Learning to see

Jessica Merrill Paulraja

aBSN, Nurse Educator in Northeast India

I moved to India with eyes wide open, or so I thought. I came with a nursing degree, some tropical medicine training, and passion for the “outcast”. However, I defined “outcast” according to my own perspective. And through that defining, ironically, I cast others out. I came with a desire to serve young girls without a family. I loved them as my own and made a life with them. However, when that season came to a close and Abba God brought a little boy disfigured beyond imagination into my arms, I could have never imagined that this is why He called me. Allow me to explain with a bit of background.

I first came to India in 2006 and moved here permanently in 2009. I was working with at-risk children in Delhi until 2011 when I got married and joined my husband who was working as a psychiatrist in Assam, India. We both had dreams (which I now call “delusions of grandeur”) to change the world. My husband dreamed of bringing change through revolutionizing mental healthcare across North India. I had worked as an obstetrics nurse and had dreams of seeing radical changes in women’s health across India.

These career plans did not include children for “at least 5 years.” However, the night before our six-month anniversary, a little boy was born in the hospital in which we were working. At birth, he did not have eyelids nor a fully formed mouth. He had an absent palate, no fingers, and his legs were fused together. This was due to a genetic condition called Bartsocas Papas Popliteal Pterygium Syndrome. His birth family was overwhelmed with grief at his condition, and due to the heavy shame that their community placed on them, they abandoned him at the hospital. My husband and I met this little boy and were overcome with a desire to see someone care for him. However, we did not think we were at all a part of that plan. I would go to bathe him each day and we would play relaxing piano music for him in order to soothe him when he was upset. We prayed and asked hundreds around the world to pray for his life and that God would provide a home for him.

Meanwhile, my husband and I had been doing a Bible Study on the book of Romans. Before this little baby was born, we had read Romans 8:15 that says, “We no longer have a spirit of fear but of sonship, by which we cry out ‘Abba! Father!’” This verse really impacted us as we realized the fact that God, in His great love and perfection, loved us (broken people) so much that He found a way to adopt us into His family. He did not leave us as orphans but made a way for us to come to Him. My husband was reminded of this verse a few days after this little baby was born and came home exclaiming, “Jessica, we WERE that baby. In our spiritual state, before Jesus rescued us. . . we were just like this baby. We were orphans, we were disfigured by our sin, and we had no hope, but God in His great love adopted us and made us His children. How can we look at this little boy and deny him the incredible love that God provided for us?” This truth is what led us to adopt this little boy and name him Adam. We named him Adam after the first man, created in God’s image, because even though his body is broken and unformed, we believe God still had created him and had a beautiful purpose for his life. Psalm 139:16 says, “Your eyes saw my UNFORMED body.” We may not understand why Adam has to suffer with such a disfigured body on this side of eternity, but we can rest assured that God saw his unformed body, and God gave him life.

One question that was on my heart and mind a lot before we officially adopted Adam was, “Can I raise a dying child?” The doctors who diagnosed his condition said he had only 2 months to live. Could I raise a child knowing that he was dying? I felt as though the Lord responded to that question with,

“Jessica, you too are dying.”

“. . . Your husband, he is dying.”

“. . . Each of your future children. . . Once they enter the world, their days are counted, and you do not know what tomorrow holds for you or anyone you love.”

I do not say this in a pessimistic, foreboding way, but with the scriptural understanding of reality that all flesh is like grass, here today and gone tomorrow. Just because Adam has a medical condition that labels him more “fragile” than others, he is no less deserving of life, love, or a family.

To make a long story short, Adam has far surpassed initial estimations and prognoses. He passed 2 months and is now an active 4- year- old boy. He has two little brothers and amazes us daily with all that he can understand and do despite the limitations his body places on him. He has had a total of 15 surgeries in the US, thus far, and we anticipate a few more surgeries and years of therapies.

Adam has learned how to crawl and walk in order to get around. His malformed legs do not hold him back by any means. His absent fingers have never interfered with him picking up anything. He loves to sit in my lap and flip pages in books while I read out loud to him. He plays peek-a-boo and loves to find his shadow. He has two little brothers who tend to drive him crazy, but he is starting to show more affection towards them as time passes. Adam has brought change across India and the world. His life has spoken to millions of people, even though he has never spoken a word. His story has traveled across nations, even though he has no feet.

We have been amazed at the way that God can take one little life initially seen as a curse and make such a beautiful story. My husband and I never imagined that we had a role in the disability community; but, God has shown us that we ALL have a role in it because there is no such thing as a disability community. We are all in this journey, called life, together. There is no “us” and “them.” No matter what our mind or body is capable, we have been called to care for one another.

We serve a God who can make beauty from ashes and who takes the foolish things of the world to shame the wise. He is in the business of restoring broken things, and we are the ones blessed enough to be on the journey with this great God. Although these years have been wrought with tears, fears, and exhaustion, they have been hemmed in with beauty unimaginable to our mortal eyes. God has used our Adam to take our eyes off what is possible with man, and He has fixed our gaze heavenwards onto what is only possible by a mighty God who sees brokenness as beautiful.

I never imagined having a child on whose behalf I would conduct research and find places that could accommodate him. Before Adam, I would talk all day about advocacy but not advocacy for people who had different abilities or for those with physical, emotional, developmental, or neurological limitations. I was blind to that community of individuals. Disability scared me, and it did not seem exciting. Then Adam entered my life, and I cannot imagine a more worthy life than as a momma or friend or nurse, advocating for all needs of the differently-abled because Jesus advocates for me.