4 weeks ago I got a message from a friend named Tammy who has an NGO here in Ghana. I hadn’t talked Tammy in a while, so her message was a bit of a surprise to me. She said she had been following the journey of The Treasured Ones and knew that we cared for abandoned and vulnerable special needs children. Tammy said that a child was placed in her NGO’s care 3 months ago, but they could not care for him long term because their home was full and the baby had special needs and was very sick.
A few months ago God gave me a vision of a Ghanaian child with down syndrome reaching up towards me and calling out “momma, momma” asking to be picked up. I began praying fervently for that child in my vision.
I asked Tammy what the baby was diagnosed with and she said a hospital in eastern Ghana thought he might have a few different special needs, but most likely down syndrome. This was no surprise to me. The minute Tammy messaged me, I knew this was linked to the child in my vision. God planned. God knew. God orchestrated. Tammy said the baby was having trouble breathing, had high fevers, and wasn’t eating. I knew the situation was urgent. We needed to get him to Kumasi right away.
God moved hearts and government officials into action, and 3 month old baby Justice was driven 8 hours from south eastern Ghana to Kumasi with 48 hours of receiving the first message from Tammy. (You can read Tammy’s side of the story here)
Justice arrived and we rushed him immediately to our children’s hospital because he was in critical condition. He spent the next 10 days in the ICU ward of children’s hospital. We began meeting with different pediatricians and going through testing to see exactly what was happening inside J’s little body. The news we received was devastating: Justice had two major heart defects that were common in children with down syndrome, and these type of defects could not be fixed in Ghana, and therefore were fatal. His list of complicated diagnosees continued to grow longer each time we saw another specialist.
But I do not want to linger on J’s diagnosis, I want to focus on his impact. Justice was in our care for 24 days. Those 3.5 were some of the hardest, yet most beautiful, weeks we have had together as a Treasured Ones family thus far. Meghan (Treasured Ones assistant director), Lauren (Treasured Ones summer intern) and myself spent at least 300 total hours in the hospital running morning, afternoon, and night shifts so one of us was always by J’s bedside tending to his every need. We administered medicine, wiped up vomit, patted with cold sponges, adjusted oxygen cannula, changed blown out diapers, rocked, cuddled, soothed, sung, and prayed over him while he fought for life. We checked oxygen saturation levels, counted breath rates, took temperatures, and measured feeds. During that one on one time in the hospital and at home, J’s personality began to shine, despite being so sick and constantly in pain. He had the cutest face and the squishiest of cheeks. He was squirmy as a worm and loved being held on your chest. He cooed and babbled quietly, yet had an ear piercing cry. Justice dug his way deep into my heart in a way that I didn’t know was possible. Loving a child with a condition that will end in death is the harshest of realities. I knew that J would pass away due to his heart defects and other conditions, yet I selfishly begged and pleaded with God to allow him to stay on Earth for one more year, one more month, one more day.
Justice taught me that you must love with all you’ve got and to cherish the time you’ve been given. God knows exactly how many hairs were on J’s head and He knew exactly how many breaths J would take in his life. He had them all counted. Nothing was hidden from Him or out of His sight. I rested on those facts as I watched Justice struggle to take another breath, always wondering if it would be his last. I clung to Jesus’ promises as more and more medicine was being pumped into his body to try and help his organs work. I didn’t want to have to say goodbye. I didn’t want to let go.
Justice was in the ICU of our children’s hospital for 10 days before he was released into our care. He spent 2 glorious weeks with us at home getting spoiled with snuggles and constant love by anyone who came to visit us. One morning we noticed that his breathing had become a bit labored and he had a bit of sniffle, but thought nothing serious was going on. We called J’s pediatrician who said we should bring him into the hospital just to get checked out. Meghan and Lauren headed out the door as I was handling some issues at the house. We thought they would be gone for a few hours and come home to make pizza for dinner. The situation escalated quickly as Justice began crashing and was quickly admitted to the ICU. The next 48 hours were the longest and shortest. A lot was a blur in the midst of making split second medical decisions and weighing all options. J was transferred to a larger specialist hospital to pediatric emergency unit, and then eventually to the PICU (Pediatric Intensive Care Unit). I replay those 48 hours over and over in my head, going over every test result, every medication administered, every specialist’s words. I tempt myself to think “what went wrong?” “what could we have done differently?”. But nothing went wrong. Absolutely nothing. Jesus was calling Justice home and there was nothing us fleshy humans could do to stop it. This was God’s timing. Even in the hours before J passed away, I was praying and begging and searching for miracles for healing on Earth. When it didn’t look like those miracles were coming, I prayed for peace so powerful that it was seen and tasted and felt. I can recount every minute of the hour leading up to Jesus calling Justice home. And God was present in each of those minutes. The PICU was chaos; doctors and nurses running everywhere, needles and syringes were flying, yet all was calm. I was in tears, yet not worried. For I knew where Justice was going. He was going Home. Eternity was so close I could touch it. And I wanted to go with him. I held his hand, kissed his forehead, and whispered: “We love you Justice. You were never unwanted, not even for a second. It’s been such an honor to love you. You have been so brave. Go run and dance with Jesus my sweet boy”. Justice peacefully passed away a few minutes later. All was still and silent in the PICU. Tears rolled down the staff’s cheeks. And the heavens rejoiced. J received a brand new heart in that instant. One without holes and defects. A perfect heart. Jesus whispered to Justice “I am so proud of you. You have changed so many lives in your short 4 months of life on Earth. Well done my warrior. Welcome home my son. Welcome home Justice”.
“For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth. Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be.” (Psalm 139)
We wanted to honor Justice’s legacy by giving back to the place that cared for Justice during his last days of life on Earth. The PICU (Pediatric Intensive Care Unit) of Komfo Anyoche Teaching Hospital in Kumasi, Ghana is the only PICU in West Africa. They are equipped with life support ventilators, top of the line medical equipment, internationally trained intensivists, doctors, and nurses. I have never, in all my years in Africa, seen a medical facility like the PICU. They save the lives of many Ghanaian children who otherwise would have tragically died. They care for their patients with love, respect and compassion as if it was their own child lying in the hospital bed. We want to make a donation in honor of Justice to the PICU so they can continue to provide the life saving care that was provided to Justice. It costs only $40 USD per day per child to be in the PICU. We aim to raise $2,000 USD which will allow them to cover the medical bills of families who can not afford it. You may donate through PayPal here. If you want to read/see more about the KATH PICU, you may do so through their NGO partner, Little Steps Foundation.