Way Too Long!!

I have to apologize for not keeping my blog updated. There is no excuse and it doesn't mean that we haven't had exciting events in our lives. It is really difficult to know where to begin when I haven't blogged for so long but I might as well start with our butterfly teenager princess Kourtney!!

Kourtney

On September 20th, Kourtney became a teenager! She celebrated with 10 friends at Boston Pizza and then our house for a movie and a birthday cake. Unfortunately after that day life went downhill for her. She went to Children's Hospital for an iron infusion; 4 pokes for an IV and no success! We both ended up in tears and I honestly think the poor doctor was going to sign me up for the loonie bin. You have to understand that being on an antidepressant has suppressed my emotions (especially the tears), so when I do cry the heavens open and the tears are like Niagara Falls (it actually feels kind of good when it happens as it is such a release for me). Enough about me...back to Kourtney!!

After that ordeal Kourtney was not quite herself. She was sinking back into her depression. Her adjustment to grade 8 was rough as she dealt with her labile emotions and the labile emotions of every other teenage girl in her class. There were many mom and daughter pep talks during that time and my heart ached for her. She ended up getting a cold that played havoc on her skin and I became worried that without necessary iron in her body that she could get sick again. I booked another iron appointment but cancelled to go be with my family in Saskatchewan (my dad had a heart attack and was needing bypass surgery ( I will share more later).

I was in Saskatchewan for 5 days and came home to a dejected 13 year old girl; her cold still lingering and her skin breaking down. We ended up getting in fast for an iron infusion and committed the IV to God. We prayed that the right nurse would be given to us and the IV would go in on the first try, and it did. Kourtney cried tears of joy when the nurse smiled at her and said, "It is in." We had other nurses peering through the window that all cheered when I gave them the thumbs up.

After that obstacle Kourtney became perkier but her labile emotions were starting to wear on our whole family. The bottom line seemed to be that she was sore in the morning, her stooped posture, her lack of use of her thumbs despite the surgery in June = a very big depression. I spoke to Dr. Courtemanche about arranging a multi-disciplinary meeting and he willing obliged and began to gather his "peeps" together. On November 8th we had a meeting with psychiatrist, anaesthetist (from the pain team), Dr. C., hematologist, our dermatology nurse, OT, PT , Todd, Kourtney and myself. We all put our heads together for the best plan to deal with Kourtney's joint issues and her looming mood. There was a lot accomplished in the one hour including the possibility of Kourtney receiving a myoelectric arm (research to follow). We were so thankful for this hope as it would give her Independence beyond what any of could ever imagine including taking herself to the bathroom and being the life of the party being able to crush pop cans with her forceful grip. We haven't started the process of funding yet but I believe once we wrap our heads around this it won't take long for this process to start.

So since this fateful day Kourtney seems to have a better outlook on her life. She didn't want to keep having surgeries just to face disappointments. Although the emotional outbursts still are regular we all have a better perspective on how to face them. Her pain control is better and surprisingly she doesn't come home from school worn out. She has a smile on her face and has ambition to keep herself occupied when she gets home.

Todd

Shortly after I returned from Saskathewan, Todd woke up complaining of pain. Janelle instantly recognized it as kidney stones. That morning became our first of many visits to the ER. We realized that our medical system is only designed to treat the symptoms but not deal with the problem. I was so very unimpressed with our local hospital and felt somewhat dismal knowing that I was a representative of that hospital. To date he passed 2 small stones and one large peppercorn sized one that had to be "surgically removed" and is now waiting for a lithotripsy to be done on the other offending stone.

Through all this Todd still has lead the Alpha Band at church, plays in the church band and still remains positive.

Shaelyn

I have to give this little trooper a lot of credit for putting up with all of this. I think her name should have been Endearment. Somehow Shaelyn seems to get through during these troubled times. She generally has our day organized from the time she rolls out of bed in the morning, by asking us, "What are we doing today? - which means, "What am I doing and I won't stop asking you until you give me a concrete answer." Grade 4 has now brought projects, and letter grades. Shae has taken this on and really enjoys these challenges. She continues to do her skipping and is doing very well at speed skipping (which doesn't surprise any of us).

Jennifer and Lexi

Our cat and dog had a bit of an altercation. Lexi tries to dominate Jennifer by a term that we call "humping". This behaviour exhibits itself more when Lexi is in her heat cycle. When Lexi does this it usually ends up in friendly fire between the cat and dog. Unfortunately during one of the attacks Jenny ended up scratching Lexi's cornea of her eye causing photo phobia and pain. Lexi had to go get pain medication and drops for eyes. The poor thing has not learned her lesson and continues on her quest of domination of the cat!

ME, MYSELF and I

Surprisingly enough I have managed to stay even through these little trials of life. I felt myself going down with Kourtney somewhat but was able to keep perspective through it all. I still love my job and always I have a place where I can focus on something other then life's trials at home.

When my dad had his heart attack, I was warmed by the fact that my family wanted me there. After all the trials of the past two years, it became clear that it was truly forgotten and the past became just that, the past. I was able to spend quality time with my mom, dad, and youngest brother Murray who was also getting married that weekend I was there. I believe that I was meant to be there despite Kourtney's torrid state at home. My dad is feeling great and has a whole new outlook and perspective on life!!

We feel very blessed to have my brother Meldon and family in Kelowna. We have not had any of my family that close by and feel it is a luxury!!!

Just last week my sister Sharon came out with her two little ones. We had a wonderful time together and felt blessed to share in each other's lives.

God is not just good . . . HE is faithful. He has brought us through the desert and we feel we are reaching the promised land!!

Back to work, back to blogging.

So I have now returned to work after 5 weeks of freedom. I enjoyed every minute of my time off and now I have to get back to the real world of alarm clocks. I received a warm welcome on my return to work; hugs, and thoughtful words from many friends. At one point I got a little teary, being so overwhelmed by the many awesome people I work with.

So how are Kourtney's thumbs? There has been a bit of disappointment with them but according to the good Doctor Courtemanche, he is pleased with them. They are quite stiff right now so holding a pen is not an option for her. I think the long term goal is splinting them and maintaining the web space as good as possible. I am just thankful that I don't have to figure it out or worry about them. We'll leave it in the very capable hands of Dr C.

Our trip to Saskatchewan was a huge success. We were able to see all the people we needed: including my parents, 4 siblings and spouses, 2 nieces and 8 nephews, my 101 year old grandma, my aunt and a cousin and her family. We felt blessed to be able to with my family for a week. It was a huge let down to come home and not have 20 people over for dinner. My parents house is beautiful. I kept having to remind myself we were in Regina, it was so resort like.

Since we have been home we have had many pool parties, dinners with friends and family. We hosted a bridal shower tea party for Brittany, and went to the fireworks in Vancouver with friends.

Our summer has been packed full so far, but we are still looking forward to visits from my sister and family, a trip for two (Todd and I) to Vegas to celebrate being 40 and also our 14th anniversary. Also my brother has moved to Kelowna so we will go do a housewarming visit.

I felt very teary today, we have so much to be thankful for and are amazed at the God-given energy that channels through our lives. Our lives are so full, not due to what we have, but what has been taken away. We live for the day and try not to worry about tomorrow.

Having said that . . . 40 has hit with some news that I am getting older high cholesterol, high blood sugar levels and a sore body. I have taken some action by seeing a dietician and have undertaken measures to try to keep my body healthy. My nice little antidepressant pill has increased my appetite and I am reaping the benefits of a 15 pound weight gain (ARGH). My friend Carla inspired me on my birthday not to let myself go and I have heeded her advice. Yep even doing yoga 3-4 times a week still isn't good enough it is what I am putting into my mouth that is the problem. Just a little frustrating as I really do have a love affair with food.

So once again I am putting myself out there, making myself vulnerable to everyone to let every one know Janelle is taking charge of her life (once again). I want 40 to be appealing not appalling.

Time Flies! - Happy Birthday Janelle

Yes, time flies when you're having fun and before you know it you've entered a new decade in life. This morning I'll be making coffee and breakfast for my 40 year old wife!

I know on the calendar you're just one day older but you are entering the 4th decade of your life. I welcome you to the club! Looking at our engagement picture (1996) reminds me of how in love we were way back then. We didn't really have a care in the world and made the most of our time together: hiking, biking, camping, and rock climbing and late night visits after we finished work @ 11:00. In some ways it seems like just yesterday but time flies when you're having fun.

Thank you for being my dreamer (and woman of my dreams). We've had lots of fun fixing up old homes and while I've done most of the work, the vision has come from you. Your mind is always in motion; thinking of different and better ways to get things done at home and at work. And our lives are richer for it.

Thank you for being a my wonderful wife and friend for all these years. I'm looking forward to making many more memories over the next ten years when I get to welcome you into a new club, the 50's. Yes, time flies when you're having fun and before you know it the girls will be finished school and ? ? ?

Enough with the future, let's just enjoy your birthday today ! The Facebook birthday wishes from your friends say it all and are a tribute to the wonderful friend you are and I can only say, "I concur, Happy Birthday Janelle!"

Stillwood

So here I am on the Eve of my last day at Still wood camp. I have to say "fitting in" has not been very easy. I missed all the bonding moments during camp training and walked into a camp that has over 150 work crew, counsellors in training and senior staff. Even the married couples have not reached out to me. I am not sure what it is but I just have not felt a warm reception. The oldest out of the crew are 24 years of age; one of them being my partner in crime (believe me we have committed many already). Shawna, a recent nursing student grad and she has been wonderful and open to suggestion. She has been stuck with me for the week. Stillwood camp is tightly run and it is easy to break rules even when you don't even know you are breaking them. Shawna and I were tattled on because we took food out of a certain area and we got a talking to. Our supervisor is a lady with the camp name, Lovey. She is quite the drill Sergeant but has this camp running in tip top shape. I don't think she likes me very much since I came up with some new ideas for medication administration (which has been very efficient).

However, I do love the children. Nothing is better than having a crying little child come to you with a sore head or tummy and giving them a freezie to making them feel better. I love hearing the chatter at dinner, and the children singing songs around the campfire. I get a kick out of the children that I have watched grown up being away from their parents and waving to me just to let me know they are OK. The best was having my own children come to the camp and being a part of this community of 320 campers. Kourtney watched me take slivers out, and learned to drive the golf cart around the camp. We never laughed so hard when she forgot a golf cart is not like her wheelchair. The golf cart has a brake and you continue to go even when your foot is off the pedal! We also sat and just chatted without interruption while Todd and Shae were off on a hike.

I miss my family so much. The homesickness I feel is overwhelming; I just want them to be a part of activities. My heart aches for Kourtney that she has not grown up being a part of camp. I want her to be a part of this community. Shaelyn is coming next week, and I am looking forward to seeing her enjoy the energy that defines camp. If the weather cools down a bit then Kourtney will come hang and sleep out here with me. I love my family even more.

I know it is the small things in life that amuse me but the funniest thing I have seen is one the counsellors that can't swallow pills. He is probably over 300 pounds, so when he came in for pain meds for his back, he asked if we had children's Tylenol or else he would just chew them. I decided not to put him through the agony of chewing the pills so I dosed out the children's Tylenol. The package insert was thrown away but if I did it according to the weight chart the poor guy would have needed 20 chewable Tylenol. I gave him 5 and told him to come back if he needed more. Tonight he came in and needed more drugs. He said he would just chew them, so I asked him if it would be OK if we threw an Advil in also, just so we could see him do it. We of course promised him a freezie. He chewed them like they were candy and not even a face was made. I was very impressed.

I am getting a lot of reading done, my tan is now back as we have a portable nurse's station set up by the pool. I have been hiking up Teapot Hill everyday and enjoying God's wonderful creations! I do love the surroundings, I just need to find an in with the people.

July is here!

The month of July is here! We have used our pool about 3 times, the air conditioner has not been on in the house, the skies are overcast and I am the whitest I have ever have been this time of year. All in all we don't complain too much because we have managed to have 3 successful end of the school year parties without rain and Kourtney has remained very comfortable in this weather with her hands all bandaged up.

The 4 of us went into Vancouver for Canada Day. We stayed at a luxurious downtown hotel, went to the Canada Day Parade and then watched the fireworks. We once again were faced with the challenge of maneuvering Kourtney and her wheelchair through the crowds of people. We sought refuge in our favourite stores, Lush and Lululemon and enjoyed seeing what they had to offer. At one point in the hotel we all crashed on our respective beds and rested. I don't think we realize how our family goes into autopilot to organize surgeries, have parties, maintain the house and yard so when we crash, we crash.

The next day we went to Children's Hospital for Kourtney's thumbs reveal. Dr Courtemanche was his chipper self and talked Kourtney through the first bandage change. Her first thumb was stuck to the bandages, raw and sore. Her other thumb and wrist was completely healed and almost ready for use next week. She did very well. She stuck her head into my shoulder so she couldn't see what was happening. To the untrained eye her little thumbs were a bit of a sorry sight. Shaelyn was a little weak-kneed by the sight and put off by the stench of the 10 day old bandages coming off. We actually thought she was in the waiting room but she did sneak into the room and decided to watch. (That kid has seen so much I am wondering what is in store for her life?) But to the rest of us, seeing Kourtney's thumbs were a monumental sign of Independence for Kourtney. We did not take pictures as they were covered back up very quickly.

We got home at noon and once again all of crashed on our bed at home. We ended up going for a long walk. Kourtney even walked for quite a while on her own while the rest of us took turns driving her wheelchair. We took Lexi off her leash through one of Abbotsford's many wooded trails and she did not hesitate running through the streams and through the moss. Our cute little pet is a hiking dog which made Todd happy.

Once again I am almost astonished how far Kourtney has come since last summer. She wouldn't even walk down the street without fighting us and now her goal is to do a 2.5 km walk in the fall. The more she walks during the day, the straighter she becomes. It has been a long haul, caused a lot of tears but through the struggles endurance has been built into our character. We as a family have learned what it means to rise above the challenges. We need to crash when we need to so that the autopilot can be refreshed when it needs to be used.

I am turning 40 next week, nope I didn't run my half marathon but I think my last year has been a full marathon, and I believe I crossed the finish line when I saw Kourtney's thumbs. There have been many reasons to stop but I believed all the way through that God has a lot more planned for Kourtney's life then we know. I knew that by running this marathon it would be hard on my body and soul, but I knew in the end that fighting the fight would bring my Kourtney back from a sick little girl to a strong and happy child.

I also have started my blog but just need some time to tweak it. Hopefully at camp I will be able to find some time to work on it.

Thumbs up, Kourtney!!.

So, the operation is now over. Kourtney now has two thumbs and a straighter wrist than before. She is sore from where the skin grafts were taken but managed to go to school today with the help of her pain medication. Everything went smoothly. I tried not to micromanage the situation too much, but I did manage to write some questions down for the anaesthetist in an emesis basin (puke bucket). The anaesthetist who knows Kourtney well told me she was going to keep things as simple as possible, and asked if she could take the doodled basin into the OR with her. She then made sure Kourtney was set up properly in the OR before I left. I helped with the IV, ECG leads, O2 sat monitor, and the list goes on. Not one stone was left unturned. It is amazing how people don't get that when we say, "no tape or adhesives on the skin" . . . that is what we mean.

I left the operating room as soon as Kourtney was put under. I walked into a waiting room filled with anxious parents and knew I had to leave. My mom was with me so we went for a walk to Safeway and had lunch. We left for about an hour and returned to the waiting room. I had a book there but I was intrigued by the conversations in the waiting area. It must have been "dentist and ear tube day". I heard the surgeon tell several parents about what he did and how to take care of the tubes in their ears. I watched as the dentist was trying to tell a trophy wife and her husband that their daughters teeth all had to be capped and she would have stains on her teeth. The mom was so upset and defended her oral hygiene regime. The dentist was very clear that this was not her fault but this mom could not get past the fact that her little Jacklyn would have stained teeth. As she was talking to the dentist she was holding her infant son and pulled her low cut V neck over and started breastfeeding him. Awkward!!

As I was watching people come and go, I couldn't help but realize how my life has been a variance from most of these parents. Tubes in ears, rotten teeth pulled . . . pretty routine stuff. My daughter is getting her thumbs released. I had sat in that very waiting room 10 times and not once had it been routine. As I watched people leave, I sat there and started getting restless at the 2 hour mark. I began to get annoyed with the trophy wife's husband who decided to share his cutting edge knowledge about folates. I wanted to yell at him and tell him to embrace what he has and don't worry about folates (not even sure what folates are) . . . enjoy today, your health and your trophy wife. As the time waned on the waiting room cleared out, the garbage was emptied and the laundry taken away. After 3.5 hours I heard the words I wanted to hear, "Kourtney Kujawa's mom, can you come to recovery?" Never so happy to go see her.

I walked in to a very happy, smiling Kourtney, the medication had decreased her inhibitions and her pain. She greeted everyone with a big smile and even winked at Dr. Courtemanche when he walked in. She was happy as can be and grinning from ear to ear. It was a relief to see her pain free and happy. Dr. Courtemanche explained what he did but did not give the staff any post op advice; he just wrote "dressings as per mom". We felt respected by the medical community that day; Kourtney and I were listened to and I was thankful that it went so smoothly.

Thanks to all for the well wishes, prayers and flowers. Much appreciated.

Till next blog post!! Janelle

What I learned from Grade 7 camp

On Friday, Kourtney and I returned from a 3 day camp with her grade 7 class.

I learned that rubber boots with shorts is cool, so are braids held with bobby pins, that black eyeliner is a must have (if you are allowed to put on that stuff) aeropostale, american eagle and hollister were the brand names that appeared the most, and that orthodontists must be making a lot of money these days.

I didn't have to be watching skits to see drama unfold; drama was in the cabins, on the mountain, in the dining hall, drama, drama, drama. I came to the conclusion that apples don't fall from the tree (kids are a replica of their parents), bullies are really not rotten, they're just hurting. I saw the transformation of sweet girls into hard, angry girls over life's circumstances. I saw that a grade 7's can be kind and mean all in the same sentence. What I saw was children caught up in a surge of hormones and their minds not able to deal with their changing bodies.

I saw my Kourtney be part of the quirky age group of children. I loved hearing her giggle way past light outs (to the point that our cabin kept others up), I saw her dancing with her friends and noted last year she didn't even walk, I saw her do what she does best . . . interact with people and get involved in the drama. My Kourtney was at camp - need I say more?

Although the camp ended with a bump in the road, I won't get into it to preserve the integrity of everyone involved. I have to say that Grade 7 camp was a success for Kourtney and I.

I have to give a honourable mention to Tammy as I realize how she has been able to socialize Kourtney with a variety of friends. She is amazing and I can honestly say that I don't ever worry about Kourtney at school because Tammy is around. Thanks for being there for her!

The GOOD, The Bad, and The Ugly

The GOOD.

Kourtney's surgery is booked for June 23rd. All of our summer plans were hinged to this date so we have now have firmed up our plans for the month of July. My mom is coming out for the surgery, and we are looking forward to the visit. We will be having year end school parties and skipping parties. I am also being camp nurse at Stillwood for 2 weeks and we're taking a trip to Saskatchewan during the month of July. I will even be turning 40 and have put in my request for how we are going to celebrate. We are hoping the sun starts shining so we can officially open our pool soon. Kourtney has also written up a contract about her exercise plan for the summer including 3 visits to the gym each week (to think last year she would not even walk around the yard, now there have been sightings of Kourtney running around the track).

The BAD.

Last week Kourtney was at the Physio and although there has been an overall improvement in Kourtney's strength, her hips are still are a huge concern. Kourtney has developed some overall bad habits when it comes to her posture and like any normal person, she doesn't like to be corrected . Although she can correct her posture, she still does not have the stamina to remain in the posture. So we will now have to go see an orthopedic surgeon. They want to try some noninvasive procedures like botox to attempt straighten her out. Hi ho. Hi ho. It's off to Children's we go . . . and go . . . and go . . . and go.

The UGLY.

On Wednesday, Kourtney went to voice lessons and was so excited to share her song with us (which actually should be included in the good section), and out of the blue she started to choke again. She kept saying there was something in her esophagus. I felt it was more of a reflux issue so I gave her meds to attempt to relax her esophagus but nothing seemed to work. After about 5 hours her esophagus opened up and she was able to swallow again. Thursday morning it happened again, but it lasted all day. I had already had booked a spa appointment (I had had a gift certificate for 2 years). I didn't want to cancel, plus I had to give myself time to think what I was going to do to help her. I had done all my usual tricks but nothing was working. After my spa treatment my cell phone was full of messages that Kourtney was still unable to swallow and was terribly uncomfortable. So with the parrafin barely off my feet, my hands soft from the hand massage, and my face tingly from the facial, I began the laborious task of avoiding an emergency visit, getting Kourtney some Iv anti reflux meds, and arranging an iron infusion at the same time since she was booked for one the next day . First call was to Children's Hospital, Dr.Courtemanche wasn't around but Dr. Davis was. He was sympathetic but had his hands tied. He is American and doesn't quite get our system. Determined not to sit in the emergency room I phoned one of the doctors I worked with. He called the pediatrician on call and she called me back; quite willing to help me out. After about two hours on the phone, and making arrangements to go to the Abbotsford Hospital, curtailing an emergency visit and arrangements for an iron infusion, Kourtney yells out, "Praise the Lord I can swallow." Although I was relieved for her I felt frustrated. I called Dr. Davis, and the pediatrician to tell them that Kourtney could swallow and both felt that Kourtney needs a dilatation. Another consult and another surgery sooner than later. I felt a wee bit overwhelmed, so Todd and I went to Ironman 2 for some mindless entertainment. He's still trying to figure out if it's a true story ;)

Last night I couldn't sleep. Sometimes I still find it overwhelming how fragile Kourtney is and how one little issue can turn a day upside down. I was also dreading the trip into Children's and was thinking that Dr. Davis wasn't too impressed that he was having to quarterback Kourtney's care. Surprisingly the day turned out well. The traffic was light, the staff were friendly, Kourtney's IV slid in easily, and Dr. Davis was his usual chatty self and offered to be Kourtney's Primary Dr. (or quarterback - american style).

We just had a nice supper at Mom and Dad K's and everyone is chilling here doing there own thing. No more choking for Kourtney! We are thinking she has been having reflux from the flax seed oil which we've added to her feed for attempting her to gain weight. Who knows, but all we know that she needs to have it looked at. We are just glad we can leave it in the capable hands of a great Dr. to arrange it all. When we know there is a team of people pulling for us it makes a big difference!

Monday, Monday. You are so good to me.

Happy Birthday to my favourite mother-in-law Bev!! Looking forward to a celebration at the Olive Garden tonight.

How I loved this Monday because Sunday was one of the worst days of my life. Nothing went right, except my visit with Adrianna and Shirley in the morning, after that it was spiral downhill. So let me explain . . .

First of all Todd and I had just a wee bit of tension between us as I had ordered some new furniture and when our sectional arrived we both were a little shocked at how it looked. It wasn't exactly what we were expecting and it was a bit of a miscommunication between the salesman and myself. Kourtney loved it but I still had that down deep pit in my stomach that it wasn't what I had ordered.

If you know my dear sweet husband, black is black and white is white - no in betweens. The tension rose and I thought I would have to return the whole sectional. But then Todd began to arrange the sectional in a different order and took out one piece and voila, only one piece needs to be returned. The tension was gone and we both sighed as we sat in our recliner sofa. One cloud disappeared.

Second cloud was when Kourtney, choked on a cracker during communion at church on Saturday. We made a quick escape not to cause a scene in the church. She thought she had cleared her esophagus until she took a drink in the van as I was driving. She started choking again and turning a nice shade of blue. I almost hit another car, and drove home like a mad woman. She cleared her esophagus but the the next day she got plugged up again and it took 3 hours to clear. This means she can't even swallow her own saliva, so she has to constantly spit. I don't think we realize how much we swallow in 3 hours but it must be a lot. The pain is like heartburn, but antacids are ineffective. She sounds like a clogged drain when she tries to swallow.

To add insult to injury our PVR was not working and Kourtney couldn't watch her fav show. We had to get the cable company to reset the system, and were on the phone for at least 45 mins. The lady must of thought we were TV junkies, as Lorraine (our caregiver) described in great detail how important the TV show was and that it was the second last show before the finale. Kourtney cleared her esophagus and shouts out, "Praise the Lord" and then we all cheered and thanked her like she had saved our lives when the cable started to work.

Cloud number 3 was Lexi. She is at the pinnacle of her heat cycle and oh my she acted like a human with menstrual cramps. On Saturday we could not keep her settled as she wanted to go outside "to sow her wild oats", she whined so much that she was hoarse the next morning. The lament continued on Sunday hiding under the bed, in the bushes, behind the couch crying wanting to be left alone. We were all worried about her until I did some online education and came to the conclusion that some dogs in heat, do indeed act like that.

On top of this I had a mountain of laundry to fold, dressing change to do, and a house to tidy up. The only person who was unaffected by all of this was Shaelyn. She rubbed Lexi's tummy, put peanut butter in her Kong, made lemonade for Kourtney, offered to make some eyeballs for my morning company (the Kujawa smores), and told me she thought the couch was OK. Love that kid!!

I love this Monday, I woke up at 0530 expecting an overcast day, the sun was starting to make a early appearance, Todd was relaxed, Lexi greeted me with a wagging tail, Kourtney was unclogged , Shaelyn was her usual chipper self . . . and I am doing my most favourite thing in the world . . .blogging.

Consent signed.

Tuesday we once again graced Children's Hospital with our presence. I was so thankful that the dietician wasn't our only appointment otherwise I would have concluded that the trip was a complete waste of time. Basically she wanted us to increase her g-tube feeds gradually and give her a bolus of flaxseed oil (yep) in the mornings. We had been giving Kourtney flaxseed oil over the last year, but stopped it because we thought it wasn't helping her, but apparently it was helping her maintain her weight. So here we drove for 90 minutes, get put in the infectious holding room to greeted by a dietician clad in infectious gear: yellow gown, mask and gloves (because apparently Kourtney is infectious) and all she told us was to keep doing what we were doing. How humiliating. No other doctors or nurses do this but this woman feels compelled to follow the outdated protocol and not attempt to give us any ideas how we could boost her weight up.

Appointment number 2 was much more profitable, and comfortable! Kourtney decided that she wants to get her thumbs released. The plastic surgeon refused to operate on Kourtney until she was ready. So my brave little Kourtney told him that she wants the surgery done holding back her tears with the thought of skin grafting and painful dressing changes after. Dr. Courtemanche let Kourtney sign her own consent form. The irony came with the double handed signature that Kourtney has become accustomed to because her thumbs have become so fused into her palm. Exactly why she feels inclined to go through the pain of having surgery.

After the business was done, Dr. C opened himself up to us about his wife and her debilitating illness that she is struggling with. He is working less so he can take of her. I was blown away by his honesty and vulnerability. We never feel like an " infectious patient" to him; he is real and sees more in Kourtney than just a child with a debilitating disease. I hope we can inspire him in his challenges that he is facing.

Kourtney and I left feeling satisfied and a little afraid. We don't know when the surgery will be but we hope it will be in the next few months. But we got a good chuckle about the chubby, protocol-following, ineffective dietician compared to Dr. C who couldn't care less that Kourtney may be infected and warms our hearts.

Now for life lesson time: I myself have been in this position where we see someone that may be "infected" with life's trials and journey's. We pass judgement on them and clad ourselves with barriers so that they can't penetrate our lives because we fear that it may destroy our reputation or rub off on us. But yet what we really need to do is open our lives up to the people who are hurting and have been inflicted with disease of the mind, body and soul. To be an effective person in life it is vital that you break down the barriers created by fear, pride and lack of energy. When you have nothing to give, that is when you have the most. It is a process and when you get there the outcomes are rewarding beyond imagination.

Happy Mother's Day

Just celebrated the best Mother's Day ever. Todd made crepes and had his family over. The weather is warmish so we opened up our pool and Shaelyn made the plunge into the 67 degree pool. Soon Claire and Drew splashed their way in and Uncle John surprised everyone by making the plunge. Leanne and I were content to sit in the hottub, and greet our polar bear swimmers attempting to warm up.

It was a truely wonderful day. Although being Mom has brought pain, it has brought more joy. The cards I received from my children clearly reflected that my girls love their mommy!!

(check out Shaelyn skips 2 on the right hand side of the blog...so amazing what Shaelyn has learned in 4 months of being a skipping sensation).

Sigh . . .

This week is a bit brighter for all of us. Everyone in our household is lighter and happier. I feel like the depression cloud is starting to wane and I am able to sort things out a lot easier. We took our weekly trip to Costco yesterday. I didn't have my purse and Todd forgot his wallet. Instead of being upset I went home and got my purse, Todd shopped, and the girls went to the book aisle and looked at books together. I was able to come back and pay for the goods that we bought and didn't have to wait in line. The girls are getting along so well lately; they sit together in the van and giggle, Shaelyn has decided she likes to sing as well so they are starting to sing together. Last year Kourtney could not stand it when Shaelyn was even close to her. Most of the time Shaelyn sat in the back seat of the van because they just could not get along. I love hearing them laugh with each other and cherish their "sister times" together.

I have started my challenge, this one is totally different than the one I did in February. I have decided to take charge of my life again. The biggest area is organizing, communicating and meal planning with my family. Sunday is the day that we will all sit down and talk about our week: what it looks like, when dressing changes will be and what we want to eat for meals that week. I feel like when life gets so busy that I need to connect with my family and try to come up with the "shape of the week". People may think this may be the control freak in me coming out but I feel that with my family there is no middle ground. Control freak or complete chaos in the household that is what it is. I also am not trying to control my family but trying to regain control of my life which in turn will help out my family.

The Kujawa parties have started even before the opening our our pool. In the next two weeks I will be hosting 2 baby showers. Many people are expected at each party - I love doing parties. I am not Martha Stewart -maybe more Rachel Ray, a little more carefree. When our pool season starts, there will be an endless amount of hosting parties. I am looking forward to that!

I am still doing my yoga, but haven't done a lot of running. I am planning on starting this next week. I still want to do a half Marathon before I am 40. With the nicer weather I am so much more motivated. So . . . I am moving on to my next challenge. Having perspective is what I need, and taking charge of my life is the only way to continue on in life's journey.

When My Heart is Breaking . . .

Our weekend to Victoria began with me waking up in a foul mood. I was up late packing the last minute items and folding the endless mounds of laundry that seemed to come out of nowhere. In the back of mind I know I was feeling guilty because of my lack of involvement in prepping Shaelyn for her first skipping tournament. I wanted this weekend to be all about Shaelyn; I wanted to get involved with what she was doing and put my focus in learning how I can best encourage her in her skipping. Our morning did not start out so well as Kourtney was also in a foul mood(apples don't fall far from the tree).Nobody could say or do anything without getting attacked verbally by her. I thought, the only way to respond in this situation was to retaliate and act like a 12 year old myself. So I did. I took care of myself, snapped at anyone who even dared ask me to do something, wouldn't answer when my family asked me a question and ordered Todd to do stuff for me. It lasted most of the day, and to tell you the truth I quite enjoyed it. Kourtney wasn't impressed at first but soon realized how we feel when she is so grumpy, Shae thought it was great to see her mom act so immature and Todd just shook his head and played along willingly.


The charade stopped rather suddenly when we were at a restaurant where all the other skippers were and I encouraged Kourtney to go sit with the girls her age. Her eyes filled up with tears and she said, "Mom, I can't because I am not like them." My heart broke and I could feel that overwhelming cloud of depression encapsulate my body. I told her that knowing that you aren't "like them" makes you even more like them, because every teenage girl finds in difficult to be around new people. But down deep I knew these words to Kourtney were just that and it brought little or nor peace to our hearts.


The weekend was packed full of cheering on the Abbotsford skippers and being in awe of their skills. As we traveled in the van we kept hearing the same song over and over. We would catch only bits of pieces of it but it was a catchy tune and we were singing it when it came over the radio.

Shaelyn did well considering it was her first tournament and she didn't know what to expect. We were proud of her and what stood out the most was her gentle attitude she portrayed to her fellow teammates.

We came back, and on Monday Kourtney did her district final speech. Although she didn't place in the top 3, she was still somewhere in the top 10. We were still very proud of her for standing in front of the crowd with confidence.

Tuesday, we had a trip into Children's for an iron infusion and a meeting with the psychologist. There were some disappointments as her hemoglobin dropped considerably due to the lack of iron in her system, and Kourtney's weight has dropped for no apparent reason. It doesn't seem to end. The psychologist provided us useful tools once again to avoid a slump into a depression. She of course stated she was more worried for me than for Kourtney at this point as she noted my anxiety rising. After fighting traffic both ways Kourtney and I were completely tired and spent. Mom and Dad Kujawa had us over for supper, I can't tell you how pleasant it was to be at their home and be able review the day with my family. Love you Dave and Bev!!

Wednesday was another busy day, but it seemed like a breakthrough day. The tears came easily for Kourtney and I as we finally got to hear the song with the catchy tune from start to finish. The words were so relevant to how we both have been feeling, Click here to listen.

That night Todd and I received the following email from Kourtney. Her words brought me Peace.

Hey Mom and Dad,

I thought it was amazing how that song came on the radio and it totally related to how we feel. I am so inspired by that song. I think that it came on just at the right time in the van because I am just so overwhelmed by my life right now. I love you guys so much and I know that you will always be there in the toughest of times. I hope that you guys have a great time at Build tonight!! Love you!!
Kourtney

Although my heart does break, I do feel that God is with me despite the storm.

Stay tuned, I have a new challenge that will start May 1st!!



Click here to listen.

Shaelyn Skips & Kourtney Speaks

Click here to watch Shaelyn skip at Provincials.

Click here to hear Kourtney's speech at the District Finals.

Life...

I am feeling a little overwhelmed at the moment. The whole contract negotiation took its toll on me. Yes, it was a great outcome, but it took me back to the place where I had been so many times; that overwhelming feeling of helplessness. I just hate the feeling of having to share every out-of-the-ordinary thing that I do for Kourtney. To me, it is our Normal and I don't really want to think about how actually abnormal our lives are. When we came under review I started thinking how abnormal our lives are and I start feeling overwhelmed and mourn the loss of a normal child.

On Friday our van broke down, so I have been trying to juggle life with only one vehicle over a very busy weekend. Thanks to my friend JW and Amy, Shawn, dad and mom K we have managed quite well, but it is always about the juggle. Now, what to do about a new van? Wheelchair accessible or not? I don't know! Life would be so much easier but I don't want Kourtney in it all the time. I wish one would fall out of the sky for us. They are very expensive !! If it fell out of the sky then I wouldn't have to make the decision.

I guess I need a new vision; a new direction to try to take myself out of this slump. I want to set some goals before I turn 40. I really want to run but I don't have the time to do it. I will just have to make time and start challenging myself again.

Kourtney is still doing remarkably well. We were having problems with her shoulders breaking down but after these last few dressings changes, only by trial and error, they have looked so much better. As GB says, the sparkle is back. She can walk straight but she needs constant reminding to stand straight. She resents me for doing that but it is such a habit that she needs to be reminded. I still don't think there is one day that goes by that there aren't tears shed by her in our house. It is so emotionally exhausting and frustrating as we can only attempt to empathise with her pain. I don't think we realize how much her pain affects Todd and myself. Todd goes out to his paradisaical garden and I go to yoga to try and cope with the pain. Shaelyn skips but some days she is so demanding and exhibits attention seeking behaviour that cries out, "look at me."

Time for some good, old, family psychology. You know it actually feels good to vent and I won't apologize for venting because this is our family blog and you want the truth. I am not Michelle Dugger (600 kids and counting), and I can't portray that life is wonderful all the time. My mom always told me that any woman who talked in high-pitched voices are controlling and I have to agree.

I am also contemplating a trip to Regina. I feel compelled to visit my aged Grandma and see my parents. As you may know there are other family members in Regina that I have not had contact with in almost 2 years; I don't know if I am ready to face what lies ahead for me.

If I can say one thing...depression is probably one of the biggest epidemics of all time. Most woman at some point have tried antidepressants, and sleep aids. Anxiety and depression go hand and hand, who and what are we trying to live up to??? I feel like I am starting to slip again into another depression and I want to fight it but sometimes it is too difficult.

I am going to fight it, in a couple of days I want to come up with a new challenge for myself. Does anyone want to join me?

Top ten!

On Monday Kourtney did her speech along with 30 other grade 7's from Abbotsford. Kourtney was one of the last 6 to do her speech. When she got up to the podium I realized how tiny she is compared to the rest of girls her age, but her lack of stature was compensated with her clear and commanding voice.

On April 26th Kourtney will advance to the District finals. (I don't know if I am looking forward to hearing another round of speeches, but excited that my child is there) - a few mixed emotions again.

In two weeks time we are heading to Victoria for Shaelyn's first skipping tournament. We are excited to attend as a family and watch Shaelyn compete. She has been working very hard and is looking forward to competing.

BREATHING AGAIN!!

Last night I worked came home with the "unknown" looming on my mind. Had a restless sleep and then received good news all at the same time. Kourtney's hemoglobin is the highest it ever has been. This is great news of course because of the sabbatical from the iron infusions. The news continues to get better.

A very articulate angel in disguise presented Kourtney's case to the committee and although seeing eyes weren't made blind, her words fell onto very open hearts. We received a very fair and more than adequate contract that will maintain 2 out of our 3 caregivers in our home. This has come as a huge relief for all of us. It means we can continue on with "our normal" life and we can continue to employ Mona on a full time basis.

So what is up next with the Kujawa's . . . I can now start my countdown to 40. Stay tuned.

Take My Voice and let me squeak.?.

click HERE for video

When Kourtney was born, the song "Take my Life and Let it Be" became her song. For those of you who don't know, the song goes through the different parts of the body acknowledging that we are created by God and that every part of our bodies can be used for honoring God. It seemed like every part of the body mentioned in the song was blistered on Kourtney when she was born. Hands, feet, body the only thing that wasn't affected was her voice. Kourtney had a very piercing cry. I remember praying and asking God to preserve Kourtney's voice so that she could sing and speak. As many of you know Kourtney has a powerful singing voice and has been articulate ever since she was very small.

This last week the tension in our family has been rising. The stress we have been feeling with the "new upcoming contract" is starting to tear us all apart. The other day I got a phone call from a man from the Ministry of Children and Familes. He could not figure out our contract. So here I am on the phone after school, Kourtney was wanting a snack, Shaelyn needed her hair in pony tails for skipping, the dog wanted out and I am trying to describe 12 years of Kourtney's nursing history to someone who was very pleasantly confused in a bureaucratic way. My anger was intensified as I was on the phone and then I stepped on the dog harness that was left in the middle of the floor. I am not sure what came out of my mouth but I knew that I had to ask forgiveness very quickly to my family. I was reminded why I don't like talking on the phone and why I love email.

Then, on top of it all Kourtney managed to lose her voice Tuesday morning. The kicker of this is that she made it to the final round of her speeches and was supposed to say it Wednesday.

As I am feeling frustrated I also knew in the back of my mind that Kourtney's hemoglobin may be dropping again. We have had a sabbatical from the lengthy iron infusions at Children's for the last 2 months. We have been trialling oral iron to see if her body will absorb it. Kourtney has no side effects from the iron but I am suspecting it is not helping her (just a hunch - I hope I am hunching wrong about this one). I knew we had to get blood work done in Abbotsford sooner than later so that if her hemoglobin has dropped we could recover it by getting an iron infusion. So I had to break the news to Kourtney that she needed her blood work done. This sent Kourtney into a fury and whatever voice was left was now completely gone after she threw her fit. I was completely frustrated as I heard nothing but squeaks come out of her voice and became completely full of self pity and threw my hands up saying, "Whatever God, I can't do this you need to take this one because I can not deal with all this."

So we got to the lab and I literally had to drag Kourtney into there. As I was standing there waiting in the crowded waiting room,I saw a technician I knew from a long time ago. I worked with her at Menno Hospital and had run into her at the hospital a few time since working there. I called her over and asked if she could do Kourtney's blood work. She was more than happy and Kourtney settled down when she knew that the technician was somebody that I trusted. I knew it was a God moment when I asked her how long she had been working in this particular lab. Her response, " I don't work here, they just needed me here today," actually I said, "we needed you here today!"

This morning there were numerous tears as Kourtney tried to talk and just squeaks came out. She was convinced that she couldn't do her speech, but Todd and I both told her that her voice may get better by the afternoon. I went to the school for lunch and sat with Kourtney. She cried and was debating if she was going to do her speech. Proud Dad, Todd, came to watch Kourtney do her speech and reminded her that God provided the right lab technician to be at the lab that day, God can give her voice back. Then Tammy (Kourtney's TA) had a pep talk with her as well as her teacher. Tammy requested that Todd and I not say anything more because our presence was making her more upset (there were no other parents in attendance yep we were just a little proud).

After the 3rd person went for their speech it was increasingly obvious that Kourtney was becoming more nervous. So they changed the line up and had Kourtney do her speech. Kourtney walked up and said her speech with no squeaks! She was articulate and confident in front of her peers (to see her speech, click HERE. This one was the semifinals, we will post the finals when we have time to do it.) Kourtney then got the phone call that she made it to the district finals- way to go Kourtney!!!

OK! Lesson learned once again, but why is it that we have to hang off the cliff so many times to wait for an answer, is it my lack of faith? I don't know but whatever it is I am reminded once again that I have no control - I just need to be faithful. We are waiting for the blood work results and hoping for good results. If not, we will just have to suck it up and take our trips into Children's for more iron infusions. We will keep you informed.

I slept!

It felt so great to wake up this morning and feel refreshed from a good sleep. This weekend we had an amazing time with people! Big people, little people and preteen people. Work was very busy but we worked with an amazing team of nurses and pulled through the night. I really do love my job. I have met so many amazing friends there, it is my social outlet. I am currently a preceptor to a BCIT student. She is an RN already but she is specializing in Maternity nursing. It has been so rewarding for me to watch her learn and experience many new things. It hit me that I have 18 years nursing experience to share with her, and I am also 18 years older than her. I love the fact that I can take life experience and work experience and help mentor a younger nurse.

There is still that sick lingering feeling as our family gears up for the changes in our nursing contract. But I have been thankfully reminded that God is bigger than all these issues, He is in charge and for that I can sleep easy.

Knocked down , , , again

I have had insomnia for the last two nights. Interesting how after a nice relaxing vacation I can fall apart so easily. This week I have had two very separate, but unsettling incidents happen to me. As much I portray on the outside that life is OK, I have always have refused to live my life in the "victim" role. What goes on "behind the scenes" in our home is what no one sees. Todd and I go to great lengths everyday to make sure that Kourtney's needs are looked after. We have a lot of help in our home but there is not a moment that goes by that the ugliness of this disease stares us in the face.

In the last year I realize how selfish I have become in looking after myself. I don't lead a guilt driven life that I need to be "everything to everyone". Having said that, I am presently walking with a friend down a road that not many people have gone on. Not because I want to play the hero but simply because I have felt the hopelessness and despair that she has had and am willing to encourage her through her journey every step of the way.

I also have learned to embrace people in my life that I know I can trust and they encourage me in every step of my journey. Leanne, Angela, Amy and Jeanne - thanks for being my friends and listening to me and just being there for me and for my special little family.

Now that I have set the stage I will tell you about my week. Kourtney is fine, although moody , sore and tired and feeling the letdown after a nice sunny vacation. The other day I went out for lunch with my friend Angela. She can always say something to me that makes me feel good. She told me that when you see pictures of our family we look like a family that is normal. The bandages become part of Kourtney especially when you see her hanging off the fence at the Grand Canyon. People forget that a trip to Arizona includes tons of nursing hours and nothing but teamwork between Todd and myself. We sent two large boxes of dressing supplies about 3 weeks prior so we didn't have to "lug" 9 days of dressing supplies to the Grand Canyon and through airports. But in our pictures we come across like the typical Canadian family going to the Olympics, and on vacations. I am almost convinced that Angela's words to me were almost prophetic and helped prepare me for the impact that hit me the next day.

I will not go into a lot of detail of what happened to me the next day, but let me tell you I got hit below the belt verbally and was blindsided by someone's comments. I clung to Angela's words when she talked to me. The tears don't come very easily these days but when they come, the floodgates open up. It brought back many feelings of inadequacey, guilt and shame that I really felt I had dealt with but it was obvious by my reaction that there is still a lot I have to deal with. I realized that people who are hurting sometimes hurt other people and blame them for the way they feel. I have been there, but have learned over time that nobody benefits from this.

Then, on top of it all our contract for our caregivers is up for renewal. We negotiated our own private contract 3 years ago which has allowed us to hire Mona, Lorraine and Brittany, and keep them employed with us. It has given us the freedom to go on holidays and also has allowed us to keep Kourtney's much needed appointments at Children's much more manageable and all in all has taken the daily pressure of looking after Kourtney's needs off of us. Unfortunately there is a new set of eyes looking at our contract and much to our total horror it is being questioned. Fortunately, I know I have the right person negotiating our nursing contract for Kourtney but it has accompanied by a lot of sleepless nights, number crunching and having that overwhelming sick feeling in my stomach that I haven't felt during the last year. It doesn't just affect us but also our 3 care givers and their incomes. We will know after April 7th what will happen. We are asking for a lot of prayers and for a miracle to happen. We know that Jesus healed a blind man can he make a "new set of eyes" blind? We are praying this for the committee that Kourtney's case is presented to, that they will see how much this contract has improved our lives as a whole and has added to her wellness.

Thanks to all of you who take the time to read the blog. I am so thankful to all of you that you care enough to read through my ramblings. Believe me it helps me tons to know that there is tons of you out there cheering us on through our continued drama!!

New York Times & EB Research

This is an article from Sunday's New York Times. It explains the latest news with regards to research being done in search of a cure for EB.

Click here for the article.

Arizona-thanks for the memories!!

This is a picture of Todd with his two very beautiful cousins Kourtney and Natalie from Tuscon Arizona.
We just came back from our holidays-first of all we were spoiled rotten. We saw, and did sooo much. We will go into more detail but we just wanted to let you know that we are home safe and sound and have left our hearts in Arizona with The Kujawa family!! The blog will return soon!!

What I learned from my 30 days.

Now that my challenge is over I need to take a few seconds and reflect on how it has changed me. I have so much to do before I leave tomorrow for Arizona but I had to take the whirling thoughts in my head and put them "on paper" before I start into the business of the day.

The success of my 30 day challenge is not about putting my forehead to my knee or touching my head to my toes. The true success has been about commitment. I know I have inspired my own child that you can do anything that you can set your mind to it, no matter how much it hurts and how tired you are. I hope I have inspired other people to live life to the fullest, be true to yourself and look after yourself.

I realize that not everyone can be committed to doing yoga for 30 days, but a 30 day challenge can be about 30 day commitment to 15 minutes of reading, flossing your teeth, waking up 10 minutes earlier, scheduling your day better, and list goes on. All I know is that when the physical aspect of the body is working well, life seems to be a lot better for me.

The most important aspect that I want to share about is my faith in God. I really don't know where I would be if I didn't have my faith and have God in the centre of my life. If I didn't believe in a God that was sovereign (all knowing), I wouldn't be where I am today. I don't think I could ever accept Kourtney's suffering if I didn't believe that Kourtney was created in God's image. I know that God has never left me even when I felt the most despair in my life, it was only I wasn't allowing to give Him the control. Once I took the control out of my hands and fell flat on my face and ended up in the hospital, I was able to process Kourtney's suffering much better. I live every day to the fullest and don't fear what is behind me or in front of me, because I know God is good and he is watching over me!! What a safe place to be.

The other day I received a "verbal badge of honour" from someone that has followed our story from the day Kourtney was born. As much as I wanted to take the credit for all the kind words, I couldn't because I know that it has been my faith that has put me in the place where I am today. I came home crying. Todd thought, "Oh boy she has gotten in trouble at work again," but I sobbed as I told him how overwhelming it was that we have have been entrusted with such a fragile child and how God has used her life to bring Glory to Him.

For those of you who are trying to do it all, or those who can't make sense out of life, take time to start getting to know God and the promises that are available to you. Don't let your preconceived ideas about being a Christian get in your way of knowing Christ. Really you have nothing to lose but everything to gain. You can do anything through Christ who gives your strength. That is my moto and I am sticking to it!!

Countdown Ends!!

I DID IT!! 30 yogas in 30 days, and I feel great. Had a Coke zero today...thought it was rather disgusting, but shopping is not at all. Thanks for your support....leaving for Arizona. Stay tuned when we return. My countdown to 40 will continue!

Day 27

Well I am almost finished my 30 day challenge. Tomorrow is my official "weigh" in as I also participated in the "biggest Loser" at work. 14 women at put 20 dollars in and whoever's percentage of weigh loss is the most will win the money. I don't think I lost a lot of weight but I know my clothoes are fitting me better.

Yesterday I had a feel sorry for me day, and I decided to have a Coke Zero. Kourtney said I absolutely could not have it, and I told her I could because nobody else in our family was keeping up there end of the challenge. She then told on me to Todd and he had "the husband to wife chat" and talked me out of a Coke Zero. He even threatened to throw out my nice icey one that has been sitting in the fridge all month! So I didn't- cux I have come this far.

5 days- and we are leaving for Arizona, so excited and looking forward to the sunshine (although BC has given us a lot of sunshine for the month of February.) 3 more yogas, 2 night shifts,a trip into Children's, packing, packing,packing. (all of Kourtney's dressing supplies have been mailed down to Arizona already)

Day 25-YAY ME!!

Ok, I did it!! The one posture that I have struggled with, 6 months it took me to master this posture!!It is nice to see benefits from the 30 day challenge.!! It is called the standing head to knee pose. After today only 3 more times left.

Day 24 -Fizzled

"Day 24 and I have done yoga 22 times. I only have two days off but I guess I need to make up for it and do doubles. I am super tired but I am going to go and make it to the end!! How is everyone else doing??"

Day 21 - Dreaming of Walls of People

Last night I had a migraine that made me nauseous, and then I got the chills and could not make myself warm. Nurse Todd brought me the Tylenol / Ibuprofen concoction and I fell asleep seeing walls of people in my dream. Yep, went to the Olympics I am still debating whether the pros outweighed the cons or not. As much as I enjoyed being down town and taking in the sights it was rather challenging being there and trying to get Kourtney through the crowds in her electric wheelchair. On the Skytrain one guy was standing so close to Kourtney that his butt was literally in the poor girl's face. I let him know that there was extremely precious cargo "behind" him and he needed to watch his moves. Todd eventually "assumed" (punny) the position and the girls thought it would be funny to pull out the iFart on the Ipod. Thankfully the sound of the Skytrain drowned out the "Jack the Ripper fart".

As we made our way to see the Olympic Cauldron the crowds of people literally came to a standstill as we tried to move against people moving in opposite directions. Kourtney was unseen in her wheelchair and people would walk right in front of her. I "encouraged" to take no prisoners and keep the wheelchair moving and if she ran into somebody they would move out of her way rather quickly (is that what defensive driving is?) The wheelchair did come in handy though as we were able to avoid the lineups to have an unobstructed view of the Cauldron by taking the elevator to the viewing area. We did manage to lose Shaelyn in the sea of people as she did not want to hold our hands and for you who know her, she is very active. She even managed to do a donkey kick (skipping move) amongst all the people. Of course she wandered away from us and we lost her. Todd yelled for her so loud that the crowd stopped for an instant and all looked at our worried faces. Shaelyn heard it and there was her little face searching for us amidst the crowds. She didn't let go of my hand after that. Mind you at one point she was talking so fast and acting silly that she fell down on the sidewalk and once again stopped a large crowd of people.

We had tickets to short track speed skating, so we planned on taking the bus from downtown Vancouver to the Pacific Coliseum. As we stood and waited in line we started getting worried that we couldn't fit on the bus. One bus driver told us that the buses were crowded and they would not make room for wheelchairs. Instead of getting angry I decided the best thing to do is let Todd get angry (no just kidding) I prayed. I told God that we needed an empty bus and the next bus that came along . . . was empty. Some kind visitors from New York let us go to the front of the line when the bus finally came. Kourtney got on and the bus filled up at that spot.

We ended up getting wheelchair seating for the event and saw some name brand people up close; Josee Chouinard, Kristi Yamaguchi and Evgeni Malkin. Kourtney and I were so cold at the arena that I had to breakdown and buy an Olympic jacket for Kourtney. I was so worried about her because she had been so sick that I did not want her to get sicker. She looked so cute in her over sized jacket (there were none left in her size-my size yes- how convenient for me- much rather have a lulu though!!)

Although the Canadian results were disappointing we had an amazing time and were impressed by the athletes. At one point the USA crowd began their chant but the Canada took over and drowned them out. It was very cool!!

At the end of the Speed skating there was a 2 km lineup for the bus to get back to the Skytrain station, but impressively enough we waited for just 20 minutes. The crowded buses with standing room only brought on visions of overcrowded buses in third wold countries. We got to a very quiet Skytrain station and made our journey home.

I am home sick today, Kourtney is still sleeping. It was exhausting for her. Fighting crowds, the overt stares, the comments - she is my true Olympian. As awesome as it was to be part of the Olympics-I still down deep know and understand what true Olympic spirit is all about our pursuit is not about excellence but about living and fighting a disease that affects not only Kourtney but our whole family. I am thankful for our blog supporters that cheer us on by keeping update on what is going on, that is what keeps us going.

9 days left of the 30 day challenge....still keeping up. Although if you notice Shaelyn has a rash in the pictures- I am beginning to think it is a milk allergy. She is upholding her end of the deal, but unfortunately her body is complaining.