When I worked in the hospital, my very first patient was a man who had a severe childhood injury. Complications from that injury eventually led to surgery that left him handicapped beyond anything I could have imagined. I felt pity for his loss, anger for his suffering, and grief for missed opportunities and experiences. Questions kept pouring through my head…
I questioned if his life was really worth living.
I know. It is not my place to judge, but sometimes you can’t help thoughts that well up. I ended up speaking with my dad about it, a very wise man. He said something I will never forget.
“Kim, every person, EVERY person, is made in the image of God. It is this fact that makes us valuable and precious.”
That was before I had a special needs baby. When we found out that JAK had Spina Bifida, all those uncomfortable, faith-challenging thoughts came back in full force. Why was JAK made “flawed?” Why would God allow suffering in someone so very small and helpless? Would his life really be worth living? Then the Lord started to show me some scripture…in Jeremiah of all places. No, it wasn’t Jeremiah 29:11, I had even forgotten that verse was in Jeremiah! Nope, He showed me Jeremiah 1:5,
“Then the word of the Lord came to me, saying: ’Before I formed you in the womb I knew you; Before you were born I sanctified you; I ordained you a prophet to the nations’” (NKJV).
God calls our children to a purpose even before they are born. He made them, and He knew exactly how JAK was formed. Our children are valuable and full of purpose. Even those kids who have special needs. Maybe especially for those kids. Long before JAK came into this world, I had to surrender my sweet son into the hands of our Gracious Father. JAK’s life would never be in vain, whether he lived a moment or a million years.
JAK at 18 months.
I want to share a few stories that have showed me about the preciousness of our special needs children:
I know a family whose firstborn baby was diagnosed in utero with Trisomy 13. The couple decided to carry their son to term, even though the prognosis was terminal. Their handsome little man lived only for a short while after birth. You know how daddy reacted? He said,
“‘Thomas’ wasn’t created for this world…he was made for heaven.”
When JAK was born, he was placed in a bassinet in the NICU next to a beautiful little 4-month old baby boy, “James.” He had a shock of wild, curly black hair and sweet round cheeks. His mother couldn’t come every day, but when she did, she would lean down and whisper lovely things into his ear. One day, my husband was with JAK and I was away resting. James’ mother was reading scripture over her little son, and my husband spoke up and welcomed her to read it a little louder. Well, she got between the boys’ beds and began praying and reading scripture over the both of them. When she was done, she bent over her baby’s curly head and said,
“James, you did that. Because of you, I got to do that.”
Shortly after we were discharged, James left this world to be with Jesus. James had a purpose. He certainly blessed our life, and I will never forget him.
One more story I would like to share. This is a story about Kayli, a sweet little miracle who has defied the odds by being a 4-year-old with Trisomy 18, a diagnosis that is “incompatible with life.” Read about her story here. When her mother was advocating early on for Kayli’s right to survive, she wrote this about her experience:
“I started asking everyone around Kayli to ‘take something from Kayli’. There seemed to be an abundance of medical professionals and people surrounding her, who wanted her to die. Instead of fighting them, I started telling them, ‘Kayli is here for a reason. If you really want her to die…then you need to take something from her. Take medical knowledge of Trisomy, take a stronger faith, take love…take…something… so she can fulfill her purpose.’ I left it all in their hands. Every person who met Kayli, was told to take something from her. After the odd looks, I would explain her mission. She is a child of God, and is with us for a purpose. All I ask, is that you Take Something From Kayli. Take something from her, so she can serve her purpose, have eternal peace, and leave an everlasting testimony of God’s love for her and all other ‘imperfect’ children. Take Something from Kayli…. now I ask, have YOU taken something from Kayli?” Source: http://trisomy18.blogspot.com/2013/04/kaylis-first-year-of-life.html
The fact is that God NEVER makes mistakes. Each child was created with a purpose. They are fearfully and wonderfully made, and they reflect the glory of God.
“I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.” Psalm 139:14 (NIV)
I would encourage people to check out the book, Just the Way I Am: God’s Good Design in Disability by Krista Horning. It is an incredible resource for any kid questioning how God made them.