In His Light

Lessa, my special needs child, was born with half a functioning GI tract and cerebral palsy. She spent 4 months in the Neonatal intensive care unit, endured multiple surgeries, therapies, and hospitalizations during her first three years of life. In order to survive, she relied on her multitude of medications , intravenous feedings (TPN) through a tube leading to her heart, and her special formula feedings fed through a stomach tube .

Many at CBC embraced and prayed for Lessa and our family. God answered. For the next 11 1/2 years, she was stable . She thrived and grew on her special formula so she was weaned off the intravenous feedings and the catheter was removed. The weekly visits to her specialist early in life soon became yearly follow-ups. Though far from "normal", her life (and ours) were blissfully routine.

Then she had a major set-back early 2005. She weathered through pancreatitis and pneumonia, had two major abdominal surgeries, numerous hospitalizations totalling over 9 months in the 3 + year span (one stint was 4 months ---- hmmm deja vu!) , multitude of procedures and tests and medication regimens and a reinsertion of an intravenous catheter for TPN to sustain her life while her GI tract attempted to regain its lost function. The hope was that she would only need the TPN for a few months .

The few months has turned into a few years.

The catheter line is a friend and a foe. It's been a lifeline for Lessa to keep her hydrated and give her nutrients. However, in the long term, the TPN can cause ultimate liver damage. In the short term, it is a foreign object in her vein and a magnet and safe haven for bacteria that are usually kept at a bay by our immune system. Several of her hospitalizations were necessary because the bacteria were winning (sepsis) .

To say the least, we want this line out, but can Lessa survive without it? Will God heal her? In the past for years, I've ventured into that dark cave of "What ifs?" "What if God decides our living on pins and needles, waiting for the next rush to the ER is the way it will always be? What if Lessa will always need the TPN and we have to accept liver damage and sepsis as distinct parts of her future? What if she grows resistant bacteria that won't respond to medications and hospital treatments? What if she doesn't make it one of these times? It's overwhelming , discouraging, exhausting, and it's scary. The dark blanket of uncertainty can paralyze and smother me.

What do I do? Get out of the cave! I have to get out of that cave and venture into the light of God's blessings. I have to look at how far God has brought her in the last four years, and in her whole life time. When she was born, her surgeon did not believe she would survive the night. Her neonatologist did not feel she would survive the week. Her GI specialist ( who is still her specialist today) did not think she would survive the year. And if she did, her neurologist thought she would be a vegetable. God has faithfully brought Lessa up to be a beautiful young lady who is as sweet as honey, tough as nails, has a heart of gold and a smile that will light up a room. She doesn't walk or talk or eat by mouth, but she can drive an electric wheelchair, use a communication device and a computer, and ...she is still alive.


In the last four years, each complication brought us farther away from the stability we knew...and perhaps may never go back to. But I know God answered our prayers in the past, and He will answer our prayers now. He is answering our prayers even daily. And He will, in His infinite wisdom and sovereignty, continue to answer our prayers for Lessa.


I'm not quite sure what the final outcome will look like. But God just wants me to worry about today...and not even that. I think He just wants me to bask in the blessings He answers with today! Praise God when she upchucks, and she tolerates the pedialyte and we don't have to use intravenous intervention. Praise God when we can go down another 3 ounces in her nightly intravenous infusion, and her heart rate stays normal and is not indicating dehydration. Praise God for head colds that is the cause for the fever and it is not sepsis. Praise God for the many steps of her daily medical care ...because she IS alive after surviving septic shock .


But If I stay in the dark wondering about the future, I'll miss these answers today. If I stay in His light (trust He will answer and actively look for His daily answers ) I'll be able to see the blessings as they unfold to me. And His faithfulness will grow my faith.