Dear (not so dear) Tuberous Sclerosis

Dear (not so dear) Tuberous Sclerosis,

I despise you.

You have brought pain to my family since the day your name was so gravely spoken. Your tag line of incurable ripped through my heart like a million razor blades tearing it to shreds. You have made me doubt myself and my ability to care for my own daughter. Your dooming prognosis made me want to run far away. I still feel ashamed when I think of those fleeting thoughts.

I have never been faced with a problem that I couldn't fix, or at least attempt to fix. You however, are a different creature. I can't fix you or your damaging effects that have taken a home within my daughters innocent body.

As I lay my body on my daughter, attempting to restrain her for an EEG, I feel nothing but hate for you. As each tear falls from her face I carry more and more anger. Within those moment you make me want to give up. I want to throw my hands in the air and wave the white flag, surrendering ourselves to your overpowering existence.

But then my daughter, who has been your prey, shows her amazing strength and cracks a smile. All of a sudden the anger, pain and grief leave the room. You can attack her from all sides and she still has the ability to show her strength. She is stronger than you. Which makes me stronger than you. Her smile returns my strength and makes me once again renewed and ready to tackle whatever you throw our way. 

We will not be defeated by you. We will not give you that power. We will fight for our daughter and the thousands of others who have been attacked by you.

You may be a part of our life, but we refuse to be defined by you.

You are messing with the wrong family. We won't go down without a fight.

Sincerely,

The Lens Family

The Bruise

I have tried to write this blog post several times and each time I have erased what I wrote and walked away from the computer. I'm not sure why I'm having such a hard time updating because nothing bad happened at our appointment; in fact we have made some great progress. I guess my heart is just a little overwhelmed with this new step.

First, I must say that the TS Houston clinic is wonderful. Everyone was so welcoming and kind. I loved Dr. Koenig and Dr. Northrup. They were both so welcoming and you could tell passion was involved in their practice. Joan and Patty were both equally as wonderful! We knew we made the right decision as soon as they walked in.

So now onto the details... We will be weaning Maddie from Sabril starting on Monday. I'm excited and terrified all at the same time. Secondly, we got the prescription for the face cream for her angiofibromas(tumors on her face). We have noticed over the last 6 months the red spots becoming more noticeable so this was a priority at this visit. We are so excited to start this cream and see if it will help them. It breaks my heart to know she is already showing signs of them, but I'm happy that we have a way to hopefully reduce them. And lastly, we are now enrolled in a genetic research that is for TSC patients who have no mutation but do have a clinical diagnosis. This is really exciting! Like I said in a previous post this really won't necessarily help us in our dilemma. But it may lead to new breakthroughs so we are happy to be a part of that.

So why has this been so hard to write out??? I can't exactly answer that because I'm still not exactly sure. The best I can explain it is like this...

I mentioned earlier that we are in the genetic research program which meant we had to have blood drawn. Well today I looked down and saw the bruise left behind from the lab work. As soon as that small bruise caught my eye, my heart dropped as I thought of all that is behind that little bruise on my arm. The bruise is from TSC. Well not exactly, but hopefully I can explain...

When we first got the diagnosis of TS it hurt, it hurt parts of me that I didn't know could feel pain. It left us hurt and bruised. The bruise was apparent, it hurt and was hard not see. But over the last year of no seizures and wonderful progress the bruise, and pain, has slightly faded. Although, we know it's there we haven't had to see a lot of the effects of it. The purple color of the bruise had faded leaving only a small trace of discoloration.

Now all of sudden the bruise is back. We are weaning, we are getting cream for her face, we are making preparations for the possibility of seizures. It's a reminder of the fight we fight. It's the reminder that seizures could be lurking around the corner. The pain comes back when we face the ugliness of this bruise. It's the hard reality of our life being different. Although all parents have fears, ours are also accompanied by the fears that TSC brings. Hearing the words, weaning, behavioral issues, brain surgery, sedation, IEPs brings a large amount of fear and pain. The bruise becomes darker and more painful. My heart physically hurts that Maddie has to go through this, that we have to go through this, that so many others have to go through this. It just doesn't seem fair to be sitting in a room full of doctors telling us all kinds’ of bad things to watch for. They have no clue what's going to happen and neither do we. We just have to sit back, pray and have faith that God will continue to work miracles, ease our pain, and guide us in making these hard decisions.

I know these fears will slowly fade back down to my "normal" level, just like the bruise on my arm will lighten each day. But for now the bruise is dark, the pain hurts, my heart is heavy, and my fears are high. 

We can't predict TSC. We can't predict what it may or may not take from our daughter or family. But what I can predict is God's grace carrying us through this. I am so glad I can count on His mercy and love for our family.

 

Please be in prayer for us as we start this new step. Please specifically pray that Maddie will continue to be seizure free. And please pray the God would give us peace and comfort as we leap out in our faith in Him.

 
Thank you all so much for the prayers as we traveled. We are so thankful and blessed to have you all praying and carrying for us like you do.

"Worry does not empty tomorrow of its sorrow, it empties today of is strengths."

-Corrie ten Boom

Playing with Grandma Jane

Burning off some energy

She loved the Disney Store

Was too young for the ice rink, but enjoyed watching the others

Houston TS Clinic

It's funny how much life changes. Before Maddie and TSC, a trip to a Specialty Clinic wouldn't be exciting or something worth counting down the days too. It used to be concerts, football games and netflix binging that got us excited. Now it's really awesome doctors and medical professionals that excite us. Oh how times change :)

Needless to say, we are very hopeful for our trip to the Houston TS Clinic. To be honest I'm not exactly sure what we will come back with, but I know it will be more than we know now.

We will be meeting with a new geneticist that is doing research into patients who show no mutation. It doesn't really mean that it will benefit us directly, but it could make a step forward in the TS community by learning more about these select few.

We will also be speaking to a neurologist that we met at the World Conference. She seemed so wonderful I can't wait to pick her brain(no pun intended) about some things going on with Maddie. It's so hard being a parent because you constantly worry about your child, but throw in a disease and the anxiety is even worse. I'm on constant watch for signs of other TS manifestations. It can be draining. I'll be happy to hopefully put some of those things to rest with this visit.

Pease pray for us as we travel and visit with a new set of doctors. The trip will be a long one, but I'm confident it will be worth it. I can't wait to update you all on all that we learn.

Thanks for all the prayers! This momma is going to need them!!!

Heather

Maddie is checking through our schedule making sure it works with her ;)

The Day The Huffington Post Came Knocking

Have you ever done something in life that felt so unreal that you just knew you were a guest on the show punk'd? Well that's exactly how I felt when I got an email from the Huffington post.

Let's back up a little...

I am NOT a "writer". I didn't go to school for writing and I certainly didn't take notes through my composition classes like I should have done. I am sure that there are some of you who cringe when reading my pieces because of grammar. To be honest, and I'm sure you can tell- when I write I don't stop to look over things. It just all comes tumbling out of my finger tips and I can usually barely keep up with what's flowing through my mind. I never have an agenda in mind or an outline. I simply sit down and spill the beans.

Ok so back to my punk'd story. One weekend my mother, who is a little partial of my writing, told me I should send some of my posts in to different magazines. I thought it over and thought it wouldn't hurt. If for some reason it was seen by someone maybe it could help bring awareness to a disease that most have never heard of... Tuberous Sclerosis. I had nothing to lose.

So later that night I decided to send out my blog through twitter to different magazines. Before shutting down for the night I sent it to the Huffington post. What's very ironic about this is the fact a few weeks prior I had mentioned to Chris that one of my bucket list items would be to one day be published my the HP. I told him that it would take years, if it even ever happened, so if I could do it by age 50ish I'd be thrilled. Being on the Huffington Post in me eyes was a feat that would take some time and for sure some writing classes for my poor grammar... 

So a few days later thinking nothing about my pointless attempt, I checked my account and found an unread email from someone from the Huffington Post Parents. My heart skipped a beat as I clicked on it, and my mind slowly read these words, "We are interested in the piece below. Will you please send us your head shot and bio."

I slowly got off of the couch and started screaming to my parents, trying to relay the email to them. My mom didn't know what to think and my dad sat in his recliner with a big grin that didn't need any words. I knew he was just as excited as I was.  

After dancing around like the crazy woman I am, my head fell quickly from that cloud 9 that I was jumping on...and back to the words of this email.

Ummmm what did she say she needed? A head shot... A bio? Thank goodness they couldn't see through the screen of my iPad. I am quite certain they would have revoked their offer quickly had then seen me sitting in my yoga pants that had crumbs, stains, and who knows what from tiny little toddler hands. My hair was slicked backed in a messy bun, and I'm pretty sure my shirt may have been inside out...not on purpose.

I started to fret. 

What's my bio? Who am I?!?! And a head shot? I don't have a head shot. I frantically went to Facebook to see if I could come up with something that remotely looked like a head shot. Something that looked semi-professional. That's not easy when you are a crazy mom like me who posts millions of photos of your daughter.

I then sat down and started to scribble down my bio. One would think this wouldn't be hard. I mean who knows me better than me? Will this wasn't the case for me. Finally, after talking it over with my mom we went with the basics. I am a wife. I am a mom. I am an advocate for tuberous sclerosis. Of course we added a few things in there to make it a little more glamorous, but it was complete!

I then replied back to her email and waited and waited and waited. The longest two days of my life. I was waiting to get an email back from her stating that once I authorized a payment of 29.99 my post would be published. I was preparing myself for the let down. I really was just waiting for the cameras to roll out and say, "Haha!! We got ya!" Several times at night I thought what if it's a scam and my email is being hacked? 

I went through every reason why I wasn't good or worthy enough to be published by ANYONE.

Then Thursday morning at 10:09 (I'll never forget that email) I was told that it had been published and where to find it. At that point that was the highlight. I couldn't believe that I was a published writer/blogger. It just didn't seem real. I was so happy but had no clue what was about to come from all of it.

As the article gained some interest throughout the day I had people reaching out saying that I took the words right out of their mouths and that they felt like I was writing this for them. I had some telling me how they were just starting this journey and the article gave them hope. I had friends and family sharing the article and were celebrating with me. 

Within those moments I realized that I was not alone in these feelings. God had taken a letter that I had written to myself and had used it to reach others who were hurting or had hurt like this before. He also had given me a huge platform to bring awareness to tuberous sclerosis. That in itself was amazing! But it didn't end there. He gave me a way to relay that there is hope within our situations. We may not see them in the midst of our trials. But there is always a sliver of hope to grab onto. 

I am thankful that through the past year, we have been surrounded by many of you who have prayed and reminded me of the Hope we have in God. We have had so many pray for us and have given us shoulders to cry on, but then would quickly remind us of the mighty God we serve. I am so glad that He allowed my scrambled writings to reach others.

It has been such a blessing to hear other families stories of hope and strength. I feel very humbled to have had this opportunity. People like me don't just land on the front page of The HuffPost-Parents.

I absolutely give all the Glory to God! 

If you haven't had a chance to read it, please go check it out here.


Thank you all so much for all the sweet words and for joining me in celebrating! Also, if it weren't for you all sharing the articles with friends and family, it wouldn't have gained so much interest. Thanks from the bottom of my heart!

Love always,
Heather

The day we were told not to have children

When growing up I had decided that marriage and kids was not my thing. Who in their right mind would want to be tied down and risk giving their hearts to people who could eventually drop them like a bad habit? At the ripe age of 18, the whole thing was too much for my mind to understand. I had made up my mind that those two things would NOT be a part of my future life. 

Well as we know, the thoughts of a young lady tend to change as you expose yourself to what love can be. In my case, I stumbled upon a man who made me laugh, and became my friend and my partner in crime, before he ever became the love of my life. We grew to love one another and my idea of life started to quickly change. All of a sudden I found myself dreaming up our happily ever after. I dreamed up our perfect wedding, our perfect house and of course our perfect children.

Before I knew it one of those things were falling into place. We married on a beautiful golf course with our loved ones all gathered around us. After being married for a few months we decided to move our family back to my home state. Not long after making the move we found out we were expecting our first child. Those thoughts of no marriage and children were now nothing but a silly thought that had been disproven by the love I had found.

The girl who thought she didn't want any children, brought life into this world on October 19th of 2012. She was perfect. Beautiful blonde hair, perfect blue eyes and fit wonderfully in my arms. She was a dream come true. 

We slowly but surely caught on to all the things parenthood brings, dirty diapers, sleepless nights and endless amounts of signing, you are my sunshine.

By the time our daughter turned three months old, my husband and I were already thinking about our second child. We had decided we would start trying a few months before our daughters first birthday. Some called us crazy, and in all reality we were crazy, but we were also crazy in love with being parents. 

The absolute unthinkable happened 5 months into our lives with our daughter. She was diagnosed with a seizure disorder called Infantile Spasms. They later found tumors on her brain and heart, which led to them diagnosing her with a genetic disease called Tuberous Sclerosis. This genetic disease also had a tag line of incurable

.

Our hearts grieved for our daughter and for the life we had imagined for her. We weren't given much of a bright future for her and our hearts began to break as we heard the things that could accompany this disease. 

We were encouraged to have genetic testing to find out if my husband or I had this same disease. The disease is so broad that we could have it and still show no signs. Because of the possibility of passing this on to our future children we had to put our dreams of having another baby on hold.

After waiting a year for the test results we were given the news. They could not find the genetic mutation. She was in the small percentage of having a clinical diagnosis but no genetic results to go along. The doctor was talking, but my mind could not focus on what he was saying. Once the gibberish slowed down my ears finally focused on him, and just as they did the most hurtful words spilled out of his mouth...

He slowly said, "It would be irresponsible for you and your husband to have any more children."

Life stopped within that moment.

Irresponsible. What did he mean? He didn't say that we were physically unable to have kids. He said that if we chose to, we would be irresponsible. 

It felt as if it was a bad joke. 

Girl who swears to never have kids, finally decides she wants kids, and then is told not to have them.

I felt the joy of motherhood being sucked out of my every being. Not only had this disease taken things away from my daughter, but now it was also stealing the big happy family I had dreamed off. All of a sudden life seemed dark. I questioned why this could happen to our family. Although my whole life hadn't been spent on dreaming up my family, I did want to be a mother, and I did want to have children. I wanted my daughter to have siblings. I wanted to see my children grow up together, and now this doctor was telling me it wasn't the right choice.

It did feel like the world was over. In less than two years, we had moved across states, had a beautiful baby, been given a horrible diagnosis, and then told we shouldn't have any more children.

Looking at it from this perspective, it felt as if life had given us the short end of the stick. I was mad. I was sad. I was terrified of never being happy again. 

And then, after agonizing over something that could not be changed, I chose to take off the dark, gloomy glasses that I had been wearing since the news. I studied the faces of my husband and daughter. They were beautiful, they showed strength and determination, and overall, their faces made my soul fill with joy.

This life that I had been given wasn't the dark picture that my mind was trying to paint. Yes, we weren't prepared for the heartache of having our daughter diagnosed with an awful disease, and yes, we hadn't planned on having to make a decision to not grow our family. But if you take those things away God had given us a beautiful life. 

We had seen our loving family grow closer together because of the disease. My husband and I had found a love for each other that was deeper than anything I could ever describe. And our daughter had taught us strength, love and true happiness.

How could I be mad at this life?

It wasn't what I expected, but look at what I thought I wanted in the beginning? It occurred to me that having one child is a miracle in itself. And that alone should be cherished. 

My life isn't picture perfect and to some it may seem a sad or difficult one. But for me it is a happily ever after. I was meant to be the mother of this child and I was meant to have her and my husband by my side. 

I am so thankful the dreams of my 18 year old self weren't granted, and instead I was granted this life. A life full of laughter, love, and sloppy kisses from my toddler.

A letter to myself 2 years ago...

To myself pre-baby and pre-TSC mom-

You have no clue what life has in store for you. Your mind now only can think of marriage, career, houses, and where you will be going to dinner tonight. You think you love your husband right now, but you don't have a clue. When your daughter is placed in his arms for the first time, not until then, will you know what true love is. Your love for him will be indescribable in that moment. It will intensify as you see him give his everything to you and your perfect, tiny, little baby.

 After the new baby fog wears off, you will feel like you aren't doing a good job. Your heart will drop when she chokes while nursing. You will think you are doing it all wrong. You will cry the first time she has shots. You will feel like an inadequate mother when you feel like sleeping instead of rushing to her side when she wakes up every 30 minutes. You are good mother and you're a tired mother as well. It's ok to be both. You will be thrown a curveball after 5 months of learning your new life as mother. Just as you think your getting the hang of things, your life will take an unexpected turn. You will think life as you know it is ending...but this is not true. Hold on, you will make it, life is not over, your life is actually just beginning. A medical term will be thrown at you while doctors look at you with blank faces. The room will start to spin and your heart will feel as if it's being ripped out of your chest. Your first instinct will be to grab your daughter off that hospital bed and run far away. But you won't, you are much stronger than that. At the time you will not feel strong, but you are. Again, just hold on. Hold on tightly to your husband, your daughter and your faith. Those things will carry you through your new journey.

This journey will not end, it will forever be a part of your new life. I know this isn't the life you had wished for, but there will be things that come out of this journey that you could have never dreamed of. You will find a different, more powerful, more loving woman deep down inside. You will find a woman who has more determination than ever imaginable. You will learn big medical words and be able to throw them around like you have been in medical school. You will be able to administer meds to a fussy baby who is determined to spit them out everywhere. You will find the wisdom to make very hard decisions concerning the health of your child. You will open your heart to a new set of family members. You will not be related to them by blood, but you will be related to them through the joys, heartaches, fears and accomplishments that this disease brings. 

I know all of this may seem like too much, or like an awful nightmare. But I promise you. You can do this! You will learn so much about yourself through this journey. You will forever be growing into a woman of strength. Just hold on. Hold on tightly and don't give up when times get rough. Dig deep and harness the energy of the love you have for your child and husband. That will carry you through on the days of despair. 

Hold on. Don't give up. Lean on your faith. Love like you never thought possible.

You've got this. This does not have you.

World TSC Conference 2014

So as most of you all know, we just got back from The World TSC Conference, in Washington DC. Back when the conference was first announced I knew I had to be there. What I didn’t know is how we could ever afford it. With me staying home with Maddie and Chris working at the fire department, I just didn’t think it would be a reality. Well that all changed when I shared the conference info on my Facebook saying how awesome it would be to go. Minutes after sharing it, I had a friend offer to do a fundraiser for us. I was shocked at her generous offer! She said she would get all the info and we could pass it around to our surrounding communities and see what we could raise. Once I added up the airfare, hotel, and conference fees, I realized that raising $2000 probably wouldn’t happen, but maybe we could find a way to come up with whatever wasn’t brought in by the fundraiser. So in January the fundraiser began, and guess how much our community raised?  You guessed it… A little over $2,000! We had some people donate straight to our trip and others who bought things through the fundraiser.  We were in awe of the generosity of those around us. We were thrilled and couldn’t wait to make the big trip! In February I booked our flight and hotel and waited to see if we would get awarded a scholarship from the Alliance. Well, once again our prayers were heard and we found out in March that we had a scholarship for one of our conference fees ($295). After that, all we had to do was patiently wait for July to come around….

So on July 2^nd we boarded our plane in route to Washington DC. I was so excited! I couldn’t wait to meet the moms that I had been in connection with since Maddie’s diagnosis. I was nervous and excited to attend the sessions, not really knowing what I was going to learn. Would I understand the topics, would the sessions be helpful? I was full of good anxiety. (Not really sure if there is such a thing..?!) Lastly, I was VERY excited to meet the TS Alliance staff. These people meant the world to my family, even though I had never met them.

To be honest, I didn’t know what to expect from all of the other attendees. My first thought was that it might be a somber setting. I mean all of these families, including ourselves; have dealt with the heartache that comes with this complex disease.  Would we all be depressed that our lives had brought us to this place in life? A place where an awful disease takes over the organs of our child, spouse, parents and so on… Would there be sad tears, would there be a hopelessness flooding the rooms of these sessions? I honestly didn’t know what to be ready for.

As we walked into our first session on Thursday evening, I quickly realized that this group of people was anything but, hopeless. We were a group that was eager to learn, a group that was willing to lend a shoulder to cry on, we were a group that would give everything but up. We were all fighting for our family members. We were there to arm ourselves with all the knowledge and connections that would help empower us to better care for our loved ones. These rooms were filled with smiles and eagerness to learn. These rooms were filled with strength and determination.  Although most of us had never met, it felt like we were attending a large family reunion.

Not only were my fellow TSC family members amazing, the medical attendees were wonderful as well. The medical professionals were in this fight with us. They all had a passion for TSC that was very obvious by the way they spoke about new research and technology. I had one lovely doctor hug me on a day that I had become overwhelmed with emotions. She gently pulled me in and embraced me.She reassured me that everything was going to be ok, and that there were people like her, fighting to give my daughter a better future.

It was so overwhelming to be able to be in a place full of people who understood. I didn't have to try and explain my fears because they knew those same fears all too well. I didn't have to hide my emotions because most of them felt the same way we did.

After being in the conference all weekend, I couldn't put into words how thankful I was for the Alliance and staff members. They cared about all of us enough to spend countless hours to make sure we were surrounded by the best doctors and speakers. The made sure the hotel accommodations were fabulous. They made sure every tiny detail was perfect so that our weekend was a fun, productive and comfortable one.

I feel so incredibly blessed that our community did so much to get us to the conference. We learned  an incredible amount of very valuable information.  We now have Maddie into one of the best clinics and I can promise you, had we not gone to the conference we would have never known to move Maddie to a clinic that has research going on specific to Maddie’s genetics. She will now be getting some of the best care around.

We can’t thank the Alliance and other families enough for an incredible weekend. It is a weekend that I will never forget! I am already excited for the next conference, whenever that may be. Until then, we will keep running the race that has been set before us.

Love always,

Heather