Dear Madilyn

Dear Madilyn,

From the moment I first saw your sweet face I knew that my discription and idea of love would never be the same. I loved you while you were in my tummy, but no one prepared me for this new love that would overcome my mind and body when they placed you in my arms.  

Your dad and I had it all planned. We knew what kind of parents we were going to be and had already dreamt up your life, playing future scenarios in our head with smiles on our faces. Our happily ever after was just starting and we knew life had great things in store for our family.

Well we quickly found out that life doesn't always go as planned, and when the doctors uttered  abnormal after MRI scans our hearts were crushed, but our love for you grew even more. 

You see every day I wake up thinking I know what love is, and I think I have loved as much as my heart can possibly take... and then you walk up to me and say "hi momma" with your head tilted to the side and your tiny mouth grinning. And my heart burst at the seams with unconditional love for you. Each time you overcome an obstacle that no little girl should ever have to do, my love grows. When your daddy is the only one who can get you to sleep at night and you only cry for him, my love grows. When I see you defying what the doctors have told us, my love grows. And when I see you struggle with what this world holds for you, my love still grows.

You have taught me more about love than I ever thought possible. And even in the times of complete heartbreak, I find myself feeling blessed. Because had I not been given this intense love for you, none of these hardships would hurt as bad as they do.  

Thank you sweet girl for bringing such a beautiful and pure love into our lives. Without you we would still be skimming the surface, never knowing what we were missing out on. 

I love you with every piece of my being. And I am so proud to call you my daughter, sidekick and hero.

Love you always and forever,

Mom

Trusting

Sitting in the hospital was not what we had pictured for our first few days of the new year. I certainly didn't expect multiple blood draws, catheters, IV's  and all the other fun things that come along with a stay. But to be honest, these hospital stays are always haunting me in the dark corners of my mind. I say haunting because realistically it is something we have to prepare ourselves for, it unfortunately can often accompany this disease. We have been very fortunate to have very few hospital stays in the last 2 years. That being said it doesn't make them any easier. It reminds us of the ugliness of this disease. It's a big punch to the gut to hear, "most kids would be fine fighting this viral infection at home, but your child has epilepsy and tuberous sclerosis, and that's not the case." It's really hard not to get defensive when I hear these words. Or even jealous. I wish we were home pushing fever reducers, and cuddling Maddie, being able to roam freely in the comfort of our own home without EEG wires and IV wires. It's hard not to start envying the normalcy of sickness.  That's sounds crazy, but it's true. This disease leaves me fighting being bitter so often. I constantly am fighting to remember that God's Peace has been freely given to me. I only need to seek it and accept it. I have to constantly remind myself of His love and Grace for our family. I am human and it is so easy to fall into a black hole of doom and gloom. We could sit here and wallow in our self-pity, believe me I have a lot. And in the last 24 hours I have had to slam the door several times as I see myself allowing it to creep in. But feeling sorry for ourselves and being down brings nothing positive to our situation, it doesn't change it, and it only rubs off on those around us, especially Maddie. I want Maddie to be strong and to never ever have the thought of us giving up on her. When she is struggling from the stress this disease brings I hope she knows we will always be strong for her, like we know our God is always strong for us. 

I know that this is a tiny piece of Gods plan for our family. I am trusting in His perfect plan. I am leaning on friends and family to lift us up, helping us bridge the gap when our souls begin to feel weathered. I am so thankful for all of you praying for us. And I can wait to share with you what God is doing in our lives. 

For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call on me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart. (Jeremiah 29:11-13 NIV)

That's A Wrap

So 2014 is a few hours from being over and I thought I would jot down a few things that 2014 has taught me. I also couldn't let my blog year end without one more blog, or as Maddie would say, " mon more."

So here's a few things I find myself reflecting on today.

1. You can't put a price tag on family. Ok, so I already knew this prior to this year, but the role our entire family has played in our life this year has been huge! From prayers, to encouragement, to countless babysitting - they have picked up our falling pieces several times this year. I am certain this year would have been disastrous without all of them. Our big dysfunctional family has been quite functional!

2. Things change and only you can decide how you deal with those "things". As most of you know, we were blessed to have a year and a half of no seizures with Maddie. That year and a half was absolutely wonderful! Well that changed. And seizures came back. Along with those seizures came heartbreak. Once we knew they were back we had to either decide to sit in the darkness of our pain, or stand up and continue our journey. It's never easy to do, but with prayers and the promise God gives us, it is possible. (Matthew 19:26)

3. Being a SAHM isn't as glamorous as I once believed. I keep telling myself tomorrow my house will be clean. By next week the laundry will be caught up. After Maddie's birthday I will declutter. At nap time I will find that "pin" and workout. One day I will look presentable for more than just the days we have appointments. The list goes on. Well you guessed it... I'm still not there. Truth is this job is hard! My house and body may carry more clutter and junk than ever before, but my heart is full of nothing but love, joy and lots of coffee. Being a SAHM is a blessing that I cherish, even on the days of full blown tantrums. 

4. Dream bigger than big. I am NOT a "real writer". I am sure many of you cringe at my grammar and style, or lack thereof. I simply write down what's going through my heart and mind. Maddie's diagnosis brought this on. So one day I was talking to Chris and told him it was a dream of mine to one day be published, specifically on The Huffington Post. I realized I would need to take some writing classes and it would take years of working towards that goal. I would definitely need to work on my poor excuse of a blog. Wouldn't you know 2 weeks later I was contacted by Huffington Post?? Yes, big big shock! I still often think they got it all wrong! How and why did they pick me? I still don't know. But I am thankful and I hope God will use me to bring hope and encouragement to others. I also pray that somehow the awareness brought to TSC will make a difference. I think sometimes we set our goals lower than we should just so we don't get disappointed. I have definitely learned that setting BIG goals is imperative to our growth. 

Those are just a few... I could go on, but I don't want to bore you :) 

I can't wait for the new year! There are so many things I am looking forward to! I am so excited to see the new TS Alliance of Oklahoma in action. I have high hopes for our group and I'm so thankful to see this come to fruition. I am also very hopeful that Maddie will find seizure freedom in 2015. I am praying that God will continue to give us guidance in her medical care. We will also be moving into our new home pretty soon after the new year. Big things happening in 2015! 

Happy New Year friends! Thanks for following our family in our journey. Cheers and see you in 2015!

Love always,

Heather 

Fighting

My whole life I have been a fighter. Fight for my family, for a good deal, for what I want, for what I need.

Whether that has always been a good thing or not, is a different story. 

I have never been one to step away and just wait to see what happens. I will fight for it. Bottom line.

Here lately I feel like my life has become one big fight. I fight to keep up with laundry, I fight to stay up with school work, I fight the mass of people in the grocery lines, and most recently, I have very aggressively been fighting with Maddie's pharmacy for her medicine.

It's a constant fight to keep up. And it's slowly wearing me down. Mind, body and spirit.

If my so called "fight" was a body part, it would be worn, bruised, scratched and in need of some TLC.

To be very honest, I'm tired. I'm tired of constantly fighting and trying to get people to understand why I'm fighting. I'm tired of fighting to keep my fight alive. 

I know I'm not the only one who is fighting something.

Whether it's fighting the mountain of laundry or a potty-training toddler, or the overwhelming finances, or an incurable sickness. We are all fighting something. Big or small, there is always a fight.

Tonight, let's do ourselves a favor and let someone else fight for us. Someone who has a great track record. Someone who loves us so much that He want's to fight our battles.

What do you say?

Let's be still.

Exodus 14:14
The Lord will Fight for you, you need only be still.

 

EDIT:

Dear Heavenly Father,

Thank you for revealing yourself to me through a keyboard and a computer screen. I pray Lord that you would see the needs of our family and please meet them. I pray that we would see Your hand work in our family like never before. I thank you Lord for your gift of a fighting spirit and ask that you would guide me on how to better use it to serve you. Please open my eyes to show me how my fight can be used to honor you and not only myself. Thank you for unending mercy and grace over my family. In Your name I pray.

 

Amen. 

 

Withdrawals

1. Drug withdrawal is the group of symptoms that occur upon the abrupt discontinuation or decrease in intake of medications or recreational drugs. In order to experience the symptoms of withdrawal, one must have first developed a physical or mental dependence.

   Maddie, my innocent 2 year old, fits into this category. She has developed a physical/mental dependence on the drug that stopped her debilatating seizures. At the beginning of this journey we couldn't wait to get our hands on this miracle drug. I remember feeling like it was Christmas morning while we waited for the FedEx truck to pull into our driveway. That same drug that gave us seizure freedom has now left us with it's very strong side effects. Withdrawals. 

   
   

   When I think of the term withdrawals my mind immediatley goes to drugs, alcohol, or prescription medicine abuse.

   
   

   My mind does not think of a happy, innocent, toddler.

   
   

   Maddie's withdrawals are very scary. She will stop in her tracks, look frightened and her body will start to shake, or tremor. Now that we have seen these for a few weeks I like to describe them like what we would do if we felt an earthquake. She looks scared of the shaking and then tries to grab onto something to stabilize herself. 

   
   

   It's really heart wrenching to watch. I feel helpless and my heart plummets when I see the look on her face. I usually run over to her, hold her, and assure her that she is ok. I whisper to her that it will be over soon.

   
   

   As much as I am trying to console her, I can't help but think the words I speak are just as much for myself. I so badly want someone to hold me, assure me, and tell me it will all be over soon. 

   
   

   I think that is the one of the hardest parts of this disease. There is no definite end. With most things in life there is a beginging and end. When you think the end has come,(weaning meds) the TSC monster comes out and reminds you that this battle is never over. To know that each day, month or year will bring a new challenge is very overwhelming. 

   
   

   When these feelings of despair start to creep in I run to the only thing that comforts me. His word. When nothing else makes sense, His word soothes my soul and reminds me that although TSC has no end, we have heaven to look forward too. No tears, no TSC, just happiness in the arms of our Lord. 

   
   

   My heart longs for a day where we can have a "normal" life with our daughter. I don't want seizures. I don't want withdrawals. I don't want to have fear of what might happen at night when she's sleeping. I don't want these things... 

   
   

   But for now, I will live this life with gratitude, trust in His plan; and ask that God would guide us, deliver us, and allow us the opportunity to glorify Him. 

   
   

   Hear my cry, O God; attend unto my prayer. From the end of the earth will I cry unto thee, when my heart is overwhelmed: lead me to the rock that is higher than I. (Psalms 61:1-2 KJV)

   

   
   

   
   

   
   

   
   

   
   

   
   

   
   

   
   

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