I was asked, along with two other parents, to share our story at Lola's school conference. So I wanted to also share my speech on Lola's blog, as some of you might not know how we truly came to be at this place in our journey. It was not an easy talk to give, especially after hearing the stories of the women who spoke before me. I'm glad that I did it, but boy, was it tough. This picture was taken just before I spoke - this is Kim, Lola's teacher and IPP coordinator - and she is amazing.
Here it is:
"If you learn from your suffering, and really come to understand the lesson you were taught,you might be able to help someone else who is now in the phase you may have just completed. Maybe that's what it's all about after all... "Anonymous
When Paula asked me to speak today, she said, “Your story’s a little different than the others.” What an understatement! It’s a difficult story to tell, but I promise you that it has a happy ending.
We were blessed with two healthy, typical children. My son, Liam, was born in 2003, and Lorelai followed in 2006. Perfectly healthy, all milestones checked off at the appropriate times in the baby book. In retrospect, we were living the perfect life. Little did we know what was just around the bend.
In November of 2008, Lola had what we thought was the stomach flu. She threw up repeatedly, we gave her small sips of pedialyte and waited for it to pass. At 8 pm that evening, she suffered her first seizure. She was rushed to the Alberta Children’s Hospital where numerous tests were run, determining nothing. As we were being discharged the next morning, Lola had a tonic clonic seizure in my arms, in the presence of a nurse. I remember her being taken from my arms, and the room flooding with medical staff. She was whisked off for a spinal tap, where it was determined that she had meningitis. While we waited for other cultures to come back, Lola continued to deteriorate. She was started on IV anti-viral drugs while we waited. I remember the look on the face of the neurologist as she came into our room to deliver the devastating news. I was lying in the crib with Lola (picture that for a minute) as she told us that the cultures came back positive for HSV encephalitis, which carries with it a 70% mortality rate. She had a 1 in 1 million chance of contracting the disease. And then she got it twice.
We spent the next three weeks in the hospital while Lola was treated with anti-viral drugs. During that time, we were introduced to the Brain Injury Team, and started along our road to recovery. Lola was so feisty that some of the therapists had to administer their treatments from the hallway – hoping that their mere presence wouldn’t upset her too much. Within those three weeks, Lola’s recovery was miraculous. She re-learned to walk, and had recovered every element of her previous self except for her speech – all she would say is “Me?” in a questioning voice.
We were discharged home, and three days later Lola had declined substantially. We had taken her to the ACH twice, only to be sent home. They said she was just adjusting to her meds. When we finally took her back into emerg 12 hours later, she could no longer walk, eat, track objects, or respond to painful stimulus. We were re-admitted, and told that she had suffered a relapse. In actuality, it was not the same virus – rather, it was termed “acute demyelinating encephalomyelitis” - an unexplained, random “flare-up” that would leave our daughter substantially brain damaged, unable to hold up her head, speak, smile, cry, sleep, eat orally or sit up, and plagued with a movement disorder and extreme right-sided weakness/hemiparesis.
We were living a nightmare. The Brain Injury therapists became our friends, and we looked forward to their daily visits. They worked diligently, with little improvement from Lola. The movement disorder made things even more complicated, and the meds had brutal side-effects.
I decided that as long as we got to keep Lola, that we would get through anything else that was thrown our way. I remember the social worker at the hospital handing me a pamphlet for FSCD – and I thought, “This isn’t for us, is it? How is this happening? Doesn’t she know we’re the million dollar family?” I thought Lola would bounce back like she did the first time, even though many neurologists would tell us otherwise. I have declined viewing her MRI – I don’t think I ever want to picture my daughter’s brain as anything other than perfect. I don’t want to subconsciously place limits on her because of a picture that’s ingrained in my mind. I know the injury is substantial, and I know that it’s predominantly on the left side, and that it affects the brain stem. Beyond that, I can pretty much figure out that it’s “not good” by the pathetic, pitying glances we’re given whenever her MRI is discussed. But they haven’t factored in Lola when they look at that MRI. And the power of Lola is incredible.
We were discharged with a list of meds, a feeding pump, crates of pediasure, syringes, emergency seizure meds, catheters, a bath chair, a tumbleform chair, and a kid-cart. We met with an OT who discussed having a wheelchair ramp installed on our porch, as well as having our stairs adapted to our second floor. We shook our heads in disbelief. This couldn’t be our life.
We had a neurologist who uttered the term “poor prognosis” to us while we were in the depths of despair. We cried, and when the neurologist left, one of the older nurses came in and gave us supreme heck. She said, “Don’t you let her decide your daughter’s fate. She has no idea – it’s just a best case scenario. Get up, have a drink of water, and forget everything she just said. Allow only positive words to be spoken about Lola in her presence and don’t believe the doubters.” And that’s what we did. I’m sure that the medical professionals on Lola’s team think we’re ridiculous – when they tell us horrible scenarios, we smile and nod and think, “But you don’t really know our daughter.” She’s a medical mystery, and that’s something that’s on our side. They’ve never had another Lola, with the same diagnosis, with the same outcome. Are we naïve? Sure. But we prefer to think of ourselves as hopeful. We’ve got nothing else. And I don’t think being realistic in this situation would help our daughter. Our nurse practitioner requested a brainstem response test to determine if Lola could see and hear. The neurologist responded with, “What’s the point of running that test. We know that it’s going to be delayed.” Many who worked with Lola believed that she was blind and deaf. Well, lo and behold, the test came back normal. Every now and then, we encountered an angel in the medical profession, who truly believed in Lola. We had an optometrist appointment after we were discharged, and I’d never met this doctor in my life. I must have looked defeated, though I usually do a good job of masking it. She said, “They really don’t know what these kids will do, you know. Even the neurologists are scratching their heads half the time. It’s all just a guess based on the information they have. I think Lola’s got a long way to go.” We also had a physiotherapist who worked with Lola in Ontario while we visited. She got Lola to stand, with much support, and she gave us the gift of hope that day. I always try to extend this hope to other parents who may be walking a mile in my shoes – I often find them online, and I try to be the voice of hope in their lives. Late at night, after the kids are asleep, I find myself online researching. I stumble across blogs for parents of near-drowning children, and I continually find myself drawn to reading their stories. My husband thinks it’s depressing, but I am constantly finding out about new types of therapies, stem-cell research, and even ipad apps by reading about these children’s stories. It helps me to know that there are children who are fighting as hard as Lola is to gain their tiny inchstones.
I recall being in an appointment at the Seating Clinic at ACH – I had picked out several “adaptive strollers” and I had the pamphlets with me. The seating specialist smiled and nodded and said, “Surely you’re not going to send your daughter to school in a stroller.” (Lola was 3 at the time) I said, “No, of course not. She won’t be needing a wheelchair or a stroller by then. She’ll be walking.” The woman looked pityingly at me. When they showed me the wheelchair that my daughter would be eligible for, I gasped in shock. It didn’t help that they only had a really big, bulky chair to show us – the smaller ones that would fit her were being used elsewhere. I said, “I wouldn’t put my grandfather in that thing.” It was an incredible day when we returned the loaner Kid-cart – while Lola strolled along beside me, holding my hand. We received Lola’s standing frame the day after she began to walk. Navigating the ins and outs of equipment loaning/acquisition was interesting, to say the least. Lola was with me when I returned the stander to the hospital as well. They said, “We just had this built.” I said, “I know, but isn’t it great – we don’t need it and some other child can benefit from it.” They looked from me to Lola and shrugged.
Another victory was having Lola’s g-tube removed. By that time, she had been eating and drinking orally for over three months. When it was placed, the doctors told me that it was likely to be there for a very long time. Within 8 months, it was removed.
The first time that we met Kim and Deannie, Kim walked right past Lola to find the “other little girl.” I looked at her confused. Kim said, “Is she upstairs in bed?” I said, “No, that’s Lola.” Kim’s hand covered her mouth as she gasped – completely in disbelief. In the few months that had passed since GRIT received Lola’s intake assessments from the folks at the hospital, Lola had learned to sit up, roll, crawl, and was now cruising furniture. Kim and Deannie were both pleasantly surprised that the little girl smiling at them from the edge of the couch was indeed the Lola they were looking for.
We always have a good chuckle at Lola’s IPP meetings, as the women on Lola’s team cross out, delete, edit, re-word, and smile, as they revise Lola’s goals – for the 4th or 5th time. Lola is an enigma – make no mistake. She is constantly changing and progressing –despite her seizures - and you really never quite know what to expect. Nobody at GRIT puts limits on Lola – and I love that. When she aims high, they aim just a bit higher. And they love her and encourage her every step of the way. Somehow, I know that they’ve experienced their fair share of miracles along the way.
What does our life look like now? A year after Lola’s brain injury, she developed seizures. After a year and a half of trying and failing several meds, we are now on the ketogenic diet. It requires hours of preparation daily, close monitoring of her blood ketone levels, vitamin intake, etc. And we’re not even convinced that it’s doing much to control her seizures, which is frustrating. The seizures are a constant in our life, and we have tried numerous meds, in combination, and also receive ivig every three weeks, which is intravenous immunoglobulin – the pooled blood product of 3000 donors. The intent is to supercharge Lola’s immune system in the event that the seizures are auto-immune related. Each night, either my husband or I sleep with Lola because of her seizures. She has a helmet which she wears when her tonic and atonic (drop) seizures are really bad. Living with seizures is a nightmare – on a bad day, she can have up to 30 per day. Many of the things that we try are a “shot in the dark”. We are currently discussing our next step with neurology – there is a possibility for a right temporal lobe re-section (and that’s her “good side” so we’re terrified).Well, it’s never going to be easy. We are currently transitioning from a less-than-ideal live-in caregiver situation to a hopefully much more positive one. My husband and I work full-time, and Lola is with a nanny for a good part of the day. Lola has music therapy once per week, and of course all of her therapies through GRIT. She attends playschool two mornings per week with Deannie, her DS, and is doing really well. We try to balance all of Lola’s needs with those of our son, and we fail miserably.
We are trying to find new ways to interact with Lola, and the ipad definitely helps in this capacity. Lola can play with her brother and “communicate” with him in a way that we had never imagined. It’s very exciting. If we can get her to stop turning it off every 30 seconds, imagine the possibilities. We’re trying to get out of the house more, but it’s tough. The seizures and diet further isolate us. I often feel like we’re the only special needs family in Airdrie – which Deannie assures me we’re not. I often say, “How come I never see them out in the parks, at the school?” I guess I’m just not looking hard enough. I long to connect with other like-minded parents who “get it” – who understand that seizures aren’t a big deal, and neither are g-tubes, glasses, AFOs, wheelchairs, trachs, etc. etc. I still get sad when I see other little girls who remind me of the perfect life we once had. But then I look at Lola and I’m reminded that she’s still here, and that she’s still fighting with everything that she has. Then the sadness fades into something else: hope. At 4 years, 8 months old, Lola has now been brain injured for as long as she was previously healthy. That’s difficult to swallow.
Lola is a feisty, sassy, curious, loving wee sprite. I love her personality and the way that she approaches life – full on. She walks, runs, walks up and down stairs, plays, reads books, loves music, loves her brother, makes us laugh, gives really big kisses and hugs, and dances. She screams like a pterodactyl caught in the wheels of a car, and throws really big tantrums. The absolute best part of my day is when I snuggle into Lola’s little pink bed, and she hugs me tight, puts her cheek against mine, and says “Ma” almost like a sigh. She doesn’t say it any other time. It’s the most amazing gift.Without the help and expertise of our team at GRIT, I don’t know where we’d be. They are our lifeline, and our link to integrating Lola into everyday life – things that other littles get to experience. Swimming, riding a bike, dancing, playing with friends – who doesn’t want those things for their child? I can’t thank them enough for everything that they bring to our life. They get to experience the Snuffleuppagus Effect numerous times with Lola – where you think you’re imagining things when she does something new (Deannie swears she said “alphabet” plain as day a couple of weeks ago). Lola has regained the use of her right hand, which in itself is incredible.
So I promised you a happy ending – and here it is – in pictures. Our life doesn’t look like we thought it would – but the rewards are so much bigger than we ever thought possible. Lola has taught us patience beyond belief. She has made us prouder than we ever thought possible. She is truly a miracle. I’ve grown so much along this journey with her. We quote William Shakespeare on our blog, and it so accurately depicts our Lola “Though she be but little, she is fierce.”
After Liam's Advent Celebration at school.
