Good early morning,
Monday, Eben did great. He did not get sick from the anesthesia and we believe it was everyone's prayers. Thank you Lord for everyone that prays for Eben and our family.
The MRI revealed an increase in hydrocephalus. So, we will be making our way back to Mayo. We plan to leave Saturday morning.
Along with the MRI being addressed, Eben's DXA scan and swallow studies need to be addressed.
During this time of sickness, we have become close to many families that have sick children. You can't help love them. Little boys and girls with cancer, brain tumors, and heart conditions. We have been blessed to have one another.
I have been considering a statement by a young mom that has a two special needs little ones both with multiple health issues like Eben. She said her boys' condition is lifelong.
Today marks the day our lives changed. I guess forever. Some health conditions have beginnings, middles, and ends. You get a diagnosis. You start to fight for your life. You have surgery or chemo, and then at some point you are "cured" or "repaired."
The first year, I was scrambling for a cure. We spent a lot of our time asking the question "how did this happen?" and it's cousin question "how do we get it fixed?" The second and third year, you haven't given up. You still show up. You do what you have to just to get through the day. Year four, reality sets in. This is who you are. This is who he has become and by default you have changed. Hope has been reshelved. You haven't given up. It just has been moved up high. Hope perches on the top shelf, and no amount of tippy toes is going to reach it.
Do you want to know what these 5 years have taught me? What they have meant to me? Faith is not for sissies. Faith is a two way street. Faith is work.
I have stopped looking for a cure. I have quit asking why. Why him? Why now? Why this? I have came to cope with the hard fact this is our life now. There is no going back. I can spend my life longing for what could have been or I can enjoy what it is.
We stand here believing God has a plan. We don't have to know his plan to be present in it. We are living the plot twist!
Faith is work. I spend my days wrestling with God. He can handle our questions. He wants us to be an active participant in life. He wants our thoughts. There is no guilt in being real with God. It isn't a lack of faith to cry out in pain. I spent a lot of time feeling guilty for not being strong enough. I'm not strong enough for this fight.
This is how I know I belong to Him and He belongs to me. He takes the time to wrestle. He listens to my cries. Each of my tears are precious to him. He bottles and keeps them. They are not wasted in vain. Eben will one day be restored. God has not abandoned us. He is not expecting us to walk this road alone.
Here is to living out the plot twist! Faith is sometimes work!
Do the work!