Friday, February 28, 2014

Rare Disease Day

Today is Rare Disease Day.  I never thought that this would be a day that would affect me or my family.  Last month I posted about or little Jack's diagnosis of Cystic Fibrosis. You can read it here. Since than we have done our very best to stay positive for our little man.  It hasn't been easy with multiple trips to the specialist, researching, learning about the disease, testing and therapies.  There are days I find myself feeling very down but I have no time for that. His therapies are just beginning and although he takes them like a champ I end up in hysterics.  There is just something unnatural about hitting on you 7 week old baby's back. His nebulizer treatments will begin soon and will continue for his lifetime. It's hard now especially knowing I have to go back to work next month. I want to be with him every waking second.  I want to hold his hand through it all.

We may not understand the hand we have been dealt in life but we have to play the game any way. It may not be what we expect in life but  it's beautiful none the less.

1 comment:

Erin @ Keep Calm and Sparkle said...

My heart aches for you guys! I can't imagine the pain and anger you guys are feeling. But Jack is still perfect in every way!! I mean just look at that adorable little face! Yes I realize there isn't a pic of him in this post- :) I will keep you all in my prayers and pray that the mild (whatever that may be in his case) stays this way. Keep your head up!! Hugs!

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