Topic - How has your attitude/family/friends' attitudes changed towards tube feeding? What has awareness of the positive benefits done to change perceptions?
When you have a kid with special needs, you find out who your fair weather friends are. We have had several friendships waver off, and we've had several that have become stronger or didn't change at all. I have friends who don't ask questions and I have friends who ask tons of questions. I have also gained many, many friends through babycenter and facebook. Some of these people I consider my closest friends, even though most of them I haven't met in real life.
I reconnected with my father shortly before Spencer was born. Since then I also have become quite close to my step mother and my aunt, all of which live across the country. My aunt is a nurse who has fostered or adopted several children with various special needs. I know at one point and time she had 4 tubies. She has been a great source of advice and a great person to share tubie humor with. My parents, referring to my dad and step mother, have been so supportive, even though they have yet to meet Spencer. The point to stress here is, and keep things pertaining to awareness week, is that they don't see the tube. They see am amazing kid, not Spencer's genetic disorder.
Most of you know we moved three hours from home last September to be closer to my in-laws. My mother in law jumped right in to tube feeding and never looked back. I force FTA gear on her all the time and she loves it. While both of my parents in law have never treated Spencer any differently, my father in law has been quite hesitant about the feeding tube. We assure him that he won't break Spencer, but he is still cautious, which is understandable. My sister in law is starting to learn a lot more about feeding tubes and is learning how to feed Spencer. My brother in law, who doesn't really even touch small children in fear of breaking them, has even done a tube feeding.
The most constant question we get at family reunions is, "how's he doing?" Everyone in the extended family knows about Spencer and his tubie. I believe a lot of it is how we approach the topic. We have always talked about Spencer and his medical issues positively. We don't make a big deal out of his delays nor his feeding tube, and it really rubs off on the family (and the general public too). In our family, his tube isn't a big deal. They see him grow and thrive because of all our hard work and especially his tubie!
And us. How do I explain how awareness has helped my husband and I? I was fortunate to have a great team at the hospital. I'm also addicted to google. Anyhow, after we found out Spencer needed a feeding tube, we became experts. That's how I found the group on Babycenter and in turn found FTA. The hardest part about having a child with special needs was feeling alone. Facebook has given me a sense of community and we're not in it alone. My husband I are no longer the ones becoming aware. We are spreading awareness. We are now the person that people who are looking for help find. We educate and promote.
My kid has a feeding tube and he's doing awesome. Anyone can see that.
(I must also mention that last year we went rogue. We started doing a diet of blended foods through his tube. Luckily we had our medical team on our side. I would have never learned about BD without some also parents who also do it:)
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