Enjoy this blessing

OMG!  41 days and a wake up before I meet my little girl.  So crazy.  We are so not ready but at the same time, bursting to meet her.

Right before we moved a 3 crazy weeks ago, we got the chance to meet with M, a 2 year old CDH miracle and his mom, L.  (L has asked us to keep her anonymous online for some very good reasons).  M had his liver up, spent some time on ECMO and had some really rough days.  We sat and listened to L tell their story of pregnancy, birth, surgery and recovery and very clearly understood that L and her family had been through hell.  But it was impossible to not notice as M played, ate loads of pizza, giggled and proudly showed off his surgery scar - how could this perfectly normal little toddler ever have been so sick? 

Needless to say, we were so encouraged and overwhelmed getting to spend the day with M and to think that one day, we may be blessed enough to introduce Maddie to an expectant CDH family and give them just a little bit of hope and encouragement. 

L passed on one piece of advice that I've been trying to hold onto and make my new mantra - to enjoy Maddie as the blessing she is.  Knowing that we are expecting a sick child is overwhelming.  It is really easy to get focused on all of the bad things that could happen.  It feels really important to make sure people know this is not a normal pregnancy and that Maddie won't be a normal baby or normal child.  Talking to other CDH parents, we all feel like educating the world of this horrible defect is our new life's mission.

So when someone runs up and rubs my belly (especially students) and get excited and happy and ask how many more days until she arrives, my first instinct is to lay it all out for them.  I want to tell everyone how scared I get and that we will have to wait days, maybe weeks, before we can even hold our little girl.  That when they see pictures of her as a newborn, they'll have to work hard to ignore the wires and tubes and bandages in order to see her beautiful little lips and eyes and cheeks. 

But every time I am able to overcome that instinct and feel the excitement of almost getting to meet my little girl, I'm able to remember that Maddie is our blessing not our burden.  That she will be perfect, even if she's not perfect medically speaking.  That I have every right to show off pictures of her and brag about her and am under no obligation to explain or even notice when people get too focused on her tubes or her scars. 

God knew exactly what He was doing when He gave us Maddie.  He has given her a testimony of love and hope and heartbreak and endurance and fight and she isn't even out of my tummy yet. So we are going to enjoy her and not let CDH overshadow Maddie - its just part of her journey, not the journey itself.