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As I walk into the hospital ward I can immediately here his cry. His unique, "I'm frustrated, do something about it." cry. (It involves a lot of huffing and puffing)

The nurse meets me and runs through the list of things she has tried to make him stop.

I reach his bed, "Babu, what is wrong?" I say.

(photo credit to Megan Kennedy/Sarah Briggs)

He immediately stops and moves his eyes towards the sound of my voice.

I scoop him up and as he sits nestled in the crook of my arm he grins.

My boy recognizes me.

This is HUGE.

And the warmth that runs through me has nothing to do with the fact that it is 100 degrees outside.

The doctor walks over, "This boy is severely delayed."

I want to scream, "Don't you see? He recognizes me!!"

Instead I smile and say, "Yes, sir. But you don't know how far he has come."

From a 4 pound 9 month old who had to fight and gasp for every single breath.

While having seizures every 15 minuets that have robbed him of sight.

And total body muscle spasms every 5.

To the boy who today discovered a new bubble blowing trick

If only he could stop laughing at himself long enough to do it.

My mama heart is bursting at the seams with blessings.

My miracle boy knows my voice.

It takes time but love is winning.

It always does.

New sounds require serious thought.
 P.S. I am a sucker for cross eyed boys with comb overs

 

 

...no matter how small

Dear Ella,

        As I write this you are laying fast asleep on my chest covered in a mound of blankets. As a listen to the little sounds you make in whatever dreams you are having, I cannot help but think about all the other Ellas the world never got to meet.

      You see you were born with something called Trisomy 18 (Edward's Syndrome). A chromosomal abnormality that causes a verity of severe organ abnormalities including the heart and brain. It also causes, among other things, you to be very tiny. You truly do not belong out in this world. It is too big and too cold.

      In The West, Trisomy 18 is a disease that doctors and parents can test for before birth. Doctors label it as "a problem" that can "be handled". They sight the list of facts that prove "the fetus is not compatible with life." Only 5-10% of children born with Trisomy 18 live past their first month of life and only 1% live to adulthood. A two months old Ella, it is true you are a miracle baby girl.

      I wonder how many other babies were labelled with this horrible disability were never given the chance to prove that they too were miracles from the moment they were conceived. I wonder how many mama's, by choice, missed the chance to marvel at their babies tinee tiny hands, feet, or my personal favourite, your ity bity ears. I wonder how many soft downy heads never were stroked as the babies fell asleep. I wonder how many parents lost out on the funny bewilderment at how stubborn a 2 pound 2 month old can be.

     I wonder how many of the hundreds of people who liked your Facebook photos Ella, would have rooted for you before you were born. Would they have celebrated life if you had been their girl?

      I admit the thought of caring for you has me a bit daunted. When Sarah akka first told me we had a baby coming with Trisomy 18 my first response was "Dear God, no". I knew what T-18 was and the odds babies with it have of survival. And every time I hold you I swear I am going drop you or injure you in some way. But, baby girl, as I look into your big brown alert eyes I cannot help but fall in love with you.  Ella, if you are willing to fight for everyday of your life, I promise I will be your fairy godmother and wave any magic wand I have to help you make it to the ball.

      Ella, you were created and chosen with a unique purpose to serve The Master. And since I have met you I now know the reason you were brought into my personal life. I have always believed in the sanctity of life and have always checked the box marked "pro-life". But I avoid confrontation like the pelage and have been willing to stay quiet so as not to "rock the boat" As I feel you start to stir against my chest I vow, cheena papa, to fight louder and harder for the other miracle babies in the world. The ones who, like you (and your namesake Cinderella) have the odds stacked against them with no one in their corner.

 

I am so thankful for the chance to meet you, you 2 pound world changer. May you always know the truth of your Hindi name "beloved". For that is what you are.

    

Yesu ne prema and so do I.

    

 

       

 

 

(photo credit to the ever talented Nikki Cochrane) 

 

A beautiful story of another miracle baby named Zion http://www.today.com/moms/baby-zions-mother-even-through-loss-we-are-anchored-hope-2D12099782

Difference Maker

Advocate

a person who fights for the cause of another

a term that nurses are taught to tag onto RN

Advocate

something I thought I was

turns out 

I really wasn't

I like the nice part of being an advocate. The getting more pain medication for a distressed patient. The switching of rooms so a lady can be with her husband. The sweet Hallmark nurse advocate.

What I have learned both in carrying for my children and from my fellow house mothers is that a true advocate has a strong passion and is not afraid of confrontation. Well, at least I hate confrontation with a passion.

I have learned that being an true and good advocate for my children is not always fun but it is always right. I have heard horrible things said about the kids by medical professionals, my fellow advocates, because my kids don't fit everyone else's definition of normal. I have had things thrown at me and more confrontation then I need in a lifetime. I have cried more tears as a real advocate then I care to remember.

My nurse friend Kim is an advocate.  She flew to India for a week to help me implement the World Health Organization's medication/feeding program for severely malnourished children. It is an intensive program that involves around the clock antibiotics (IV and oral), vitamins/minerals and feedings for seven days. My kids missed out on a lot of vital nutrients and are very often continually sick. The hope is that this program gives their immune system the boost it needs to fight infections.

I learned this past week that being a true advocate is, at times, exhausting. And it even means that sometimes I have to subject my children to pain. But passion is what kept me going. Knowing that my kids would be healthier, stronger and require less hospital visits got me up at 2am for injections and again at 7am for feedings. 

Advocates are also selfless, and Kim demonstrated this to me this week as she even let me sleep through one of the midnight medication administrations. She was a gift from God and a breath of fresh air that rejuvenated my tired nursing heart. I will never be able to thank her enough.

I am learning that advocates are not rude or pushy but achieve the best results when fighting with grace. Advocates, who advocate well, have a passion and a grace that is contagious. Sarah is an amazing advocate for her children and has the respect of all she comes into contact with when fighting for their absolute best. And since I have come here and started fighting for these babies I have had so many doctors and random (God placed) strangers wanting to know how they too can fight for these special children. Love and grace are contagious

I came to India with one goal, to love well. That means more then gushy hugs and kisses, giving the kids cookies or cuddles. Loving well requires a want, a passion, a longing for something better, for my children, at whatever the cost to my pride or my comfort.

Advocate

dictionary definition: "high priest"

The High Priest is also

my personal

Advocate

before the throne of

God Almighty.

How could I not

be a good true

Advocate 

for those He has

given me?

“If you do away with the yoke of oppression, with the pointing finger and malicious talk,  and if you spend yourselves in behalf of the hungry and satisfy the needs of the oppressed, then your light will rise in the darkness, and your night will become like the noonday. The Lord will guide you always; he will satisfy your needs in a sun-scorched land and will strengthen your frame. You will be like a well-watered garden, like a spring whose waters never fail. Your people will rebuild the ancient ruins and will raise up the age-old foundations you will be called Repairer of Broken Walls, Restorer of Streets with Dwellings.”  ~Isaiah 58:9b-12