In the quest to look for a more homeopathic way of helping Bianca cope with her pain I began experimenting with guided meditations. Over the last year we began incorporating meditation into Bee’s daily life. While it was wonderful to do the meditation 3 times a day – morning, during bandages and night – I quickly realized that it was not the best for the bandaging routine. At least not the guided meditations since they focus on what’s going on in our bodies at that particular moment. However these guided meditations are a wonderful way to start our mornings and a fantastic way to end our evenings. For our wound care routines we have decided to either read a book (no TV or distracting polluting sounds) or hear some instrumental healing music like Healing by Anugama. The sounds and flow of the music really helps Bee get into a relaxation mode during our wound care. She is much more at ease and in a good place ~ she still has her moments here and there but that is to be expected. We always wish we can wave that magic little wand we must have lost somewhere and make things 100% better.
So back to the morning and evening guided meditations that we have incorporated into our lives. There is a website I stumbled upon called Meditation Oasis many, many, many (okay drop one many I might be giving my age away here…) years ago. I have been actively meditating for quite some time and do it at least three times a week. Meditation Oasis released a children based bedtime meditation. It has been wonderful playing this for Bianca during the evening. I have extended it from just one meditation to two at nights. I created a playlist on my phone that is called Bee's Bedtime. I switch up the first meditation with one of Meditation Oasis' many other listed podcasts. The complete list is here: Meditation Oasis Podcast List - It's hard to pick a favorite but #5 - Simply Being, #14 - Beyond Pain, #18 - Gratitude Meditation and #25 - Discovering Peace are a few of the ones we use over and over again. An actual quote from Bianca yesterday was "Mom I was in such a deep sleep and relaxation that I didn't even make it to the second meditation for sleep!" - she enjoys it and I think helps her be more at ease with the pain that goes on through her little body almost hourly.
In the mornings there is one special YouTube video that we've enjoyed together. It is called Morning Blessing - Beautiful & Peaceful Start To Your Day. It's short, sweet and to the point. Really helps her start her day on the right foot. Honestly it helps me have a wonderful day as well! If we search for videos with words like "morning guided meditation" or "morning gratitude meditation" we will find several other options.
Bianca literally asks before bedtime that she wants to hear the meditation. She always comments "Mom I'm going to brush my teeth and put cream on my hands and then I'll be ready for my meditation, okay?". Never did I imagine that my 9 year old willing to do something as serene and soothing as meditating. As a parent there are situations that present themselves to us and it's our duty to figure them out - if we can't then we just let it go after a couple of failed attempts to "UNDERSTAND". In this instance meditation has been a God-send for our beautiful butterfly. It has helped get through the grueling process of a nightly routine that's very often filled with pain, blood and tears. While EB continues to try to steal away our happiness we are constantly squashing it like a bug. By keeping Bianca in a somewhat flowing and acceptance state of mind we have been able to conquer the nasty beast that is EB.
Until next time...
|Bee completely passed out after a dressing change & her |
guided meditation :)
|Tucking her in she would not let go of her new friend "Fudge"|
she made at her Build-A-Bear party!