I get tagged in them on Facebook, I get them sent to me as pins on Pinterest, and I have them said to my face in reaction to learning about my son. These things are said to me as compliments and encouragements. I am well aware that people are dumbfounded when hearing about Duchenne and learning what horrific things this disease is going to do to my son and sentiments like the ones above are the only things they can manage to squeak out in reply. And let's be honest - those phrases are INFINITELY BETTER than most of the crap people blurt out. One day I will do a "You Won't Believe What People Have Said to Me" about my son post. I am definitely thankful for the responses that are positive and loving like these three seem to be. I get the intentions behind the words. I do. But these phrases are so very FALSE.
~God only gives special children to special people~
Since when does God only give children with special needs to "special" people? Children with mental and physical issues show up in families who can't handle them ALL THE TIME. How often do we hear about children with disabilities who are abused and neglected by their families? What about Tracy Latimore, who was killed by her own father because of her cerebral palsy? What about Joshua and Carlina Pinkerton, who kept their disabled brother locked in a cage with a litter box? Are the Latimores and Pinkertons considered "special"? If so, then PLEASE stop putting me in that box! This one is such a backhanded compliment. It's like saying I deserve a handicapped child. No one deserves to have a son with Duchenne. Sure there are terrible adults in the world who deserve to suffer in the ways that Duchenne will cause Andrew to suffer (child molesters, etc), but revenge is for the Lord and no child deserves to be born with it.
~God gives his hardest battles to his strongest soldiers~
No. Nooooooooonononono. If this was true, no one would ever give up and walk away from their families because of their inability to come to terms with a loved one's diagnosis. No one would ever become an addict or alcoholic to numb the pain of watching their children suffer. Did you know that in marriages where a child is born with special needs, the likelihood of divorce is double? There are plenty of "soldiers" who are not strong enough for the battles these children bring. I know too many families where one parent has run away or is actively denying there is anything "wrong" with their child because they are too weak to pull on their big kid chonies and face the life that comes with a diagnosis to believe this one. In fact, I have to make a conscious effort not to laugh/scoff whenever this one gets thrown my direction.
~God will never give you more than you can handle~
WRONG AGAIN. God will absolutely give you more than you can handle. What this sentiment should actually say is this:
God gives us PLENTY more than we can juggle on our own. Our plates get more and more filled as life goes on and often, we spill those plates all over the ground. It is up to us to turn to the Lord so that He can get us through. We are not omniscient. We are not more powerful than our demons on our own. God is.
Philippians 4:13 does not say "I can do all things." Nowhere in the Bible does God say "Go on, you got this one all on your own. Jump in there, bro." Instead, He says that He will go with you. God will fight our battles and handle our lots for us.
Psalm 55:22, "Cast your burdens upon the Lord and He will sustain you."
Matthew 11:28, "Come to me, all you who are weary and heavy laden, and I will give you rest."
Isaiah 46:4, "I am He. I am He who will sustain you. I have made you and I will carry you. I will sustain you and I will rescue you."
It's up to you to turn to Him and cast your burdens upon Him. It is not me, but God through me that I am able to keep going while knowing all too clearly what Duchenne is going to do to my son. It is not because I'm "special" or stronger than or in any other way more deserving of a child like Little than any of the rest of you; I just got one. What I choose to do with him and his disease is on me. I can flounder around and live in distress over things to come or I can call upon the Lord to quiet my soul. I choose to lay my son's disease at His feet and rely on Him to take care of us. I sleep soundly at night, knowing that when the DMD robs Little of his life, God will make him whole again for eternity. This life - this battle- is temporary. What is waiting for us on the other side - THAT is eternal.
So instead of tagging me in every facebook or pinterest pin that calls me out as special or deserving of a child with special needs, think of me when you see ones like these, please!
Oopsie! How did that one get in there? *smirk*