My Story

My seizures began shortly after my first baby. I began having headaches and what I now know as small seizures during moments of aphasia and disgraphia (inability to write, read, and speak). I also felt like I got on the screamer at Disneyland and never got off. Predict-a-text was torture because suddenly I couldn't spell. I cried from the buzz of the baby monitor at night seemed so loud. After an lots of tests an MRI finally confirmed a cavernoma in the left temporal/occipital lobe. I cried for several weeks as I rocked my babies to sleep at night wondering what the future held. As the shock wore off and many of the symptoms have improved, the brain and cavernoma jokes have become a constant theme at our house. One of my favorite quotes is from Marjorie Pay Hinckley: "The only way to get through life is to laugh your way through it. You either have to laught or cry. I prefer to laugh. Crying gives me a headache."
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I haven't driven in nearly six months as I am at risk for bigger seizures as they increase in frequency and intensity. I don't bathe my kids unless my husband is home and we don't get out the kiddy pool. I'll be a bench warmer at Lagoon this year. I depend a lot on friends and family. I am amazed at how many people are willing to go out of their way to come get me, load two car seats and kids and take me swimming, shopping, etc. My husband has never complained once as he now spends a lot of his evenings off running me around to do the errands I can't do myself.
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I have now met with 3 neurologists and 2 neurosurgeons. I searched the Internet for a week as there is little information about cavernomas. When I found Angioma Alliance I knew I had found exactly what I needed. The information and support I have received there has been amazing and life saving! Many people suffer greatly from the devastating affects of cavernomas. I have been very fortunate to only have one cavernoma and minor deficits. I thought to celebrate my upcoming surgery I would try to give back a little to the organization that I could never re-pay.
I am excited for the race and so grateful for your support!
Loads of Love!
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The top 10 benefits to having a cavernoma!

10. I don't have to look like a wimp when I don't want to ride a roller coaster.

9. I just got spend money on new jewelry and order a super cute Medical ID bracelet that looks like I just got back from Tiffany's.

8. I now have a chauffeur to take me places (aka husband, mom, friend, etc.)!

7. Extra dates with my hubby when we stop to grab a bite on our way home from all these dr apt.'s.

6. Thinking twice before judging someone, like the mom who doesn't take her turn driving kids for preschool fieldtrips (or who forgets there was a fieldtrip that day;)).

5. More faith.

4. More sincerity in prayers.

3. More laughing (and crying).

2. More time playing, less time cleaning.

And the number one reason I'm glad I have a cavernoma...

1. It gave me a new perspective on life and what is really important

Sarita
It was November 28, 2007. It was business as usual. We had just got back from a long Thanksgiving break in Ohio and this was just another regular day – and I would have been getting off to work in a few minutes. Yes, it started as a regular day but turned out to be anything but.

I was in the shower and I sneezed. Normal? Yes! Or so I thought. Immediately I felt the left side of my body go numb. My right side felt okay but I could not walk so I yelled out to my husband! The fan in the bathroom was on so he could not hear! So I held on to the wall and gathered as much strength as I could muster to flip the fan switch off. And I yelled again. This time my husband heard me. He thought he had heard the cat meow and came over to investigate and found me. I could not walk or see very well so he picked me up and laid me on the bed and then called 911. As I lay there I told him to get me dressed-I was going leave the house fully dressed-even if it was on a stretcher! They got there in three minutes and rushed me off to Presbyterian hospital. In the ambulance they asked me if I knew where we were headed and I said yes. I was aware of my surroundings all the time. I could hear them talk. I apologized that I had not had time to comb my hair and he laughed and said that it was okay! My husband followed in the car.

I was there at the hospital in ICU in five minutes and they got me settled in. The TV was on in the emergency room. Why on earth is there a TV in the emergency room? Mitt Romney was speaking, I recognized his voice and said so to the doctors. They laughed almost with relief. They asked me to do certain things-some of which I could –some not. I could barely see but saw an outline of three doctors standing at the foot of my bed. My husband too. I remembered telling them who my doctors were. I could hear them say it was an intracranial hemorrhage. They were discussing possible causes. I asked for the phone –I tried to call work to tell them that I was not going to come in.- Left a message for my boss and also called a friend and told her to let him know. That was the beginning... of a long journey and one that I am still on.

Long story short, I spent 3 days in ICU and a total of 23 days in hospital. Five days in neuro and then the rest in rehab. They knew I had a bleed but they did not know what exactly had caused the bleed. The CT scan showed blood in the brain but that had to clear before I got a firm diagnosis. The immediate plan was to focus on recovering. And that I did. It was a slow and harrowing process. I could not swallow or chew on the left side so I was on pureed foods at first. Could not walk. My left side of the body was weak. I had facial paralysis. My speech was slurred but that did not seem to stop me! I underwent physical, speech and occupational therapy. Had to learn a lot. Those 23 days were long and hard. I went through the whole cycle of grieving. I was depressed about my situation and then finally accepting of what I could not change. I knew one thing – I was going to fight as hard as I can!

I finally went home on Dec 19th just in time for X’mas. I spent the next few weeks recovering and then went back to the neurosurgeon and for an MRI in early Jan. The blood had now cleared from the brain. He looked at the MRI and told me that it was either an AVM or a cavernoma that had bled and told me was referring me to Dr Duke Samson at UT. Southwestern. He said Dr. Samson was the best and would take care of me.

I met Dr Samson in February 2008 and he had me do more MRI’s. The results were in. I had a bleed from a cavernous angioma also known as a cavernoma or as I now affectionately call it a “cavvie”! The cavernoma was located on the pons - on my brainstem. I was apparently born with it. It was an abnormal cluster of capillaries in the shape of a raspberry. The good news was that even though it was on costly real estate in the brain- Dr. Samson said he could get to it and take it out. The alternative to taking it out was living with it but I could have even more devastating bleeds-ones that could cause permanent damage. So for me it was not an alternative. I had to have it out! I was going to have brain surgery to get the wretched thing out. The craniotomy was scheduled for April 18, 2008. I had to be careful until then. No heavy lifting, no strain, no bending and certainly no sneezing. I could not do anything that would cause another bleed.

I had brain surgery in April 2008. Thanks to Dr Samson it went off like a dream! I felt no pain - the pain meds worked. Spent 6 days in hospital and then many weeks in therapy learning how to walk again and regain my balance etc. I went back to work on July 18, 2008. The only apparent residual problem was that my left eye had gone in toward the nose after the bleed and I had double vision as a result! I was going to have to have eye muscle surgery to fix it. I now felt equipped to handle a couple of eye muscle surgeries. But it was not a couple. I’ve had seven eye muscle surgeries and still have one more to go in April 2010. Tremendous difference. I gained so much from each. I wear corrective prisms and have a range of single vision. They are now working to improve that range. If you look at me now you can barely tell. I still struggle with some balance issues because of the position of my eye and the movement of the eye. I have a muscle or two that don’t work as well as they should, some weakness on my left side, which I feel when I climb stairs. Hopefully the balance issues will sort out after the next eye surgery. I know it will. I have faith in myself - my ability to fight, faith in my doctors, in the powers that be.

Yes this was a journey. Recovery from this devastating illness can take years and trust me I know. It is now a little over two years and I am still recovering

This is a long hard journey. But there are a lot of people that travel this difficult road with me and make this recovery possible. First - my husband Johannes who took my hand and walked me through the roughest spots on this road. Then there was Dr. Samson who was absolutely wonderful. There were the multitudes of doctors, nurses, and therapists in Presbyterian and at UT Southwestern who made this easier for me. Some are now my friends. My family and friends from close and far talked with me everyday. My bosses, colleagues and friends at work played an integral part in my recovery. The company –PPAI- held my job for me for 8 months and I am so certain that knowing that I could go back to work gave me that extra impetus and drive to get better as soon as I could. I wish everybody had access to healthcare like I did!

As strange as this sounds, I came away from this experience a stronger and a better person. I now have a different perspective of life and of humanity. I hope this stays with me forever. I have a renewed faith in mankind, in science and in life itself!

Les
You might be considered lucky to survive a catastrophic illness once. I've done it six times! And now I'm helping others by proving that faith, strength, perseverance, and a strong will, can bring miracles.By all appearances Sharon and I are the typical husband and wife. We met the summer after Sharon graduated high school and was working in her father's pharmacy. We got married in 1969 when I was 21 and Sharon was 19. In 2009 we celebrated our 40th wedding anniversary. In that time, our marriage has been tried and tested more than either of us could've imagined.In 1990 while our family was living abroad, something happened to me that would change our lives forever. I woke up in the middle of the night and I was extremely nauseous and had a terrible pounding headache. The room was spinning, and I had severe vertigo. I literally had to crawl from the bed to the bathroom because I wasn't able to walk.I had no idea what was wrong, and even after several doctors visited me at home my symptoms persisted. The pain continued for a long time, and all the disability continued for a long time as well.I remember that I could find little comfort for the pain in my head. But I discovered that when I laid on my right side the pain would diminish. I literally laid on the right side of my head for days on end, kind of recognizing and listening to my body, realizing that made me feel better.After 18 months, and having mostly recovered from the strange illness, similar symptoms began hitting me again. This time, though, I learned the truth about what was happening to me.The same day as the MRI, I got this panicked call from the hospital saying 'Get back right now!'. Doctors discovered I had suffered a major hemorrhage on the right side of my brain more than a year before, and that it was happening again.The MRI results were frightening. I looked at the films and there was literally splattered blood all over the right side of my brain.When I asked doctors about the relief I had felt when I laid on my right side they told me that by listening to my body, I most likely saved my own life. It turns out that that [laying on the right] put the necessary pressure on the bleed, which was fortunately near the surface of the brain and it stopped the bleeding.After the bleeds were discovered, I was forced to undergo brain surgery almost immediately. "He was only 44-years-old when he had his first surgery, so it was pretty scary," says his wife, Sharon.Explaining the situation to my children was even scarier. We went home and told the kids and I broke down crying. I was going to try to be strong, but I just couldn't.It took even more time before I got an official medical diagnosis. While doctors knew my brain was bleeding, they didn't know why until several months later, that's when the same thing happened to my mother. After her episode, the Mayo Clinic conducted a genetic background on the family. I was aware that there had been some brain issues in the family. A couple uncles died, some cousins, but none of us really knew what it was.The results from the DNA background found that both my mother and I suffered from a condition called cavernous angioma. Dr. Jonathan White, a neurosurgeon at UT Southwestern in Dallas, says a cavernous angioma occurs when blood vessels form as clusters, instead of normal tube-like structures. The condition can happen anywhere in the body, but primarily occurs in the brain or spine. Sometimes the blood vessels burst, leading to bleeding in the affected area. The condition is usually genetic.My son, Mike, was also diagnosed with cavernous angioma and seven years ago, my wife and I got a distressed call from him. He called us and told us he thought he was having a hemorrhage, and of course we told him to get to the doctor immediately.Mike was in fact suffering a hemorrhage, one he would later undergo surgery for. I felt a little bit of guilt, you know, knowing that I passed the condition on to him. When I went to visit him in the hospital, the first time after the hemorrhage, he looked really bad, and I remember he said to me, 'Dad this isn't your fault'."Over the last 20 years, I have been through five major brain hemorrhages and I have endured two grueling brain surgeries. Like most patients with debilitating conditions, I often times asked why. "I thought to myself, what did I do, to deserve five bleeds and two surgeries."My worst hemorrhage, and most severe, happened two years ago. The episode was followed by my second brain surgery. When I look at a photo of himself, taken four months after the last hemorrhage, I would say that it's a real miracle that I've recovered to the extent that I have.Now I am telling his story in a new book called 'Brain Storms: Surviving Catastrophic Illness'. In it, I explain how I've been able to overcome so much adversity and turn it into hope. I never allowed myself to believe that I wouldn't get better. I prayed every day that I would get better. In fact, some days it was all I could do.I began writing the book while recovering from my Christmas Day 2005 hemorrhage and subsequent surgery, so it deals with every up-and-down with my recovery, as it happened. If he could re-title the book, it'd be called '27 Things to Do When You Get Really Sick'. It's 27 things that you can do to survive and recover a serious illness regardless of what the serious illness might be.The thought of helping others drove me to get better during the early days of my recovery. If I can pass that along to other people and also if they can see me a walking talking functioning human being after all that I've been through, it just helps me to know that I've helped them.I have other cavernous angioma in my brain, that could begin to bleed at any moment, but exactly how many is unknown...at least to me. Only my neurosurgeon knows. I don't want to know, I just want to concentrate on living my life. It's counterproductive to worry about what might or might not happen the next day, so I just continue to live my life to the fullest.

Becky
September 22, 2006 completely changed my life... I had a seizure while working out at the gym, at that time I didn’t know what was happening. I was 30 and had a 5 year old son and 2 year old daughter. The gym called 911, in my mind I thought I was fine, just over exercised, no need to call paramedics. I tried to talk, but my tongue wouldn’t move, I couldn’t talk. They took me straight to the local hospital; I don’t remember the 2 mile drive. After awhile I finally came out of my seizure (for me they are more stroke like than seizure like), telling the Dr’s I was fine, I just wanted to go home. Then I realized that my daughter was at the gym with me, WHERE was she? Who had her? I won’t ever forget that feeling, a parent’s worst nightmare! She was fine; the gym people took her and called my husband and in-laws. The ER doctors wanted to do a CT scan to make sure everything was ok. He came into my room and said I had an aneurism the size of a quarter and they were transferring me straight over to Barrows Neurological Hospital (one of the best) 20 miles away. Only I wasn’t concerned about the “aneurism” I was thinking…can I have my husband take me and save an ambulance trip?? They didn’t think that was funny! Once I got to Barrow’s, the Dr.’s did an MRI/MRA and discovered that I had a Cavernous Malformation in my right frontal lobe, not an aneurism. They didn't want to operate on it then (operation??!! brain surgery??!! what??!!) I was in the ICU at Barrows for 4 days, asking the nurses if I could take a shower! Talk about throwing ICU nurses for a loop; most ICU rooms don’t have a shower! Luckily they let me go take a shower all by myself!! Unfortunately or fortunately, I had to wait to see Dr. Spetzler (again, thankfully, one of the best), he was at a conference, so I was finally released after the other neurosurgeons consulted with him. I couldn’t drive for at least 3 months because of the seizure, and from that first day, began the headache that would not go away. I got into see Dr. Spetzler on December 4th and he suggested having brain surgery to remove it. He thought it was easily accessible, I was young and would “bounce back” quick. The one risk would be complete paralyzation on my left side. Despite that risk, on December 14th, I had brain surgery to remove my "Buddy" as we named it! I spent 4 days in the hospital, had some numbness on my left side and the headaches were still there, but was considered a successful surgery. At the post-op check up, the numbness and headaches were still present and Iwas told that it was swelling from the surgery. Well 3 years, daily headaches, numb/heavy leftside, and several breakthrough seizures later, I am doing ok. Still not where I was before all this happened, but thankful it isn’t worse. I have had several MRI’s/MRA’s since; and there is still some residual staining from my bleed and some scar tissue. I was also just diagnosed with having a Chiari Malformation, Oct 2008, Dr. Spetzler just wants to watch that and see if it progresses with other symptoms. Despite it all, I live life to the fullest I possibly can!

Savannah was at her computer doing physics homework when her right foot went numb.
"So numb that someone could hit it with a hammer and I wouldn’t feel it," she said. The numbness spread up her calf, to her hand and finally to her armpit.
By the time Hollis’ boyfriend got her to an emergency room in Lafayette, La., her left eye was darting wildly in all directions. She tried to sip some
Sprite but could not swallow. When she opened her mouth to speak, no one understood her.
Hollis, a pre-med major, had looked up her symptoms on the Internet and suspected a stroke. But for a 21-year-old, she figured, that couldn’t be right.
As the hours ticked away, Hollis never lost consciousness. She understood that something was terribly wrong, but she couldn’t grasp what was
happening to her.
About 10:30 p.m. an emergency room doctor called her mother, who was driving to Lafayette from her home in Hurst, TX. An MRI had revealed bleeding in Hollis’ brainstem, and there was no way to stop it.
"How far away are you," the doctor asked.
"Maybe four hours," Gwen Perkins replied.
"You need to hurry."
The ordeal
When Perkins arrived at the hospital, her daughter was slumped to one side in the bed and her eyes were rolling around so much that it was hard to
look at her without getting dizzy. Over the next three days, however, Hollis’ condition stabilized as the bleeding stopped on its own.
She had survived, but she was left with the effects of a hemorrhagic stroke.
"I couldn’t sit up, swallow, see, talk or walk," she said.
The bleeding in her brain began Aug. 26, 2006.
But nearly a month went by before Hollis learned what had caused it.
By then she was already entrenched in physical therapy at Baylor Institute for Rehabilitation in Dallas. Hollis thought that the bleeding had been an
isolated incident and that her greatest challenge would be learning to walk, talk and swallow again.
Then she learned that an MRI had revealed a cranial cavernous malformation in her brainstem, a vital area that controls breathing, heart rate and blood
pressure. It was the worst possible place for something like this to occur.
Now that a cluster of blood vessels had bled, it would likely happen again—and the next time could be fatal. If she did nothing, Hollis faced significant
impairment and the scary possibility of death.
"She would not be able to exercise, have children or even overexert herself," Perkins said. "And there was no telling when it would bleed again."
The malformation had to come out. But finding a neurosurgeon to perform the delicate surgery was difficult.
"The first doctor said that since it was on her brainstem, there was no way he’d touch it and we’d be hard-pressed to find someone who would," Perkins
said. Hollis’ family kept looking until they found someone willing to do the surgery. Dr. Duke Samson,chairman of neurosurgery at UT Southwestern
Medical Center at Dallas, agreed to take Hollis’ case.
"There is no effective treatment other than surgery,"he said.
"But the brainstem is a forbidden city as far as surgery is considered," Samson said.
Hollis did not hesitate. "If this was what I had to do to get on with the
rest of my life, then I had to do it," she said.
The disorder
Cerebral cavernous malformations occur in about 0.5 percent of the general population. Only about 10 percent occur on the brainstem.
On an MRI, they look like big pieces of popcorn in the brain, Samson said.
About 25 percent of people with a CCM never experience symptoms, according to the National Institute of Neurological Disorders and Stroke. The
CCM never grows, bleeds or causes seizures,headaches or paralysis.
"Some will remain almost like they’re in limbo forever, he said. "There’s no reason to take one out if it is not active." During Hollis’ surgery, an incision was made from behind her ear to the back of her head. Another CCM in a different part of a brain was left untouched
because it posed no risk. After surgery, Hollis took a year to recover before
enrolling at the University of Texas at Arlington. She also got involved with the Angioma Alliance,a nonprofit organization that supports education and
research. She plans to start a support group to help others facing similar health problems.
After spending so much time in hospitals, Hollis said, she decided against medical school and instead plans to teach science.
The future She has tried to get on with a life that has itslimitations. Despite therapy, she still cannot swallow, she said, except for tiny sips of chocolate milk or
strawberry shakes. For more than two years she has depended on a feeding tube for all of her nourishment. But she keeps trying. Once a runner, she has yet to regain her stamina, and she goes to bed early. It’s not exactly the lifestyle of the typical college student, but Hollis is not complaining. She just hopes that others who experience CCM symptoms do something about it.
"I kept thinking it was really nothing," she said.
"It wasn’t."
The experience has given Hollis an extraordinary perspective on life that even she seems unaware of, Perkins said. But clearly she feels she has a purpose. "It’s not to be a martyr or an inspiration but to show people there is no obstacle in life that can’t be overcome," she said. "I don’t think she even realizesthis gift she has walked away with, but everybody else does."
Jan Jarvis, Star-Telegram.com

Taken from The Spring 2009 Angioma Alliance NewsletterSince the article was written, Savannah has had the feedting tube removed, and is able to eat and drink (though very carefully)

During the summer of 2007 I received wonderful news. I was pregnant. My husband and I were thrilled. We were trying to conceive, and our hopes of starting a family were finally a reality. I quickly made an appointment with my OB to confirm. Finally, our eight week appointment came. We were excited because we were actually going to be able to see the baby. My doctor performed the sonogram and immediately found the baby. . He looked at my husband and me and said, “I am sorry, but there is no heartbeat.” I was devastated. I was sure everything was going to be just fine. For the past four weeks all I wanted to do was vomit…how could things not be okay? It would not be until later we would realize that is our guardian angel.
A week after my D&C I began suffering from terrible headaches. I had headaches similar during my pregnancy, but felt they were hormone related.. I called my OB and he did not feel they were related to my pregnancy and requested I call my family doctor. I made an appointment with my family doctor. He did not feel the headaches were anything to worry about. He felt I had been through something devastating, and they were probably stress related. I tried the headache medicine he prescribed, and that did not work. Nothing worked, nothing would cure the pain. My doctor decided to try me on antibiotics thinking maybe it was sinuses…That did not work either. There were some days my headaches were so bad I was convinced I had an aneurysm. I would just go to bed at night praying that I would have a tomorrow. Finally, I convinced myself it was just stressed and it would pass. I have always been known as a “hypochondriac” and figured stressing about the headaches was just making matters worse.
A few weeks later my husband and I went to New York on a summer vacation, and while there my headaches got worse. I phoned my doctor from New York and told him I wanted to see a Neurologist. He still believed it was stress, but for my piece of mind he decided to refer me. As soon as I got of the phone with him I called the Neurologist. They luckily had an appointment for the day after we returned.
On Wednesday, August 1st, I met with the neurologist. After a quick review, he sided with my family doctor. He felt it was stress, but wanted to run and MRI/MRA just to be sure. His thought was maybe a blood clot traveled to my brain during the miscarriage. The following Monday I had my MRI/MRA. When we left they said the results would be in my doctor’s hands by the end of that day. I was terrified, my blood pressure skyrocketed and I was shaking. The neurologist walked in the room, looked at me and said you have an aneurysm. He just blurted out the news. After he literally picked me up off the floor, he told me he was sending me to a Neurosurgeon. My husband and I asked him several questions and he would not answer one of them. All he would say was, “I do not know.” Even though I knew something was wrong, I guess I did not believe I would actually be right. I am young and naïve. Bad things can’t happen to me.
Luckily the Neurosurgeon he sent us to fit me in that same day. When we arrived we were faced with another shock. It was a spine and back neurosurgeon. How was he going to help me with my brain? When he walked in the room, the first thing he said to me was, “You are going to be okay. This is one of two things: an aneurysm that is thrombus or a Cavernous Angioma.” He took his time and explained the details of each possibility. He then said that this was not his specialty area so he was sending me to Dr. Duke Samson at UTSouthwestern in Dallas. He explained how fortunate I was to be living in this area. He said UTSouthwestern is in the top three Neuro Hospitals in the Country, and Dr. Samson is considered one of the top neurosurgeons in the country. Thank you! The first good piece of news I received all day.
Dr. Samson’s office contacted me the next day and scheduled an appointment for the following Tuesday. Of course I wished he could get me in sooner, but felt blessed he could get me in at all. Then came Tuesday. I was terrified, but confident because we knew we were in the best possible hands. When we arrived they immediately escorted us to a room. Shortly after, Dr. Samson came in, talked with me for a while, and then reviewed my MRI. In a matter seconds he told me I had a Cavernous Angioma, and he could tell there was a recent hemorrhage. He strongly felt, but could not say for sure, that my recent pregnancy caused it to hemorrhage. He thought surgery was the best option. He knew I wanted to start a family and did not want my husband and me to be faced with the possibility of a future hemorrhage. This hemorrhage only caused severe headaches. If it hemorrhages again, the side effects could be more severe. My mind was made up. I wanted surgery. A craniotomy sounded terrifying, but I did not want to ever have to worry about my Cavernous Angioma again.Two weeks later, August 28th, I was scheduled for a CAT Scan to see if the swelling of the CA had reduced. Luckily it had! Dr. Samson said it was time to schedule surgery. I wanted the first available date and time. My surgery was then set for September 12th at 12:30. As sure as I was; of course I was still terrified. I was having brain surgery. I tried to keep myself as busy as possible. I am a teacher, and had six weeks of lesson plans to make perfect for my replacement.
My first night in ICU after surgery seemed like the longest night of my life. The nurses were in and out and I had a CAT Scan and MRI performed.
My hospital stay was very uneventful. I slept a lot and did a great deal of walking the halls. My only lasting deficits are memory loss and partial seizures. But, I am alive and well! That is all that matters.
My husband and I now know the baby we lost was our guardian angel. God sent it our way to tell me I had something more important to take care in my life before bringing another life into this world.
I am proud to say that I gave birth to a health and happy baby boy in December of 08’.
My husband and I are thrilled to have this miracle baby boy after suffering such from such a terrible loss. Dane is the light of our lives, and he reminds us daily of just how lucky we are.
My health has been great since surgery. My headaches went away for a while after surgery, but sadly they have returned. I still suffer from daily headaches. Some days are worse than others, but we are managing. I am currently being treated by an incredible neurologist and neurosurgeon. We will try all medications til’ we can get it right.
I have had several MRIs since surgery and they have all come back clear! YEAH. I am truly blessed!!

When our daughter Julia was 4 months old, my husband John and I found ourselves driving our baby to our local Children’s Hospital for what I thought was a bad flu. Instead, we wound up sitting in radiology listening to the doctor tell us the unimaginable: “Your daughter’s brain is full of tumors, and she must have surgery today.” She was dying.

That was the moment that changed my mothering, my life. The tumors turned out not to be cancer, but cavernous angiomas. I had never heard of cavernous angiomas but quickly got the short course about abnormal blood vessels, hemorrhages, etc. This was good news and bad news. The good news was that Julia would not need chemo or radiation. The bad news was that this is an illness that would never end.

Since that day, Julia has been through four brain surgeries, come back from partial paralysis, a seizure disorder, severe fine motor deficits, and what could only be described as the horror of these hospitalizations, recoveries, constant tests, and therapies.

As her mother, I’ve had to hold her down during painful procedures. I, along with John, have had to hand her to surgeons knowing exactly what was going to happen to her.

I have had to try to answer the hardest question of all: “Mommy…why?”

I can not take this away from her today. But, I’ve chosen not to surrender to the helplessness. When Julia was 3, I worried that she would never meet another child with cavernous angiomas. There were no patient organizations, no support groups, very little basic information on the internet. I could not let this be her future. I founded Angioma Alliance as a way to meet others with the illness and as a way to get good information out to the world. What I didn’t know then was how much this was needed, and what it would start. My little website has turned into an international organization bringing together families, researchers, doctors and government so that maybe one day, Julia and I won’t have to worry about when those time bombs in her brain are going to go off.

I’ve had many people say to me about her, “If you hadn’t told me, I wouldn’t have been able to tell.” I’m not sure how I feel about this as I’m not sure it acknowledges the reality and impact of her experience. But, it is certainly better than the children who have of late taken to calling her “crazy” or the mothers on the playground who whisper that her apparent lack of socialization is a reflection of poor parenting. Sometimes I confront and educate when I hear these things; sometimes, I am just too tired. Every time, I am grateful for the families who have opened up their hearts and homes to her with love and acceptance.

Each morning, I walk into Julia’s room with a shadow of anxiety following me, and I breathe and rejoice when I am able to wake her. Each day, I rejoice when she’s made it through school, when we read together, when we laugh. She infuriates me and fills me with pride. She is impulsive, inattentive, inappropriate. She is fiercely accepting, honest, forthright, and fearless. She’s been featured in newspapers, magazines, videos, a book, and on TV, but she has no understanding of how much her young life has affected the world.

This is not the mothering experience I had expected. It is not one I would wish on others. But, there is poignancy to my relationship with Julia that could only have been born out of our deepest recognition of its fragility. When I look at her with my heart, along with our love, I see the tears of the past and the tears that are likely still to come. But today, today, she is happy. Today, I am allowed to be Julia’s mother...and that is everything.