Wednesday, March 5, 2014

Graduate.

Before Spencer was born, I didn't know anything about feeding tubes.  All of I knew was that old people or people in comas got them.  I never imagined that not only would we have a child with a rare genetic syndrome, but he would also require a feeding tube.  

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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