After he was born, the main emphasis of his medical conditions was his inability to eat. I went looking for other people for support regarding his tube. We embraced his tube and the "tubie" culture. I became friends with many different people because many of us had a commonality, we had a child with a feeding tube. It didn't matter if they had Mitochondrial Disease or Down's Syndrome, we had a common bond.
As Spencer has learned to eat, we identify him less and less as a tubie. Instead of being his lifeline, it is now just a small reminder. However, we will always be a tubie family. We have gone through this crazy journey, as many others have, and it will always be a part of us.
Tomorrow, Spencer will have his feeding tube removed. He has some type of feeding tube since he was 1 day old. Today, he has had his gtube for 3 years, 10 months, and 12 days. Tomorrow will be day 1 of him living life as a "tubie graduate" and the beginning of his tube being a memory.
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