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