Some of the most spiritually intimate parts of this journey have come about in the bathtub. It's the only time that I'm really alone with God other than in my thoughts. It is in the tub that I can speak out loud to the Lord with the sound of the water pounding the space around me, swallowing me in relaxation.
When we got home from Chicago I was tired. I made my way to the bath and as I sat I simply started to say, "I will praise you in all things. I will praise you in all things. I will praise you in all things." Eventually I began to cry and repeated this same declaration at least a hundred times. "Your grace really is sufficient. Your grace alone is enough, Lord."
I realized in that moment how easy it is so sing about these things or to say them but it is in the times when you feel the least capable of praising or believing that you can have a remarkable spiritual breakthrough. I am re-learning about this God. I am learning things that may seem simple for others to grasp but maybe I truly haven't until now. God is using this to refine me and I am thankful. God is using this to draw others to prayer and I am thankful. God is using this. And that is my desire.
I went on to pray to the Lord through my tears and brokenness, "Please, Lord, never let this be about me. Not about Daniel. Not about this family or what we can do in our faith. PLEASE let this always be about you...."
As I finished up and headed downstairs I found Daniel holding Nora close in the toy room. I asked them to sit up and we prayed together. We glorify a God who is Holy and worthy. We praise a God who has purpose and is perfect. We honor a God who is capable and intentional. I don't understand His ways but I don't have to--that is precisely what makes him God.
I am at an odd place this morning. Truly I don't think I've let the news about Mabel's eyes sink in completely. It's not that I'm in denial--in fact, I felt at great peace with the news because I feel that I have known for quite some time that she isn't seeing the way that she should be. But I feel as if I'm waiting to feel sad or grieve for her eyes for fear that we haven't heard the worst yet. It's awful, I know. But maybe it's a coping mechanism. Maybe it's a safe place. I'm not sure but what I do know is that in all of this, I now know far too much and what I know is that life is very flawed and very unfair. Alot of children suffer with alot of horrific diseases, syndromes and disorders and although I don't understand it, I have seen the reality of it and read the research.
Our Lord is beyond research. He is already far ahead of what I know--after all, He laid this path out for us perfectly. I pray that He would choose to spare us from a devastating and life altering disease. I pray that He would grace us with a fantastic miracle and Mabel would start reacting, reaching, seeing, sitting, crawling, standing, walking and would develop 'normally' from this point on. But I'm just not sure that is what is going to happen. That doesn't mean that I don't have hope that it can. I believe that it can with my whole heart. But I believe that just because all things are possible doesn't mean that all things are the will of God. The will of God is for all of us to be healed and whole; this I know. And I believe Mabel will be healed and whole rather here on this earth or in eternity someday [far, far away.] If her healing is not to be here on this earth, I am ok with that because I know healing is coming. If God chooses to heal her and perform amazing miracles in her while she is on earth, I pray that He would receive all the glory and I pray that it would be so others could see his awesome power! His power truly is awesome.
So the waiting is still the hardest part. My hope is that we already have our answer--that Mabel's retina disorder will be named and that it would be the cause of all her delays, seizures, and other symptoms. The flip side in that is that this is yet another major symptom to an unknown syndrome, or disease. Either way we have a huge part of this puzzle figured out. It feels good to have the confirmation that she isn't seeing the way she should be. So what's causing her to have seizures daily? What's causing her tongue to protrude? What's causing her amino acids to be abnormal? Something has to be causing these symptoms to persist in her body. Please, Lord, reveal it soon.
I can never thank you all enough for your kind words and encouragement. I have literally received hundreds of calls, texts, comments, messages and emails. I am overwhelmed at how many of you love us and are in this with us. Please know that it is ok to be sad for us and to tell me if you are sad. There is nothing wrong with feeling it; it is very real and you don't have to be strong for me. We're in this together...
It is not a journey I would have chosen for myself but I know that I was prepared by the creator of our universe for just this and I am humbled by that. He chose me to be Mabel's mom. I knew the second that I saw her that 'there was just somethin about Mabel...' and there sure is.
***You still have a couple of weeks to donate to 'Mabel's Able.' If you'd like to donate another way other than paypal, please email me for other options. We are so grateful to be a part of something so much bigger than us and are thankful that you are getting involved alongside of us. Thank you for that!