Facing tough decisions

As April and May quickly approach, my mind goes back to the day our lives changed. Since April 15th, 2013 are minds have been filled with, tumors, seizure meds, developmental therapist, multiple doctors and testings, and many more scary thoughts. Along with those, we have had many happy thoughts as well, Like how well Madilyn has responded to medicine and how thankful we are that her development has stayed on track.

As we come up to a year since her diagnosis, I am so thankful to say, Madilyn has been seizure free for 11 months! And just as we almost hit a year of seizure freedom, we are thrown with the idea of having to wean her off of the medicine that has kept the life threatening seizures away. Every time I think of this new decision we have facing us, my heart plummets to the ground. You know, that empty feeling? That feeling that makes you sick, and then some of your limbs start to tingle?? Well that's what I'm feeling. I try to be very positive and strong when it comes to Madilyn's fight with TSC, because truthfully God has given us a lot to be thankful for. But with that being said, I'm scared right now. I said it... I am scared.

The thought of taking her off anti-seizure medicine scares me to death. This is the medicine that has allowed her to not fight with seizures, it's the medicine that has allowed her to continue developing like she should. You're probably thinking, why in the world we would take her off of it?? Well here's the other scary part. The medicine she is on, can cause peripheral vision loss. It isn't necessarily meant for long term use. Both her TS Neurologist and primary Neurologist agree we need to wean her off of it since the hypsarrhythmia is gone. So in ways this is a big milestone, because she no longer has IS!! Praise God!! But in the same sense we are having to face the fact that she will forever be at high risk for seizures, because of her diagnosis of TSC. 

Currently she is still having abnormal brain activity in her right frontal lobe. This means that the potential for seizures are high. So we are faced with having to make another scary decision. The first option is we wean her off of her current med and put her on another seizure med. The second option is to wean her off of the current med and wait and see what happens. Obviously, I'd rather have her med free, but I'm scared to death to make that decision and then have her start seizing and risk her going backwards. I am terrified to see her have a seizure. The thought brings me to tears. When I sit down and think about it, it seems so unfair to have to make such a hard decision. I don't want to be at this cross point. I don't want to face this next phase of her health. I want someone else to do this....

And then, that's where it clicks. I don't have to make this decision alone. I have someone to lean on. The One who has carried us along this far. The One who stopped her seizures after only 2 weeks. The One who has allowed us to see miracles. I have Him. And then those feelings of sadness, anxiety, and fear, go away. I know that He will guide us in this new decision and allow us to feel at peace. I know that no matter what Madilyn's future is, He will be there. He has brought us so far, that I will not push Him away now. 

So here is where I need your help. We have seen God answer so many prayers in our life, I know he won't stop now. Will you please pray for our family as we face this big decision. Will you pray that when she goes back that any abnormal activity is completly GONE.. Will you pray that we, as a family, will open our eyes and hearts to see His will. 

We have a few trying months ahead, but I know with all of us praying we WILL get through this, just like we did in the beginning. You all have been on this journey with us from the beginning and have been praying for our family from the start. I'm humbly asking that you please continue to do so. Our prayers have been answered, and I know that He has heard our cries. We have seen it first hand in Madilyn.

I'm so thankful I can come to you all with these requests and feel confident that we will be covered in prayer. You all have been such a great support group, by praying, giving us encouraging words, and helping us in our awareness efforts. We feel like our family grew by hundreds when all this happened. Thank you for being such a huge part of our life. We will never be able to thank you all enough. 

Mark 11:24

Therefore, I tell you, whatever you ask in prayer, believe that you have received it, and it will be yours.