Category Archives: Tuberous Sclerosis

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.

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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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A Dad’s Perspective

Day 22 of Blogging for TSC Awareness
by Kelsey and Justin Hudson  (Moon, Pennsylvania)

Justin #1Many mother’s experience TSC on a personal level daily. They’re home with their child that they’re terrified to put in daycare or attending appointments that are almost daily. But then there’s husbands, whom are hard at work. Always making sure there’s a roof over their families head, food on the table, and the health insurance that their jobs bring in is a sheer blessing.

Last year I wrote our story, “Wyatt’s story”, but this year I wanted to do something different.  I decided to do a Q&A with my husband and look at TSC from a dad’s perspective.

1) What went through your head when you first heard the doctors tell us Wyatt had TSC?

“I had no idea what it was or what it meant. I knew he had tumors in his heart and I was scared for him.”

 

2) As a working dad, what has been the hardest part of your journey Justin #2with TSC?

“Being at work when you have to take Wyatt to the hospital and appointments all the time. I wish I could be there for him. And I wish you didn’t have to do it alone.”

 

3) What is your biggest fear with TSC?

“That Wyatt will always struggle with things for the rest of his life and that I can’t fix it.”

 

4) If a child was newly diagnosed and their father reached out to you what would you tell them?

“Find the best hospital to take them to and do your research.”

 

5) What has been the happiest moment you remember with JJ and Wyatt since Wyatt’s diagnosis?

“Seeing them play together and smile with each other.”

Justin #3

For the first time in my life, things were not in my control.

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Day 21 of Blogging for TSC Awareness

by guest blogger Debdatta Bhattacharya  (Portland, Oregon)

I had always been in control of my life. I faced challenges but I knew if I work hard I will get over them. I was born in India into a loving family and had an amazing childhood. After I completed college I wanted to come to the U.S.A. for pursuing my PhD in physics. My parents were not happy with my decision because it was so far away from home. But I was adamant; it was my life right ? After a couple of years of coming to U.S.A, I married my college sweetheart. Six years later, both of us got well paying jobs at Intel in Portland, OR. Life was good. Finally it was time to sit back and relax and enjoy all those years of hard work at grad school. In 2010, our first born, our daughter Bartika arrived in our life. Oh what a joyful time that was, the exhausting but delightful days of nurturing her and caring for her, the ecstatic feeling of bringing new life into this world.

In 2013, I got pregnant with my second child. We found out it was going to be a boy. Everyone was excited, “oh you will have one of each”. We personally didn’t care; we just wanted a healthy child. I started planning, like I have for all other major events of my life. We sorted through all our daughter’s toys, separating infant toys from toddler toys, packed them in separate bags. I hired someone to help me out in the first few weeks after baby #2 arrived. I can’t believe it now; I even almost planned the weekly menu with her so that there would be one less thing to do.

On my 37th week of my pregnancy, we went for a routine ultrasound. I was excited to see him one last time before actually holding him in my arms. After the ultrasound, my doctor came in the room and told us “there is something wrong with the baby’s heart.” Those words and her voice still ring in my ears. We were quickly packed off to be seen by a neonatalist. He had no idea what was going on other than the fact that my baby had unusual thickening in the wall of his heart. We were told that there is no guarantee he will make it out of my womb. Such cruel words told with such heart wrenching indifference. I felt like someone just stabbed me in my chest. My child was still kicking inside me; how could any of this be true? Later that night, we got a call from a pediatric cardiologist. He said it looks like your baby has “tuberous sclerosis” (I first thought he said tuberculosis). That was the first time we had heard this term. The doctors wanted to do a c-section, but they wanted to wait a few more days to give him a chance to grow a little bigger. The little signs around the house that showed our readiness to welcome the new baby came back to bite us. The new baby clothes delivered at our door step, the unopened car seat, the toys, the laid out crib seemed to mock us. For the first time in my life, things were not in my control.

The inevitable question of “why me” kept me awake at night. We were told “law of nature” by the doctors. But we had been good to nature, recycling, reusing, installing solar panels, driving a Prius, you name it, then why us? We have given to charity, been reasonably polite with everyone, been sincere and honest in our job, then why was our dream of a perfect life being shattered so ruthlessly. I haven’t found any answers yet. But with time I have realized that most people are basically good and nobody deserves to go through this pain. But life happens and other than gracefully accepting it we don’t really have much of a choice.

blog-2We had a faint idea that TSC could affect our child in multiple ways but at that point of time we were concentrating on his heart tumors. We went to Seattle Children’s Hospital so that he had all the heart surgery options if he needed any. My beautiful boy Arij, was born on 7th April, 2014. Miraculously he did not need any surgery or medication. All the doctors had told otherwise but he proved them wrong. It was overwhelming because my arms were empty and my baby was in cardiac ICU (just in case) and a bunch of MRIs and ultrasounds were being performed on him. I had about 48 hours of absolute happiness till the doctors came back and told us he had tumors in his brain. For the first time after his diagnosis, I opened the internet and started reading about TSC. I had intentionally stayed off because before his delivery there was nothing much to do with all that information anyway. I saw terms like, seizures, developmental delay, mental retardation, autism, mentioned in a matter of fact way all across the internet. My heart sank and I cried and cried. Was I not allowed to enjoy even a few hours of my baby’s presence before being engulfed in worries again? While I recovered from my c-section, I tried to make sense of all this information. We came back home after staying for 12 days in the hospital. The first night we spent at our home as a family will always be etched in my memory. It was such a happy feeling to be home as a family for the first time, no hospital smell, no monitors, no doctors.

My husband spent the next few weeks in doing extensive research on infantile spasms and what it looked like. We had realized that we can’t control everything but we will control whatever little we can. We installed a motion detecting video camera over our son’s crib so that we could detect the first signs of infantile spasms. We prayed that we never detect anything but unfortunately around two months of age he showed some early symptoms of infantile spasms. He was started on sabril and everything was under control again. I took time off from work and took care of him. A bunch of therapy sessions started around 4 months. He was doing wonderfully till he was about nine months. That is the time when new seizure activity started. More tears, more heartbreak and more panic followed. He started falling back developmentally. The local neurologist was unable to control his seizures. Arij being his sweet self, of course just smiled through this all. We finally decided to take him to Cincinnati TSC clinic. I am so glad that we took that decision. The medicines were changed and he was put on new medicine. It took a while for him to react positively to the medicines. Patience is not my forte but life taught me to be patient. He is doing much better now but he still has some seizure activity. He is still delayed developmentally but he is making steady progress. We celebrate all his milestones. We have learnt to find happiness in the smallest of moments. We are going to start him on afinitor soon with the hope that it will control the remaining seizure activities that he is having.

blog-4It is still difficult for me write down the positive aspects of this experience. I have lived most of my life without TSC and I was quite happy. TSC has taught me a lot of things but I wouldn’t have minded leading the rest of my life without these learnings 🙂 One of the key things is of course that I have to let go of things and situations and I can’t control everything. The other is patience. I keep working with my son on a certain skill, day after day without seeing the desired result. But when I get there, I can’t describe the satisfaction and sense of achievement that I get. I also got to know the true color of many of my so called friends. Some have abruptly discontinued all contacts with me and some have stepped up to give me emotional support. We will continue fighting this battle with Arij. Amidst all these uncertainties, there is one certainty; he will always be surrounded by unconditional love.

In Memory of Dee Triemer

I’m taking a break today from the Blogging for TSC Awareness project. Thank you so much to everyone who has sent something in the last few days. I promise they will be posted soon.

Yesterday we all received the shocking news of Dee’s passing. Even knowing how serious her diagnosis of stage 4 lung cancer was, I still never dreamed it would happen so quickly. I had told her I’d bring dinner as soon as we got rid of the sicknesses that have been circulating our house for the last month and half. I never made it.

Dee was an incredible advocate for TSC and her daughter Ashley, even taking a position at the TS Alliance, though she was able to stay here in Georgia.

She had a great sense of humor, even in the face of cancer and chemotherapy.

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It was just March that we were in DC for the March on the Hill and she felt bad she couldn’t make it to the offices with us because of the back pain; the cause was not yet diagnosed. She was fretting over the fact that she had a formal event coming up and she would have to wear flats. “I can’t wear flats to a formal event! I love my heels!”

Dee, I hope you are wearing the most stylish, glittery 4.5-inch heels anyone ever saw.

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Grateful

Day 19 of Blogging for TSC Awareness

by Shannon Hanks-Grandia  (Riverside, California)

DSC_0244Twelve years ago I first heard the words tuberous sclerosis complex and my life was forever changed. I do not have TSC, but my husband and three children do, Rob (38 years old), Rylee (14 years old), Jake (11 years old) and Luke (8 years old). Each is unique in their manifestations and levels of severity. As a spouse and a mom, I have been to countless doctor appointments, lived through numerous hospitalizations, watched my son fight for his life, attempted medication after medication and a diet to try and control seizures, battled and continue to battle the school district, had my child scratch, bite and yank out my hair in an attempt to communicate and felt defeated more than I care to admit. But through it all I have been surrounded by an incredible family, friends and a community that supports with love and understanding.

I did not ask for this journey, and to say that I would not change a thing would be a lie.  If given the choice, I would NEVER choose this road. Yet, there are many things in life that we do not ask for, but life goes on. Our job is to find the joy, hope, strength and love to make a positive impact not only for those we love, but for others traveling a similar journey.

DSC_0208This last year my husband and I have been given the opportunity to be Adult Regional Coordinators with the TS Alliance. This is a position that simply allows us to try and support the adult community. In our attempt to support others, we have been given so much. It would be impossible to name the many extraordinary adults that we have met and the profound impact they have made on me as a spouse and a mother. I love my husband with all that is in me, and although his manifestations tend to be more on the mild side, TSC is there. To watch him speak to and connect with other adults is simply beautiful (not sure how else to describe it).

Then there is the impact these incredible individuals have made on DSC_0213
me as a mother. The future is uncertain, this disorder is unpredictable, yet our community is strong and filled with fight. I have met young women that will one day be my daughter. I hear about their trials and their triumphs and they teach me how I can help my daughter navigate her own TSC journey. I see young men whose manifestations are medically and behaviorally severe. Watching their smiles and joy of life, despite the obstacles and meeting their caregivers and how they have traveled this journey is empowering.

DSC_0222Over these last 12 years I have come to terms that my children will never be “normal,” yet that does not mean that I do not still mourn for what my children will miss out on life because of TSC. With that being said, it does not mean that I cannot celebrate the life that we have been given. I have a unique privilege of watching my husband and children make a positive impact each and every day. I see the people that are touched by their smiles and strength. And most importantly, I see them show the world that being different can be amazing!

Despite the obstacles there is so much to be grateful for. I am grateful that those of us traveling this road have the privilege of learning to celebrate the little details of life that most overlook. I am grateful for the amazing man I married and the three extraordinary children that he gave me. I am grateful for those that have traveled this journey before us and are helping to pave the way for a brighter future. I am grateful for the Alliance and the individuals that have committed their lives to the fight, and one day the cure, of TSC. I am grateful for daily smiles and the understanding and love of those around me. I am grateful God allowed me to be their mom. Simply said, I am grateful for life!

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TSC and Me

Day 16 of Blogging for TSC Awareness
by Victoria Newberry  (Texas)
IMG_1290As I prepare myself to write this, I thought about how to represent my son and I realized that I can’t do it. I can’t write for my son because deep down I am still hoping that he will be able to do it on his own one day and I don’t want to take that chance away from him. So this story will be about me, about a first time mother who came face to face with this unknown called TSC.
We waited a few years before deciding to have a child. As the youngest, I’ve never been around pregnancy or babies. Needless to say, I was nervous. I joined a pregnancy website, read anything and every thing, went to pregnancy classes; I even interviewed doctors to be my son’s pediatrician. When he was finally in my arms, it was the happiest and the scariest moment in my life. I was, and still am, responsible for this tiny human being. I was a mother. The pregnancy website continued to be an infant “guide”. When they should be doing this or that, what you should be doing this day or that day, what exercises to do, what to feed, everything was planned. Then, he developed severe eczema at 2.5 months and I felt my world shattered. I did everything right, didn’t I? Did I use the right soap? Detergent? Did I let his skin get too dry? I kept on blaming myself, I got angry a lot, I was frustrated. Looking back, I think this period prepared me to face what was about to happen in a few months. My control-freak self would’ve lost her mind had it not been for this “transition period”.
March 2014, we got our diagnosis, my son has a genetic disorder 20140207_125126called TSC, it’s incurable. I remembered feeling numb, my head started organizing my thoughts. That’s how I cope: I analyze, I make plans, I figure it out. I asked for an explanation on what we would be expecting, how wide is the spectrum, what’s our game plan, what do I need to do in the immediate future. I had to get into action cause I knew if I stopped to think for a second, I would break down. I allowed myself to cry one time when it was just me and my husband, our son asleep in the metallic crib. I started reading about the disorder, gathering all the information I could to prepare me for what was to come. Joined facebook groups, talked with other parents in the same boat, trying to somehow convince myself that it will work out.
One year later, I’m a changed person. We never got seizure control, except for a few weeks earlier this year, after going through 6 medicines in different combinations, and I’m okay. My son is severely delayed and we recently had to put in a feeding tube because it was not safe for him to eat by mouth, and I’m okay. My days are filled with therapies, doctor appointments, keeping a journal (seizures, sleep, feeding, diaper count, body temperature, etc.), and working with my son at home. Guess all the skills I learned being an admin paid off, I have excel sheets full of tables and charts. My smartphone calendar became indispensable. I learned to let go of things I can’t control, and to maximize my efforts on things I can do something about.
I learned to not let fear of the unknown conquer me. Sure I get stressed out every now and then, and I feel like I sometimes I can’t breath, but then I gather myself together and put a smile on my face. They say a smile goes both ways, sometimes it comes from the heart and other times it warms the heart. I smile cause my son needs me, I smile cause my husband deserves support just like the support he’s given me. I refuse to drag them down in my sorrow and frustration, so I learned to let go. I learned to fight the battles that can be fought, and not worry about those that are not here yet. It doesn’t mean I don’t prepare myself for them, for the chance that my son might develop a new type of seizure one day or that he may never be verbal, but we’ll cross that bridge when we get there. I learned to trust more in my support system, to listen to their counsel, to be open to suggestions, to accept help. I am alone, yet I’m not lonely in this journey.
IMG_0879TSC made me a better stronger person. I just wish that it didn’t have to be at the expense of my son’s health. I am hopeful still that he has a chance at “normalcy,” but I’m prepared to face whatever comes our way. After all, what is “normal?” Merriam-Webster defines it as “usual or ordinary.” Life with my son is our “normal” and I wouldn’t have it any other way (well, that’s a lie, I would want him to not have TSC). You may be in our lives, TSC, but you do not define who we are!