April 15th 2013

April 15th 2013- Chris and I were huddled together around Maddies hospital crib watching her have a long seizure.  We had pushed the button to let the nurses know. Before we knew it the room was filled with 10-15 medical staff looking at our family. The doctor gave us the news that the MRI of her brain had come back with multiple tumors. Her diagnosis of Tuberous Sclerosis was slapped on her chart. We felt as though life had been sucked right out of us. Our baby girl had tumors on her brain and heart, and was having one of the worst types of seizures. The world was crashing down around us. After Chris and I looked up from holding each other, a peace came over me. All the prayers for Maddie had filled that cold, dark hospital room. We fixed our eyes on our faith and told each other we WOULD get through this. This would not define our family or change our love for each other or our precious daughter. Later on that day we heard the awful news of the Boston Marathon bombing, Chris called his family and friends to make sure everyone was safe. We had a friend who was in a restaurant right where the bomb went off, but thankfully he was ok. After some time went by the doctor decided to start her on her first big dose of seizure medicine (phenobarb) and we were told she would be somewhat zonked out the rest of the day. After some quiet time in her hospital room our parents urged us to step out of the hospital and get a bite to eat. I really didn't want to leave but the past 3 days had left us exhausted, hungry and needing a small breather. We finally gave in and went to a restaurant just a few blocks away from the hospital. It was at that point, while we were waiting on our food, that I remembered it was our 5 year anniversary. We talked about it briefly over dinner and while watching the news about the bombing. Too much bad was surrounding us. We didnt have enough energy in us to think of celebrating. The next few days she was monitored and finally sent home. The ride home was a very quiet one. I was scared, could I take care of her, did I have enough strength to watch her have these seizures? I questioned myself the entire ride home. About 15 mintues away from home Chris turned on the radio to take away from the deafening silence. It was then that we heard Jason Mraz song come on. The lyrics brought tears to our eyes....we just looked at each other and instantly grabbed each other hands, while the song played. (see the video below)

 

 

We were broken, scared, sad and lost. But one thing that you could not call us was hopeless. Our Hope and Faith in God had not been taken away by her diagnosis. We both spent many hours on our knees praying for answers, praying for wisdom, praying for strength and for MIRACLES. And he heard our cries. He has shown us His hand at work in Madilyn's life. He has given us strength when we didn't think we had any left. He did not turn his back on us when we were defeated. He lifted us up and sent family and friends to help carry us through this past year.

Things happen in life that dont make sense. Thanks happen that leave you broken and leave you scrambling to put the pieces back together. But remember that you aren't alone. God so badly wants to take those bad things and turn them into good. He wants to show us miracles. He wants us to feel His eternal love. We just have to give him the opportunity to do so.

I am so beyond thankful for this past year. I have seen God work in our lives like never before. I will continue to let God lead our family and I will pray that though whatever comes our way, that our actions and words will Glorify Him.

And though she be little, she is fierce

Yesterday we headed to Tulsa for Madilyn's preop visit, for her upcoming sedated MRI. Although we knew it would be a pretty easy visit, I still had a few stomach drops on our way there. It's almost impossible not to think of last years trip up to the children's hospital. Of course Maddie had not a worry in the world. She sat in her chariot, (car seat) and pointed forward we go!

I know we all experience lessons that are taught by our children. But I can't believe all that I've learned from Maddie within only 17 months. She has taught us about strength, hope, happiness and how to have the courage of a baby, which until recently, I wouldn't have thought that courage would be more than a grown adult. 

Although I know she probably doesn't remember a whole lot of last year, I do know that she knows what a doctors office is, and what usually happens when we go to 1 of the 6 doctors she sees. She knows that it's time for her to be poked around on and machines hooked up to her. And yet when walking into that big, Goliath like children's hospital, she held onto her daddy's hand and marched forward. I walked behind them while I was trying to get all our paperwork together, and her bag full of goodies, and being some what worried that I forgot something or that we were going to be late. My head was filled with the worry and anxiety of the day. Once I felt I had everything I looked up to them ahead of me. And there she was, ready to take on whatever the day brought. She had faith and courage like David. It didn't matter how big the hospital was, or how big this disease is she was marching forward, not thinking of the past. Only thinking of today.  

Philippians 3:13-14

13 Brothers and sisters, I do not consider myself yet to have taken hold of it. But one thing I do: Forgetting what is behind and straining toward what is ahead, 14 I press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus.

Madilyn is teaching me that although the past is very real, I need to stop dwelling on it. I need to not forget the prize that lies ahead. I need to have strength, courage, and faith and know that whatever is ahead of us is the plan that God has for our family. I do believe that we are on this path for a reason and I pray that  we can Glorify His name in all we do. The fear of the past will hold me back from this. So I'm letting go and marching forward to the race He has set before me. It just took a little 17 month old girl to teach me that...