Today's topic: Share how you and your family cope with the challenges of life with a feeding tube. What has made the journey easier?
Without a doubt, I can say that there are at least 5 things that have made life with a medically complex child do-able.
I can't say enough about how important it is to learn everything there is to know about whatever medical problems you or your loved one are facing. (and Wikipedia doesn't necessarily count as a reliable source) Knowledge empowers you to become an expert on your child's health. I have been a stay-at-home mom since our first child was born almost 11 years ago. I've spent more time with each of our kids than anybody else has. In Raya's case, I think I've spent more time with her alone than I was ever able to with any of the other kids just by virtue of the number of appointments & hospitalizations she's had. When you spend nearly every waking moment of your child's life with them for the first couple of years, you tend to know everything there is to know about your child. In a medical sense, you are the connection between every member of your child's medical team. The more you know about everything that is going on with your child medically, the better you will be able to understand and facilitate coordination of care between providers.
There is also a certain confidence that comes with knowledge. The more you know about your child's condition, treatments, medications, diet, medical equipment, etc., the more comfortable you will be with all of it. This is not to say that you will necessarily LIKE all of it, but you won't feel as overwhelmed and daunted by things once you understand them more fully.
2. Connecting with others
There are a lot of ways to connect with other people. Depending on where you live, there may be in-person support groups for various medical conditions. Often, hospitals and clinics sponsor these types of groups. It is also pretty likely that with as many medical appointments as your child will have, you will come across SOMEONE in a waiting room that you will be able to connect with. You'll spot that familiar feeding pump backpack from across the room or hear it beep and think it's yours. The internet and social media provide easy ways for parents to connect with each other as well. Of course I'm partial to Feeding Tube Awareness's facebook page but there are a lot of really helpful pages and groups on facebook for just about every condition under the sun.
3. Support from family & friends
4. Sharing our story
When we were first starting out with tube feeding, I knew there HAD to be more information out there than what I was finding on Wikipedia. (WORST source of feeding tube information) At the time, it seemed like everybody and their dog had blogs about their families, and I soon realized that some of the most helpful information I could find was what I came across on the blogs of mothers of kids with medical issues. Most of the blogs I started reading were heart moms since a lot of heart kiddos have feeding tubes. It was like a whole new world opened up to me when I started reading about what the process of tube feeding had been like for other people. I was SO incredibly appreciative to have found people that knew what I was going through and were willing to share their experiences.
Of course I was part of the multitude of mommy bloggers, so it was only natural to continue blogging about what was going on with Raya. For me, blogging has been the best form of therapy. In the beginning, I started a separate blog for Raya because there was so much going on with her medically that it started to feel like it was taking over our family blog (which has since been pretty much abandoned, sadly) and I really didn't expect anybody but my out-of-state family to read it. Over time, I realized that it was a good way for me to share the same kind of information that I had been so desperately searching for back in the beginning of all of this, so I started trying to do that. Putting my thoughts into words has helped me sort out and process my emotions as we've gone through the ups and downs. Of course not everyone feels comfortable sharing as much publicly as I have, but it is very therapeutic to find an outlet for the thoughts and emotions that come along with this life, whether public or private. You never know who your story might help.
5. A sense of humor!
The night that I brought Raya home from the hospital last week, I was STARVING so we drove through Panda Express. I almost forgot about the fortune cookie and opened it just for kicks right before I went to bed. I couldn't help but laugh when I read it. "Your sense of humor will get you through difficult times." Oh, you mean like when you're less than 2 weeks away from your due date with your 5th baby and your 4 year old spikes a 106 degree fever and gets admitted to the hospital for 4 days? Yeah. There are so many times in the last 4 years especially that I would have gone out of my mind if I hadn't been able to laugh about things. Tube feeding can lend itself to some pretty amusing situations. :)
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