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Guest Bloggers For TSC Awareness Month, Tuberous Sclerosis

I like to think that God has given me other gifts to make up for me having such a rare disease.

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Second Annual “Blogging for TSC Awareness Month” Day 23

by guest blogger Kate Carter  (Ann Arbor, Michigan)

297781_1483085518122_1098623929_nI was diagnosed with tuberous sclerosis back when I was 2 ½ years old. I am now approaching my 22nd birthday. So, I have lived with TSC as long as I can remember but I haven’t let that stop me. As far as we know there is no genetic link so it’s just a mutation that happened to pick me. I have seen many things through my times at hospitals for annual visits. I remember being in one of the early MRI machines and watching the improvements in research and other medical developments. Sure, things got tough at times but I always maintained a positive attitude. I am very luck to have a “mild” case of Tuberous Sclerosis but still very affected. If it weren’t for such an active lifestyle and healthy diet, I wouldn’t be this “well” off. But through it all, there are still challenges. In my 8th grade year I suffered a grand mal seizure that lasted 90 minutes. I came away with no brain damage but still managed to get the flu. Somewhere up there someone is looking out for me. I haven’t had a specifically labeled seizure event since then. I have things that we are calling “spells” because they aren’t sure. It’s a mix of anxiety attacks and seizures but not bad enough to make me unconscious. It is very frustrating to not know what these things are and know how to treat them. I often think though, my life could be so much worse and I know all us TSC suffers all have things we 1450206_10201859552184922_1568234232_ndon’t understand. The world doesn’t understand. I hope that continues to change.

Of all the challenges, my learning disability has been the most difficult thing for me in terms of this disease. Some days I would remember things and
others I would draw a complete blank. I can’t thank my teachers, professors, coaches, and parents for helping me thus far in life. Since I just graduated from college, it is time to begin the next chapter in life and to learn to live on my own. Throughout my life I have never felt like I wasn’t “normal.” I like to think that God has given me other gifts to make up for me having such a rare disease. I have excelled athletically. In high school I was nationally ranked in the 800m by my senior year and all-American on relay teams. All of that lead to the wonderful scholarship to my respected university, my coach had no idea what my disease was but took a chance on me and I can’t thank her enough. Just because I 31393_1494934937388_733010_nhave a certain disease doesn’t mean I can’t do things like my peers. My parents have been by my side from day 1 but have to slowly pull back because I’m aging and have to take on my own responsibilities. I am both excited and nervous for the leeway. Wondering what will happen next, but I figure if I’ve made it this far. I’m sure I’ll be just fine.

To all those that are younger than me and or parents, I suggest if able get involved in sports. That has kept me healthy in more ways then one and always looks at life positively. Sure times will get tough and you will have breakdowns but just know there is always a tomorrow and another challenge to master. Always surprise. Let’s make the world aware of us.

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Guest Bloggers For TSC Awareness Month, Parenting, Tuberous Sclerosis

From Reflux to TSC

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Second Annual “Blogging for TSC Awareness Month” Day 20

by guest blogger Melissa Marino  (New Orleans, Louisiana)

photo-4-1Our story began in November of 2012 when we found out that we were expecting our first child.  My entire pregnancy was a breeze, no morning sickness and no complications.  Every ultrasound was absolutely perfect and we could not wait for our bundle of joy to arrive.  Carter was born on July 11, 2013 weighing 6 pounds and 13 ounces.  He was the most beautiful thing that I ever laid eyes on, with his perfect bald head and big chubby cheeks.  The first two months were great and he was the happiest, most laid back little boy in the world.  In September, shortly after turning 2 months, I began to notice that something was not right with him.  He would squint his eyes and his right arm would raise into the air.  This happened in clusters several times a day.  I immediately took him to the pediatrician and she referred me to see a neurologist at our local hospital.  I called that day to schedule an appointment, explaining to them that I believe my two month old is having some sort of seizures.  I was given an appointment four weeks away.  Seriously??  I am telling you that my baby is having seizures and you politely say that you can fit him into the schedule in four weeks???  I was devastated, so I started doing research using google and the more I read, the more anxious I got.

After about a week of him having these episodes, I finally had enough so we headed to the emergency room.  The first thing they told me was not to worry, it is probably just reflux.  I was not settling for that answer, so I demanded that they watch the videos and check him out anyway.  Finally they ordered an EEG, and sure enough the EEG showed that he was indeed having seizures along with an abnormal heart rhythm.  That evening, cardiology came in and told me that Carter has Wolff Parkinson White Syndrome. After a couple days in the hospital, they finally took him down for an MRI.  The next morning, the results were in and his MRI was normal.  The doctor explained that since they could not find a cause for his seizures, there would be a good chance he would grow out of them.  Carter was started on Phenobarbital, which did not work.  We were sent home on Keppra and Topamax, but the episodes continued.  We went to our cardiology consult where they did an echo of his heart and everything came back fine.  The WPW wasn’t causing any photo-3-1symptoms and his heart structure was perfect.  I took him back and forth to the hospital for constant EEGs and everyday his seizures were only getting worse.  Come October, we were back in the ER.  The weird arm movements finally stopped, but now he was having full tonic clonic seizures.  I just could not understand what was happening to my baby.  His blood work was always normal and his MRI was normal, so again they had no answers for me.  I finally agreed to let them do a lumbar puncture on him — at this point we were reaching for any answers.  Yet again, another normal test result came back.  His tonic clonic seizures continued to increase every day and Vimpat was added, which of course failed.  They finally decided to give him high dose steroids through his IV.  He would get a couple rounds of Solumedrol and we would take him home on a Prednisone taper.  This combination would decrease his seizures by about 80%, but they would always return within two months.

He was developing and reaching his milestones through all of this, but at a much slower pace than normal.  No matter how hard things got, Carter always kept a smile on his face.  After failing all these medications, Carter was started on the Ketogenic Diet. Unfortunately, by the third day of the Ketogenic Diet, his seizures had tripled.  He was having 40-50 tonic clonic seizures a day, so they immediately discontinued the diet.  Onfi was now added on top of everything else.  With every failed medication, my heart broke even more and I finally started to lose hope.  So much for him outgrowing these seizures right?  The neurologist decided it was time to do a genetic test, but she explained that she really did not expect to find anything.  She just wanted to check everything before putting him through a muscle biopsy.  She explained that they were looking for Epileptic Encephalopathies, but Carter did not seem to have any of them.  Those six weeks were the longest weeks of my entire life.  While we were waiting for the results to come back, Carter again developed a new type of seizure.  The tonic clonic seizures had pretty much disappeared thanks to the Onfi, but along came the head drops and spasms.  So now Banzel was added to his long list of medications.

photo-180In March of 2014, he was 8 months old and we finally received a diagnosis of Tuberous Sclerosis.  My heart was shattered; I was confused and angry.  How could six months go by and not a single person figure this out?!?!  Well here is the reason, his heart is normal and as of now, his MRI is normal.  He has no signs of TSC except the horrible seizures that do not respond to medication.  He has had two scans of his kidneys, which both came back normal.  Since he was a little older and we now had a diagnosis, another MRI was ordered.  The results came back within a couple days and we were once again normal.   Just recently, he started to develop white spots on his skin.  Anyways, back to the dreadful journey.  So now at this point, he is on seven medications including 250mg of Sabril that he just started.  The head drops are getting worse, the spasms are increasing and my happy baby is now miserable all the time.  So again, I take him back to the emergency room and they give him IV Solumedrol to slow the seizures down.  The steroids always seemed to be a miracle drug, but it did not work for these new seizures.  The seizures were getting worse, his entire personality was gone and all we could do was cry together.  I asked on several occasions if he was having Infantile Spasms, but I was quickly assured that it was not IS.  I went back and forth between doctors and the insurance company trying to get him out of state to a TS clinic.  My everyday life consisted of waking up and arguing with someone all day, which only added to the stress of taking care of a very sick baby.

The reason why I decided to tell our story is because I want to pay it forward.  Only four weeks into his diagnosis, I decided to reach out and ask for help through a support group on Facebook.   I knew he needed to be at a TS clinic and I was fighting everyday to save my baby, but I was also losing hope at the same time.  I wanted to know what was so different about a TS clinic?  Can they really help him?  If he had already tried every medication and failed the ketogenic diet, what else could they do?  A very special lady reached out to me and convinced me to get him to Cincinnati right away.  How was I going to do this?  I have been fighting my insurance over a referral for weeks now!  She put in a call for me and within 24 hours, I received the call from Cincinnati.  I could not believe what I was hearing when they told me “Just get him out here and we can handle the referral from here.”   I started a fundraiser and within 24 hours, we raised enough money to cover the very expensive last minute flights.  It could not have happened at a better time because two days later, Carter’s condition took a turn for the worse.  We changed our flights right away and the next day, we were on a plane heading to get my baby the help he needed.  When we arrived, Carter had his first 24 hour VEEG and his medications were changed immediately.  Just when we thought things couldn’t get any worse, we were informed that Carter did in fact have Infantile Spasms.  Being a new TSC mom and having someone keep telling me that it’s not, I eventually started to believe it.  Well at least a part of me did, but my mommy instincts still said that something was not right.  I suddenly felt relieved that someone had an answer and we were finally in the right hands.  All of my hard work, photo-2-1along with the help of some pretty amazing people, had finally paid off.   It has only been two weeks since all of this happened and his seizures are still not fully controlled.  He still has his good days and bad days, but we work together everyday by phone to coordinate his care.  Since being home from Cincinnati,  he has started to smile again and for that alone, we are very thankful.  The point of my story is, sometimes you have to fight for what you believe and stand up for these innocent babies who can’t defend themselves.  Always trust your mommy instincts and follow your heart.  If you feel that something isn’t right with your baby, it probably isn’t.  Through this journey, I have learned that we are not alone and there are still some pretty amazing people in this world willing to help.  Without the support of my friends and family, I would have fallen apart by now.  I have also gained an entire new family over the past six weeks, my TS family, and their encouragement and inspiration is what helps me through the bad days.  It takes 100% of a person’s time to care for these unique babies, but somehow everyone manages to still help each other.

Not knowing what the future will hold for my baby is probably the hardest part of this journey.  I walk on egg shells each day just waiting for the next catastrophe to come along.  Of course, I hope and pray every single day that my Carter will stay strong and fight his way through this.  But there is one thing that I do know, no matter what happens, I can look at myself in the mirror and know that I did everything that I could to help him.  I gave up everything just to spend every moment with him, I struggled to get him the best care available and most of all, I make sure that he knows just how much I love him!

 

Guest Bloggers For TSC Awareness Month, Parenting, Tuberous Sclerosis

Joy Times Four

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Second Annual “Blogging for TSC Awareness Month” Day 19

by guest blogger Courtney Bailey  

1236820_10202010593452499_960261714_nMay 23, 2013… the day that my got heart broken. Two weeks prior we had found out that we were expecting our fourth boy, yes four boys! The ultrasound went well but he was lying in a position they couldn’t get any good heart pictures. We went back to get some pictures of his heart. I knew something was wrong when she kept measuring and remeasuring and taking picture after picture. My husband, Phil , had to return to work. I sat alone in the waiting room until every last person was gone. When they finally called me back, a complete stranger told me that our son had some spots on his heart. She assured me it would be nothing and I just needed to get another ultrasound to be sure. Nothing to worry about she said. I knew differently.  On June 6, we learned that our precious son likely had Tuberous Sclerosis.  The tiny two white spots on his heart had turned into numerous large tumors, including a very large tumor on the outside of his heart. It was making his heart beat faster than usual and he was developing fluid around his heart. We made weekly trips to Iowa City for appointments, ultrasounds and echocardiograms.  Seventeen straight weeks of going for testing. I look back now and see all the trips as a blessing. I got to spend a lot of one-on-one time with my husband.  We grew closer instead of apart.

I was induced a few days early and my wish that I would get to hold him came true. I held him for just a moment and he was whisked away to the high-level NICU.  When they finally wheeled me to see Lelan, my husband mentioned that they were looking at a weird skin mark on his belly and that moment I knew for sure that he had Tuberous Sclerosis. He went through a multitude of tests. One morning a new doctor we had never seen came in and told us that his MRI showed multiple brain tumors. My heart was literally shattered in my chest; it was the worst moment in my life thus far. We got to take him home that day but I felt like my life was moving in slow motion. We still had three happy rambunctious boys to care for. I felt like I was constantly staring at10155615_10203637356680563_1669194936_n Lelan to see if he was having a seizure. Every twitch, jerk, wiggle — all over analyzed. It was making me insane. I was crying myself to sleep each night. My husband said I would even cry in my sleep. The constant worry, the heartache, the what-ifs were wearing me away.  I decided to change my view; there was nothing that I could do to protect Lelan. I had to just give up and let God protect him. God loves Lelan more than I ever could. We made many more weekly trips, tests, and procedures. The heart tumors they said would shrink weren’t shrinking until one day they had just shrunk drastically. The more I tried to let go and let God handle it, the more I was able to enjoy Lelan and the other boys, ages 7, 3, and 1, and not just worry about what was going to happen to Lelan and  this stupid disease that had stormed into our lives without a warning. I was back to enjoying my kids, my husband and choosing to be joyful and live with purpose.

Our story is better than a lot of other TS kids; being a TS mom can be a VERY lonely place. People don’t understand unless they are in the shoes. Lelan is 8 months now and he crawls and pulls himself up. He babbles Mama and Dada and he feeds himself. We are fully aware that at any moment he could start having seizures and our lives could change drastically.. But for now we are completely living in the moment.  We read that extra bedtime story, we sometimes have ice cream for breakfast, and we see each and every day as such a gift and blessing. I lay my head down every night and thank God that Lelan didn’t have any seizures. We use Frankincense essential oil on Lelan every day in hopes to shrink his tumors. He still has heart tumors and brain tumors, and he also has lost the pigment in spots on his legs and stomach. I have done a lot of research where frankincense can help or prevent seizures. I’m clinging to the hope that it will work for us. You can email me at Baileycp731@live.com if you are interested in more info on essential oils. We are blessed, we are lucky, and we are so very loved. My advice is to keep talking, don’t hold in the worry — it will eat you up. TS is a mean and cruel disease that is different in every single person. The what-ifs will take over your life if you let it. We choose JOY at the Bailey house.

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Guest Bloggers For TSC Awareness Month, Parenting, Tuberous Sclerosis

Thank you to all of you, my “virtual” friends and TSC family.

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Second Annual “Blogging for TSC Awareness Month” Day 18

by guest blogger Sarah Burton  (Highland, California)

IMG_3514 (1)Our journey with TSC began on November 3, 2012.  When Jackson was 3 months old, he had his first seizure.  His
eyes rolled back and his body fell limp.  I just remember holding him up and crying to my husband, “What’s wrong with him!”  The pediatrician said it didn’t sound like a seizure and to monitor him at home.  The next afternoon he had another episode, so went immediately went to the ER.  They admitted him right away, and he had four more seizures that night.  He was pumped full of Phenobarb, which quickly controlled them.  After a normal EEG, an MRI was ordered and we were diagnosed with Tuberous Sclerosis Complex.

We experienced all the normal reactions…disbelief, anger, sadness, confusion. Those feelings did not go away for a long time, and some still linger.  After four days in the hospital, I came home with Jackson.  I walked into our bedroom, looked at his bassinette, his baby calendar, and felt an immediate sense of loss.  I was lingering in this dark fog between life before the diagnosis and life after the diagnosis.  Nothing of Jackson’s looked real or familiar.
It was a horrible feeling.

As I was attempting to deal with this news, I was comforted by my amazing family and friends.  Everyone wanted to help, to reach out, and to be there for us in any way they could. But it wasn’t enough.  No one would ever begin to know what I was going through, what I was feeling.  Our lives were forever changed overnight, and I needed to find a way to cope.  I needed to stop looking at my son and seeing only the disease. I needed to stop looking online where all I seemed to come across was devastating information.  I needed to find someone who understood my pain.

About three months in, I found Inspire.  I starting reading other people’s stories, other people’s struggles with TSC, and it brought me closer to a human photo (6)connection that I desperately needed.  I reached out to a few people, asked some questions, and it felt good.  But it wasn’t enough.  I still felt alone, like all I could think about was the disease, and Jackson’s future.

I had Facebook, but never used it for anything relevant.  I decided to try and search TSC.  And I found Becky and Connor. A mother and her son with TSC (who reminded me so much of my little Jackson).  Her stories of the struggles and triumphs with TSC had a funny, sarcastic twist which brought some much needed humor into my world. It was a reality that I could relate to. That’s what I needed.  I needed someone to walk along side of during this journey, someone who understands.  I had plenty of people in my life who sympathized with me; I needed someone who could empathize.  I continued to search out TSC on Facebook, joined the TS Alliance group, and connected with more and more people.  I found an amazing group of women, viewed pictures of their beautiful families, and read their stories.  I saw the faces behind the disease and finally began to accept that this was our new normal.  Two of the pieces of advice I was given: “do not let TS define your child” and “one day at a time” still guide my daily attitude.

IMG_2320 (1)When my first born Isaac was two years old, running around and getting into everything, I must have expressed exhaustion to my mother.  She said, “Honey, you want your child to be getting into everything, that’s what they are supposed to do.” She then told me about her friend who had a special needs child who was not “getting into things.” I think about that conversation all the time.

Jackson is now 21 months old.  He is mobile, but not walking independently yet.  He can crawl, pull up and cruise really well.  He is finding his balance, so we hope to be walking soon!  We had seizure freedom for seven months, but this past November his infantile spasms came back with a force.  We have tried numerous meds, Prednisone and ACTH, but nothing has worked.  It has taken a toll on his development.  We have a wonderful neurologist at UCLA who we absolutely love!  We will start testing in two weeks to see if Jackson is a candidate for surgery.  But our story does not end here, this is only the beginning. My sweet Jackson.  He gives the best hugs and kisses, and when I smile at him, he smiles back.  That’s all that I could ask, for my son to be happy and to feel loved.

So “thank you” to all of you, my “virtual” friends and TSC family.  You ultimately helped me cope; you are what I needed.  Thank you to my amazing husband Caleb, and my two other beautiful children Isaac and Ava, who help me on a daily basis take the best care of Jackson possible.  We are so fortunate to have a close knit family and circle of friends, who lift us up with their constant outpouring of love and support.  Another TS mom emailed a video that included the following quote. For all of the TSC fighters and their families, for a cure one day…

“Love is just the antidote when nothing else can cure me.”

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Guest Bloggers For TSC Awareness Month, Parenting, Tuberous Sclerosis

This Can’t Be.

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Second Annual “Blogging for TSC Awareness Month” Day 17

by guest blogger Kelsey Hudson  (Moon, Pennsylvania)

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My husband and I got married in October of 2008, and in January of 2009, I found out I was pregnant with our first son, JJ. Everything was going good, I didn’t have any morning sickness and then it all hit me around four months. We went in for a regular check up and they said, “We need you to go to see a cardiologist.” I was beside myself. What do you mean a cardiologist? There’s nothing wrong with my heart.

They explained to us they couldn’t see all of the chambers of JJ’s heart. When we had our first cardiology appointment we found out that JJ may have a heart problem. After going for an echocardiogram 11 times throughout my pregnancy and my regular appointments, they labeled my pregnancy, “High Risk.” I was shocked. I was sad. I didn’t understand why. How could this be?

glue hairMy pregnancy was depressing. I tried to stay happy, but there was so much back and forth with his diagnosis because the cardiologist told us there was so much shadowing with him still being in my belly, that they couldn’t tell everything. This made me even more sad and mad. How could my baby have this? I had to drive over an hour to each appointment one way.

August came and they said, “We are going to induce you.” They prepared us that JJ could be in the hospital for a few months after he was born. We had everything set up with Ronald McDonald house, and my mom was prepared to be there through everything so my husband could keep working after JJ was born.

September came and they induced me. I was in labor, for what seemed like days! Then September 5th came and my beautiful baby was born! They had an echo done right away and came in and said they wanted to do one more before we left. “Before we leave?” I asked. The doctor came in and told us during pregnancy they thought JJ’s heart condition was a cor triatriatum, and after him being born and more echos they found out he had a left SVC. (Not as serious!)

I was scared! Scared you tell me my baby is going to have all these problems and now he can go home after almost a week? Of course I was happy too! After we discharged we continued going to see the cardiologist. When JJ was one month we moved to Pittsburgh, PA. We were here for not even two days and he started having breathing problems and GI problems.

Long story about JJ short, we were in the hospital 27 times in his first year and a half. He had many GI issues, pneumonia three times, a hernia surgery, nine ear infections, tubes, he went into Failure to Thrive and was put on a special diet with soy drinks to get him back to a normal weight. Around the age of 2 ½ everything started to settle down with JJ. He still goes to cardiology and has his regular pediatrician check ups, but all in all hes a happy, smart, loving, caring, and sweet boy!

My husband and I said we would never have more kids. This was crazy everything we went through. And so far away from family! We have no family in PA; they are all in Florida, Virginia, and Nevada. So it was definitely hard. He was working all the time and I was at home. I would work night shift when he jj and wyattwould get home.

We had a blast with JJ. He was the light of our life! We started having fun, and doing things as a family such a little trips and whatnot. JJ loved other kids. I always thought about how he would be as a big brother, but never thought I would get pregnant again.

When JJ was 3 ½ we found out I was pregnant. I said WHAT? I was happy, but SO SCARED. I started going to my first appointments and told them all about JJ and my pregnancy with him. So right away they said, “We need you to see a cardiologist for a few echocardiograms while you are pregnant.” Immediately I thought, really, again? I can’t stand to see another baby go through so much. I was praying everyday he was fine.

We had our first echo, and they said we need you to come back because we can’t get good pictures of his heart right now. So between waiting and the next appointment, I was freaking out everyday. We had a second appointment and they said, “Ok guys, everything is fine! He is a healthy baby boy!”

I cried! I was so happy! I was ready to have a “normal” pregnancy and get excited about having a family of four. We decided to name him Wyatt! Things were great. We continued working separate shifts, and that way JJ was always with us and doing fun things! He did go to a little preschool for a few hours a week, and really enjoyed that.

All in all, my pregnancy was good. I had a few pain issues and some other minor things, but my boss was a good friend and she let me take it easy at work. I then hit my 39 week mark, and nothing. No baby yet. JJ was born a few weeks early. So I was ready to have Wyatt! They told us I was going to be induced. I hit 40+ weeks! I went in on a Tuesday night and they induced me. I had Wyatt at 11:54 am on Wednesday, and around 5 pm that day I was feeling on top of the world. I asked to go home, haha!

They said if you feel good enough you can go tomorrow. So I went home Thursday morning. I had to take Wyatt to the pediatrician on Friday because technically he was leaving the hospital early, and they wanted to check on him and his weight! He was born 8.4, my big boy! Things at home were going great, and around three weeks old, Wyatt started breathing very noisily. We called his doctor, and they said take him to the emergency room.

I was scared again! Thinking, oh please no, everything is good, everything with Wyatt is supposed to be fine! Nothing should be happening. So, at 2 am I took Wyatt. They checked him out, and told us he had periodic breathing. We were told not to be too concerned and to keep an eye on him but to make sure to get him to cardiology to have a double check, because of his brother’s heart history.

I didn’t even know what to think. I was in tears. My husband and I were so scared. September 30 came and JJ and Wyatt had Cardiology appointments. They did an EKG, and echo for JJ, and said he’s looking great. We want him to have a MRI around 8 years old. But for now we can stick to his yearly echo’s and checkups! Then came Wyatt’s turn. We thought oh this is so crazy, and silly. He’s fine.

His EKG was abnormal. My heart stopped. His echo showed four tumors in his heart. We were speechless. At this time cardiologist didn’t have any idea what these tumors were or if they were a sign of anything. He said three were small and one was big. They had another doctor read the results and go over things before they called us back in to talk to us.

We were told to come back in one week for a 24 hour halter monitor. Then after we did that, he had a sedated three-hour MRI of his heart, a scope down his throat and met with an airway specialist. That three hours was the longest of my life. At this point I had no idea what was going on with Wyatt. On Halloween of 2013 we were told we needed to see genetics because they believed Wyatt had major signs of Tuberous Sclerosis Complex.

Tuberous Sclerosis Complex? Is this real? I have never heard anything about this disease before. Of course I Googled and that was when it all hit me. My mom and best friend did a lot of research with us, trying to make sense of all of this. How? Why? Again, Why? Not my Wyatt! They told us everything was ok.

sneakyAfter seeing genetics and doing the blood work, we found out Wyatt had TSC. His mutation was TSC2. My husband I were tested and we were both negative. I don’t even know how I felt at that moment. The weeks we waited to hear about the blood work we kept saying, no, yeah right, not Wyatt, everything is ok. Wyatt has ash leaf marks on his skin, but we thought those were birth marks! I felt so stupid for not seeing any signs.

It feels like we have been through so much in such a short period of time. From August 21, 2013 to January 11 2014, we had been to so many doctors, finding out so many new things about TSC. They also had Wyatt getting the Synagis shots for RSV once a month for five months, to help protect him from getting RSV.

January 11, 2014, Wyatt had his first seizure. JJ was sitting next to him, and I was folding laundry. JJ was scared and so was I. We called his doctor, and we went to the hospital right away. He stayed for four days. He had an MRI of his brain andwas on an EEG the whole time he was there, except when he had the MRI. I was so sad. I couldn’t believe what was going on. He was put on a seizure medication and after four days we went home.

When I got home I was afraid to even leave the room or set him down. I didn’t want anything to happen and I didn’t want to miss anything either. About a month went by and we started seeing him having infantile spasms. This was something they warned us and talked to us about. But again, I never thought Wyatt would have them.

He stayed in the hospital for three days this time. And they put him on another medication. These were the hardest to see him have. JJ was going through a lot watching his brother go through so much. How do you hide that from a 4-year-old who is very curious about everything? I couldn’t. I also didn’t try to explain everything to him — I just let him ask questions and we would try our best to answer and make him feel better.

So now we travel to Cincinnati Children’s Hospital, which is about five hours from where we are to see Neurology there. We LOVE THEM! Wyatt has PT and OT, and now they added a developmentalist. Wyatt is weaning from a med right now that they believe has caused some of his delays. They are having him wear hand splits to help spread out his fingers and make more room for him to use this thumbs.

Ophthalmology found a tumor on his retina, and during his check up they said he was near sighted. He is a strong little guy! And smiles all day everyday! He just started sitting about two or three weeks ago all on his own and strong! He will be 9 months old on May 21. He is my WARRIOR! And JJ is my sidekick! Its hard going through all of this everyday.

I cry, I get sad, I get mad. But at the end of the day, I always smile because I have both my boys at home with me. My husband and I live for the nice days to take the boys outside with our dogs and let them be in the fresh air!

What a journey it has been and looks to be.

I just want to know Wyatt will be ok. And I feel that no parent should ever have to ask or worry about that.

Guest Bloggers For TSC Awareness Month, Tuberous Sclerosis

Hope. Encourage. Inspire. Never Give Up.

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Second Annual “Blogging for TSC Awareness Month” Day 16

by guest blogger Samantha Sinclair  (Maple Shade, New Jersey)

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Hi, my name is Samantha. I am from Southern New Jersey and about 23 years old. I was born with Tuberous Sclerosis and have had numerous laser surgeries beginning in adolescence and continuing into adulthood. I have multiple angifibromas on my face (with redness) and a few on other parts of my body, ash leaf spots (no pigment color of my skin in that section), skin tags (until they were removed), and 5-6 AMLs (angimylopomas) in total attached to my kidneys. I also had a large surgery last year in 2013 that removed an AML from my kidney through a process of three surgeries. I first had it embolized, then the AML turned into a tumor-like sack which was drained, and then it came back again and was completely removed. This was my biggest surgery besides the numerous laser surgeries I have had. I had 1300 milliliters removed from my body with that one AML. I felt extremely lucky to have conquered this surgery and move through the recovery process to live a healthy life.

I have had one seizure since I was 3, but prescriptions have helped prevent them from occurring anymore. I  am blessed to say I have a mild case of Tuberous Sclerosis because I have not endured countless seizures or other cognitive obstacles.  In May 2013, I graduated from Georgian Court University with a Bachelor of Arts in Psychology and am currently finishing up my first year in a Master’s Program for Clinical Mental Health Counseling at Georgian Court. In addition, I am very blessed to have my fiance, Eric, who loves me no matter how easy or difficult the circumstances. We have a lovely life, been together for six years and engaged for about two years. We are excited to be getting married in June 2016.

Overall I cherish many moments of my life because I have been able to live a healthy and happy life. My life encompasses warm memories of competing in sports from high school into college, and the arts such as musicals, drama club, and playing an instrument. I have been involved and held many leadership positions in many organizations and clubs on campus during my four years with Campus Ministry, Student Government Association, and Campus Activities Board, along with assisting many organizations with different events. I also really love to do volunteer work and have currently held two walks at my university over the past few years raising funds and awareness for Tuberous Sclerosis with the help of the TS Alliance. I am a fun, outgoing, understanding, and caring person who believes in living life to the fullest. I enjoy nature and I am always interested in new experiences.

I just joined the TS Alliance Group and even though I have organized a couple walks at my university to raise funds for TSC it’s nice to be apart of a group where you can share your helpful advice and provide support to others. I love learning about people’s stories, triumphs, and overcoming the obstacles. I feel very lucky for what I have accomplished and what I continue to strive to accomplish. For a long time over the years, I felt alone with TSC because I had no connections to others with various experiences to share, connect, and provide support to each other. Although my family and friends were there I wanted to feel connected with people who could truly understand what I was and still am going through. During those walks I organized I heard incredible stories that moved my soul. I admire all those people I heard stories from that were far more difficult than mine and I continue to look up to people who deal with TS on a regular basis and see the light in their journey. There is no light once you hit the end of the tunnel, the key is to look for the light throughout your journey and turn it into a positive. I look forward to being apart of this group, learning and being there for people, and hearing your experiences. I would say having TS has made me stronger and encourages me to live a full life every day. TS pushes me to conquer everything that may seem impossible and achieve my dreams which are endless. TS does not stop us. It does not define who we are; it is only a small part of our whole person. I learned if we never give up on what we believe or want to achieve in life, great things can happen in ways that you may never have thought possible. If anyone ever wants to talk, share stories, needs advice, or support I am here to help.

Guest Bloggers For TSC Awareness Month, Parenting, Tuberous Sclerosis

He is happy. He is loved.

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Second Annual “Blogging for TSC Awareness Month” Day 12

by guest blogger Shannon Arndt   (Newport, Michigan)

first placeBladen.  For so long Bladen was my imaginary child.  You see I had his named picked out before I even met his father.  As soon as I heard the name, I knew.  This would be the name of my son one day.  I envisioned a strong boy, popular, good-looking and with a pretty awesome name.  Once I met my husband, Russ, we couldn’t wait to have our first child.  We started trying to get pregnant on our wedding night.

My pregnancy had gone pretty smoothly.  I worked, ate and enjoyed telling anyone willing to listen that I hoped to have a boy.  And as luck would have it, we found out we were having a boy!

Around 31 weeks, I had been running around, arrived late to work and just didn’t feel right.  I called my OB and he said to come in.  They couldn’t get a good heartbeat and said I was really dehydrated so off I went to the local hospital.  There they hooked me up to IVs for fluids and I got to see my baby again via ultrasound.  The doctor said everything looked good but wanted me to come back to see a perinatologist.  We made the appointment and two days later Russ and I were at the appointment excited to see our baby again.

I remember joking around, laughing, looking at the pictures.  Clueless to the technician leaving the room, getting the doctor.  The doctor hadn’t said anything, probably because I was talking so much.  And then it happened.

Another doctor walked in and said, “How many tumors are there?”

I couldn’t speak, I looked at my husband and we both just started crying.  We were handed a copy of a page out of a medical book.  Tuberous Sclerosis Complex.  Not only our lives changed that day, but I changed.

Our son had rhabdomyomas in his heart.  Tumors that were growing in his little heart.  For six weeks, I was monitored twice a week by high-level Daddy and Bladenultrasounds.  Waiting, waiting to find the right time.  I spent my time scouring the Internet for any information and crying, mourning, worrying, feeling toxic to my own child.  Timing was key.  We wanted him to grow and not have other complications, but not too long or he’d go into heart failure.  At 37 weeks, it was time.  His heart started developing fluid around his heart, a sign of heart failure.

The next day, with about 20 doctors in the room, I had a 8lb 2 oz, 21 1/2 inch long baby boy.  His heart?  Well, I literally squeezed the fluid out!

At 5 months, he had his first seizure and shortly after, I quit my job.

I’d spend most of my time going to doctor’s appointments, playgroups, play dates, swimming, anything that would help my son.

12 months, he crawled.

16 months, he walked.

He went to OT, PT and eventually speech.

bladen before surgeryHe’s had numerous EEGs, overnight EEGs, MRIs and ultrasounds.

He went to a special needs preschool at 2 1/2.

A month before he turned 5, he was potty trained!

Two weeks after, he also had brain surgery to remove a SEGA brain tumor.

He started mainstream Young5 with a para-pro.

Then was diagnosed with ADHD.

He started mainstream Kindergarten with a para-pro.

Then was diagnosed with anxiety.

He is currently in mainstream 1st grade with a part-time para-pro for his anxiety.

And, he has made honor roll every quarter so far!

He has friends.

He is happy.

He is loved.

We still have bumps in the road.  We are currently watching another SEGA brain tumor; he has MRIs every 6 months to monitor.  He has a lesion in his eye, cyst in his kidney, tumors still in his heart, epilepsy, ADHD, anxiety, speech delay and with Tuberous Sclerosis Complex, the list will grow.
However, he’s been seizure and seizure med free for a year and a half.  He is currently unaffected by the lesions, cyst and tumors in his body – meaning, he is not suffering.
Bladen is a tall, funny, handsome, smart, loving 7-year-old boy.  And just as I imagined before he was born, he is STRONG.
Family walk
Guest Bloggers For TSC Awareness Month, Parenting, Tuberous Sclerosis

We are our version of “picture perfect.”

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Second Annual “Blogging for TSC Awareness Month” Day 5

by guest blogger Shannon Grandia  (Riverside, California)

My name is Shannon Grandia and my three children and husband have all been diagnosed with Tuberous Sclerosis Complex.  Rob and I were high school sweethearts with this “picture perfect” ideal of how our life would turn out.  Rob, my husband, had no idea he had the disorder until our first two born began having seizures and were diagnosed with TSC. When Rylee was born she was this perfect, beautiful baby girl and the picture Rob and I had painted for our life seemed to be coming true.   Over her first year of life Rylee was having these abnormal staring spells that her pediatrician was writing off as normal infant behavior.  At 18 months Rylee’s staring spells were lasting minutes instead of seconds and she was now salivating.  This is when her seizures spiraled out of control and she was hospitalized and diagnosed with Tuberous Sclerosis Complex.  At the time we had never heard of the disorder and had no idea what to expect. She had numerous calcifications covering her brain along with one distinct growth, ash leaf spots on her skin and focal seizures. Doctors told us best case scenario is that she did not develop any more growths and she could live a normal life on medication to control her seizures; worst case scenario could ultimately lead to death. Our “picture perfect life” was beginning to unravel.  Because at the time neither Rob nor I exhibited any signs of the disorder we were told that is was a “sporadic mutation” and unlikely any other children we had would have the disorder.  I was about six weeks pregnant at the time of Rylee’s diagnosis, but ultimately lost the baby at 12 weeks.  This put a strong desire in Rob and I to have another child and since we were told it was not genetic, we felt confident that there would be no complications with another child.

Jake was born two and a half years later. At birth he was a happy, thriving baby boy. Doctors told us it was unlikely he would have TSC, but they would monitor him when we brought Rylee in for her appointments.  At a few months old we noticed a couple white spots on his skin, but doctors told us it was a coincidence and he wasn’t showing any other signs of TSC. I am not sure how long we ignored the small staring spells Jake was having, writing them off as normal infant behavior once again but at 11 months old Jake was having a seizure every half hour and had to be admitted to the hospital and was soon diagnosed with Tuberous Sclerosis Complex as well.  He too had the ash leaf spots, three distinct growths in his brain and was having focal and complex partial seizures.  This was devastating news and our “picture perfect” life was crashing in around us.

Two children with TSC was a sign that either Rob or I had the disorder. After genetic testing it was determined that Rob had the TSC1 gene that was passed onto the children, his dad and brother were also tested and found to have the disorder. We did a lot of research and discovered there was a 50% chance of passing the disorder onto a child. A year went by and life was manageable.  Both Rylee and Jake were hitting their developmental milestones, medication was controlling the seizures and it seemed both had a more mild case of TSC. We felt confident that if we had a third child, he or she would be TSC free. We also wanted our kids to know that we loved them so much and we did not want to let TSC guide the decisions for our life.  Looking back this may have been a naïve perspective, yet it gave us Luke, and we would not change that for the world.

We did an amniocentesis with Luke to determine if he had TSC before he was born. Words cannot express the feelings that ran through me when we got the call that our unborn child also had TSC. Because of the diagnosis we did further testing and also knew he had tubers in his heart before he was born.  Luke came into the world three weeks ahead of schedule and spent the first two weeks of life in the NICU monitoring SVT’s of his heart. Luke spent more days in the hospital than out his first year of life. At one point he was having over 80 seizures a day and was close to comatose. He also had chronic pneumonia, RSV twice, asthma and further heart issues. Then at two and a half he was hospitalized for liver and kidney failure along with Pneumonia and the H1N1. This was the closest we came to losing Luke and he spent almost three weeks in the PICU at Loma Linda. This hospitalization also revealed that Luke was aspirating with fluids and he got a GI tube for fluids only.  Was this really my life?

Luke’s complications were some of the most difficult and darkest days. With the focus on Luke, Jake’s behavior began to decline dramatically.  At three years old he was no longer hitting developmental milestones, and was actually beginning to decline.  Behaviorally, Jake was throwing constant tantrums and was extremely aggressive being asked to leave the private preschool we had him in at the time.  Rylee was also having a difficult time during this period.  She was struggling academically, had weight gain from seizure medications and ADHD.  All three of our babies were fighting and I will be forever amazed how their strength brought them and us through those rough days. This was a long ways away from the “picture perfect” life Rob and I had dreamed about.

We have now lived with Tuberous Sclerosis Complex for over 11 years.  Rylee is 13 years old and thriving. She is the least affected and is on the road to leading a long “normal” life.  Rylee still takes medication for seizures and ADHD, and school is not easy.  But Rylee is learning how to be a good student and stay focused.  She is also a good athlete, playing softball for the last 4 1/2 years and now playing club volleyball.  Mostly, Rylee is known for her bright smile, positive attitude, and love of life.  She is an incredible help with her brothers and has a heart of compassion that teaches us daily how to be a better person.  Jake is now 10 years old and has a diagnosis of intellectual delay and autism.  He too still battles seizures, but they are controlled the majority of the time by medication.  He also takes a concoction of medication for behavior.  Jake has recently moved to a severe autism class, in the hopes that we can get better control of his behavior.  The key with Jake is consistency and routine, which is actually good for us all.  He as an ABA, one-on-one aid with him in class and an outside agency now evaluates and helps with intervention weekly. It has been a rough couple years.  Luke is a 1st grader (in a more severe Special Day Class).  He is the healthiest he has been since birth.  We have never been able to get his seizures controlled, but at an average of five a day, he is on the most effective combination of medication so far and has begun the Modified Atkins Diet.  Also, the G-tube and not drinking fluids has kept the Pneumonia away and he has had a nice stretch of staying out of the hospital.  Because of his medical issues, Luke has an LVN that stays with him throughout the day.  Originally, we were told he may never walk, talk, or even live past the first few years of life.  Not only has he defied all the odds, but cognitively is trying to catch up and shocking everyone.  At 7 years old, Luke is saying more words everyday, can now ride a tricycle, can follow routine rules in the classroom and on the playground and makes anyone who comes in contact with him immediately fall in love with those bright, blue eyes and huge grin.

Rob and I take one day at a time and have no idea what the future holds for our children, but it makes for an interesting journey.  We have learned to celebrate the little things in life, trust God has a plan for us and our three children, lean on each other and those around us when we need strength, and see the daily blessings our children give us.  TSC is a horrible disorder, but it does not define who we are. Rob and Rylee are both considered mild, Jake is moderate and Luke is classified as severe.  We pray daily for a cure and that the seizures and complications will miraculously disappear.  But we also are so thankful for our three miracles, the difference they are making in this world and the joy they bring.  You will not meet three happier kids that appreciate life and each other more.  Watching them together is a beautiful thing and they teach us daily how to be better.  Over the years our idea of “picture perfect” has changed and our we are our version of “Picture Perfect.”

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Guest Bloggers For TSC Awareness Month, Parenting, Tuberous Sclerosis

Normal is Boring

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Second Annual “Blogging for TSC Awareness Month” Day 4

by guest blogger Kate Green  (Melbourne, Australia)

image-2Last Sunday morning I woke up with my son Hamish, Spike the cat and a broom in my bed. This was not entirely unusual. Welcome to my world.

Hamish is eight and has Tuberous Sclerosis, which was diagnosed when he was two days old. He has global developmental delays and very little formal language so far. He also has the face of an angel, an array of very effective communication and charm techniques and is endlessly funny. Whilst Hamish is not technically autistic as such, he has a few mannerisms which are termed “autistic tendencies”. These include the lack of speech, lots of happy flapping and and a tendency to wander off if given half a chance. Fortunately he is never presented with that chance. These tendencies are counterbalanced by the fact that he loves attention, will shamelessly charm anyone who grabs his interest and his love of socialising. Life with him can be challenging at times and not always predictable, but I’ve found that maintaining an open mind and trying to see the humour in situations is essential. His schooling is a great example.

Hamish is in his third year at a lovely specialist school here in Melbourne. During the term, the school bus arrives to collect him at 8.35 each morning. Hamish loves catching the bus and is loudly greeted by the other kids when he hops on. On his birthday recently, the whole bus sang Happy Birthday to him before they set off. This certainly got the attention and a few smiles from people walking past our house.

At school Hamish is in a class of five children, with a special needs teacher and two assistant teachers. His curriculum consists of art, music, drama, dancing, literacy, numeracy and swimming. In Hamish’s class, it also includes Swahili as a second language. Peter the assistant teacher is from Kenya image-4and is teaching Swahili words to Hamish and his classmates. I’m not sure how much Swahili is sinking in with Hamish, but given that his other teacher is from the USA, I’m half expecting him to start speaking Swahili with an American accent.

It’s a wonderful school and the care and dedication shown by the staff is amazing. Hamish is thriving in this environment. His sense of humour and love of silliness is encouraged, even if it involves him throwing all of the class teddy bears out the window or getting soaked in water during sensory play. When I arrive to collect him in the afternoon he is always happy and draws out the leaving process as long as possible. This routine includes giving each of his teachers a good bye pat on the face and trying to sneak out the door with whichever toy he happens to be playing with. By the time I’ve chatted to his teachers, extracted Hamish and said hello to the other parents it is often a case of the long good bye.

At home Hamish loves to potter in the garden, sort through his toys, play on the iPad and snuggle. The obedience he shows to his teachers usually magically disappears at home, where it is replaced by what I call selective deafness. Which is not to say he is naughty. He’s a very chilled little boy, but has plenty of attitude and is very good at getting his own way. He’s also a master of passive resistance. When bedtime rolls around he won’t kick and scream if he’s not tired. Instead he will walk with me to bed, but gradually sink to his knees, then onto his hands and knees, then finally onto his tummy in the manner of a reluctant snake. He thinks this is hilarious. Once he’s finally slithered into bed he usually goes to sleep pretty quickly. The nights when he decides he doesn’t want to sleep can be interesting. He will either very calmly come out of the bedroom again and again to show me that he’s still awake, or he’ll quietly and efficiently pull everything out of the cupboard and scatter it across the room. I personally prefer the first option.

Like many developmentally delayed children, Hamish goes through phases of being fixated on a particular toy or domestic item. The egg whisk is a perennial favourite and the dish brush frequently goes missing. Computers are also especially interesting. He has an iPad, but is fascinated by anything with a keyboard, a mouse and a monitor, especially if they belong to his big brother.

image-3Fortunately, Hamish is extremely healthy and has none of the dietary problems which can afflict children with Tuberous Sclerosis. He loves food and will try almost anything. His tastes actually run to the quite exotic. He prefers camembert and quince paste on water crackers over regular biscuits and loves anything spicy. Chocolate and ice cream are his first loves though, so in that respect he’s much like all little boys.

Which brings me back to waking up with Hamish, a broom and a cat. The broom is his latest fixation. He drags it across the floor, swings it around and takes it with him to his thinking spot on top of the step ladder, where he sings to it. He loves it so much at the moment that he brought it into bed for a cuddle. Along with his his opportunistic cat Spike.

Which pretty much sums up life with a child such as Hamish. Its nothing if not interesting. Sometimes frustrating and on rare occasions sad, but overall funny and happy, in a slightly demented sort of way.

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Guest Bloggers For TSC Awareness Month, Parenting, Tuberous Sclerosis

It isn’t going to be easy, but nothing worth doing ever is.

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Second Annual “Blogging for TSC Awareness Month” Day 3

by guest blogger Michele Stiefel  (Lancaster, Pennsylvania)

adam 5In March of 1985, our second son was born.  Adam was the baby I could relax with, knowing a bit more the second time around.  But by May, Adam was hospitalized with his first seizures and flown from our local hospital to Children’s Hospital of Philadelphia where he was diagnosed with tuberous sclerosis.  No one in our family had ever heard of this disease.  No one had ever had seizures.  Our world felt like it had blown to pieces.  His four-year-old brother, Ben, felt like he had caused the baby’s illness because he had been so jealous.  Ben began to act out and we sought out counseling to help him and us.  Slowly over that summer, we started to try to find some kind of normal – going to the local mall, taking Ben to his swim lessons and so on.  We waited anxiously for Adam’s early intervention program to have his spot available in the fall, but before we could start – Adam was back in Children’s Hospital with infantile spasms.  The next three years were nothing short of awful as there weren’t the kinds of meds back then that are around now.  We never really got control of the infantile spasms and he went from a smiling baby at 4 months to a lump that didn’t cry, didn’t coo, and didn’t roll over…just laid where ever he was placed and kept on having seizures.  That was our beginning…

Fast forward two years and Adam is five.  The infantile spasms are fading out although his “Heinz 57” varieties of seizures are still around.  But he’s no longer in the fog of IS:  he smiles, has a beautiful face and people fall in love with him easily. He’s learned to sit and crawl. He’s standing but hasn’t taken that first independent step yet.  My husband and I hire his early intervention teacher to do respite with the boys overnight so we can celebrate our 10th wedding anniversary at a nice hotel.  When we get home the next morning, Adam greets us by walking independently around the corner!  Stinker took his first steps while we were away!  It was the best present we ever received.

Early intervention those first five years helped Adam and our whole family to survive.  We learned to hope and dream of a future, not just of limitations but of having him experience as much of a normal life as his older brother with the same opportunities and experiences – adapted Adam-style.   It wasn’t going to be easy but nothing worth doing ever is.

The first big “normal like Ben” goal for Adam was to attend weekend religious school at our synagogue.  There were no other children with special needs in adambmitzvahthe building and our rabbi wasn’t so good at “getting Adam.”   Luckily I’d met another Jewish mom in town whose son was a couple of years older, also non-verbal, who used a wheelchair.  I talked her into joining and we started our own class with our boys.  About the same time I volunteered to serve on the synagogue board of directors because the best way to make things happen is to become a decision-maker with a voice and a vote.  Then the rabbi who didn’t get our kids took another job in another city and the search committee started looking for a new rabbi who would be willing to do Bar Mitzvahs for kids with special needs.  We got a great one.  Our boys started studying extra with the rabbi, listening to Bible stories, handling ritual objects, and being recognized in front of the entire religious school just like the rest of them.

At 13, Adam had his Bar Mitzvah and it was wonderful!  He loved Jewish music, so we hired a Jewish folk singer who wove music throughout the service.  Adam is non-verbal so he couldn’t lead the service like a regular Bar Mitzvah boy would.  Instead he worked for two years to be able to hold a special wine cup upright throughout an entire blessing without putting it down or spilling it.  He learned to hold and “hug” the Torah scroll on his lap without letting go.  Being non-verbal he couldn’t read from the Torah in Hebrew so his brother read for him.  This was special – no one is allowed to touch the Torah scroll where the Hebrew is written.  One uses a special pointer to follow along.  Big brother Ben held the pointer and Adam’s hand at the same time as he read so that Adam could “read with him.”  To keep Adam from fidgeting, Ben used one finger to tickle Adam’s palm because it calms him — all while they were doing the Torah reading.  The sanctuary was full and there weren’t too many dry eyes in the house.  We followed it up with a great party and Adam definitely knew he was the guest of honor!

Adam went to a special needs summer day camp from the age of 8 to 21 and had lots of fun.  Swimming wasn’t his thing but music time was.  He participated in programs as a teen where he got to hang out with another teen or college student and do regular teen things.  He went to four proms and had a date for each one of them!  He discovered blondes… :)…he really likes blondes.

The summer after aging out of school at 21 was scary.  A rare malignancy was discovered in his colon.  Surgery to remove half of his colon and three weeks in the hospital with complications followed.  He was down to 85 pounds and took a good two months to recover.  Then it was time to begin his journey into the world of adult services.  We did not want Adam to be inside four walls all day in a sheltered workshop environment.  So he became one of the first participants in a new pilot program taking individuals with severe adam promdisabilities out into the community as volunteers.  He helped with Meals on Wheels – his staff would drive the car and knock on the door; Adam would hand the lunch to the senior citizen.  He made lots of elderly friends on the route.  He worked in local libraries, pushing the books onto the shelves (with hand-over-hand support by staff).  He was a busy young man and enjoyed being out and about in the community.

Through one of the programs, Adam met Matt who is also non-verbal and has autism.  Just picture two non-verbal guys making eye contact with each other and laughing and insisting on sitting together every day at lunch.  The program staff told me about how great they were together and said, “They should live together.”   I sent our contact info home in Matt’s backpack and his mom called me.  We started to get the guys together on Saturdays for pizza and we began to talk about the possibility of them living together.   News traveled through the system about these two guys and how great they were.  The head of the county intellectual disability department called us, said he’d heard about these two and were we ready for Adam to move into his own place with Matt?   Adam was 24 and we said yes because one of our dreams was that Adam would live with a friend, not just in a place where there happened to be an opening, but with someone he truly liked.  He’s lived there since 2009 and he loves it.  He’s thrived there, gaining in independence and doing things there that he’d never do for me at home!  He’s in a community he knows well, having grown up there.  We are able to keep an eye on things and be involved while we are still healthy and able because we’re in our 60’s and none of us live forever.   As parents our job is to give our kids “roots and wings”.  Big brother, Ben, went to college, started a career, got married, and bought a house.  Adam has his jobs, social life, and lives in a house set up just for him and Matt.

I mentioned that Ben got married.  Guess who was his Best Man?  Adam beamed with joy throughout the entire wedding weekend.  And boy!  Were they both handsome in their tuxes!

benadam

Finally, it’s important to know that we went through really hard times with his tuberous sclerosis, just like a lot of you.  Recently he was diagnosed with Crohn’s disease, totally unrelated to his TS, so he gets two chronic illnesses to deal with and it feels really unfair.  There have been times over the years when I fantasized about throwing my suitcase in the car and heading west and never looking back, but I never did.  Instead we used counselors, behavior therapists, doctors, teachers, compassionate friends and family to help us get through the worst.  Now after 29 years, I see what our family has accomplished and I know we more than survived, we thrived.  We are all better people because of having Adam, TS and all, in our lives.  So keep dreaming of possibilities for your kids – you never know what you can achieve!