Throughout our journey, I have felt a deeper range of emotions than ever felt before. I didn't know pain, loss, sadness, hope, love, and gratitude on this level even existed...at least in my world. I now say, pre-Sanfilippo I was living in black and white and now I see color.
I wrote a lot in October. It was my way to cope. I find myself writing less on here, not because I am coping better, but I sometimes am too tired to do so. I do, however, write them in my head many times during the day in hopes I will sit down when my house is quiet and write. Tonight I have found both the energy and time to do so.
I wanted to share some "insights" that I have begun to hold onto as we continue to navigate life in a new way.
This past Sunday, we had the golden opportunity to be on stage at Church and share what has been going on and raise awareness about Sanfilippo. It was hard....the topic was on unanswered prayer...or more specifically, when you pray and don't get the answers you want. Time was limited and we shared the stage with others, but I left feeling like there was more I wanted to say, so here it goes. It's pretty raw so hold on tight...
My new outlook towards life is this: God-use me. Use me in my brokenness. When I feel like I don't have the ability, the strength, the talent, the words-He uses me. He used me to lead a student to Christ. He used me to speak into broken hearts. He used me to help others be grateful for the life and the children they have and stop complaining about stupid crap like wallpaper or what other people think about them. He used me to reveal Himself as God. Whatever his will, cure or not, we want Him alone to be seen and glorified. We will continue to trust Him at His word.
This may sound harsh but it is what I believe....God is not a genie in a bottle. Just because we have a desire of our heart, even if it is "good" (like our kids to not die of Sanfilippo) doesn't mean it is in His will to cure them just because we pray. This life is about Him, and His will, not me or my children. Being a christian, I was never guaranteed a trouble-free, all-prayers-answered, God. In fact, he says it gets worse. IN THE WORLD YOU WILL HAVE TRIBULATION; BUT BE OF GOOD CHEER, I HAVE OVERCOME THE WORLD. What he DOES promise, is to walk with me through it. Isn't that what we want from earthly relationships. We want people to listen sometimes, not just fix. We want people to just accept us, not change us.
He also has the power to cure Sanfilippo. In heaven is where he will make things right if he chooses not to do it while we are here. It is not about what I want, what I think, what I deserve. Life is not about worldly happiness. There is never a given that everyone gets a house, 2.5 healthy kids and a white-picket fence. That is a lie America tells us and we tell one another. Life is about His will being done. That's it. It's about us being obedient in the center of Sanfilippo. It is trusting Him regardless of the outcome. Hard faith? Sure. But that's what it is. Faith. If you ask anyone, what would make you "happy" they would probably say a life of purpose. A life where they were loved and able to love others...feel accepted and not alone. Feel that they made a difference. Well-that is what my children get to do. There life surely isn't wasted. They are making an impact for heaven bigger than most people who live until they are 90 will do. They are here for a purpose. And, if our only purpose is to be obedient to Jesus....they got that covered better than people who will never the experience pain like this on earth.
You bet God promises rewards. Not here on earth, but in Heaven. If this life is not the end, and only the "schooling" for heaven....my kids are at the top of the class. People ask, "why me?" when storms come. My answer? Why NOT you? Did you get a hall pass from the fallen world?
We are all terminal. No one gets to escape pain of this world. Pain may look different but everyone experiences it. That is why if you just look to this world for answers...the answer is unhappiness....sure, we try to fake it with old navy trips, money, boats, cars, big houses, or perfect children. But the truth is Jesus is the only answer to true happiness. How else can you be see blessings when you face storms? Heaven is the perfect world we long for.
I was always afraid of heaven, to be honest. I never really liked the idea of living forever. But, now faced with Sanfilippo, I get it. Kinda. I get feeling like I never want to lose Jayden. I never want to lose Brooklyn. Or Justin. I would hate putting a person like Grandpa in the ground and never seeing him again. Why? Why am I sad when people leave this earth? Because I long to live with them forever.
Why do I want this world to be free from pain? Why do I desperately want God's blessings, or answered prayers now? Because that is what heaven is like.
So, I am thankful. Thankful this is not it. Thankful Jesus came for me and my children. I am thankful that I don't have to accept Sanfilippo as a terrible end, but can look at it as an opportunity. An opportunity to love my kids better. To deepen my faith. To strengthen my marriage. To love people better. To see this world for what it is. To live with an eternal perspective. To see God use me. To see God be faithful. To witness miracles. Thankful for the Bible and all the fellow broken, suffering people who, despite their pain, never gave up on God. The Bible is full of them. That gives me hope. If God is real, and heaven is real....then the way I face life should be with that expectation. If it not real, and I die and am left in the ground to rot, I don't think that living a life of gratitude and love will be a wasted one. Sanfilippo is my cross to bear. It sucks to carry. But the reward for being faithful will be worth it. For my kids. For me. And for my Creator. My Sustainer. My Healer. My Jesus.
Everyday, I throw my kids back over the bridge and trust God will catch them. I relinquish control moment by moment. I am for sure still learning how to do it and it hurts deep every time.
Some of you may be thinking-that is so great for you. You are in crisis and Jesus is a nice crutch. Whatever helps you deal with your kids terminal illness. Pastor Joe put it best. "Then-What's your crutch? What do you do when your world is flipped up-side-down? We all have crutches" and I think mine is working. Jesus helps me walk when I am broken. He carries me when I am too tired to walk altogether.
I am no longer on the fence of this Christian thing. I can't be. There is a since of urgency now. So, my white picket fence will just have to wait for my mansion in heaven.
