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Awkward Blessings

We had another 3 month check up for Dalton back on January 22nd! It went very well....his echocardiogram (ultrasound of the heart) showed his ejection fraction to be a little better than 6 months ago! This is wonderful!! As you can imagine....keeping his heart and lungs as healthy as possible has been a huge prayer of mine from the beginning!! I have prayed that God would allow his heart and lungs...and all vital organs to be untouched by the DMD so that when a cure is found.....he can live a very healthy and happy life!! Even if that is from a wheelchair! 

On that note....wheelchair....Dalton's doctor agreed that it is time to look into an electric wheelchair. This is a heartbreaking milestone as I am sure you could imagine! We play it up....kind of like getting a car... so that there will never be a sad time for our little man!! David and I have ALWAYS made sure that we are upbeat and constantly focus on the positive when we speak to Dalton. We allow him to cry when he gets sad....and even cry with him at times but we refuse to ever allow him to grab a hold of that "Victim" mentality. It does nothing but destroy you and keep you shackled to everything negative. In a sense, it gives you an excuse to continue unhealthy and sinful behavior...all the while ripping your soul away! So far, it seems to be doing great because we have the most incredible TWO children!!! They are not perfect...but incredible indeed!! 

Some of you may already know...most of you :), actually! Back in January we embarked on an extremely exciting and difficult adventure. After the advice from a sweet family member, we started an online fundraiser through! It took a little time, a lot of prayer, and tons of uneasy nerve to take the leap. But we did!

 Let me say here that we have been totally BLOWN away by the incredible and indescribable support, love and gift we have received.... not just in the past month since we started the fundraiser...but since the initial diagnosis on August 24, 2010. I am about to be completely transparent...surprise!! NOT! :) As a human, it is so difficult being "REAL" sometimes and I happen to be one of the most transparent people I know. It is getting easier, but I still never want someone to misinterpret what I am trying to say... to be think I am being ungrateful...etc. So here we go..

Since January 5th, the day we started the fundraiser, we have been on that emotional roller coaster all over again. I guess in reality, we have never gotten off. This just kicked it back into full speed ahead! I have always said that denial is a beautiful place to be is our human way of dealing with unpleasant and difficult trials. At times it can be a good thing....allowing me to not become so overwhelmed that I need to check into a psychiatric facility... but denial can keep us "STUCK" in many areas of life. When we are stuck.. we are subconsciously telling others whether our faith is genuine or not. In denial...we don't have to use our faith...we just stuff it and pretend life is grand. The good thing is... I am truly aware of all this and I make a huge effort to practice what I preach. Not always succeeding!! But I try. Well, this adventure has ripped me away from that denial and put me in the very front seat of the roller coaster where I am able to feel every turn, dip, loop-de-loop, and so on. It has added some crazy emotions and thoughts to the mix, as well. Things that I have to get out of my head so that I can give the power back to God and take it away from the enemy! 

Admitting that our Dalton is progressing faster than most boys his age.... when just 9 months ago he was doing better than most... is a harsh reality to face. It makes us question what we are doing wrong...what should we do next.... what can we do differently??  It is a battle of the mind 24/7. The fact is...there really isn't anything we can do to save our baby boy! We can't stop this giant from taking him....but GOD alone can! That is where we have to focus our thoughts and energy! So we try!! Then comes the unbelievable financial nightmare of caring for someone with a physical disability. It is ridiculous how much money is required and frankly, it sickens me! We have very few options and these folks know it so the price is jacked up! I am so proud of my husband who has been such an incredible husband, daddy and provider! Yes, we have made MANY poor choices in our life and there are obvious consequences from those choices. However, God still CAN and WILL use us... and where we are right now to minister to others. None of that changes the painful fact that right  now we do not have the means to provide our son with the things he needs! And that my friends, is NOT an easy thing to admit! Personally and definitely not PUBLICLY! So any and all pride was pushed aside... and the leap of faith was taken on January 5, 2014.
Here we are now a little over a month into it and we have been BLOWN away!! I say I can barely cry anymore because I have cried so much!! We have had folks donate $5.00 and others $1000.00's. They ALL mean so much and words can not begin to truly share how much! We are at a total of about $36,000.00 and are in shock!! I almost feel like I am about to wake up from a dream because saying that number feels insane!! I have NEVER imagined we would be a third of a way to our goal of $97,000.00 in just a matter of weeks, but we are here!!! We have been approached by some of the fabulous men of Hope Church (our church) to hold a Golf Tournament for our Dalton. This overwhelmed me because I was able to be a small part of a Golf Tournament for a beautiful little girl just a few years ago. The amount of work, sacrifice, and dedication I experienced then was overwhelming so when this was mentioned to me.... that they wanted to repeat all that work for us... it hit me like a brick and the tears have been flowing!  So here comes the transparency part that isn't easy to write!!!

We are so incredibly THANKFUL for every single PRAYER and GIFT we have received!! Nobody will ever be able to understand the gratitude in my heart!! But, with that gratitude comes a paralyzing awkwardness that is horrible!! Having to ask for help to simply take care of you own child's needs is a weird and crazy thing! I know that our circumstances are insane and everyone understands... but I have yet to become a graceful receiver. And, honestly.... I would much rather be the giver!!!! I guess I have to confess that much of this has stemmed from a few comments made to me since January 5th. I don't write this to hurt the individual/individuals who said it to me! I know they had NO idea it would hurt me and that was never their intention. I have been told that people are jealous of me and that they wish someone would give them money to take care of their children. WHAT??!! Are you freaking crazy!!! I would GLADLY trade places with you!! I want NOTHING more than to have a HEALTHY child who can run, climb, stand, bathe himself, play outside, dress himself, etc. I would give back every penny we have received and even my soul to heal him right now in the flesh so PLEASE don't ever tell me you are jealous of me and my circumstances!!! That is ludicrous!!! And what is even crazier is that I can NOT stop thinking about it!! Satan is constantly reminding me of this and it has made an already awkward time into a Mt. Vesuvius that I am unable to navigate! I know this is crazy and my few precious friends that I have talked to about it have reassured me this is not the way most people think! I just feel I have to let all of you know that as BLESSED as we have been through our entire journey with DMD......the relationship we have with Christ, the friends we have made, the perspective we have to LIVE ON PURPOSE, the financial gifts, the food, the toys, the etc, etc. NONE of this is something we have ever asked for!! Though we are much more BLESSED today in the spiritual sense......please don't be jealous of it! Please don't think it is for attention. Please don't think this is something I ever wanted to happen!!! Yes, the Jesus part is something I am sooooooo thankful for and wouldn't ever want to give up..... but if I am being 100% honest...... if I could have Dalton healed here on earth right this very second....I would probably sell my soul!!! This all may sound as though I am a walking contradiction to everything I have said and done the last 3 years.... but it is a fact!! I can't change my is what it is!! I can't change the past...I can only do my very best to make the BEST of what I have been given! Thankfully, I am at a wonderful place where I am able to trust HIS plan and rest in HIS arms! That is the truth! But.... I am still human and this is NOT MY PLAN! If it was.... it would look much different, I promise! However, I am BLESSED enough to have a loving God who loves me enough.....who loves Dalton enough.... who loves Marissa enough... and who loves David enough to send His only Son to pay the price for our sins so that when this world takes Our plans and dreams and tears them to shreds.... HE is there to pick up the pieces and make them into a beautiful masterpiece that we never imagined! One we would NOT have chosen for ourselves... but one we are THANKFUL for! And in the we are BETTER for! His plan is BETTER than ours....but that doesn't change the fact I am a selfish human being and I want my son healed TODAY!!  I pray that rather than people becoming jealous of us...that they can yearn and seek HIM in a way that DMD forced us to!! I never want to give up my relationship with Jesus Christ and I pray I never have to!! I know even in this awkward time of BLESSINGS, HE is teaching me and molding me! HE always is and I will be better for it....we ALL will be better because HIS plan is PERFECT! 

I Hope this made sense...I may have rambled, but I feel better!! ALREADY!! Back to the battlefield I go!! My little man is waking up as I type this!! I hear his morning moans....translation..."Mom, come snuggle!!"