Happy 14th.

I hear so many times, "I can't believe that Kourtney is going to be 14! Where has the time gone?" Well for me 14 years has not flown by and I can tell exactly where the time has gone since September 20th 1997. The second you came  came flying out onto the bed, I saw the Lutzer chin of determination and the wise eyes of a Kujawa. Kourtney, your entrance into the world has taken me into a world that I never knew existed, I have become a person I had no idea I could become, and most of all Kourtney Charlene Kujawa, you made me a mom.

The moment you were placed in my arms was the proudest moment of my life. A minute later you were whisked away from me and that was the scariest moment of my life. Almost instantly I was taken back to when I was 8 years old at the breakfast table. Grandpa Harold would not let us sit at the table until we went back to our rooms to get something we needed to give to Jesus. I remember Grandpa Harold put his wallet on the cereal box that was our pretend altar. I don't remember what anyone else put on but I brought a doll and stuck it on the cereal box. The day you were born I did the same with you; I gave you back to God and  felt a sense of pride that God entrusted me with such a fragile butterfly like you. 

I remember the first time taking you to Children's Hospital, meeting with Dr. Prendeville and handing you over to the dermatology nurse, Deanna. I cried because I didn't know how to take care of you and was relieved that someone was there that could help me. About a half hour later you returned with nice clean dressings and two little marks on your arm from the biopsy. At 48 hours of age you already endured more pain than most people ever do their entire life. From that moment forward Kourt, I was determined to do anything so you wouldn't have to feel more pain than necessary.

We fought the disease for many years, and felt like we were winning in some areas and losing in many others. We spent sleepless nights trying to protect you from harming yourself, endless amounts of dressing changes, and your every awake minute being watched so you wouldn't harm yourself. What kept us going was your bubbly, happy personality. Your love for music and your funny dance moves made us realize that there was a lot more to you than your skin disease. 

I learned when you were 6 months that I had to put my boxing gloves on and walk into an arena all alone fighting bureaucracy at federal, provincial, medical, and social levels. Not one stage of your life was straightforward, and getting the help needed took endless amounts of phone calls, meetings and letter writing. I do hope we have paved the way for other families with special needs.

However, all this came with a cost, called burnout. The years of fighting, sleepless nights, dressing changes, doctors visits, took its toll on our family. All my energy was put into your needs, and I felt that the more control I had the better you would do. I felt I was being the best mom to you but through all that I was neglecting your sister, your Dad, and had a lot of anger towards many other people.

 3 years ago there was a horrific accident by a arrogant doctor resulting in an infection  that raged through your body; that is when life changed all together. Your will to live was taken away from you, and I hit a depth of despair that I could not find my way out of. I didn't have your strength to draw on to get me out and if it wasn't for 2 amazing doctors and a wonderful Dad and husband I would not be writing this today.
Since then we have rebuilt, reorganized and reinvented living with EB. We no longer are fighting the enemy but have a called a truce with it. We no longer live in fear of what may happen for the worst has happened - we lost control of the disease. Living in fear of what may happen however is actually worse than living it - and for that there is now freedom in living with this unrelenting disease.
Kourtney your 14 years in this world has taught me to embrace every day and live. I have had to put my own pious insecurities behind me when I see you facing the world and all its obstacles with strength and courage.What we deal with now is a normal functioning teenager, who challenges everything we say and do and has regular meltdowns.We embrace it because  your are acting very normal. We take every day as it comes, every dressing change, and for that matter, every blister.
 Kourtney we were so thrilled to see you go away this weekend with your peers and it gave us Peace that your independance is growing. You are wise beyond your years and we respect you for that. We are excited to continue to watch you grow and develop into the person God wants you to be, not what I want or what your Dad wants. We know your journey has been difficult and we will always continue to be part of it or when you tell us to back off, we will do that also.
 Yep, it has been a long 14 years. If I could have changed one thing I would have enjoyed you more. I can't change the past but I can embrace the future, and am looking forward to the next 14 !

HAPPY BIRTHDAY!

AHHH MUCH BETTER

This week has been cooler and everyone seems to have settled into their school routines. Shae is happy in the morning commuting to MapleRidge with her dad. She loves her new friends and her teacher at school. So far no complaints except from me,  I miss her so much. I loved having her so close to me, picking her up for lunch and taking the dog out to meet her at the end of the day. The dog is definetely confused and always looking longingly at her leash. But it makes me very happy to be assured that her emotional saftey is looked after.
Kourtney is thriving at school, enjoying everything about highschool. She is going to the gym everyday, working out on the eliptical, exercise bike and walking the track. This helps out with her whole outlook on life. Our new caregiver Kim is making  Kourtney's morning routine a very pleasant experience! I have to remember to keep perspective, right now Kourtney's quality of life is so great, I have to be careful not to focus in on the skin but focus on how well she is doing emotionally! This weekend Kourtney is going on a retreat with her school. She is going with Lorraine our caregiver, this is a momentous occasion because Todd and I are not going with her. Scarey? Not at all, we are so excited for her to be with her peers! We thank God for this oppourtunity  for her we are praying it will be very positive!
 In 3 weeks we are headed to Alberta for a family reunion! We are doing the drive through the mountains, we are excited about going and reuniting with our family.

HOT HOT HOT!

Sunday September 11th,
Summer has finally arrived in BC. Today hit a sweltering 30 degrees. Days like this make me sweat just thinking about what to do with Kourtney on days like today! Today was no different and believe me today was one of those days that I feeling yelling out to the whole world that having a special needs child is sooo isolating!

Ok before I start I do believe there were an army of amazing people that helped me out today and came to my emotional rescue, Angela, Flo, Carolyn ,Scott, Shannon and Tania. You guys were amazing today and THANK-YOU for what you did for me today. OF course Grandma Bev and Grandpa Dave were there ever supportive selves today-and for amazing grandparents we are thankful.

So today was our fall kickoff at church. It was an outdoor church at our stadium here in Abbotsford. I was  anticipating that Kourtney would not do well in the heat and hesitated bringing her but we love to go to the fall kickoffs because it is an awesome way to reconnect with people from the summer. We got there and Kourtney was instantly hot, and we knew it was not going to turn out well. We lasted for 15 minutes in the heat and went and found shade. Scott Ediger, bless his heart gave us a water bottle with a fan that Kourtney could spray herself. Thanks Scott- we will give it back to you.

After the service a picnic was planned, there was so many people I wanted to connect with! Shaelyn pushed Kourtney in her wheelchair to where I was chatting with people in the direct sun, and she was crying because she was so hot. I was so frustrated because she could have stayed in the shade, but instead she just wanted to go. Of course she did, but I wanted to stay! We cut our time short and I think many people could "sense" my frustration. This has been the story of our lives, Kourtney's needs come before ours so many times and has created social isolation for our whole family. In some ways it would have been better just to stay home, but then getting out is nice but then it just brings out the worst in all of us. 

We ended up going to the Old Spagetthi factory with Dave and Bev, and enjoyed being with them after that we had friends over for a swim and a good old game of keep away!

Done!

So today we went nowhere quickly with the school board, and we made the painful decision to move Shae from our close neighbourhood school to Todd's school in Maple Ridge! Our reason . . . very poor administration in the school.

We feel that through skipping Shaelyn will maintain friendships in Abbotsford and middle school will be a easy transition for her!

Kourtney is loving highschool so far. Quick update: her mouth has healed up fantastically everyone is pleased and she now has her invisalign braces on. The orthodontist expects Kourtney to have straight teeth in 6 months.

A Sleeping Mama Bear Just Woke Up.

So have to say the start to school has been shakey. This time though it has nothing to do with Kourtney though. She actually is more then well taken care of at school, thanks to Desiree, Jenny and her new grade 12 guardian angel Christa! Her transition to highschool has been very easy, and the best part I haven't even stepped into the school - yet!

Before I get into the the situation at hand I need to preface this with how for so many years I spent days at the beginning of the school year, training teacher's aides, educating staff and even figuring out where I would pick Kourtney up from at school. I spent countless hours in meetings with support staff,  and principals. Shaelyn being 4 years behind Kourtney at school attended this meetings along with me and learned how to entertain herself for many hours at a time.

When Shaelyn started to school I didn't have enough energy to volunteer in the class and welcomed the alone time at home, organziaing care for Kourtney, ordering supplies and countless hours on the phone. Having Shaelyn in school has been a breeze, she is a great kid, doesn't get herself involved in the drama and even earned the citzenship award which speaks to her character. Every year she has had amazing teachers and has exceptionally well considering the lack of time I have invested into her. I have never ever really had to fight for her, however this changed yesterday and let me tell you the Sleeping MAMA Bear has woken up.

OF her 6 years of school I have never requested a teacher, or friends to be with her in the class. We have always trusted the staff at school to make wise decisions, well her grade 5 years has changed all this and I am very livid with her class placement. It is very apparent that decisions were made for the best interest of every other child in Grade 5 except my child.

I won't go into detail, because I do not want to be disparaging to the children in the class, because it is not their fault that these decisions were made. What I will say is that the principal probably has no idea that Shaelyn has a mother that knows how to get exactly what her child needs. However, going to the wall for Shaelyn will mean big changes for her also especially if our plee falls on deaf ears.
I have spoken with the principal but she will not change the class placement unless we have a "compelling enough reason" - Todd and I wrote a letter but have not heard a response. We feel Shaelyn's physical and emotional safety is a huge issue at this point so we are keeping her home until this matter is resolved. She will be going to Todd's school tomorrow as there is room at his school and has picked out a lovely teacher for her. (this is our plan B). We are still waiting to hear from the assistant superintendent to make sure we have exhausted all our options before we go ahead and change her to a different school and a different district. Once again we covet your prayers for our family.