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The hardest thing I’ve ever had to write.

Being an open book has served me well in my life. I like to speak frankly about myself, to not have any illusions about what I am and what I am not. I have no problems being on Twitter, FB, this blog and telling the world anything about myself. Except that I don’t. Not really. Speaking about personal things is not my forte, instead I would rather focus on the superficial.

When bad things happen, I don’t really talk about them. I never have. I run, I hide, I ignore. I like to talk about the fun things in life, the happy things. I make fun of my kids, because they are funny and easy targets. I don’t talk about how my daughter Emma has given me worry lines on my forehead since in the womb. How lucky I feel to have her here with us, healthy, happy and often bratty.

This has been the hardest thing I’ve ever had to write. Yet I felt compelled to write it. I couldn’t stop. Only a handful of people know this story, people who were there at the time. I don’t talk about it now, or much back then either. It’s become somehow important for me to share this, to be open with you all if I ever expect you to be open with me.

When I was 3 months pregnant, it was hard to get into an OB/GYN here in Calgary. It was also hard to get a family doctor, so I was just kind of used to seeing whatever doctor worked in the closest walk-in clinic. Before having kids, I was actually a pretty healthy person so it was rare that I ever needed to see a doctor.

So when we found out we were pregnant, I went to a doctor immediately. The first one I found, who actually knew very little about prenatal care. After my 3 month ultrasound, we were called in to be told that our baby suffered from something called Single Umbilical Artery or SUA. Our doctor had never heard of it (!!!) so she had printed off some info for us. It was stupid, scary, BAD information that told us things like our baby had a high chance of mortality, birth defects, etc. I had never been so scared in my life and I cried and cried and cried that day.

Thankfully, because of the SUA, we got prioritized to see an actual OB/GYN and he knew his stuff. He assured us that SUA is in fact pretty common. It did not mean our baby was going to die, only that because there was one artery instead of two in the umbilical cord that it was just a little harder for the baby to get its nutrients. We just had to go to monthly ultrasounds to monitor the growth. Other than that, no biggie.

So Emma’s birth came and went and there were absolutely no complications. She certainly had no problem getting nutrients as she weighed in at 8lbs 6oz and was one week early.

The next two years went by in normalcy. She had colic, she got teeth, she crawled, walked, ran. But one night, she made our hearts stop.

We were watching a movie in bed, she had fallen asleep between us. I felt her tickling my arm with her little chubby two-year old fingers. I looked over at her and she was sleeping with her eyes open again. It was such an unnerving thing, but one we were used to. Except this time she wasn’t sleeping.

As she continued to tickle my arm, I got a terrible, sinking feeling. I turned to her again, saying her name.

“Emma.”

“Emma?”

“Emma!”

Her eyes were still open, her fingers were moving rhythmically in the air, grasping at something that wasn’t there.

We tried shaking her, we tried yelling her name. Nothing worked. I frantically screamed at Dave to call 911. I had absolutely no idea what was going on, but I had never, ever in my life been so petrified.

The ambulance came, the EMTs bustled into the house, checked her vitals and gave her oxygen. At some point, she had closed her eyes, and now with the paramedics in the room, she was coming to a bit. They packed her up into the ambulance, and I rode with her while Dave followed in our car.

All they could tell us at the hospital was that she had a seizure. Febrile seizures are somewhat common with small children, however – they are brought on by fever, and Emma did not have a fever. She was in perfect health before that moment. She woke up fully at the hospital and seemed ok, if not groggy.

In the months that followed, we spent a good amount of time at the Children’s Hospital. She saw neurologists, she had a CT scan, an EEG. There were no brain abnormalities to be found, thank God. We were instructed to keep an eye on her, to do small tests with her. She often stared off into space, and no snapping of fingers or saying her name could shake her out until she was ready. I had always thought this was normal, I really did. Who doesn’t stare off into space? Well, most kids don’t, actually. When she did this, we were to scratch her palm with our fingernails. Hard. It seemed so mean, but the doctors had to know if that would snap her out of these episodes. It didn’t.

So back to the neurology department we went. The staring off into space are called absence seizures, or more commonly known as Petit Mal seizures. Her doctor gave us all sorts of information, her big seizure was what is called a complex partial seizure. They didn’t really have much more information than that. We were given the choice to put her on medication, but the side effects sounded so awful, and she had only had the one seizure and then the absence seizures that weren’t harmful to her day to day life. We decided to go against meds, and went on with our lives.

After two years, Emma was seizure free. We were patting ourselves on the back for not using medication. We felt home-free, that it was an isolated incident.

In May 2008, it was the morning of our very good friends’ wedding. Dave was a groomsman and was already at the church. I was in charge of getting myself and the girls there in time, which was no small feat.  I was getting into the shower when I heard the strangest sound of my life. It almost sounded like a cat moaning, a high, guttural keening. I walked around, trying to determine the cause. I found Emma on the bed, her eyes open and staring, her lips smacking together like she was chewing.

“Ok, I know this drill, I am prepared for this.” I told myself.

Turn her on her side (apparently that tongue thing is true) and she should come out of it on her own. Her doctors told us there’s no need to dial 911. Except as I watched her, her lips started turning the strangest shade of purple blue. Her face looked grey to me. I watched her chest, there was no rising, no falling. She had stopped breathing.

Again frantic, I called 911. The 911 operator talked to me through everything, the ambulance was on its way. When the woman on the phone informed me that the EMTs were there, I hastily put on clothes and ran to open the door. They ran upstairs, and again with the oxygen, again with checking her vitals. Charlotte was 18 months old and crying in her crib. I was a mess, alone – scared all over again. The paramedics were my heroes. They installed Emma’s car seat in the ambulance. They talked to me patiently, with gentle care. They helped me call my friend Tara who drove over immediately to take Charlotte to my mom’s and to bring my car to the hospital for me so I could ride in the ambulance.

By the time we arrived at the hospital, she was acting normally. She was desperate not to miss the wedding, she was so proud of the fluffy pink dress she was to wear. So we went to the wedding. There’s nothing like walking late into a Catholic ceremony. I bawled at the vows, so happy for my friends, so exhausted by my morning, so relieved that the little girl next to me was happy, smiling, breathing.

Again we met with neurologists. Epilepsy, they said. Two major seizures like she’s had – they define as epilepsy. Now that she’s had two, expect more, they said. Another EEG. Still no abnormalities. I felt angry, out of control. Are we just supposed to sit around and wait? Hope that she doesn’t have a seizure while swimming, riding her bike, doing normal kid things? Yes, they told us. Why is this happening? WHAT is wrong with her? There was nothing they could tell us. The brain is a mystery, they said.

Emma is going to be 8 soon. She had a seizure at two, at five. Every three years. This is the third year, yet we’ve been seizure-free. Do I dare hope? Is it over? Lots of people seem to grow out of epilepsy. I have no answers, no solutions. Emma has no idea about her seizures really. We don’t talk about them, we try to forget. Her sister Charlotte has been perfectly healthy from day one.

We are lucky, so very lucky. Emma is whip smart, she’s funny, she’s sarcastic and she’s wise. The seizures have really had no negative effect that we can see, except on our hearts.

I don’t talk about personal things because it’s hard. I don’t want to admit that there’s something wrong with my girl. Instead I focus on the everyday amazing, because I can’t see how anything could be more important than that. All we can do is just live these glorious lives.

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  • Sonia Aguiar - Brandy, I know we don’t know each other…. but I’m sitting here on the other side of my computer crying… being a mom of a 1 year old and having already had to bring my little one to the children’s hospital twice, I can only imagine what you went through. I pray Emma doesn’t suffer another episode.

  • Sonia Ulmer - Brandy, I know we don’t know each other…. but I’m sitting here on the other side of my computer crying… being a mom of a 1 year old and having already had to bring my little one to the children’s hospital twice, I can only imagine what you went through. I pray Emma doesn’t suffer another episode.

  • Shimsha Jain - I never really comment on anyone’s blog, but this post of yours made me to. You are one brave woman. Hats off to you for pulling it all together. Emma will be in my prayers….she’ll be alright!

  • Michelle Cervo - Oh my goodness, what an ordeal. Thank you for sharing your experience! I too never talk about my hard personal experiences on my blog or twitter, it is so much easier to just push it aside and think of the “fun”. Good for you for talking about the “hard” stuff. Enjoy every moment of having two beautiful girls!

    Michelle

  • Shannon Hilton - Thanks for sharing Brandy. There’s a reason you were driven to write this. I believe that.
    It’s a good reminder to all of us to enjoy the moments. The often mundane, repetitive moments that we all take for granted. I’m going to get off my computer now and play with my kids. I needed this reminder.
    Thanks.

  • Jamie Hyatt - Brandy, although you don’t really enjoy sharing these hardships and prefer to focus on the lighter side of things in life- I believe we all benefit from hearing the struggles of powerful woman to know we are not alone in such scary ‘powerless’ circumstances. Thank you for sharing and I wish Emma nothing but health and vitality, it would be crushing to see such a beautiful young girl go through such horrible health problems and your family on the sidelines anticipating the worse. All I can say is ‘stay in the game’ and don’t let your fear hold you back from taking life at full speed.

  • Gretchen - Oh Brandy, I understand how you feel about sharing, I tend to be a private person as well. But I’m so glad you did, I hope that you’ll find some support from other parents who might have some wisdom to offer you from experience. I can’t imagine how scary it would be to see your child have such a serious seizure, especially when its so unexpected. I will keep you and Emma in my prayers. xo

  • Gretchen - Oh Brandy, I understand how you feel about sharing, I tend to be a private person as well. But I’m so glad you did, I hope that you’ll find some support from other parents who might have some wisdom to offer you from experience. I can’t imagine how scary it would be to see your child have such a serious seizure, especially when its so unexpected. I will keep you and Emma in my prayers. xo

  • Pam - Oh, Brandy. The first part of your story happened to me. When pregnant with my daughter, after a routine ultrasound, I was told she had a one vesseled cord. They began to tell me all the things that could possibly happen, from birth defects, to stillbirth. At the next ultrasound we were told that there was a problem with Madison’s heart. That the main artery had never developed. The dr. proceded to tell me that she would be whisked away immediately after birth for heart surgery. They were wrong. Her heart was fine. However, at birth, she had the cord wrapped around her neck, and for a terrifying 10 minutes, the nurses had to perform cpr on my newly born baby. SCARIEST. MOMENT. EVER. She turned out to be just fine.
    I cannot imagine what you have gone through with your daughter. I will pray for your daughter in hopes that she remains healthy and happy.
    Thank you so much for sharing. From one mom to another… Big Hugs, and lots of prayers.

  • Brent davidson - Wow Brandy how life throws these crazy situations at us!! I know exactly how this all feels as I have a son who is six with an unknown seizure disorder. Never actually diagnosed with anything he is just prone to have seizures! We had to go the medication route and had a hard time going through with it but for us it has worked. He has not had one for over a year now and I am constantly worried about when the next one is going to happen! I know it’s hard to see your child In a state like that and I hope that you never have to go through it again!

    Thanks for this, it reminds me that we are not alone! Take care and bless you and your family!

  • robyn - brandy… thanks for sharing this with us. my nephew has gone through a similar thing and is been seizure free for 3 years. i saw what it did to my SIL all the worry, the fear, extreme stress. it was a terrible. so again thank you for sharing. even though it was hard, it will help others by hearing this story. xo

  • Amy C - Wow! What a terrifying thing to have to go through. My 5yo son started having absence seizures and was diagnosed with epilepsy at 11 months of age. It was very scary. He was on medication for about 18 months and has been seizure free ever since. But I watch him like a hawk. Every time he does something strange with his eyes my heart skips a beat. I’m always so scared it will come back. I even think of the future and think “what if it comes back when he is a teenager and has a driver’s license?” I know I shouldn’t do that to myself, but I’m a mom, and I do. Like you said, the good thing is that no major complications or negative effects have come from this. Just keep trucking on right? Thank you so much for sharing your story.

  • maria lang - I couldn’t even imagine. thank you for sharing your eye-opening story. thinking of you guys. xo Maria.

  • Misty - we don’t know each other but my heart goes out to you and your beautiful family. your daughter will be in my prayers. i can’t imagine having to experience what you have. i have a special needs child with Kabuki Syndrome and he has had 3 surgeries to date. i guess i can somewhat relate to your experiences. my son will be 7 this year. he surprises us every single day. all i can say is, live one day at a time and live those days to the fullest. you never know what life has in store. every child is a gift from God, each unique in their own way. God will never give you more than you can handle. i tell myself that every morning as i struggle through most of my days. i’ve learned that talking about things helps so much. i too am a private person. just keep yourself surrounded with the people that love and support you and your family. thank you so much for sharing this! it’s nice to know i’m not alone when it comes to struggling with constant worry about my child. i will be praying for you guys! xoxo M

  • Gabi - Brandi don’t you dare ever give up hope!!!!!

  • Dawn - Thank you for sharing. I’ll keep Emma in my thoughts. My niece grew out of hers, she had absence seizures until she was 5 and she’s 9 now. 🙂

  • Kristie M Meyer - Drew has partial complex seizures too, and it is scary. His always get worse in the spring/early summer months and it makes me a nervous wreck. I appreciate the honesty of this post. Much love to you!

  • Amie - Crying in the line at the grocery store. Your scares with Emma during your pregnancy are my first memory of the April Spring Chicks. I wanted to reach out there and hug you then and wish I could now. You are a rockstar of positivity, and the brain and body love positivity. Keep patting yourself on the back, and when Emma’s grown up, make her pay for your hair color appointments

  • Michelle Perratt - Hey Brandy, your story is so touching and you are so brave to share it. It can be so difficult being positive and optimistic when you know there is something looming overhead, not knowing if/when it’ll come down and show itself again. Yet, like you said, you just look at your daughter’s amazingness every day. What a miracle that is: that she is thriving, and you recognize each and every milestone she is making. Thank you for opening a window into your life. If you would ever like to talk, you know I’m here. x

  • Michelle Perratt - Hey Brandy, your story is so touching and you are so brave to share it. It can be so difficult being positive and optimistic when you know there is something looming overhead, not knowing if/when it’ll come down and show itself again. Yet, like you said, you just look at your daughter’s amazingness every day. What a miracle that is: that she is thriving, and you recognize each and every milestone she is making. Thank you for opening a window into your life. If you would ever like to talk, you know I’m here. x

  • Shawna - For someone who does not like to share personal stories, you did an amazing job writing this one. And it is so great that you did. So many Moms can identify with it, and sharing your story will help you, too. Thank you for sharing, Brandy!

  • Amanda Key - Thinking and praying for all of you!

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  • Miranda G - With my one-year-old asleep in the other room, my heart aches and my stomach cringes as I read this. You astound me with your bravery and one again, your raw honesty has really connected with me. Thank you so much for sharing and I wish you and your family nothing but joy, happiness and good health.

  • Lisa - Brandy, all I can say is thank you so very much for sharing this. BIG ((((hugs)))) to you and your wonderful family.

  • Carey - Thank you for your transparent heart sharing. I am heartbroken for you and I know that the unknowing wait is unbearable. But I wanted to also thank you for writing, because some day someone will be experiencing the very same thing. They will be scared and alone. They will google and they’ll come across this. And from someone else around the world they will be comforted in knowing they aren’t alone.

    I am so sorry she and you have to experience this. I pray that God will heal her and give you a peace that has no other explanation than through Him.

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  • Addie - wow, I cant imagine having to go through this… big hugs.. thank you for sharing

  • Addie - wow%2C%20I%20cant%20imagine%20having%20to%20go%20through%20this…%20big%20hugs..%20thank%20you%20for%20sharing

  • Alison Lassiter - Brandy, I commend you for being so honest. My husband suffers from Epilepsy (Grand Mal seizures) and thankfully with a good diet, a consistent good night’s sleep and with the help of his medication, he is seizure free (knock on wood) and his levels stay under control. But I know it’s a scary disease. And I pray Emma stays healthy and happy. XO.

  • LaTonya Sampson - First as a Mom, I’d like to say I’m proud of you. I have twin 5 year olds and one of them is mildly autistic so that first moment of realizing things may be outside of the norm, I can truly relate to. Sharing your story is healing to not only you so Thanks for sharing. Second, I have a friend and business partner who has a remarkable son who also suffers from petite mal seizures and went through a challenging time with modern medicine and its theories and a more holistic approach. She found great success with the use of Mycellium, a form of the herb, Ganoderma. Because of her experience with her son and learning other benefits of Ganoderma I became a distributor for a company called Organo Gold. This is not a plug at all, but if you want more information, feel free to email me I can put you in touch with two moms with children that have had issues with petite mal seizures but are using this approach to keep the episodes under control. Be blessed!

  • ana rocha - HI Brandy
    I had recently moved back to Calgary and like you, I am a mum of 3 daughters and a baby/child lifestyle photographer.
    Your story reminds me of the many moments one of my three girls had been seriously ill and the impact of those very sad moments on us, mums.
    your story reminds me of the many tears I had shared with my husband when they were so sick that we were not sure what they outcome would be.
    Today as I was walking along the Fish Creek Park, I had looked around me and there was life and a sense of calmness and peace filled my heart with joy and hope. I do hope in amongst those terrifying moments you had been though, which I know from sharing similar circumstances, you do have time to breath and realize after the dark clouds vanish that life can be peaceful and full of smiles as we all desire.
    I hope you beautiful girl grow up healthy and those sad episodes makes her stronger. I hope that those sad and worrying moments you had been through makes you stronger and brave to share a smile even when life is not that good. Thank you for sharing such moving story.
    All the best to you and your family
    Ana

  • Corey Nelson - Thank you for sharing your story. I am glad Emma is doing well now and I hope she lives out her days seizure free. As a mother I can not imagine what those moments were like for you.

  • Danielle fox - I have a similar story I would like to share with you. Same thing happened to me. By I went back into it a year ago. I have some info about to share if you are interested. Let me know. Good luck! Contact me at my email address and will give you some more details. Best Danielle fox

  • angela sackett - thank you so much for sharing…i know that feeling, and i know that sound, and it is the most terrifying thing i’ve ever experienced… and many times. our fourteen year old is successfully on medication but with sub-clinical seizure activity still in his brain; seizure-free for five years, i still get chills when i read your powerful words because I KNOW the feeling. my heart goes out to you, and my prayers for wisdom and peace and the ability to play together without that fear interfering (the day will come, i promise!!).

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  • Sandra - This post had me in tears! Thankfully, I have no had to deal with medical issues with either of my children, but I have had some serious medical issues that started with the birth of my son. The body is both amazing and terrifying! I am glad you are all okay and I wish you many years of health and happiness.

  • Wedding Planners in Calgary - Being a mother I know how it feels when your baby get sick and he continuously cries. Once, when my baby got sick, my husband and I was not able to sit properly, until the doctor said he was alright and we can take him back home. Since that day, I pray to god that my son never needs to see the hospital again. Now he is five years old.

  • Linnea - I am a grandma, got here thru a post my daughter shared. I don’t think you know her. Thank you for sharing, I am sure many were helped by your post, and I was touched. May you know that God loves your little girl and may you find rest in Him for He loves you also.

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