Cough Assist T70...the name of the first machine we have introduced to our sons in the daunting reality of what Duchenne is doing to them. We were told this machine is top of the line...so fancy...so wonderful, it can do amazing things, it can help in amazing ways. The handy owners manual comes in full color with the picture of a happy looking 80 year old women. Its great. Marketing gets a raise. It would be really great if it were for my mother, who lived a long wonderful life and was approaching her trip Home and needs a little help coughing and breathing in her final days...it would be great. But that IS NOT the case in our house. Because sadly, in my cruel reality, my mother is dead and died way before her body was even old enough to need this machine. In our house, this fancy, top of the line machine is for our 8 year old son, you see, Duchenne affects EVERY muscle, and the lungs are just that....a muscle. And Mason now is learning to use this fancy T70 because his lungs are no longer strong enough to freaking cough. MY 8 YEAR OLD is no longer strong enough to freaking COUGH. And this is just the first machine to be delivered.
If you are human, let that sink in for a minute. Just try to put your feet in my shoes in this moment.
There are no words.
I honestly am having the hardest time determining the words to write this post. I am feeling so sad, so angry, so bitter. I have also been wondering how some of these other families with Duchenne seem to be so much more hopeful, positive, and happy than I am. And then I realize they have only been diagnosed, alot of these kiddos are too little to even know anything different. The disease is a downhill battle. My boys were once little and living life too...the true sadness comes as they get older and can do so much less, and their bodies can no longer stand strong and as a mom, there is literally nothing you can do to stop it. Your time is just running out and you feel completely hopeless. You stare for hours at old pictures and then you stare for hours at these boys who no longer even resemble those pictures and you feel this pain in your heart, that you just want so badly to stop. But you cant. Hopelessness.
I also wonder if it would be different if we had "people"..."my people"...my mom, my dad, my sisters, my brother...best friends, inlaws, anyone really who could just look in my eyes and know what I needed, know that I am just NOT okay. Anyone who would just call to check on us...truly care how we are, what we need. I wonder often, how different life, especially THIS life, would be like if we just had "people". I cant help but wonder if all these other families are surrounded by "people".
And I would bet, they are.
Bitterness.
I really had hoped this blog would be more positive, but if it were, it would not be real.
BUT>Faith the size of a mustard seed is all we need...right?
Pray for a miracle please.