One of those days when the weight of reality is sitting so heavy on my chest..... Causing me to gasp for every breath. This morning I woke to a post about a fifteen year old dying from this dreadful disease that consumes my Daltons body. It has rocked me to my core!! All of the lives lost hit me.... But this one was different! Maybe because I can see my Dalton in this young man. Maybe his beautiful rosy cheeks slightly puffy from the steroids look like those I am blessed to smooch on each day. Maybe it is that gorgeous smile in the photos of this hero just days before his death. Regardless of why... It has hit hard. As the mother of a Duchenne boy, the thoughts are so consuming. There are so many unknowns about the progression of this monster. Some boys walk longer than others... Some boys have strong lungs for a long while when others are effected early... Some have strong hearts while others fail far too soon... Etc. I hope and pray that Daltons heart and lungs (and all vital organs for that matter!) are NOT touched at all by DMD!! I pray for a total healing IN THE FLESH!! I am human, however. When I am slapped with reality like I was this morning... I have to ask the hard questions. I have to fast forward. I have to wonder what our fight will look like. Will it be a long one? A short one? One full of long suffering? A quick one? Is one better than the other? HELL NO! They all are an all consuming nightmare! One I wouldnt wish on my worst enemy. Most of the time we are able to fully live our lives with some normalcy many long for. (We owe that to our Lord and Savior!!) not the normal we dreamt our lives would consist of.... But our new normal since August 24, 2010. Today...ahh, not so much. Today I am back out in that ocean I find myself every now and again. The ocean where I am being tossed about by the large waves. The waves that are strong and powerful making it so difficult to get to the surface to merely catch my breath before going under again. All the while I know I am not alone. Few are fighting these waves with me. Some even fighting tsunamis ... making me thankful for my large waves. It is so hard.... So lonely... So exhausting... So overwhelming... So heart breaking... So frustrating... So consuming... So excruciating! I cry out for peace, strength, courage, wisdom, joy.....and so much more! He gives it to me. Always. In HIS timing. I have to write. I have to vent. For it allows these intoxicating thoughts to leave my mind. It allows me to take control away from the enemy and give it back to the ONLY WORTHY ONE! Yahweh has got this! HE is in complete control. Nothing surprises Him. Nothing scares Him. Nothing shakes Him. So why, oh why should I allow this disease to steal my joy? I am not!! I am going to get my baby dressed and head out with he and my best friend, David Al-Chokhachi! Dalton wants some Texas Roadhouse chicken tenders and fries so here we come!!! Thank you God for loving me.... The MESS that I am!! Thank you for allowing me to write....it is so freeing! I could NOT make this journey without it!! I already feel better!! Go hug your babies.... And each other! Life is PRECIOUS!! It is a GIFT... Dont waste it! BLESSED! LIVE ON PURPOSE!
Posted on: Fri, 19 Dec 2014 21:48:35 +0000