Back in the thick of our trials many months ago, I walked around a nearby lake, crying out in anguish to the Lord. He gave me this verse. Psalm 27:13-14 (ESV)...
I believe that I shall look upon the goodness of the LORD
in the land of the living!
Wait for the LORD;
be strong, and let your heart take courage;
wait for the LORD!
Hope against hope, He told me that I can ask for blessing in this life, not accepting our little one’s struggling health problems until we get to heaven where he will one day be healed. We had heard of others experiencing healing and I so longed for this for our sweet baby. I wrestled with this theologically, not knowing if this was what He meant. I wasn’t sure if what I understood was what He meant for me. Over the next many months, we prayed and prayed and prayed, while asking God’s people also to pray and lay hands on him. We did all that we needed to do medically/surgically.
Months and months passed and I forgot about the passage. Then the day came.
It was when our baby was 18 months. He had always lived on the proverbial edge with a high risk for pneumonia by aspiration, complete dependence upon a gastrostomy tube for direct stomach feedings, surgeries from multiple malformed organs and what seemed like a new, major diagnosis coming at us every few months. My body and heart carried the weight of this load. It was hard to do otherwise when all day long and every day I had to make medical decisions, troubleshoot and calculate through gtube feeding problems, endure the pain of my baby undergoing multiple surgeries, go to 25 different doctors or therapists, many of which were ongoing appointments. (We used to almost never need to go to the doctor as a family!) We have 4 other children who often got the short end of the stick of Mom’s attention...
On Nov 11, 2014, my husband and I were with Radiology while our baby was being tested to see if he was able to drink various thicknesses of barium liquid, to test the integrity of his larynx. He had been contraindicated to drinking liquids at 4 months since it was silently slipping into his lungs through a deep opening in his larynx (laryngeal cleft type 2).
What?? Good news, really??? He was actually able to drink the thinest barium, called ultrathin (comparable to water), without aspiration. What most do effortlessly, he was now able to do. This had shocking and incredible implications--this meant he could begin weaning from his gtube feedings and actually be allowed to taste water, actually be allowed to eat more than 3 T of baby puree a day to “keep up the skill” of oral feedings. We could actually begin to try to rely on his mouth for his nutrition. My husband and I had gotten used to getting bad news from doctors. This was the best result possible for this test and we were in shock. Had his larynx been otherwise, had the Lord not healed him, our life would have still been in a state of intensity that was hard to hold up under.
Now it is 2 1/2 months since that day and he went from being completely gtube dependent on medical liquid food, getting his food slowly dripped for 22 hours a day, to eating real food all day long and only getting water/milk/pediasmart by gtube til he learns to drink well. Although he was cut off from drinking so early on, he is now slowly learning to chew and drink and… absolutely LOVES food!!! “But when Jesus heard it he said, ‘This illness does not lead to death. It is for the glory of God, so that the Son of God may be glorified through it.’” (John 11:4 ESV) Oh Jesus, receive all the glory in Nate’s healing!!
How life has changed for him, me, our family...
Little One toddles up to me and signs, MORE EAT. :0)
He finally knows the feeling of “hungry.”
He associates his mouth with food, hunger and the joys of flavors.
He can finally join the family in tasting foods together at mealtimes, instead of being denied.
Food is so wrapped up in our culture, our entertainment, birthdays… our existence as humans. I can now let go of the grief I had, that he would feel great loss in this area as he grew older. No longer is this his lot.
Drinking water in particular is so basic to human living, to be thirsty and to quench one’s thirst with water. This he can now do.
He is starting to speak and now says Mama & Dada (many gtube dependent children and post esophageal surgery patients have delayed speech issues). He knows about 20 food and action words in sign!
I can put him in his crib without his tube at nap time, like I did with our other children.
I don’t need to mess with his feeding tube at nap time since we don’t need to rely on those hours to get in his volume requirements for the day.
I don’t have to be concerned about his pump malfunctioning and harming him while he is sleeping.
I don’t need to be concerned about him being overfilled and choking in his asleep.
Our older children rejoice in no longer needing to take shifts to clean his feeding pump, 5 times a day.
We can actually walk out of the house and not have to think of his feeding tube needs, for short periods.
If his pump has a problem, we can actually just feed him by mouth.
We don’t need to follow behind him like a puppy on a leash, carrying his feeding tube bag that is infusing into him wherever he goes. This was not easy as he learned to crawl and now is far harder with how fast he can walk now! Praise God he can walk, too!!!
We don’t need to pin his tubing in a special way to his clothing in order to prevent his gtube apparatus from popping out his stomach.
He is taking no meds now and the concern for bone degradation that comes with long-term anti-reflux meds has now passed. The Lord has healed him from his reflux disease, too!!!
No longer on long-term antibiotics, his diaper changes are far easier to clean and doesn’t give him constant rashes from diarrhea.
As an unscheduled person naturally, I am no longer tied to his feeding pump and medicine administration schedule all day long.
I can actually sleep in. Imagine the cartwheels I am doing now from relief about this one!
The LORD has done all these things. The Lord has truly allowed us to see His goodness in the land of the living. We have experienced relief in huge ways, in this life.
With that said, I must add that God’s goodness does not depend upon whether we get what we pray for. This inference is my one hesitation about writing this post. His goodness is what we cling to in the deep valleys. His goodness keeps us on the path of endurance with courage. His goodness harkens us to look to eternity while life jabs us with sharp pains. God remains good as we live in between the Cross and the coming new heavens & new earth. We know with certainty that His return will come without delay, like a roaring train with malfunctioning brakes. We are rushing toward that Great Day.
There are still other areas of healing for my children for which I am waiting upon Him. Our little one’s brainstem malformation (descends into his spinal column and can cause future problems), his mysterious short stature issues (that might make us need to give daily injections to grow), his dislike for milk (he cringes with every sip and we have to help him drink 2 cups a day), our oldest daughter’s long-term bilateral hip pain from her femoral anteversion... so we continue to press into His chest in the midst of our suffering, while the answers to our prayers are “wait.”
All of this has taught me not to let the brokenness of my life keep me from asking big of the Lord. I still cannot believe we are where we are now. Remembering some of the hardest days encourages me as we still face difficulties. And this passage reminds me to choose to believe continually “that I shall look upon the goodness of the LORD in the land of the living!” Verse 14 follows so fittingly and tells us for Whom and how to wait: “Wait for the LORD; be strong, and let your heart take courage; wait for the LORD!”
Yes, Lord, for You we wait, with courage and strength.
(no kids' names request: if you leave a comment, please use only first initial of names. many thanks!!)