Christmas Update

No, I am not ready for Christmas. It’s not a season that I enjoy because for years it has left me with so many unmet expectations. I secretly resent the whole holiday season. (OK, now it’s not a secret).  There are many reasons why I feel this way. I won’t bore you with the bitter-sweetness of my Christmas experiences, but I will tell you how this year I have a whole new view of Christmas that has not only changed my life but has actually made me excited for the holiday season.

As many of you know Summer 2014 will go down in Kujawa history as one of the most difficult summer’s ever.  It started June 30^th with a tragic event at my work. The months that followed were filled with nightmares, chronic shoulder pain, constant sweaty palms and heart palpitations. I did what every mom and most nurses do; I ignored the symptoms. I did not realize the effect that this traumatic incident had on me.

The summer was Instagrammed as #staycation2014.  We decided not to take our annual trip to Saskatchewan. Kourtney had been accepted into a program for physio and occupational therapy in Vancouver.  Kourtney’s health had been so good lately that we thought this would be a great window of opportunity to increase her mobility. We also were given a lot of Hope that she would be able to drive which was huge motivation for her to keep active. By the end of the 6 weeks rehabilitation, there was little or no improvement in Kourtney’s mobility and were told that we should give up on the idea of driving because it was going to cost too much money to convert a vehicle for what she needs. My heart sank. I reconciled my grief by acknowledging that I got to spend quality time with my two girls in one of the world’s most beautiful cities. But the grief started to win.

Take a step back to the June 27^th, the teacher’s strike action took place. The teacher’s walked off the job completely causing a financial stress that we had never endured prior to this. (This last year I reduced my hours from full time to part time). The same day Todd ended up in the hospital with kidney stones. He was in agony most of the summer and spent many days laying in bed in a haze brought on by the strong pain medication. He did find a great summer job though!  So, many of the summer duties landed on me so I had to ignore the symptoms. I had to pull through. The teacher’s strike lasted into October and so did Todd’s kidney stones. So with finances being short and Todd enduring 3 surgeries I needed to keep going.

To add to all of this, Todd’s dad, Dave, fell and broke his hip. Although he got through the surgery like a rock star, it hit home the fact that we have become the main support to our main support system. The change in roles is not easy for anyone of us. It has been a huge loss of independence for his Dad and his mom -a loss for us of the greatest support we had out here.

The teacher’s strike was for the public schools.  Kourtney is in private school so it didn’t affect her.  It’s her grade 12 year!! It should be a time of celebration but for me all I saw it was a huge amount of paperwork to start her transition into adulthood. I emotionally couldn’t take it on.  Most mornings I couldn’t even get out of bed to see her off to school. I told Kourtney she was on her own as far as completing her school work.  We also anticipated needing new caregivers. The problem with hiring the young ones is that they eventually get real jobs, they get married, and they get pregnant.  In preparing Kourtney for the transition to adulthood we decided to hire an agency for nursing care. 2 hours in the morning 2 hours in the evening. We said goodbye to the fulltime caregiver for the 1^st time in 7 years. Kourtney is attending school full time and wants to be at school because she has developed a great social network of friends.  Her health is fantastic and is independently taking on school work, organizing caregivers and taking charge of her own care. It is finally happening! Something I am thankful for. But I continued with my grief, I didn’t want to do anything for her.  What kind of mother was I?

Then there was Shae. Due to the teacher’s strike she started her first year of highschool 1 month late.  This year she hung up her skipping rope with the hopes of playing highschool sports. We decided to keep her going to school in Maple Ridge (45 minute) drive away from Abbotsford for 2 reasons: sports and friends.  However, because of the teacher’s strike, many teachers in her school decided not to coach extracurricular sports (hit#1), and then hit #2 came she went through a bullying incident by, well . . . her friends.  It was a painful to watch.  We gave her the option of changing schools to one in Abbotsford. But Shae stood up to the challenge and came out of the incident stronger, confident and learned about the follies of WOMEN. She is currently playing community basketball and just found out she is on a club volleyball team in the New Year.

On top of this, our dog and two cats had fleas. (No we didn’t know there was pill that you can give to house pets that doesn’t allow the fleas to host on them!!!). We have never had this problem. The vet told me that they were very difficult to get rid of. I felt violated with these small harmless bugs. But I didn’t have the energy to look after them.  Todd had to deal with them. All I could do was curl up in bed and pretend there wasn’t a world going on. IT all became too much. Happy to say that the cold weather got rid of them and our pets are flea free and loaded up on medication.

I continued to work, until one day, a coworker came up to me and said, “what is wrong with you?”  I started crying. I knew I wasn’t feeling right but there were no words to express the looming cloud over my head. The tears continued.  A week later I left work and have been off for almost 2 months now. If I wasn’t crying I was in bed curled up in ball just wanting to sleep. I became withdrawn, angry and paranoid that I was being judged. I imploded on friends, and my husband, my girls would try to talk to me and would remark, “Mom you are in the tunnel.” I couldn’t deal with the simple tasks. I didn’t want to go the gym, I didn’t want to go shopping (something was definitely wrong), I didn’t want to live. It’s not that I was suicidal; I just didn’t want to face another day. It just seemed overwhelming.

Without going into a lot of detail, I got the necessary help I needed. Taking time off work has been the best for me. I took care of myself. I saw old friends, and met new friends. My time with my family has been luxurious. I have myself in a daily routine, and my life has become meaningful again. It’s the first time ever that I have taken this much time off work and not been through a crisis with Kourtney. I rarely get “physically sick” the same cold I had for 24 hours Todd has had for almost 8 weeks. So I plow through life’s hurdles with no reason to stop going- but then my brain can’t take another insult so it stops processing, and I shutdown. It’s called depression. I’ll never forget as I was going through all of this Shaelyn hugged me and “said depression hurts everyone.  If someone you know has depression tell your doctor” - a line from a commercial on TV. It’s the following quote that got me

through and has given me a totally new meaning for Christmas:

As the summer months progressed to fall I was burdened with guilt that if only…..I had done more physio for Kourtney, if only I had done something else that baby wouldn’t have died, if only I had a better spiritual life, if only we didn’t put Shae into high school in Maple Ridge. I felt as though I needed to “figure out” what had caused this emotional state.

But as the Christmas season approached, the correlation between the this quote and Christmas became clear. “Jesus came to earth to meet us”. He left the glory of the heavens to be born in a stable for heaven’s sake. Why don’t I feel worthy or capable in the sight of my heavenly Father? You don’t have to arrive to meet Jesus; HE meets you where you are AT!!! I am worthy in HIS sight and that’s all that matters.

So, taking this into the new year will be the challenge, as I plan my return to work, start applying for funding for a vehicle for Kourtney, and transitioning her into adult life. As well we will be praying about colleges and universities with the hope for her to be able to live in a dorm for a year. There will many discouragements along the way but I have to constantly remember that Jesus will be at our family’s side coaching us along- simply because that is where HE meets us. So now when I am asked “are you ready for Christmas?” I reply no “Christmas is ready for me”. It’s the simple truths that get me out of bed in the morning.

Hanging in there.

We have had some major disappointments this summer. A teacher's strike since May which has left us without our main source of income (strike  continues to go on with no end in sight). Due to the teacher's strike Shaelyn's elementary school days came to abrupt end and missed all the "graduate" things to do. Todd continues to battle painful kidney stones.  A major incident at my job that has caused chronic shoulder problems, nightmares and fear -  I  have continued to work since I am bringing home the only source of income. Kourtney worked diligently doing physio with the goal of getting enough range of motion so she could drive.  Kourtney was later told by a "professional" that she might as well give up on driving because it will be too expensive. Then Todd's dad, Dave, fell and broke his hip requiring surgery, plates and screws. 

Kourtney is doing well, but that does not mean in any uncertain terms that her care has changed. Although it may seem mundane, I remind myself, "who goes home after a 12 hour shift and does a dressing change?" Although we have so much to be thankful for from where she came from a short two years ago....her disability still stares us in the face even more as she transitions from being a child to an adult. All I want to think about are grad dresses and college applications. 

 

It took my breath away!

We are back from Sunny Saskatchewan. We feel well rested  and were well taken care of by the entire Lutzer clan. Have to be honest.... it was one of the best times we had. The cold weather was outweighed by the warmth we received by family.

The crescendo of our full five days was Kourtney's talk about "making a difference". It was the first time Kourtney has been the guest speaker/ singer. The preparation for this was overwhelming for all of us. I took the task on providing the framework for her speech, and then Kourtney went through and added more and deleted items that she felt were more my words. Todd became the editor and fine tuned her speech, as well designed the PowerPoint.  The 3 of us work well together..... If we aren't all in the same room.

The morning of The banquet the last part of Kourtneys speech had to be written, the pictures on the PowerPoint organized. Kourtneys dressings needed to be done.So I decided to clean my mom's pantry?!! If any one knows my mom you know that she always is preparing food or having people over. She loves to cook and bake buns and cinnamon buns. This gift of hospitality  comes with a very well used kitchen pantry that needed some reorganization. ( I even had my dad go out and buy a label maker).

Cleaning the pantry was my way of coping that day. I woke up with a cold sore because I was so nervous about the evening. You see after 16 years of traveling the road of EB  it almost felt like we were entering the promised land . When Kourtney was first born I was given the promise that her life's purpose was to serve The Lord. However over the years as you know the road hasn't been straightforward, I was almost anticipating something to go wrong that day. But God saw fit to keep Kourtney healthy is the dry cold Saskatchewan weather. (which in the past has caused irritation to her eyes as well as skin infections)

The tension between Todd, Kourtney and myself was palpable as I was easily distracted from the finishing touches of Kourtney's speech, by a mystery spice in my moms pantry cupboard. This made Todd frustrated and Kourtney visibly distressed. Looking back it would have been quite the sight to see.

Shaelyn...... Was oblivious to all of this and even was had some  retail therapy with Grandma Charlene.

As I was getting Kourtney ready I said to her we are " here", we arrived..........

It was a fun banquet full of door prizes and trivia. I was unable to enjoy the food as I was so nervous. Kourtneys heart was pounding and so was mine.

When Kourtney started speaking it was like a silence fell over the room. Her voice was so clear and she read it so smoothly.  It took my breath away!!!There was enough humour sprinkled through it that the heaviness of the disease didn't overshadow the speech. Seeing Kourtney up there made me realize that a goal of Todd's and mine was accomplished Monday night February 11, 2014. Our daughter Kourtney was no longer the fragile butterfly to be pitied but  a butterfly that can greatly affect mankind! If there was one moment in time I could make sense out of her suffering.....it was that evening.

On a side night I have to mention our dear sweet Shae . She is an amazing child with an ability to draw people in ( especially her  younger cousins) with her calming sweetness. As well accolades to Todd for putting up with all my families idiocycrancies and using his musical talents to serve The Lord. I know many husbands would have not taken on what he did this week for my family. He is a great man!!!

We are back in dreary BC but have found new purpose and new perspective. I have officially become Kourtneys. Manager..... So if you ever need a good little speaker let me know!!!!

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.