The events of the last 6 weeks have left us all a little "shattered". Although I have to admit our family has learned to handle crisis well, it is very difficult to pick up the pieces after being hit so hard. After every storm there is an emotional "mop up" that needs to be done. There is nothing more frustrating than trying to do this but I feel like yesterday the clean up was done. If I could take one day and encapsulate it forever it would have been yesterday. There was joy in my house for the first time in a long time. It was a day I won't forget.
Since Kourtney's foot fracture there has been an undeniable over-riding sadness that affects every aspect of her care: dressing changes, physio, and socializing. The word that sums it all up is "depression". Her statement to me after her fracture, was, "I knew that to be able to walk again was too good to be true." It is very difficult for me to console her grief. As much as I don't feel her physical pain, the emotional pain I feel becomes an equal partner in attempting to manage it. This week I disassociated myself from her. I had to. I worked the most I have in months just to get away from the tears and meltdowns. I did not leave her alone in her grief ,because I know for a fact that we have hired some of the *best* caregivers in the world. Each one has a different way, perspective in managing Kourtney's emotional pain, and this week if it wasn't for them I believe Kourtney was able to get through this bump in the road.
We had 2 urgent appointments on Thursday; one in Surrey and then Children's Hospital. I was in between night shifts so Todd took the day off so he could drive and I could sleep on the way to and from the hospital. The appointments turned out to be very disappointing due to the lack of communication between specialists. It once again reminded us that Kourtney's condition is "uncharted territory" at Children's Hospital, and became overwhelming for all of us again. We have no clue how much longer Kourtney will be in a cast, how she will walk with a splint (AFO) or even how long she will need the splint. Those questions are still up in the air.
After our appointment I was "gracious" enough (ahem) to let Todd stop at Mountain Equipment Coop for his entitlement purchase. Turns out my husband is a bit of a "shopper" when it comes to places like that. It was actually really nice for me to see him enjoying finding some warm clothes for biking . . . however I had to get home to sleep.
We took Todd's car into Children's that day as Kourtney finds it easier to pivot herself into the car rather then step up into the van. I sat in the back on the way in and tried to fall asleep. I couldn't get to sleep because I got really car sick. On the way home Kourtney and I switched spots, to try avoid that nauseous feeling. I tried as hard as I could to sleep on the way home. We have been so "blessed" with a new bridge in Vancouver and brand new roads that it makes it very easy to get into Children's Hospital. Unfortunately once the highway reaches the valley the 4 lanes of highway turn into 2 lanes so our "already no good day" turned into a nightmare. An accident on the highway shutting it down completely. Todd decided to take some back roads to get home; he wasn't the only one with the same ideas. The back roads of Fort Langley are very windy! I eventually needed to pull over to throw up. A 50 minute commute turned into a 2 hour commute complete with a depressed child, a carsick overtired mama, and the best dressed mountain biker (I am not being fecicious - there always has to be some good out of that day).
That night the rain poured and so did Kourtney's tears. There was nothing or nobody that could console her. I actually like those kind of tears because they are cleansing. It is the breaking point that Kourtney needed. My heart ached for her but I had to stay focused as I had to go to work for another night with only two hours of sleep under my belt. Our dear sweet Meaghan was looking after Kourtney that night so I felt she was in the most capable of hands.
Yesterday Todd and I went for an unexpected walk down memory lane. I found some treasures as I cleaned through some drawers and Todd transferred hundreds of pictures, documents and letters going back to 1998 from an old computer. The walk down memory lane was a discouraging one as we saw how EB has affected Kourtney's body. It becomes painfully clear, that the pivotal moment in Kourtney's life with EB was the "bath incident" at Children's Hospital in 2008. I still have a lot of regrets for not better advocating for my child at that one moment that changed her life forever. But I would never go back. The pain, although great, released me from the emotional prison of fear that was serving as my life sentence. Coming face to face with my greatest fear of losing control of the disease was the best thing that ever happened to our family. It took the pressure off me that EB is not something I can control by my meticulous dressing skills, watching every move that Kourtney made, being so careful with infections, and blaming everyone for not taking care of her properly. It reassured me that my disassociation with Kourtney's depression over the past couple of weeks was the best thing I could do for her as a mother. Through our pain we gained knowledge that living our lives in fear of what could happen is worse than actually going through it. (It's hard to understand unless you have ever been there). We learned to take Kourtney's disease, as well as our lives, one day at a time.
Which brings me to yesterday. Kourtney and Shae went shopping with Meaghan. Usually one outing a day is enough for Kourtney. However, I told her we were going to church on Saturday night and she said "ok"- no tears no fuss. Even on our trip to church the girls weren't fighting; just a lot of JOY. Afterwards we went out for dinner with my cousin, Leanne. Before we were seated Kourtney got a hug from a waitress she knew from youth group. The manager then took our order and asked Kourtney if she wanted a double scotch to drink - then winked at her and said I know you from Northview. After we ate another waitress started having a normal conversation with Kourtney - this never happens. Most times people just nervously avoid her but yesterday those 3 girls helped make our good day great.
Did I mention that Kourtney ate a grilled cheese sandwich, which she has not done in months. We had a code word (Walrus) in case she began choking and needed to leave for the bathroom. I am happy to report she didn't need to use the word. The ride home was full of giggles and making fun of me. If I have to take the bullet for my family I am perfectly OK with that. It just felt like we might have turned the "corner"- and I had nothing to do with it!
Did I mention that Kourtney ate a grilled cheese sandwich, which she has not done in months. We had a code word (Walrus) in case she began choking and needed to leave for the bathroom. I am happy to report she didn't need to use the word. The ride home was full of giggles and making fun of me. If I have to take the bullet for my family I am perfectly OK with that. It just felt like we might have turned the "corner"- and I had nothing to do with it!
2 Corinthians 4:17
For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.
For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.
