I am thinking about Chloe and Ryleigh constantly…how my behaviour,decisions, choices, and actions will affect the emotional, social, and physical development of my girls. This can be an overwhelming responsibility but one I do not resent or wish I did not have. I appreciate the gift of parenting and how the never ending responsibility is my reality not my burden. I am thinking about how to help these teens of mine navigate the good, the bad, and the ugly.
Always thinking about appointments:
Ryleigh spent the last two weeks having pre-tests to get a baseline on the health of her major organs like kidneys, heart, and lungs. As well she had a hearing test and an eye appointment. She had a dental check and needed to have 4 little cavities filled as they want to minimize the possibility of bacteria to create an infection when she is immune compromised during her transplant. Ryleigh is also going to meet with the youth health team to come up with a psychological and social plan to help her cope with all of this.
Chloe also had an appointment this past week…it was the first of 4 meetings with her teen pain group called “Pain 101”. I got to attend this meeting along with parents of the other teens participating. It was a great start to learning more about how Chloe’s pain gates are not working properly and how as a parent I can support her in learning how to cope.
Always thinking about basic needs:
I have figured out a routine in managing basic responsibilities regarding meals, laundry, and keeping the house as clean as possible. As well, I have been working with the social worker in securing some grants for the housing costs. She has been an excellent resource to help with paper work and finding some money to pay for the extra expenses of living in Vancouver. As well she has guided me towards an EI program for parents of critically ill children. This is a 35 week program that will pay EI benefits and will help me as my sick days have been used and I was concerned about income.
I am trying every trick I have to get Ryleigh to consume more calories as her calorie intake is low and when she starts her chemotherapy regime it will be even more challenging for her as her appetite and anti-cravings will become worse. She was hungry last night and I made homemade pancakes for her…she smothered them in maple syrup (real stuff only) and whipped cream. Now that being said it was 11:30 at night! But she ate and that is a good thing!
Always thinking about the what ifs:
What if’s are big one for me right now. Although this may be a routine transplant for the oncologists in respect to protocol for meds and such…it is not routine because she is not an oncology patient. Her doctors are caring and very knowledgeable in helping guide us the best they can. I have realized that they truly are focused on their area of expertise and have difficulty seeing the connections or concerns regarding her IBD and her ileostomy. I have become the “global thinker” in this process and work hard at connecting all the dots between her various doctors and nurses and the medical experiences she has already endured. For example, as I was talking with one of the nurses about slippers for Ryleigh I realized that her appliances for her ileostomy could become a breeding ground for bacteria. They are worried about bacteria in teeth – should there not be a concern regarding her ileostomy. The nurses and doctors had not thought of this. I contacted her ileostomy nurse and they came up with a plan. Changing her appliance every day is not an option as it can cause skin issues (which can already occur because of her non existent immune system). This is an example of the what if…. so I am spending time online, asking lots of questions and preparing for situations so that this transplant can go as smoothly as possible. Infections are going to be her biggest foe in all of this we need to minimize any chance of bacteria or viruses entering her system and wreaking havoc.
What if this is the best it gets for my Chloe? What if the pain syndrome is managed the best that it is? What will her life be about? How will I help guide her through the coping skills needed so that she can follow her dreams and live a full and content life. My goodness she needs some time to just be and not be involved in the medicalization of her self.
What if the stem cell transplant does not work? What if all of this has been for naught and Ryleigh continues to suffer? I am a hopeful and positive person but I need to process these thoughts to make sure I am strong enough to deal with whatever comes my way…this is how I cope.
Each thought I have transforms into reflecting about how my behaviour, decisions, and actions play a key role in how my daughter’s development and how they see and experience their world. I try my best to show them qualities that I value: compassion, empathy, honesty, kindness, trustworthiness, intelligence, stick-with-it-ness, and respect. It is important for me to reflect and think and hope that it is good enough!