We are adjusting to being out of the hospital. It has been odd not to have nurses and doctors waking us up in the morning and machines beeping at all hours. I am surprised what we got used to.
I am missing the help for Ryleigh’s care that is only one call button push away. We have had a few issues that I have had to work my way through. Ryleigh does not have the confidence in me yet that I can manage and deal with things as they come.
She has had some oozing from her incision sight. I put a makeshift bandage on it and told her it should be okay. But, she insisted we call the doctors. I called and luckily it was the surgeon who knew Ryleigh. We went into emergency and he looked at it. Reassured us that it was not infected just some fluid that collects at wounds and it will drain for the next few days. He put a piece of gauze on it and sent us on our way (with extra supplies of course!). Chloe was kind enough to remind Ryleigh and myself that I did the right things on my own and that I handled things very well. Nice to have the encouragement. Truthfully, I feel like I am flying by the seat of my pants…wondering if things will ever become routine again.
We ventured out to Langley yesterday to watch some of Ryleigh’s friends and my former students play basketball. It was so lovely for me to see all the bright, sparkling faces of these girls. It was even more delightful to see how much pride Ryleigh took in getting ready for the outing. She was also so brave about her ostomy bag, she does not like to wear it underneath her pants — “Really Mom, it is like putting a rolled up sock in your pocket and wearing it all day – totally uncomfortable”. Ryleigh has always been one for comfort vs style. Personally, I think it is very brave and courageous of her to be so open and honest about her ostomy pouch. She even makes the effort to decorate her pouch with sharpie markers to make it more eye appealing. What a kid!
For me, it is adjusting to the process of caring for a child with an ostomy bag. We purchased a diaper bag because Ryleigh needs to have extra sets of materials, wipes, extra clothing, and other supplies. This is just in case we are out and about and something happens. She is not embarrassed about taking the bag and even calls it her diaper bag.
Now, I make it sound like Ryleigh is adjusting wonderfully to this new way of living for her — she still struggles with the whole situation. There are times, understandably, she has a complete melt down and gets angry and mad. She still refuses to empty her own bag as it really grosses her out. I do that for her — not the most pleasant job but motherhood seems to prepare one for this kind of thing. She has had some crying times wondering why this has happened to her. But once she gets it out of her system she is good for awhile and keeps moving on.
I am wondering if there is a disorder called Post Traumatic Sick Child Disorder? Now that (crossing my fingers) we have completed this stage of getting Ryleigh better I wonder how I will adjust to the new role that I will play in her life. I am responsible for her injections, bag changes, mood swings, emotional challenges, catching up on her schooling, nutrition and fluid intake…..and how will I adjust. I am realizing that life goes on after your child has been hospitalized. I romanticized the idea of Ryleigh’s discharge – thinking that things would be easier. Currently, they are just different. There are still worries, stressors, and responsibilities — they are now on my shoulders more then ever. I am fortunate to have the knowledge of my past experiences and the support of family and friends to know that I will get through this stage too. Normal is what normal is….