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Down in The Valley......HE is still here!!

In Memphis it is currently dark, wet and rainy! Much like the funk I find myself in today....and honestly, for the past week or more! Ya know, this journey has been full of JOY around every corner, yet it seems as though once I get around that corner.....sadness, fear, doubt, anger, and defeat seem to be lingering in the straight away!

Ever since our dreaded diagnosis it seems as though I have been holding tightly to the love of my Savior...and succeeding, however, today I feel so defeated and the lies from the enemy are booming loud and clear to the point of no escape!!! I have told myself all along that His plan in PERFECT and though I believe that with every ounce of my being...there is still the HUMAN part of me....the dark place that we as humans have to FIGHT daily...even minute to minute! I feel slightly insane for the craziness going on in my head and I am almost at a loss for words. I guess PURE GRIEF is the only thing I can say to even try and  begin to explain what I am dealing with! 

For the past three years our Dalton has really been DALTON and though things looked a little different.....he was still able to do 99.9% of what he wanted to do. I am assuming that due to our rapid decline in the past few months.....even weeks.... this rapid tsunami of horrific emotions has wiped me out and I am now left here to pick up the pieces for not only myself.....but more importantly, Dalton and Marissa! I thought I had prepared myself for all of this and I guess I expected God to physically hold my hand and carry me through this hell. I know He is here with me and I know what He promises me, but man oh man.....HOW DO I DO THIS!  I am so exhausted that I find myself not even wanting to navigate my day to day life. It is mental exhaustion...emotional exhaustion. My mind will NOT rest and the hundreds of questions and scenarios are playing out in my mind constantly!! 

My precious little man is becoming non-ambulatory....I HATE those words!! Bless his little bones, he is needing me to do everything for him! I guess I never thought for a minute that I would be so selfish to be tired of hearing him call my name!! And then I feel like total SHIT when I snap at him.....yet I feel as though I am running in constant circles....accomplishing NOTHING! Like I was telling a close friend of mine.....I am becoming the mother of an infant again. Yet, when you are a new mom....as exhausting as it may be.... there is an end coming sooner or later. In my situation....THERE ISN'T AN END....not an end that anybody would want!! Who wants to see their precious little man loose ALL of his independence.... slowly... agonizingly!!! I had a mother of a DMD boy who was never able to walk tell me that she felt what I was dealing with was much worse because she never had to see him loose something he once had. I didn't really understand that until now....and I have to agree! It is torture!! 

As I am writing this I PRAY that God will allow this blogging to rid me of all these toxic thoughts and feelings...and at the same time I hope anyone who is reading this may be BLESSED....somehow.... some way! I am so thankful for this website and for God allowing me to purge all these horrible lies!! I am more than aware that all of these fears and thoughts are what satan is hoping to devour me with! And I can assure you that he will NEVER have that much power over me! Though I have been in a dark place recently....I pray God continues to lead me through these dark valleys......for it is such a gift to step that first foot out into the LIGHT....and the LIGHT is always just on the other side! 

I watched a video that a friend sent me just yesterday! David and I loved it so much each of us posted it on our Facebook. It was about finding a God of mercy in the book of Job.....and it was incredible!! It talks about Psalm 11:5......God tests the righteous.... I find such comfort in this and just like my life verse...1 Peter 1:3-9 (emphasis on 6-9) I know I am being refined to prove genuine!! 


3 Praise be to the God and Father of our Lord Jesus Christ! In his great mercy he has given us new birth into a living hope through the resurrection of Jesus Christ from the dead,
 4 and into an inheritance that can never perish, spoil or fade. This inheritance is kept in heaven for you, 5 who through faith are shielded by God’s power until the coming of the salvation that is ready to be revealed in the last time. 6 In all this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. 7 These have come so that the proven genuineness of your faith—of greater worth than gold, which perishes even though refined by fire—may result in praise, glory and honor when Jesus Christ is revealed. 8 Though you have not seen him, you love him; and even though you do not see him now, you believe in him and are filled with an inexpressible and glorious joy, 9 for you are receiving the end result of your faith, the salvation of your souls.

Like in the video https://www.youtube.com/watch?v=9FZ5uM_YfB4 I welcome this hell I am in because I do NOT want God to leave me alone!! I hope that even in my darkest hours...that I am able to bring hope, joy, and love to those I encounter!! I never want to be a Debbie Downer and I do NOT want to be self absorbed.....as hard as that is under my circumstances! I want everyone to know that no matter how much I HATE Duchenne Muscular Dystrophy.....I will ALWAYS love my JESUS and I will never doubt that His plan is perfect!! It may take me the rest of my days on earth....and even then some to understand that perfect plan....but I do not doubt it for one second! I also know that sometimes He needs things to get really bad before He can throw that MIRACLE in the plan so that NOBODY can deny that the One and Only, God the Father healed my baby!!! I welcome that healing and I know He can do it!! The human mommy in me just wants it RIGHT NOW!! Before Dalton loses all his strength, before he can't walk anymore, before he looses the use of his arms, before we have to come up with the tens of thousands of dollars to remodel the house and buy a wheelchair accessible van when we are still living week to week, before his heart and lungs are weakened, before something happens to David or I, etc. The list goes on and on.....it is grueling and it is a lonely place....however, I pray NOBODY has to ever understand this type of pain! 

I know we are beyond BLESSED....regardless of our many obstacles.....we are BLESSED! There are soooooo many others suffering much more than this and we are not guaranteed tomorrow. I really try my best to hold on to those truths....yet...I am a human and I only know my pain....my trials...and thankfully my GOD! those living in this world without a personal relationship with Him....oh how my heart breaks for you! For even with this monster called Duchenne living and growing rapidly in my own home......it is because of HIM that I am able to LIVE ON PURPOSE.....and at the end of every day I can thank Him for all that He has done, all that He is doing, and all that He plans to do!! His work is not finished in Dalton....and it's not finished in me either!! God, Thank You for not leaving me alone!!!!
Let me honor and glorify You in all that I do!!! 

In Him,
Stacie