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