Summer is in full swing. The beach is the best antidote against a heat-wave. Isn’t this so obvious for everyone? But for people with a tracheostomy tube this equals danger, fear, helplessness and the feeling of self pity and anger that it’s just another thing that cannot be done.
However, God didn’t give us the spirit of fear, but power instead. I have gone at situations like this out of willpower and defiance, but the result was only sweat, fatigue and despair. In reality it looked like this: although we were at the seaside, the waves were too big, or in the pool another child was splashing the water, so we had to come out, or even if everything was perfect, I was so stressed out that Vince felt it and produced a lot of secretion, so we kept coming out of the water so I could suction.
But what is impossible to man is possible to God. So I trust and I believe that God helps me in a situation when I knowingly put my child’s life in danger. I take him into the pool knowing that if water goes into his stoma where he takes his breath, he could even die.
The peace that fills us when I take Vince swimming seems to be incomprehensible to an outsider. When I surrender care to God and pray to Him, He gives me the kind of blessings I would have not even dreamed of.
“Come and see what the Lord has done, the amazing things he has done on the earth.” Psalms 46:8
Once I remember we went swimming in the swimming pool of a hotel. We sat in the Jacuzzi with Vince, because it’s his favorite. Imagine that there is water bubbling and splashing everywhere, and I squat on the Jacuzzi’s seat and I hold Vince in a way that his neck is on my shoulder, so I can stand up any moment if needed. We were alone in the Jacuzzi, but then an elderly man joined us. We started talking, and he told us that he was the nutrition manager of a large institution for people with developmental disabilities for 25 years. When I found this out, I started laughing out loud, because God is so caring that it wasn’t His only concern to give us full security in the water, but even to give us answers and tips for Vince’s difficult nutritional issues. Just to show you how fitting this is, two days before this the gastroenterologist in the hospital couldn’t help us at all. I could tell he had never seen a case like this and he had no idea what we could do to make Vince gain a little weight before his upcoming spinal surgery.
But this elderly man told us everything, what practices and ingredients I should use, since this was his whole life. Still to this day he returns to the institution, because there are children there who would only accept food from him. I know this doesn’t say miracle to a lot of people, but to us it was one. Feeding Vince is complex. For a year after his birth he got food through a feeding tube (I slid down a tube through his nose twice a week that went all the way to his stomach), then he slowly learned how to swallow the food given to him with a spoon, as the physiotherapist worked with the muscles in his mouth every day. The trach is particular in a way that you don’t taste tastes, can’t smell smells as the air doesn’t get into the mouth and nose. So the enjoyment of eating doesn’t exist as a concept for children who have lived with it since birth. And let’s not even speak about the consistency of food. To this day I cannot give him anything chunky, I puree everything from breaded meat through sesame seed to salad, everything. I only understood perfectly Vince’s nutritional problem when years later I went back to the hospital where he was born. The doctor shook my hand and congratulated me, because he saw that Vince still had a tracheostomy tube, but no PEG (Percutaneous Endoscopic Gastrostomy – a small surgical opening on the stomach where the food can be ingested via a syringe in the case of 80% of the children with trach).
“You will teach me how to live a holy life. Being with you will fill me with joy; at your right hand I will find pleasure forever.” Psalms 16:11
God’s providence is without limits! I asked Him to shield us from having water get into the trach, and He did that. But to show His omnipotence, at the same time He provided answer to a question that had worried me for years. Vince gained two pounds right before his spinal surgery, when he needed all his strength, because the operation lasted 7 and a half hours.
Ever since that we have been going to the beach, to the pool, we run under the spray of the garden hose, and we possess a fantastic freedom. Vince squeals and laughs out loud, and I feel like I am in Heaven.
