Tears. The tears of the news that yet another girl with Rett Syndrome has died stain my face. It happens enough to fill a bathtub with tears and yet somehow, I really never get used to it. Every time it happens, I go numb. And I know it's my fight or flight kicking in to protect my heart from the pain of imagining myself in that dear mother's shoes. And then when I let them, the tears start to flow. The reality is that I, a parent of a child with this neurological, and sometimes, very unpredictable disease will probably outlive my daughter. And the thought of that is...unbearable. So I don't allow myself to dwell on that thought very often or for very long. But the news of another sweet angel passing on at the age of 25, 18, 10 or 5 years of age sends my fight or flight into overdrive. I can't imagine my life without her. She's such a bright light of joy and she's taught me so much about what is good and holy in this world. I feel like I have been so tremendously blessed to have her as my daughter and just like any mom, the thought of one day her presence leaving this earth while I'm still in it...ugh...I can't!

image_6483441 (1).JPG — Mother's Day 2016

My heart goes out to every mother who has lost a child. If even just the very thought of losing my child hurts this much, I can't even imagine the pain and grief over the actual loss of my child. But if I could make an assumption, I would assume that the pain is real and that it runs deep through every fiber of your being. I do not pretend to have any advice to share from experiencing that particular journey. However, I have experienced a deep sense of grief over the kind of life I expected to live and over the kind of daughter I always thought I wanted. I never got that life. And I never got that daughter. And I can't tell you why I was picked to live this "special" life, but I do know this. Even amid the pain and heartache, I can honestly say I have been truly blessed. Because it's through the difficult, unexpected moments that I have been able to see how God's Word is faithful and true. It's through this very unpredictable life that I've experienced the reward of literally trusting God with everything in me. Without Kaiya, I would be much more ignorant of God's grace. I would not know the depth of what unconditional love looks like. Probably of the most valuable assets to living this kind of life, is that I have learned to see life through the illuminating lens of eternity. I know earthly troubles can really, for lack of a better word, SUCK! However, when I began to lift my focus from only the here and now and place it on what is promised in eternal glory, my breathing somehow becomes easier. The heartache turns to joy. And the cliché phrase "It's all good!" becomes the mantra of everyday life, no matter what I see; no matter what we face.

For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal. - 2 Corinthians 4:17-18

You see, this earthly life is only a snippet of time. We live for one reason and one reason only, to glorify God. And yes, it's not all sugarplums and fairies full of feel-good moments. Which is why I'm so grateful for that reminder above Paul gave us in God's Word. Because we have something to look forward to that is waaaay better than what we see in the here and now. Within the perspective of eternity, my daughter has no limitations. Not. One. Oh, the joy that floods my soul at that thought!

So when those moments come where the reality of the not-so-great here and now rears it's heartbreaking face, it's this divine truth that rescues me from prolonged, immense depression and a state of dysfunction. That divine reality is the fact that God has already put into place Kaiya's victory over Rett Syndrome! (Insert shouting here!) OH MY GOODNESS!!! That sets my feet to dancing and transforms my sorrow to sheer elation! Do I still have moments of sorrow? YES! I am a human being full of emotions and can ugly cry with the best of them! But I will say this. Those moments of sorrow, though real and raw, do not have the capacity to overwhelm the powerful truth of God's Word.

Dear Friend, who may be experiencing extreme pain. Please know your pain is real. And do not feel guilty for being angry or bitter. I want to invite you to join me in seeing this temporal life as just a snippet in time and begin to value more increasingly the eternal glory which God has promised all who believe in His Son, Jesus. It doesn't completely remove the heartache of the here and now, but it does supply you with a heightened sense of victory over those things that cause heartache. With this powerful perspective, you at least have the upper-hand over the defeating, overwhelming agony that may darken your days. Most of all, it allows you to have the ability to continue to walk in the purpose which God has called you to in this life, in the midst of the trials and challenges. Pain, bitterness, and grief can be quite paralyzing. Ugh...I've felt that paralyzing emotional anguish. It's no fun. You feel like no one can possibly understand why you want to crawl under a rock some days and never come out. But allowing even just a smidgen of the light of this truth to permeate your soul makes you more capable of being used by God to accomplish your earthly assignment. And trust me, God is fully able to use everything: the good, the bad, and the ugly to make even the biggest celebrity envious.

And we know that all things work together for good to them that love God, to them who are the called according to his purpose. - Romans 8:28

Your life is truly beautiful, pain and suffering and all. Your tears will continue to fall; some will be tears of pain, and some, tears of joy and gratitude. My prayer for you today and every day is that no matter the cause of the tears, you would see your life through the eyes of Your Creator. He has called you to something much bigger than yourself; even bigger than your pain and, dare I say, even bigger than your own perfect idea of happiness. Walking in that divine calling grants you more peace of mind than you can imagine. I will admit that I still have those moments when I am caught off guard and I go numb and that fight or flight starts to kick in. But thank God for His truth. Thank God for his victory. And thank God for His power to overcome, no matter what!

Sometimes, I Go Numb.