Tag Archives: tuberous sclerosis

I disappeared because of weed.

Shameless clickbait title, but it’s technically true.

There are actually two major reasons I’ve been pretty quiet on the blog for the past year. 1. Burnout. I think I just hit a wall talking about TSC and I completely ran out of motivation. 2. Even when I did feel like posting I couldn’t talk about one of the most significant aspects of what was going on with Connor, which was that he was enrolled in an Epidiolex trial. I was not allowed to discuss it online while in the study.

In Venice, FL to visit Grandma Judy and Grandpa John.
In Venice, FL to visit Grandma Judy and Grandpa John.

I’m still dealing with intermittent motivation, but the other issue has been resolved.

Connor was fortunate to be included in an Epidolex trial last year by his neurologist. We were shocked to get in when so many were turned down. Epidiolex is manufactured by GW Pharma by extracting CBD from the cannabis plant. Unsurprisingly, this drug is pretty controversial in the cannabis world. Most people who are using medical marijuana or in the cannabis world are not thrilled with a pharmaceutical company getting involved. I completely understand this, feel similarly and get why this is problematic, nonetheless, obtaining regular cannabis in every state was/is an issue and we were accepted around the time some companies were finally able to use a federal hemp law to start shipping cannabis oil with THC levels under 1 percent. It was still the same stuff that used to be illegal; they were just able to get it reclassified as hemp rather than cannabis because of the low THC levels. Right after we started, Georgia finally passed an immunity law protecting people for having certain types of medical cannabis for certain conditions if your doctor would sign off and you registered for a card from the state.  So the timing was weird. All that time with nothing, and then both options fell into our laps at almost the same time. We decided to try Epidiolex as it would present no legal issues with travel and other logistics (and I know low THC oil under 1 percent is in a grey area and theoretically okay in any state, but for those of us in Nathan Deal country and other states run by people with heads up their asses, nothing is guaranteed. For example, we aren’t allowed to administer the oil in the hospital without the card).

Meeting a manatee at Mote Marine in Sarasota.
Meeting a manatee at Mote Marine in Sarasota.

It was utterly pathetic to learn just how many parents were ready to attack other parents for making the decision to enroll in studies. Parents that seemed to forget that not so long ago, pharmaceuticals were their only option, too. So for those of you that feel the incessant need in the various cannabis “support” groups to do nothing but viciously attack everyone who isn’t using the strain you approve of, you can seriously kiss my ass. There is a huge difference between explaining why you feel one type is preferable and making a parent who is just asking questions in order to learn feel like an idiot because you are on a power trip. At any rate, as you’ve likely guessed, we are no longer in the study.

Captivated by the waves!
Captivated by the waves!

The first five months were fantastic. We went from 2-3 seizures a day to up to 12 days seizure-free at a time. His cognitive skills improved, as did his physical skills. He learned how to use picture cards around the house to tell us what he wanted in a day. Unfortunately, we had to take most of them down after a few weeks when he began to take pleasure in making us jump just because he could. He went from using them effectively to thinking it was funny just to make us do stuff. He also started tackling hills on our walks like it was nobody’s business. Unfortunately, in mid-July, things went to hell. He was worse than he’d ever been and it wasn’t even that his typical seizures returned, so much as he seemed to be having a lot of subclinical activity and was a blob on the couch. He’d fall all the time and could barely walk. It was a nightmare 2.5 months. This contributed to my lack of motivation on this blog and I also fell off my other project, which I plan to get back to soon. Since I was still following many cannabis groups to see how people were using whole plant oils made in legal states, I came to the conclusion that his CBD dose was too high, and as soon as we lowered it, he began to improve. Things went okay for a couple more months, but when we lost control again, we decided to leave the trial and start Haleigh’s Hope, which we order from Colorado. It’s made by Jason Cranford of the Flowering Hope Foundation. We chose it because we know several people in Georgia having success with it, including Haleigh Cox for whom it is named.

At Touch-A-Truck in Kennesaw.
At Touch-A-Truck in Kennesaw.

Right off the bat with the switch, whatever subclinical activity might have been going on started getting better. He was walking again within a week. The situation was much improved from months of being so floppy he couldn’t function and going to school many days in his chair. Seizures in general have still been a bit of a roller coaster, though not to the degree that he’s unfunctional, but the issue we are having appears to be that since he just started school, he’s catching every germ that comes his way. The slightest sniffly nose means lots of seizures, usually starting days before symptoms even show up. It has been very frustrating. However, when we are able to keep him healthy for a couple weeks at a time, he does very well. Now that we are sliding into spring, I’m hoping things will even out and we will see sustained seizure reduction.

But can I just tell you about his eye contact? That has become phenomenal since starting HH. Sometimes I feel like he’s practically challenging me to a staring contest. After a couple months, it started to dawn on me that his stimming had decreased as well.

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I have high hopes for the incoming warm weather.

I mentioned in my last post that just before I headed off to a blogging conference, Connor and Chris were getting sick. I returned home to Connor still exhibiting cold symptoms, and Chris the same. Though when Chris started having hot and cold flashes, I became suspicious that something else was at play. Connor slowly seemed to get worse and we celebrated his fourth birthday by having to give him two Diastat doses in one day, 12 hours apart for the first time ever. The next day he spiked a fever and had quit eating and drinking so we went to the ER where he was diagnosed with the flu. An IV perked him up to his old self so we went home, but he reverted the next day and we were admitted from Wednesday-Sunday. He developed pneumonia on top of the flu and almost ended up in ICU on Friday when he couldn’t keep his oxygen levels up. Thankfully, the next day he began to recover.

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Feeling better finally!
Feeling better finally!

So here’s to hoping we can make it to and through summer vacation without any further drama!

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Traveling to the Novartis Blogging Conference for TSC

I haven’t blogged much over the last year, except to rage over my pet political issue, so imagine my surprise when I was invited to the Novartis Blogging Summit for TSC.

*Insert legal disclaimer here–While I was not paid for my time at the summit, my travel, hotel and food expenses were paid by Novartis.* They also gave me a box of kittens. No. I’m kidding. Only one lousy kitten.

Four other moms to kids with TSC were also there.

Tina of Captain Jacktastic, who I initially met around the time I started this blog through WordPress and later Facebook.

Heather who has written several pieces for Huffington Post, and I met for the first time last year in DC during the TS Alliance’s March on the Hill to continue funding for the Tuberous Sclerosis Complex Research Project.

Laurisa of Land of La, who was one of my early stalking victims when I was finally able to do TSC research for more than two minutes at a time without “breathing” into a paper bag.
IMG_8972 And Stephanie of Lanier Landing, who was the only one I had really never had any social media contact with, but I had stumbled across her blog when seeking other TSC kids in Epidiolex trials. At the time, her son was the only one I knew of.

The day I left, Connor seemed to have a bit of cold and Chris thought he was coming down with it as well. This is called foreshadowing — but I’ll get into that later.

I was picked up at the Newark airport by a man holding a sign with my name. I am accustomed to such a lifestyle as I force my husband to stand in the driveway most days and greet me in this manner when I come home. It turned out Laurisa had shared my turbulent flight that wasn’t quite in a “luggage bins popping open” category, but definitely required gripping of the arm rests and the parents in front of me to intervene with their 10-year-old who was launching a panic. The driver whisked us to the Short Hills, New Jersey Hilton where I luxuriated briefly in the softest king bed ever then headed down to the hotel bar to meet the other ladies.

We had dinner with several Novartis employees and shared our stories so they could have insight on what it’s like to live day-to-day with TSC. For those that don’t know, Novartis produces Afinitor, a medication that can shrink certain types of tumors that occur in TSC. Connor, fortunately, does not have a need for this medication at this time, but it would be a likely course of treatment should he ever develop a SEGA in the brain or large AMLs in the kidneys.

It’s weird to sit and talk about your kid and TSC without having to give a bunch of background information, explaining what certain acronyms mean or why a particular medication might be preferable to another. They already know and they’ve already been there.

When dinner wrapped up at 8, we caught the train into NYC to meet another TSC mom who lives in the city.

Correction, four of us went. Tina’s no fool. She wasn’t about to let a king bed, personal hotel room and a long, luxurious shower without the door cracked listening for shenanigans pass her by.

We met fellow TSC mommy Naomi at Haymaker Bar, a few blocks from Grand Central Terminal, ordered drinks and appetizers and talked about some more acronyms that needed no defining.

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Heather revealed that Times Square was on her bucket list and since I was pretty much intent on spending every minute I could squeeze out of this 24-hour trip in NYC, I was fully supportive of her checking that item off. We trekked through the tourist mecca, which was hopping on this Friday night. As we passed by the Disney store, we were drawn inside by the sheer number of people inside at midnight. Apparently a large number of tourists venture all the way to New York and decide, as one day rolls into the next, that they simply MUST HAVE AN ELSA DOLL RIGHT NOW. It was amazing. And a little sad. But mostly amazing.

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We caught the train back to Short Hills where we bonded further as we almost spent the night in the station. The hotel didn’t offer much hope of a taxi and their shuttle service had stopped. Our first Uber driver was too stupid to find the train station. No we are not shopping at Trader Joe’s at 2 am. The second one found us, but appeared to have only been a licensed driver for a day or two. At any rate, we made it back to the hotel where it took me another hour to fall asleep, still high off neon and LED lighting (did you know that the Times Square district is the only district with a requirement for businesses to have illuminated signs and that there is a minimum, rather than maximum, lighting requirement)?

The next day was filled with discussions of TSC, diagnoses and, most importantly, what kind of resources would we have liked to have had when we received the diagnosis. We spoke of the fear of what was out there on the Internet and at least one person had been told to stick to TSAlliance.org and not to Google. Period. Novartis unveiled some new informational pamphlets for our feedback and said they are revamping their informational site.

There were some other resources they want to be sure the TSC community is aware of.

  1. The Afinitor $25 co-pay card. This only works with commercial insurance (not Medicaid). If your co-pay is more than $25, print this out and take it to the pharmacy.
  2. Afinitrac. This support program offers financial and educational support, deals with your insurance and provides other resources. Please note they are only allowed to offer it to patients who are using Afinitor on-label. If you are using it off-label (meaning for something it has not been officially FDA-approved for yet, like seizures or cognition) they are prohibited from providing this support.
  3.  Turbo & Scott. Previously the story book about a kid named Scott who has TSC was only available online, but it is now in print. It goes into a lot of detail about TSC in more kid-friendly terms. It’s a bit complex for younger kids or kids who are cognitively affected, but for older kids, siblings, or friends, it can be a great resource. There is also a comic book about a teenage Scott on a quest to meet others with TSC.

I was not required to share these resources or blog about the summit in order to attend, but I wanted to make sure people know about these resources as for many of us, the use of Afinitor (Everolimus) could very well be on the table one day, if it isn’t already.

I’m sad to say that I had to leave just before we wrapped up to catch my flight so I didn’t get to spend more time with my mommies, but perhaps my suggestion, as I exited, to do this again in Vegas will be heeded by Novartis 😉

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And so I headed home where I would soon learn that the cold was not a cold…but more about that in my next post. A full update on Connor to come and the reasons why I’ve dropped off the mommy blogging planet.

 

 

 

 

 

For all we have lost, there are great treasures that remain.

Day 29 of Blogging For TSC Awareness

by guest blogger Rebecca Thereault

For all we have lost, there are great treasures that remain.

image-12Tuberous Sclerosis Complex (TSC) hijacked our daughter’s genome. Like the lowliest of thieves, it stole from an innocent baby.  It’s haul?  A base pair on her TSC2 gene on her 16th chromosome, to be exact. Two tiny amino acids that shifted her genetic code and forever hindered her ability to suppress tumor growth in her body.  Funny thief–one that gives more than it takes.  What TSC took has caused tumors to grow in her heart, brain, skin, and kidneys; it has caused epilepsy, heart failure, autism, developmental delay, and more.  It’d be easy to hate such a thief and sometimes I do give in to the loathing. What I have learned, what Kaleigh has taught me in her 5 and a half years, is that for all we have lost, for all that TSC has taken, for every hurdle, for every burden, we have also gained.

Before I go any farther, I need to pause here and clarify my image-14dangerously close to sounding Pollyanna statement that I have gained things from TSC. TSC is a devastating, incurable (currently) disease.  I am not thankful for what it has done to our daughter. It has nearly taken her life on more than one occasion. AND, I have gained things as an individual, we have gained things as a family, that I and we would not have otherwise.  I could write about the seizures, the MRIs, the hospital stays, the therapies, the behaviors, the terror of it all, the need for more research, the scientific advances, or why this disease should matter to you. In some ways those issues are easier to articulate–there is a concreteness. But, when I think of what the presence of TSC in our lives has really meant and truly taught me, I think about the “and” of life. It is the idea that there is no darkness without light, no joy without pain, there are and must be both. Kaleigh and TSC are inexplicably entwined–it is literally weaved through the double helix of her DNA.  AND, she is not TSC.

image-13 I was 29 weeks pregnant when the ultrasound technician said she needed to call down a specialist because there was something wrong with our baby’s heart.  It was the first time we were introduced to TSC.  It was as though a vortex opened and sucked away all our hopes and dreams and left us empty and terrified.  Perspective, and time, have changed these memories for me. I see now the seedlings of “and.”  We were devastated and hopeful.  Terrified and determined.

At the time, it felt like a lie to even smile. I was stymied by the image-15darkness, the anger, the overwhelming devastation.  I told no one at my baby shower, only immediate family knew.  I spent the day opening presents for a child I was told may not survive.  I smiled for the camera as I checked my watch because I had to run back to the hospital to receive the second of two shots intended to develop her lungs and give her more of a fighting chance.  All I was able to focus on was the insincerity of my joy. Now I see this was my first introduction to the “and” of TSC. Both were true.  I was terrified and excited.  I was alone and simultaneously surrounded by love.  This would be our life with Kaleigh and TSC–the presence of two seemingly opposite experiences coexisting.

image-16Kaleigh was born pink and screaming, and it has been one wild ride since.  The overwhelming joy of taking her home matched with the horror of a PICU stay for heart failure.  Over the past five years, we’ve experienced innumerable times when we were faced with two seemingly opposite and incompatible experiences vying for our attention.  It was a struggle for me to find the joy amid so much pain.  What I found is that life is in the balance. It is in the “and.”  If I let my anger at TSC overcome me, then I am blinded to the appreciation, pride, and joy of seeing Kaleigh achieve and progress.  If I succumb to the stress and fall apart after she seizes for two hours straight, I miss her tiny waking first word of “uh-oh.”  If we accept that there is no cure, then we lose hope and the drive to keep raising funds and lobbying for research.

With TSC we have lost much of the simplicity of life, yet have gained a rich complexity.  We have gained the camaraderie of others who walk this journey with us.  My view of life has widened.  When I look at others, I think of the “and.”  I wonder what is behind the anger of that not-so-nice lady in the checkout at the grocery store and I try (some days are easier than others) to offer grace.  The “and” has reverberated through our family. Our son is quick to help other children and befriend those who are often excluded.  At the same time, he has spent many a night crying after nightmares of his sister seizing. My husband and I have worked to raise awareness and fundraise for TSC research.  And we have worried and lamented over the never-ending medical bills.  No where is the “and” more apparent than in Kaleigh.  Her love for life is as palpable as the heartbreaking panic she experiences at the mention of the word doctor.  She is loss and hope personified.

Joy and pain.  Love and hate. Jubilation and sadness.  Dependence and freedom. Trust and betrayal. Jealousy and contentment. Life and death. Fight and acquiescence. These are the lesson I have been gifted. Our life with TSC is heartbreaking and beautiful. Most of all it is a balance–what we have lost AND what we have gained.

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Scars Do Not Define Us

Day 28 of Blogging for TSC Awareness
by guest blogger Katie Eliot  (Durham, England)

Hi!  I’m Katie, I’m 35 and I have TSC.  My TSC story should have begun when I was a baby, but a series of events put off my diagnosis until much later in life.

Doctors realised that there was something very wrong with my heart while my mum was in labour.  Mum told me that the delivery room was like and episode from M.A.S.H and soon after I was born I was whisked away for test after test.  It was assumed that I had aorta stenosis and I was scheduled for open heart surgery at three weeks old.  The surgeon opened me up, saw I actually had a rhabdomyoma (a heart tumour associated with TSC) and they realised that, without a heart transplant, it was unlikely that I would survive.

But survive I did!  However I wasn’t diagnosed with TSC as my paediatrician told my mum that “I was too intelligent to have tuberous sclerosis.  Unfortunately, back then mum had no idea how ridiculous that statement was!

So I went through childhood like most other kids.  At age 7, I moved to South Africa and rarely thought of my operation as a baby.  If I ever did, mum would say, “it could be worse, you could have tuberous sclerosis!”  South Africa was a wonderful place to grow up, but in 1992, our family moved back to the UK.  I did my GCSEs and passed with flying colours. However my life changed completely during my A Levels when, aged 18, I became very poorly at school.  I had many tests including a brain scan which showed the tell-tale tubers of tuberous sclerosis.  My world fell apart as for 18 years I had thought myself TSC free.

I think I was in denial for a while, but I finally got in touch with the Tuberous Sclerosis Association in my early twenties.  However, my tango with tuberous sclerosis was far from over!

Eight years ago, after many, many years of pain, surgeons realised I had a tumour in the joint between my right collarbone and sternum.

In August ’08, I underwent a 11 hour surgery to remove a section of my collarbone and graft a section of my fibula into my chest.  It was at this point that I realised I couldn’t ignore TSC any more and I went on my first TSA Outlook Weekend.  It was amazing and I instantly made life long friends.  Little did I realise at that time that one of those friends, Andy, would become the love of my life.

I went on to have five surgeries until it became clear that the grafts were never going to work properly.  It was decided that I needed to have my collarbone completely removed.  So, two weeks ago, on 14 May 2015, I went down to theatre to have it taken out.  I can honestly say that I was utterly petrified!  A few hours later, I was in recovery and I was in far less pain that I had imagined.  After a few days, I was allowed to leave hospital and go home to continue to recover.

I’m getting stronger every day and I am amazed by how little pain I’ve had.  I still have a long way to go, but I’m getting there!

But, I’m not done there!  From something so painful, was born something positive.  Some time ago, someone told me to cover my scars, in case “I offend someone!”  Well, I thought, “Stuff that!” and I decided to make it my personal  mission to help to stamp out negative body image.  Hence, Sport Your Scars was born!  I set up a Facebook page and I posted a photo of my scars.  The response was amazing!  It’s only in its infancy, but I truly believe that scars do not define us and that EVERY woman is beautiful, irrespective of her shape, size or skin tone.

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If you’d like to follow my story, you can find me on Facebook or follow my video log on YouTube here: https://www.youtube.com/channel/UCLgMCfg-HVY1xms6iBVvR8Q

Also, you can lend your support to the #SportYourScars campaign by backing our Thunderclap here: https://www.thunderclap.it/projects/26780-sport-your-scars?locale=en

Identical Twins Diagnosed With TSC

Day 27 of Blogging for TSC Awareness

by guest blogger Jobina Antochow-Piekema  (Clairmont, Alberta, Canada)

2012-11-09_16-31-07_926At our very first ultrasound we were given the great news we were expecting mono/di (identical) twins.

During a routine ultrasound at 25 weeks, we were told the twins both had cardiac rhabdomyomas and a possible diagnosis of tuberous sclerosis. At 28 weeks pregnant after fetal echos, ultrasounds and meeting with a geneticist she recommended we transfer to the USA and have an abortion as we were given the absolute worst case scenario of TSC. I immediately said no…these boys were moving, growing, and thriving inside and we knew we would take our twins however God chose to give them to us.

I was put on bed rest due to high blood pressure and stress. At 31IMG_8916297196671 weeks I was flown to Edmonton, Alberta Canada from our home in Grande Prairie, Alberta and at 32 weeks on September 23, 2012 I delivered our identical twin boys via emergency c-section. Layton Dale was born at 10:58 pm and at 10:59 PM Landon Walter arrived. After seeing them briefly they were whisked away to the NICU for evaluation. They were doing well and holding their own. Layton spent 35 days in the NICU AND Landon 41 days.

Life at home was an adjustment, but we managed until we had a follow-up cardiology appointment around 6 months of age and were told their hearts were still strong and the cardiac rhabdomyomas were not affecting their heart function. We began to breathe a little easier. The cardiologist believed the twins were in the 30th percentile that did not actually have TSC.

So life went on! We lived, we thrived! We lost my dad to cancer in March of 2014, twelve days after I married my husband. Then two months later we lost my husband’s grandma. It was an emotional rollercoaster. As things finally started to somewhat normalize, we had a follow-up with the twins’ neurologist who wanted to book them an MRI but believed they were in the clear. We left Edmonton happier than we had been in months only to have our world crash down around us ten days later.

We were camping and Landon woke up from his nap having what we assumed were seizures.  We knew right away…we hadn’t escaped TSC. We called 911 and we were life flighted to Edmonton. Watching my son cluster seize for 45 minutes at a time changes a person. After ten days in the hospital, CT scan, kidney ultrasound, opthomolgist, and MRI we were told by doctors tuberous sclerosis.  We knew…it wasn’t a surprise, but at the same time it was a shock. We asked so many questions, we cried so many tears,  we were worried about Layton. Genetics met with us to do blood work to see the test to identify the gene mutation in the twins…spontaneous TSC1 is their official diagnosis.

FB_IMG_1423273687587We were discharged not having the seizures under control, but once we had control we went almost five months seizure free. Then the seizures started coming back, but they were different. At first I doubted what I was seeing, until I looked into my precious little boys’ eyes and knew. We added another med and have seen great success.  We are almost six months seizure free.

Landon is progressing well all things considered. He has heart and brain involvement and some ash leaf spots. Layton has been cleared of any cardiac rhabdomyomas and has some ash leaf spots.

We have lots of appointments we have to travel for. We have no idea what tomorrow will bring. I am slowly starting to let the twins out of my safety bubble. And I am slowly starting to become somewhat human again. Having to grieve the loss of my dad, my husband’s grandma and my healthy children has taken a huge toll on me…all I want is to be the best I can be for my boys. We always pray for a mild case of TSC but know it is all in God’s hands.

Honestly,  some days it all feels like a bad dream. I wish I had the cure. I have met some amazing moms through the TS Mommies group on Facebook, and although we are miles apart, these woman have become my friends, my family and my go-to people! I treasure you all.

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#iamtsc #tscawareness #tscwarriors #piekematwinstscjourney #punchtscintheface

Not the Healing I Wanted, The Healing We Needed

Day 26 of Blogging for TSC Awareness

by guest blogger Katie Nguyen  (Rancho Santa Margarita, California)

When I was a teenager I would quietly slip into my sister’s bedroom at night and pray for God to heal her.  I remember the last night I did this.  The last chance I gave God to heal my little sister.

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But let me back up for a minute.  I suppose it would help to tell you about my sister first.  My sister Alicia was born with tuberous sclerosis, a disease with no known cure and an unfair cause, genetic mutation.  In her early months of life she would have up to 100 seizures a day.  Twenty-four years, two brain surgeries and uncountable medications and attempts at managing the side effects of her illness, seizures are few and far between.  She is nonverbal but communicates her needs well, and despite having 1/2 a brain, she has mobility on both sides of her body, though it is limited and she requires regular physical therapy.  I am not going to share more about the specifics of her disease, I am going to share about the side effects.  Not Alicia’s physical or developmental side effects but the effects her disease has had on our family.

In the foreword of The Hardest Peace by Kara Tippetts, Joni Eareckson Tada writes:

Everyone has a story.  While sitting in my wheelchair for more than four decades, I’ve heard a lot of heart wrenching stories poured out in personal blogs, articles, books or face-to-face.  Sometimes, though, people who suffer become so meshed in the details they hardly see the forest through the trees-for them, trying circumstances become an inconvenient stump or fallen log that only blocks their path to happiness. The latest medical report and PET scan are the trees of their day.  They cannot see, let alone convey, the larger story.

It is a honed art, as well as a spiritual discipline, to be able to step back from the details and see how our own stories are woven into a much bigger one…God’s story.

In the early years of Alicia’s life our family lived among the trees.  Alicia’s illness, paired with another major family tragedy, sent our family whirling into surviving and grappling for reasoning.  We were on the horizon of a new “normal” and we were all learning to embrace it in our own way.

When Alicia was an infant I remember holding her while my step-mom went to make a bottle in the other room.  A feeling of panic would come over me as she started spasming in my arms.

“She’s having another seizure,” I would exclaim.

An exasperated voice would ring back, “Just hold her.  I’m almost done.”

The reality set in for both of us.  A mother that could do nothing to stop her seizing infant.  A sister feeling helpless as she watched her sister suffer.  The rawness of not knowing how to support each other besides just forcing each other to be present in the hard moments became our “new normal”.

But I suppose I never did completely accept the hand that God dealt.  I felt it was His job to heal Alicia.  His duty to make things right.  We were a good family.  A church going, God loving family and He doesn’t let this sort of thing happen to people He loves, right?  So I prayed.  And prayed.  I prayed at Church.  I prayed every time she had a seizure.  I prayed at night quietly by myself at her bedside.  And then after that last night of praying for healing, that night I gave God His last chance to heal her.  I stopped praying for healing.

I lived for years in anger and frustration with God.  But slowly I came to realize the bigger picture.  That bigger picture comes through the actions and example of my parents.  The bigger picture comes into focus through the memories of family vacations done just like any other family, in annual ski trips with a modified ski seat for Alicia, in holidays that will always have childhood magic because of Alicia’s developmental stage and my parents willingness to meet her right where she is.  The bigger picture pieces together with adult sons (my brothers) willing to drop anything to help, even if that means carrying 120 pound Alicia in her wheelchair 40 feet through the sand so she can see the ocean and giggle at the wind in her hair.  The bigger picture makes sense when we see that through the years we have all come together in accepting our “new normal” and chose to love the best we could.

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It’s hard for me to think that a God so great would allow such suffering for one little girl, a big girl now.  It’s also hard for me to fathom the joy and kindness and acceptance and love He has brought out of the rest of us as a result of this girl’s suffering.   It’s all a tough thing to accept and it’s impossible to make sense of.

Perhaps the healing I prayed for didn’t happen how I had wanted.  Alicia is not healed in the traditional sense, but she is happy and her suffering is minimal (relatively speaking).  She is loved, so loved.  Her disabilities have helped us to discover our own abilities.  She has inspired a family to do hard things because she has only ever known hard things. She has helped us to step outside of ourselves and step into loving with no expectation of getting anything in return.  She has molded us, encouraged us, and inspired us to be better people.  It’s not the healing I prayed for, but maybe it’s the healing God intended to bring to our family.  Maybe its the beauty he intended for us to discover out of the brokenness Alicia was born into.

By Katie Nguyen, blessed to be sister to Alicia Hardie.

A Glimpse into the Journal of a TSC Mom

Day 23 of Blogging for TSC Awareness

by guest blogger Kaci Kennedy  (Woodward, Iowa)

A glimpse of my last two days thanks to TSC.

May 17th, 2015. In to do mode. Pack the van. Must hydrate Porter. Push Pedialyte. He will gladly drink the sugary drink all day long. Drive four hours to our nearest TSC clinic. Try to check into hotel. Realize your ID is not in your wallet. Hold back tears but minorly freak out you may need to drive all the way back home. Go back out in the rain and search the van. It’s found! Check into hotel. Try to sleep with a 22 month old and his little 5 month old sister.

May 18th
6:15am Wake up all, get dressed, drive to yearly MRI.

image1-37:30am check in. Porter is historically a hard poke to get in his IV. The MRI team is ready for that. Nitrous Oxide. A special team to put his IV in. They get it the first time. Praise the Lord! (Last time it took over two hours with many many different interventions.)

8:30am He goes back as they put the medicine in his IV, his IV slips. Must put in another one. Porter screams and screams and screams. Finally he’s asleep.

8:30-10:30am I wait. Little sister sleeps. I’m typically as far from an anxious person as possible. Easy going, go with the flow. People with anxiety are a puzzle to me. Except during these two hours, anxiety makes sense. Will he have a SEGA? What will his kidneys look like? Did the fluid around the brain increase? I have a fear they will find something major and we will have to stay at the hospital. Again crazy thoughts. So highly unlikely but with tsc you never know. My thoughts are attacked.

Continue to wait…

10:35am  My guy is back. Sleeping still.

11:00am slowly he awakes in my arms. He’s ready to walk and wants to run away, but his body says not quite yet.

11:30am We get the okay to go get lunch. (Let me tell you the talent of a mom to feed herself, a 22 month old and breastfeed a five month old simultaneously)

1:00pm We go to the TSC clinic to meet with his neurologist. He shows off his recent tricks. He walks, he throws balls, he kicks balls. He says his one word often with much enthusiasm…GO! The dr asks where is the ball and he delightfully shows him he knows where that is. Porter plays and we all sit in amazement of the huge strides of development he has made since our last visit.

I get out my list of questions. The doctor and nurse are wonderful in answering each. Are those facial angiofibromas? Is this forehead plaque? What treatment do they recommend? His next status seizure what should we do? Recommendations on how we should minimize risk? What about eye exams and Sabril (my nemesis)?

We get to the MRI…no segas…my heart can breathe again. (Exactly it’s pretty spectacular that my heart can do that because it should beat but in cloud nine it breathes life.) No major growth and kidneys look overall good.

2:30pm Start the four hour drive home. Contemplate a stop at IKEA
but the two crying babes dissuade me quickly. Pray that we won’t be back for a year. Pray that the seizures stay at bay. Pray that no strange behaviors bring us back in Porter’s case extreme sleepiness. Thank God for the joy he has placed in Porter.

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