Dr. Davis: “Ryleigh do you realize what you have been through?”
Ryleigh: “I guess so.”
Dr. Davis: “It is like you have been an astronaut out in space for the last three years. Now you are back.”
Somewhat isolated, limited physically due to gravity and lack of space, and unable to take part in regular activities that is what an astronaut experiences when out navigating the extremes of space. Dr. Davis tried to explain to Ryleigh that her experience is similar to this. I am so impressed by Dr. Davis because he connected with Ryleigh’s logical side and it made sense to her. He wants her to get out and try to normalize again but as her family (and friends) we have to honour the experience she has gone through. It makes sense to me even more now. Ryleigh needs to slowly integrate back into normal middle teen experiences – socially, emotionally, and physically. Chloe and I are so ready for her to get going and be active and engage in some regular activities with Ryleigh. It has seemed like an eternity since we have. But, patience and understanding needs to take hold as we have to listen to Ryleigh and not push too hard to DO. I realize that she is willing to try things when she feels the energy to do so…she definitely needs to work on pacing and choosing her activities wisely as she tires out very quickly.
Dr. Davis: “Ryleigh, what is one thing you really want to do that you cannot do right now?”
Ryleigh: “I want to get a hotdog at Cosco. You see it is the perfect place to test whether I am fully recovered or not. The food is not what I am supposed to eat (because the food is in warming trays and drinks are from a fountain – hotbed for bacteria), the eating space is not clean, lots of people, and I need to walk a fair distance.”
Dr. Davis: “Interesting…okay you can go.”
Mom: “WHAT!!, you mean today, right now? No she can’t be ready for that. We were told it could take 3-6 months. I am not sure this is….”
Dr. Davis: “Sure, why not…her counts are good and she needs to get out and do something normal…just be careful and if somebody is coughing, sneezing, or looks ill…Run the other way!! Her blood counts have stabilized and she is doing well. I think we need to balance our fear for infection with the need to get out and about. Ryleigh has had enough medical stuff she needs to do things that she wants to do (within reason of course).
Mom: “Ryleigh…did you hear what Dr. Davis said, you can go to cosco today! Ryleigh…Ryleigh…hey are you even paying attention?”
Ryleigh: With a smile on her face staring at us with a glazed look in her eyes. “Oh yah…kind of”
Mom: “You were thinking about cosco hotdogs and ignoring us weren’t you?”
Ryleigh: Sheepishly, “Yes, I was…sorry I just am so excited!”
Ryleigh is doing remarkably well. She struggles with stamina and outings need to involve lots of sitting or riding in the car but we are getting out. She has accompanied us on a trip to Superstore – where she got some new eye glasses as hers did not fit her anymore (she has indents on sides of her head). I guess this is a good sign that her body is finally growing. We also made a trip to a fast food restaurant for some chicken nuggets (yes McD’s) and their famous fries. It was like we were at a five star restaurant. I am so amazed at the enjoyment of these times although reflection makes me think how tough things were for these to be a highlights.
Ryleigh has not experienced anymore gut pain which has been a relief to all of us. Each day we see her transform into a healthier, vibrant, young lady. Ryleigh is still cautiously optimistic as she knows we have been down this positive path before and it did not end well. I remind her that we need to be mindful about the positive now and not worry about what might happen. I try to hold onto that thought but honestly I remind myself that this is not a cure – just a reprieve. We need to enjoy and live as much as possible…as research shows that the disease will most likely return but it most likely will be years from now. I will take that…she deserves to travel through her adolescence with her family and friends…not doctors, nurses, and other medical personnel. Giving her many more positive experiences to start filling up her “bank” of typical not medical.