Embarking on a new journey!

The next few days are going to be B.U.S.Y.!  I have taken yet another new rotation at work, and I have been on permanent nights (Tuesday, Wednesday and Saturday). I constantly feel like I am either recovering from a night shift or trying to rest before a night shift. The permanent nights will be finished this week and then we are headed to Regina for 5 days of fun in the sun!!! (I didn't say warm, but at least it will be sunny)!

So why on earth (literally) would we go to Regina in the middle of winter where the latest temperatures have been hovering in the -25 degrees Celsius range? Flights to Regina are not cheap; more than double what it costs to fly to Arizona!

The reason we're going to Regina in the middle of winter is because Kourtney will be a guest speaker/ singer at a fundraising banquet for Align Ministries.  My brother, Murray, and his wife, Shannon, are leading this ministry in Regina.  It is Kourtney's first official speaking engagement; one where she will be able to share her life story and parallel it with how difficult it is just to be a teenager. So exciting for this God-given opportunity because I know that this is what is going to give Kourtney purpose in her suffering.  It's well worth a pricey trip to cold (and sunny) Saskatchewan. We are praying that it will be a positive experience for Kourtney as well as the rest of our family (thanks to Uncle Murray for believing in Kourtney!!!!)

Yes, all of us are going to Regina on Thursday, but, why are we all going? Well, Todd needed to go so he could accompany Kourtney on the guitar as she sings, and Shae and I both could not bear the thought of the two of them going to Saskatchewan without us. For me it has been one of *loneliest* seasons.  I am not sure if it's because of my night shift routine or my lack of exercise due to my back problems, but I am struggling with the "cloud of depression".  For anyone who struggles with depression you know that feeling. Most of the times I can deal with it, but this year it has been extremely difficult to get through it. I have come to realize it is part of my DNA but when I go through this the two things that help me are making sure I get enough sleep and exercise;  the same two things I have been lacking for the past 2 months. I just hope that going to Saskatchewan doesn't exacerbate my feelings of loneliness. I think Todd is secretly praying for cold weather while we are there to deter any thoughts of us moving to the windy city.

As of now, the talk Kourtney will be doing just needs some finishing touches to it, however helping her write her story has been a very healing and rewarding experience for both her and I. We realize how far we have all come since her birth in 1997. We have been through some very difficult times, but we are able to say we have gotten through it with our faith stronger and with a very intact family unit.  It  makes us realize that there can be "blessings in our sufferings".  This week I was reminded over and over again of God's faithfulness to our family when Kourtney and Todd led the worship at church and Shae played basketball and scored the most points for her team. It makes me realize that despite our trials each one of us have found our "niche" and have become stronger because of it.

Please pray for us this week, WE almost can expect an attack from the enemy because we know that God is going to do great things next Monday night, February 11th.

Best Day of 2014

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!

2 Corinthians 4:17
For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.

Welcome 2014!

With the help of my mom and Todd my Christmas decorations are all packed away for another year. The decorator in me loves the clean slate that has been created when the Christmas items have been tucked away into Rubbermaids and stored in or outdoor shed. This time I am even more excited as Todd is putting a new colour on our walls and we have plans of changing up the furniture for our living room. The New Year is definitely my favourite time of the year. Not to sound Grinch-like, but no matter how much I try to embrace Christmas it seems like society’s expectation of a merry holiday season somehow seems to disappoint our family each year, and this one was no different. In the past few years I have been minimalistic in my Christmas decorating but this year I had the time and energy to go for the gusto. I just had a few finishing touches left for Christmas decorating when I twisted my back the wrong way and needed Todd to help me up the stairs. In my 21 years of nursing and 16 years of looking after Kourtney I have never endured back pain so severe that it incapacitated me. At first my family thought it was funny to see me crawl up the stairs and use Kourtney’s walker to get around. But it soon became obvious that momma was down for the count, and all extra duties were all on hold. For 2 weeks household duties were pushed aside, the last bit of garland and lights remained on the floor exactly where I left them. I couldn’t exercise, which made me sad because I felt I was stronger than I had ever been. A heating pad and analgesia were my best friends (sorry Angela you were trumped for awhile).

 Meanwhile Kourtney developed a blister in her esophagus, which meant sleepless nights of not being able to swallow her own saliva and having a spittoon close at her side day and night. I can’t imagine the pain or the discomfort this brings but to listen to her trying to swallow, and to empty her sputum filled cup once again made all of us heart-sick for her. The sucker punch came, however, with a cold and lingering whooping like cough that exacerbated her swallowing and sleep issues for 6 weeks.

 On top of this Todd was busy with the Christmas music program at school; planning songs, decorating and arranging the music. As most of you know, when Todd does something he does it to perfection so many of his evenings were consumed with chosing the right songs, decorations, lights, not to mention shouldering the load left by my incapacitated state, as well being up a lot through the night with Kourtney.

 We thought Shae was rolling with the punches. As my back got better I went on a cleaning spree. Shae’s room looked like a typhoon had hit it,as I picking up her laundry I realized the cat had been using her closet as a litter box. It takes a lot these days for tears to breakthrough my botox (antidepressant) emotions, but when the floodgates opened they didn’t stop. At first I was really angry with Shae for not noticing or smelling it but soon it became obvious that a messy room is also a sign of a messy mind.It was a good reminder for me that I need to check in with her more often and of course not to let the kitty sleep in her room with the door closed (we managed to clean it up and are happy to report the cat is doing her business in the litter box again).

 My parents arrival on the 23rd was greeted with great anticipation. We love having them at our house. They fit in so well and are a reminder of God’s Grace in our lives. However, again Christmas Day was filled with heartbreak for me as a momma; watching my daughter sitting with her spittoon at our Christmas dinner, unable to swallow her own saliva, nevermind partaking in the deliciousness of a turkey dinner. The day, although lovely, at my dear in-laws home and an awesome time with Todd’s sister, Leanne, and family ended up with Kourtney fracturing her right foot. We had been going into Children’s for “serial casting” in order for her contracture to be corrected. It was the first time in a year in a half that Kourtney could walk without pain. But due to an ineffective splint Kourtney’s “new gait” left her ankle bearing weight that it wasn’t used to and bam - pure pain. Kourtney being the tough child she is grinned and bared it through all of Boxing Day. On the 27th, on the advice of Kourtney’s ever-faithful Dr. Courtemanche we took her to the ER in Abbotsford and waited for 4 hours for an x-ray. Although the x-ray didn’t show any obvious fractures, the Dr. assumed her osteoporotic ankle bone had a deeper hairline fracture. After consulting with Dr. Courtemanche, the attentive ER doctor sent us home with follow up at Children’s for Monday morning and instructions for Kourtney to stay off of it.

 So now our trip to Kelowna is a bit up in the air. We are hoping Kourtney gets her ankle casted again and can weight bear so she can enjoy her most favourite thing to do in Kelowna – tubing at Big White. My brother has been gracious enough for us to have my parents stay here until we get things sorted out. As well, Uncle Wonderful is pretty determined to get Kourtney to Kelowna and help out as much as necessary – to me that is what family is all about. Although 2014 is starting out shaky I am once again reminded of how far our entire family (not just Kourtney) has come. Setting goals is kind of the thing to do at the start of a new year , however, I feel that our family is just coming out of one of the best years full of accomplishments.

 Todd has gotten back into mountain biking, has done some amazing backyard projects and recently put together the most polished school Christmas program I have ever have been to.

 Kourtney is going to school regularly, getting out of the house daily, becoming more mobile, learning to advocate for herself and looking forward to getting her L for driving
Shaelyn is doing well in school, loves the trampoline more than ever (even in the snow) and has worked diligently to perfect her front and back flips. She assisted leading her school volleyball team to become district champions, loves her skipping and most recently started skateboarding.

 And myself, until I hurt my back I was feeling the best ever emotionally and physically. I cut back in my work hours and took my kitchen back. My family has been reaping the benefits of many new recipes. Thank you Pinterest!

 The verses that have become front and center for me in 2014 are in Matthew:

 19 “Do not lay up for yourselves treasures on earth, where moth and rust destroy and where thieves break in and steal; 20 but lay up for yourselves treasures in heaven, where neither moth nor rust destroys and where thieves do not break in and steal. 21 For where your treasure is, there your heart will be also.

 Once again, life lessons are crystal clear in our family. As soon as I became semi-comfortable in life’s routine and excited about society’s Christmas expectations my back went out. I had no choice but to slow down and focus on what is important in my life – looking after my family. There is not a lot of “job satisfaction” especially when you are sleep deprived, incapacitated and raising teenagers. Kourtney’s swallowing issues and spontaneous fracture of her ankle made me so grateful for the amazing crisis-free 11 months we had with her. The “respite” was definitely welcomed. However the last 6 weeks of being “uncomfortable “ in life is once again when we have no choice but to turn to God and know that we serve a great and sovereign God. As much as we think we are in control we are not. It is so easy to forget that our strength only comes from a God that provides for our every need. So as we welcome 2014 our family strives to store our treasures in heaven!

 PS. We saw Dr Coutermanche, and Kourtney’s Occupational Therapist yesterday (two specialists together during the holidays is very AMAZING). They casted Kourtney’s foot and it feels much better. We made it to Kelowna to celebrate New Years with, my parents, Uncle Wonderful and his family.

The Kujawa Christmas Tree 2013

EB awareness week.

EB awareness week. I missed it. In order to redeem myself I would like to write from the heart, my greatest goal for creating awareness is by creating unawareness.Confused? Let me explain. What I want people to know is the teenager girl beyond the blisters. One of the most difficult aspects of the disease,are not only public outings with Kourtney but people (friends and acquaintances) who can't see past the disease. The stares, the pity the assumptions that the only answer to her disease is a miracle cure or a prayer for healing. Although we have become very savvy in our techniques of handling awkward moments it still doesn't get any easier.  Many of our caregivers, Kourtney's cousins, aunts and uncles would vouch for us as to how annoying and unrelenting a public outing becomes. My goal is to give you some insight into our "public" lives as well create awareness next time you or your family see anyone who looks different.

 Kourtney handles the "paparazzi" way better than I do. I know, being the mom and all, that I should be the "bigger" more gracious person, however I have developed this innate "radar stare detector". When I am pushing Kourtney in her wheelchair, I generally have the advantage of catching peoples' eyes before they catch Kourtney's when they are trying to "figure" out my daughter. My most effective strategy is to stare back.  It actually works,it creates an awkward moment and they end up looking away. For the people I don't end up catching on my radar, I just run them over with Kourtney's wheelchair and say, "Oops I'm sorry!" (The latter is not true, but sometimes I feel like doing it.  Uncle Wonderful on the other hand has pulled off some 'accidental' crashes.) If you can't keep yourself from staring at least try smiling or saying something nice

The questions and comments are exhausting. Most of the time when people ask me, "What happened?" my general response is "Why do you want to know?" It generally makes people embarrassed and they have no idea how to answer. On rare occasion people say they would like to pray for her.  That is fine as long as they don't do it right there in public.Just remember God hears your silent prayers just as much as your public prayers.  (Kourtney is a teenager and it is embarrassing) A lot of people assume she is burnt to which we reply, "If only it were that simple."  I refuse to give a lot of detail unless people show genuine concern. I have learned not to throw my pearls to swines.

Then we have the "miracle cure" people. The one situation that stands out in my mind was an  lady who wreaked of alcohol , her shirt buttoned up wrong, telling me I should use aloha vera on her. I have had people (strangers) tell me what kind of pyramid product Kourtney needs. (I am sorry but there is a reason it's not approved by the FDA!)  I usually say, if you believe this product will help my daughter will you give it to me for free? This generally keeps that person real quiet after that.  People!!! don't prey on vulnerable families with your miracle cures! To be perfectly honest I have tried a lot of different products on Kourtney which have done way more harm than good. If I "bought" into every product that was going to be a miracle cure I would be a very poor person and my daughter wouldn't have liver or kidney function.  What  I want the world to know is we have dealt with this disease for 16 years, we know it well……you (the product seller) have seen her for 2 seconds……please don't! We have seen modern medicine (and the power of prayer) work the best in treating EB.

The next topic I want to handle as graciously as possible are your child's questions and stares. Because this is about awareness I want to use it as a guide to you as parents to provide the "best response" when your child asks awkward questions. I think the funniest situation we encountered was in Costco. A four year old boy was sitting in a cart and was staring at Kourtney.  He said to his dad, "Why doesn't she have any hands?" The dad smacked the kid and said, "Stop staring!" The child instantly felt embarrassed and looked away. Kourtney and I laughed about this for a long time. Although we don't  condone corporal punishment Kourtney and I feel much more relieved when the parents verbally reprimand their children for being impolite and staring. It stops the kids from asking more. As much as we want our children to be curious and try to appease them, think of the hundreds of times this has happened to the person on the other end, let it be a social education for your child.

Lately we are learning to laugh more at these situations . Kourtney has "sign language" that her closest acquaintances know, she makes us snicker when encountering some awkward moments. Recently we took Kourtney to a skipping camp in Penticton. We were with Kourtney's "old", I mean former, teacher's aide, Tammy. Tammy has always been able to bring out the sarcasm in Kourtney. I was going to leave Kourtney in the gym for a bit.  I know Kourtney can fend for herself,  but I jokingly asked Tammy to "babysit " Kourtney. Kourtney quickly replied, "I will babysit Tammy." There was a man who was standing there who laughed out loud when he heard Kourtney's  unexpected witty sarcasm. That is what we want people to see- not her disease!!!

We know that this will be a journey for the rest of our lives. If I could I would wish for EB to be completely eradicated from Kourtney's life. In creating awareness, my goal is that when people see Kourtney or any person that looks different that they are not seeing just the disease but the funny sarcastic cute teenage girl that Kourtney is. Creating awareness=Unawareness.