My son has a feeding tube. He is three years old and has been 100% tube fed since he was 20 months old. He has a condition called gastroparesis and also reflux. Basically, his stomach is not able to process enough solid food so that he can grow properly. It was (and still is in many ways) a very long road getting to the point of needing a feeding tube. However, it is exactly what my son needs to survive and thrive. Because of his feeding tube, my son is happy, healthy, and growing.
This week just happens to be Feeding Tube Awareness Week. It’s a week to recognize all the benefits of having a feeding tube. That it isn’t just for people at the end of life or brides on crazy weight loss schemes. The theme for this year’s celebration is Nothing Can Hold Us Back, and my son’s feeding tube does not hold us back from doing what we need to do in our lives. It does not hold me back from working. My son is in daycare full time, which is an awesome center that has taken time to learn how to feed him through his tube. It isn’t hard – and can sometimes be easier than coaxing an orally fed three year old to eat!
We certainly have our challenges. It’s hard to trust other people with your child’s care, especially if that care has a medical element. He was in one center that did not take his care seriously – they thought that because he looked and acted healthy – that he did not need the feeding tube. However, he is healthy BECAUSE of his tube – we worked hard to get him healthy. A different center would skip feeds and water on occasion at their convenience. After the last straw, we put him in a new center and he is thriving there. I trust them to handle his water and feeds, they communicate with me very regularly and they treat him just like everyone else.
Other challenges besides finding the right childcare center for my son is the extra time I need to take off work for illness, doctor/therapy appointments and running back to daycare in case of a problem. Luckily I have an understanding workplace that allows me to take the time that I need. For the most part, though, we are able to continue our lives the same way as we would if he did not have a feeding tube.
So the next time you see someone with a feeding tube, don’t be afraid. Treat them as you would anyone else. If you need to consider a feeding tube for a loved one, know that it won’t hold you back. It doesn’t hold me back as a working parent and it doesn’t hold my son back from thriving in a childcare center. A feeding tube gives you freedom and security to live life, and ultimately keeps my son healthy. I have grown to love it as without it, my son probably wouldn’t be alive today.
Anyone else out there have to adjust to being a working parent while caring for a special needs child? What have you done to advocate for your child, all the while being able to continue to work while trusting others to care for them?
Barbra Baker is a full time litigation paralegal, wife to Chris and mama to their 20 month old son Knox. She blogs about their adventures in raising a mountaineering superhero at Baker Adventures and occasionally tweets as @BarbraBaker