Sunday, March 8, 2015

Two Years Now, Full Remission!

"Broken Crayons Still Color...Live in the Present & Make it BEAUTIFUL!"

As I sit outside on this beautiful day, I am reminded of God's grace. Grace, "the free and unmerited favor or help of God." To see my daughter ride her bike with no care in the world. To be able to buy her clothes and know they will fit because swelling is not a concern. To be able to eat food and not worry if it has salt in it. To not panic each time her nose gets sniffly. These things are all blessings to us, blessings most people would never even think to thank God for, that is, unless your child was told they had nephrotic syndrome. And you were told they may never be off steroids and their childhood could easily consist of multiple hospital visits, along with daily concerns about blood pressure, clots, swelling, and scarring.

 So today, I sit here soaking in God's grace and mercy with overflowing thankfulness for Emma Kate's good health. A day I remember longing for a couple years ago. I watched her stroll across the drive way on her bike, looking less like herself because she was swelling and we were fighting a protein spill. However hard those days were, God was still there, leading me. The tears streaming down my face, He saw every one. God's mercy can show itself in a number of ways, and during that time God's mercy was given to me in the form of guidance. I could not see it at the time, but I knew God was there and I just kept trusting. After all, what other choice did I have? So to sit where I am today is such an amazing place to is hard to even put it into words. It has now been TWO full years of remission and ZERO meds! Emma Kate recently celebrated her sixth birthday, and is as healthy as ever! We are truly blessed, but most importantly we know it and humbly give ALL the glory to God.

"Let us then with confidence draw near to the throne of grace, that we may receive mercy and find grace to help in time of need." Hebrews 4:16

One thing that is very clear to me now, is that God had a plan for our journey. His plan was to use us to encourage others and give hope that maybe steroids are not the only solution. Doctors can be so negative and the internet is even worse. After her diagnosis I remember searching the web for hours at a time to find ONE story of HOPE. Everything was so sad and negative. And understandably so. But I craved to find just one story I could cling to that people found an alternative solution. Now, by the grace of God, that is exactly what this blog has turned into.  I am reminded of the verse "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 a hope and a future." Jer. 29:11 It is so hard for us sometimes because we live in the moment. It's easy to forget God knows exactly where you will be 10 years from now. He knows the number of hairs on your head. He has a plan for us, and if we trust Him, each step by step He will be faithful to lead us. Though it may not always be in the way we anticipated.

In the past 8 months I have been through some personal trials that have reminded me, that when we do not understand, we still have to trust in God's greater plan. And God has been gracious to give me verses to cling to as I wait on Him. And He reminds me of how He has brought me through time and time again. We can't always see it with our human eyes, but GOD IS FAITHFUL.

When we were in those dark days I never allowed my self to think in terms of "why" or "this is not fair", and I still don't. My dad taught me a hard truth early on that "life's not fair." It stinks, but some times that unfairness works out in your favor! Just like this blog. The changes we have made will not work for everyone, some kids will still end up needing a transplant. However, it just may change a life. And more importantly, it may help someone to find peace and learn to trust God. All I do know is this is what God wants me to be doing, so I am.

I am daily amazed how many people this blog has reached. I remember when I first started it, I thought maybe 5 people would come across it. Well, over 130,000 people have come across it! Considering the specifics of this blog, that number blows my mind! I have gotten personal email from people in Jamaica, India, England, Canada, U.K. and the U.S. I love being able to encourage others and answer questions about diet. It is truly the work of God and I feel blessed to be His vessel!

Emma Kate:

The only recent news with her is that for the first time in two years (that I am aware ) she actually did have some protein show up in her urine. She is getting older and approaching the age that she goes to play with friends with out me there. Well, at a friend's house she accidentally ate something she thought was gluten free. She is generally very cautious about her diet, so we had to have a talk about that! She ended up having about a 30 on the dipstick the next day. The day after that it was trace, and a day later it was back to negative. I was disappointed that so little did cause some spilling, however, it did confirm that we are certainly doing the right thing by keeping her on a strict gluten free diet!