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!