Feeding Tube Awareness Week Comes to an End

Today is the last day of our first Feeding Tube Awareness Week and I am sad to see it come to a close.  This week has done amazing things for me and for the tube-fed community.  It has given me a platform and a reason to speak out about Naomi's feeding tube and thus opened up many conversations with friends and acquaintances about feeding tubes.  It has allowed me to share what our life is really like and reflect on how thankful I am for a device that I desperately tried not to have as a part of our lives.  It has allowed me to network with so many tubie families that I never would have known and I have been able to give and receive encouragement and advice with them.  It has also given me the courage to be more open about Naomi's tube.  We might even give her a blenderized feeding at the park soon instead of timing the park around our feedings.  We've done formula in her pump out and about but never real food with the syringes.  Most kids don't have to wait until they get home to have a snack or a meal so why should Naomi.  I have realized the only thing stopping her is ME.  It will be more work but maybe it will bring a little more awareness to the fact that some of us just need to eat differently.  We've also had the chance to cyber-meet several adults with feeding tubes and there stories are really encouraging, I especially like Joey's.

Today we are supposed to talk about something positive that has come from the feeding tube and I think this week definitely has been, but the other big plus for us is that Naomi has energy and our life isn't about food.  So instead of telling you, I'll show you.  We can go play in the fun and the sun at the park (nope I didn't feed her this time, but if the weather allows I bet it will happen next week).  I truly believe that if Naomi didn't have the tube both she and I would have been too tired to go to the park.  Naomi from malnutrition and myself from spending hours every day coaxing her to eat and hours every night worrying.  Yesterday afternoon Elijah, Naomi, Mary and I ran off all of their energy while waiting for Sam and Beth to finish school.  Having Naomi and everything that comes with her has made me so thankful for the little things!