Saturday, April 12, 2014

Dear New Mama of a Special Needs Baby....

First off....congratulations! People don’t often say that at first, do they? When they hear you’ve just had a child who needs lots of extra care, they clam up, stumble on their words and, not knowing what to say, they don’t say anything. So...I’m saying it.... 

This baby is a precious little person who will challenge the world to see what it’s made of.....what you are made of....Right now you might feel like it’s jelly that fills your insides, all quaking and weak. 

That’s ok. 

You will see, as your baby starts to fight and fight to do those things that come easily to other babies, like breathing...and eating...
that the fighter in you will start to emerge. 

“How can I give any less than this tiny sprite does with every breath?” 

You will surprise yourself. 

Previously unrecognized reserves well up from a deep river of Grace, running through our lives and only recognized when we figure out just how small and fragile life really is...
We need to be filled by some One other than ourselves, and fill He does. 

“How can I possibly get through this?"
 will be answered by tiny fingers, grasping yours...tiny lashes flickering, reminding of the unbreakable bond that says, “Indeed, this is MY baby...and WE will get through by walking straight down the middle of this road."

Look at your baby....what exquisite handiwork. Put your baby before the label, but do your research as’s a hard balance to strike, and one you will constantly be reassessing. 

Know that feeling intense grief, intense gratitude, and intense rage can all steamroll through in a flash. You won’t be the first mama to walk into a scrapbook store, a baby clothes shop or an infant food aisle and start sobbing when the reality of how your life is so different sweeps over you in tsunami size tides. Ride the waves, Friend. They always move back towards the shore, where you can  anchor yourself to the new reality of your life....and start to be ok. It will be ok. 

 You now have permission to eat as much dark chocolate as you want...and forget things like people’s names you’ve known for years, and your bank card’s PIN number when in line at Costco’s...and scream out loud if one more person sends you “Welcome to Holland” because, let’s get real.....this was never about a trip.

 This is about Sacred Work on Sacred Ground. It’s about epic battles in which you showed up carrying a pretty pink packed bag and came home with a gray suction machine and a baby who’s life depends on you keeping her airway open.  

 It’s about more tears than you ever, ever thought could fall from your cheeks.....but even more about a staggering, humbling amount of Grace that saves us all and props you up to carry on another day. 

It’s fierce and it’s beautiful and it’s called special for a reason.  

This life wears the sharp edges off of selfishness and self centeredness like nothing else. You will be a much better person for being this baby’s mama.

This side of special can be so hard. But Love is bigger than hard. 

 Love your baby.....and know you are not alone. 


  1. Hi Diana, Loved this post. Thank you so much. You might remember me from back in Indianapolis (you can find us at (friend of Bernice's) but anyways just had to thank you. Our number six is special needs, cerebral palsey and schinzel giedian syndrome (like Down's) It is an amazing beautiful blessing. Thank you for putting it in words. Also glad to see you on yarn along. I too love to knit :-) Blessings :-)

    1. sorry, the blessing being the mama to her :-)

  2. Hi Katie!! Thanks for stopping in!! So nice to see a fellow Hoosier mama here! :) I wish I was back in the old neighborhood, we could all hang out knitting!!! Thanks for reaching out and I’m off to read more of your blog!

  3. What a beautiful post. I am sitting here with the box of Kleenex. Could you submit is for publishing - I think it would be so helpful for many.
    Hugs to all of you.

  4. Hi Diana, this is a beautiful post -- I will bookmark it to share when I meet with special needs new mamas. I have so many of those baby-with-NG-and-oxygen-cannula type photos, too. Our experiences with our two medical-crisis youngest children have been some of the richest in our family life, mostly because as you said, God gave us so many graces, and allowed us to see that we were on sacred ground daily.

  5. Thanks, Willa! I have thought of you often as our stories and journeys have unfolded with our special little people who are now growing past those fragile infants into teens! I’m still sorta floored that Aiden is 15. Wow. I’m bracing myself for Pete turning 13 this month. Oh my.....And I agree, the Graces are truly amazing. God is good!