Rare Disease Day 2017

#rarediseaseday2017
   Hey there, new Mama. Pleased to see you out in the sunshine.  Greetings, new Daddy. You’re looking so proud. 

    I see you there, holding your new baby boy. There’s a tiredness in your eyes that is universal to new parents, but there’s something more, I know. I can see that what’s in your eyes goes far deeper than “normal” exhaustion and I want you to know a few things before things get crazy. Before tired seeps into your bones and makes you unsure if you can do this. 
  

 You’ll have a few months of what some call the “honeymoon period” in our metabolic community, and what a blessing that will be. You’ll have time to get to know your sweet boy, learn his personality and quirks, you’ll memorize the way his face scrunches up when he’s angry or hungry, and the exact length of his eyelashes as he sleeps. You’ll become so comfortable with the weight of him in your arms, and the routine of life with a newborn, you may forget- for just a moment -that your baby comes with something more. 
 

  I hate to tell you this, but I know you know. It’s what I see in your eyes. The knowledge. The pain of knowing…that one day, everything you’ve dreaded will come true. Everything you think you’ve prepared yourself for will happen and it’s almost exactly like racing out, bags in hand and plans in place, for a new baby on its way…only you’re racing out the door to save a life. You’re racing the clock, the metabolic system awry inside of your precious baby, and you’ll never feel quite THAT level of panic again. The unique, blinding panic of the first time you think “this might be it” and you tear off to the hospital. Every ounce of your soul will be dedicated to getting your baby help. 
   

And new Mama and Daddy, it’s not going to get easier as this happens again….and again. You’ll never get used to watching your child surrounded by medical professionals, as the “honeymoon period” fades into the background of your life like a vapor. 
   

But I want you to know that there’s a fire in you that will never extinguish. There’s a strength inside of you that will never diminish. There’s a love inside of you so fierce, your child can FEEL it as you stand aside and watch him flown away in a helicopter that very first time. 

You’ve got this. 

You do. 

You don’t think you do. You don’t know if you can, but you WILL. 
   

And Mama, you won’t do it alone. Your friends will come together to replace your lost income and sit with you while you wait, wringing your hands and unable to think of anything else in the world, until those labs come back. Your church will have special services to pray for your family and provide you meals. Your medical team will hold your hand, or put their arm around you, and they will save your baby’s life. They will stabilize him and days later they’ll hand him back to your husband, trusting him to take that precious miracle home again saying, “Good job, Daddy. You did exactly the right thing bringing him in.”
  

 You’re going to be years and years into the journey, and one day you’ll find that you doubt yourself a little less. You’ll find yourself speaking up more. You’ll find yourself educating. Advocating. You’ll find doctors and nurses that support your ideas on how to help your child. You’ll find researchers that want to cure your boy. You’ll find a community of families that are traveling the same path and they’ll lift you up too. You’ll find that you can BREATHE. 
   

You’re going to be okay. You’re going to have to make hard decisions and not everyone will understand them, but someone will. Find that person. Don’t hide from support. 
 

 Dad and Mom, don’t doubt what you’re capable of. Never feel guilt for what your genes shared with your baby. Never give up being his voice. Never stop believing that there IS a future. 

Never ever ever give up HOPE. 

You’ve got this. I promise. 
#citrullinemia #ureacycledisorders #rarediseaseday

2 thoughts on “Rare Disease Day 2017

  1. It has been Quite the Journey for sure! The many decisions you’ve made, heart wrenching, have brought you through many storms. I will remain steadfast in my belief that, with God’s Hand, Corrigan will thrive! A way will be made for him to heal!

    Liked by 1 person

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