Today’s topic is “We Can All Use a Little Help: What can friends and family do to be supportive, what do you want them to know?”
The Feeding Tube Awareness site actually has a really great outline for Friends and Family of tubies. Worth a read! 😉
We have been very fortunate thus far to have such an amazing support system in place. Our friends and family have been great, so when you guys read this, give yourself a pat on the back! And THANK YOU!
Some pointers for others who have family members or friends with tubes:
– You may have to be assertive when you offer help. – For us, I think it’s safe to say Joseph and I both don’t necessarily like to admit that we need help, and we also don’t want to feel like a burden, so when you ask, we’re probably going to say no. If you really want to help, just do it. “Show me how to feed Braxton, you go take a hot shower.” I think there are a lot of people out there like this, so if you really mean it and want to help just do it. There are lots of things you can do. Actually, Mommies of Miracles put together a handy guide of possible “gifts” and many are just ways to help. [Please don’t all run out and do them all at once. Seriously. We really do feel supported. I just want to put the list out for anyone else who comes across the page, but may not know how to help others]
– Our tubie isn’t going to break. – It’s easy for some people to feel like they have to be gentle with a tube-fed child so they don’t rip the tube out or cause discomfort. Now, I’m not saying to be careless or just yank the tube out, but many kids can tolerate “normal” playing. Take your cue from the parents. Fortunately, Braxton is just a regular little boy and I foresee more hospital visits for little boy things like broken bones and stitches than we’ve had so far for his condition. haha There’s no stopping him when he gets older.
– Be mindful of our schedules. – Don’t be offended if you invite us out and we say no. It’s not that we don’t want to hang out with you, but it really does take A LOT to work out qualified babysitters. It’s hard finding a good sitter for “typical” kids, so finding one who can properly feed and care for Braxton is even more difficult. Our parents live out of town, they are the ones we trust the most and they know all that Braxton requires. For the most part, they can’t just get here at the last minute (so, if you invite us an hour before the event, don’t count on us being there – we need a little notice) Don’t give up on us though! If we can actually plan something out, we’re more than happy to go out or have dinner with you!
– Have a willingness to learn. – We are so fortunate that our family has a true will to learn all about Braxton and all that it takes to care for him. It really means a lot to have people who WANT to learn and be more educated. Again, thanks to our awesome support system.
– Stand up for us. – The world is quickly becoming a frightful place full of hatred and fear of the unfamiliar. Braxton and other tube-fed children are not monsters. They aren’t aliens. They are regular kids with real feelings. If you see someone teasing a special needs child/person, using the ‘R’ word (retard), spreading animosity — remember Braxton, remember the people you know whom you love and care for. More importantly take it as if it were YOUR child. What would you do if someone was being disrespectful of your child? Don’t be afraid to take the opportunity to stand up for us and educate the person. True, that some people will never change or understand, but how do you know they won’t if you don’t try? Also, take the time to educate your own children about accepting people of all abilities. Children are much quicker to learn, accept, and move on. Teach them young so that when they are older they can pass that on to their own children.
Thank you again to our family and friends, you guys have been awesome and we really can’t thank you enough!
Tomorrow’s topic: Happy Valentine’s Day! I love my tubie!
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