Today's topic: What are your tube feeding hopes and dreams for you or your child in 2014? What successes do you want to build on?
To be honest, sometimes it's hard to feel like spending the energy thinking about hopes & dreams for the future with a medically complex, tube fed child. (and probably more so at 39 weeks +6 days pregnant...) It is also difficult to set expectations when you have no idea what to expect and so much of the situation is beyond your control. Early on, my only hope for her was for everything to be "normal." I wanted her to stop needing medications to help her be comfortable, and I wanted her to eat and drink orally so that she wouldn't need a feeding tube anymore. I thought that it was realistic to expect for that to happen within the first couple of months, but as time went by and things got worse despite everything we were doing to try and make it better, I had to come to terms with the fact that it was not. At least not then.
I think one of the most emotionally difficult aspects of parenting a medically complex child is getting your hopes up for one thing or another to happen and then realizing that it just isn't going to happen the way you want it to. It is incredibly difficult to find a balance between having a healthy level of hope and giving up. As much as I do want Raya to someday wean off of her feeding tube, there is a part of me that just gets tired of the struggle. There is so much about her to try and understand so that we can try and work through it all, and sometimes it just gets exhausting and I don't want to do it anymore.
One thing that I have learned is that it is healthy for me to set goals, have hopes, and even expectations, but that I also have to be flexible when it comes to things that are beyond anyone's ability to control. For example, there was a point where it looked like we were on a really good course with Raya's eating. She was trying new foods, eating decent amounts of the things she liked, and really just doing awesome. Then we found out she was allergic to pretty much everything she was eating and we had to stop letting her eat all of it. It was frustrating, but at the same time, we had to recognize that it was not a total loss. Just because those foods were taken away did not mean that we had to give up the oral motor skills and the desire to eat that she had gained. We just had to shift our focus and redirect our goals, and I think that's what special needs parenting is all about. There is a lot of go-with-the-flow involved and once I let go of my need for control and embraced that concept, things got less stressful for me.
On a more positive note, it is pretty incredible to look back at how far Raya has come. She has made SO much progress over the last couple of years. We've gone from a child who couldn't handle sitting in a high chair for more than 10 minutes, would gag at the mere sight of a spoon pointed in her direction, couldn't swallow water without choking, and vomited if anyone tried to put food in her mouth (and also for no reason at all) to a girl who actually HAS some favorite foods. There was a time in her life where I wondered if she would EVER ask for food and eat it, and she DOES! Today, she wanted a baked potato with butter (aka non-dairy margarine) for dinner and she ate a few bites of it. She asked for applesauce for lunch and ate a few bites of that. She asked for 3 potato chips for breakfast and ate all 3 of them. (and don't judge me for feeding her potato chips for breakfast. seriously) She likes drinking water now and most of the time, she can swallow it without coughing. She is willing to taste things and she loves going to feeding therapy. All of that is very exciting!
Building on where Raya has gotten to now, here are the hopes that I have for her for this year:
1. That we will find more foods that she can eat that will not make her sick and that she'll be willing to eat them.
2. I would LOVE to get her potty trained this year.
3. That she will get back to the point where she was eating enough calories per day to skip one tube feeding.
4. That she will keep all of the good habits she's developed, like drinking water, and continue to grow at a healthy rate.
5. Most importantly, that she will be happy as she continues to work on the things that challenge her.
The hopes I have for myself for this year are:
1. That I can find a balance with taking care of the needs of all of my kids and not allow myself to be overly focused on Raya.
2. That I can find more ways to prepare the foods Raya can already have and help her break out of the ruts she gets in with the foods she wants to eat.
3. That we can find more ways to incorporate her "safe foods" into our family meals so that there are more opportunities for her to eat out of the same pan/dish/bowl as the rest of us.
4. That I can learn more about the way her body works and better learn how to work with it so that we're not working against it.
5. To not obsess over every detail of the new baby's health & eating habits. (probably easier said than done but we'll see when she gets here!)
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