So, I must ask you, from one parent to another: wasn’tPhoenix’s life worth that ounce of prevention?

The loss of my brother and the impact it has had on my life

12 Mar

Guest post by Kayla Thomas

 

Losing your sibling is an experience that impacts your life forever. I know this because I live with it every day. On May 20,1997, my little brother Justin died from Bacterial Meningitis. I was 4, and he was 2. We were on our first family vacation to Atlanta, Georgia, to visit my aunt. I remember my brother getting sick and my parents bringing him to the doctor. When they got back, they told us he had a cold but he would be ok. Then I remember waking up in the night to the paramedics and police officer in my aunt’s house. They took Justin to the hospital and my parents left with him. I was so scared, that I ran and hid in my aunt’s room.

In the morning my aunt took me to the hospital. I was admitted and checked for Meningitis. All I wanted to do was see my brother, but I couldn’t because he was very sick. I never did get the chance to see him before he died, and I never got to say good bye. I was very sad and confused. I didn’t understand what was happening to my family. I became an only child. Where was my brother? I was too young to truly understand the reality of it all.

As time went by and I got older, I started to ask a lot of questions about Justin’s death. My parents were great. They explained it all to me. They told me he had gotten Bacterial Meningitis, but the doctor at the clinic didn’t know this the night before he was taken to the hospital. My parents found this out when they got to the hospital. They explained how contagious this was and that that was why I was admitted and treated, and why they were brought next door to an adult hospital to be tested and treated. They explained that the reason why they didn’t let me say good bye to him was because he was bleeding internally, and it would have been too hard for me to see him. They didn’t want me to have to live with that image. They told me he was 36 pounds at the clinic the night before he died, but when he died he weighed 101 pounds. This was from all the blood and fluids they gave him, to try and save his life. My parents went from being told Justin had an ear infection to him dying less than 12 hours later.

Justin’s death is something I will always remember. It has impacted my life greatly. It has made me realize that unexpected things can happen in life. You just have to accept life as it is, and have hope and believe in yourself. Every day is hard on my family and me. We miss him dearly. He will always live on in our hearts. I think his death has made our family ties very strong. My parents believe in me so much. I know I wouldn’t have made it through all this, and have become the person I am today without them. They are very strong people. They have taught me that you can overcome tragedy. I saw this first hand when we built a playground in Rutland, Vermont,  in Justin’s memory. It is called the Justin Thomas Memorial Park. I love to watch the little kids play there, and to think about the good times I had with Justin. He will always be a big part of my life. I think that his death is the reason why I want to become a pediatric nurse. I want to be able to help kids that are sick. I want them to feel like there is hope. I want to make them smile and laugh, even if it is only for a short time. It would mean the world to me and is why I am so motivated to do what it takes to reach my goal.

I Am Not Going to Work Today …

6 Mar

I’m not going to work today.  I don’t work on March 6th.  This is the thirteenth year that I have taken off from work on this day.  This day is the anniversary of my son’s death.

by Tama Lee, retired NMA Director

 

Twelve years ago on a Saturday night I was lying next to Casey on his bed rubbing his head because he had a bad headache.  He said “Mom, if I feel this bad on Monday, will you stay home with me?”  I told him “Of course.”  But Monday his father and I were walking around a cemetery picking out the plot where he would be buried.  He died from a disease we knew nothing about, meningococcal meningitis, and we didn’t know he could have been protected from this disease by a vaccine.

 

I’m not going to work today.  I will be at the cemetery visiting Casey’s grave.

A Brother’s Loss, a New Father’s Perspective

6 Mar

by Pete Lee

Exactly 12 years ago on March 6th, 2000, my brother, Casey Lee, died from Meningococcal Meningitis.  It was by far the worst day in my life.  Fast forward 11 years and 2 days later on March 8th, 2011 and you will find the best day of my life, having my first son, Casey Owen Lee.  We were so happy to be blessed with such a healthy baby and were excited to have him carry on my brother’s name and spirit.

 

I’m sharing this story because if I did not go through losing my brother to this deadly disease I might have chosen not to vaccinate my son.  I have lived through the worst case scenario that can result in not getting this vaccination and it is important that I share this with you so that you don’t have to go through the heartache my family went through when we lost a son, a brother, and a best friend.

 

Please protect your family members from this deadly disease by getting vaccinated.  If we would have known about this vaccination , my son would be playing with his Uncle Casey today.