Wednesday, February 13, 2008

Moment of Impact

This is my second post to Kaela's blog and I feel a bit embarrassed that I have not added more. There are a few reasons as to why I have not been able to express myself that have to do with, I now realize, just how much I didn't want to believe anything was really different about Kaela. I have also had a bit of bloggers' block. Ever since Kaela's diagnosis I have accepted fully that my daughter would be different than the typical child and I can say that I do not care. Kaela has grown to be my shinning little pumpkin, so sweet and inocent and she melts my heart with her little smiles and amazes me by saying nothing more than "ba, ba, ba". It wasn't until recently that the gravity of her situation hit me in a very negative way and also a very positive one. Most people want the bad news first but since I can't call the shots with the outcomes of kaela's development I will call the shots here. I'm going to tell you the positive impact first. Recently my family and I attended our first LPA event in Troy Michigan at the home of Stacy, an LPA member and a little person herself. Sarah and I were both nervous because it was an environment that we had never experienced before coupled with meeting new people. The event went better than I could ever have expected. Everyone was welcoming and easy to talk to. The people we met were all amazing and offered insights that we couldn't have found at any doctors office or genetic counceling session. We were also able to meet other parents who shared our circumstances and shared stories with them as well. There was one moment however that I will never forget about that meeting for the rest of my life. Itwas really a small thing now that I think about it but the way it made me feel was what made me remember it long after we got home. We had arrived at Stacy's house in Troy and my wife suggested she take the kids into the house while I parked the car down the street. After parking I walked to the house more nervous now because I would be walking in alone and without my family. When I came in the house I was greeted by another LPA member and she walked me into the living room of the house where I saw the image that impacted me so much. There in the center of the living room was my daughter, smiling and happy as could be, sitting on the living room floor surrounded by little people just like her. That image froze in my mind. It was the most beautiful thing I had ever seen. To see my little pumpkin, welcomed, almost as if she had been saved. Those surrounding her seemed to speak to me with their eyes saying, "its ok matt, we are here now and theres nothing to worry about." I felt an extreme feeling of relief and comfort. I knew at that moment that no matter what happens in Kaela's life she will always have people that she can relate with, share stories with, share pain with. She will have these people and others that will be able to empathize with her like no one else can including myself and Sarah. Kaela will be able to develop relationships with these people, relationships that will be more beneficial than any reassuring words from her parents, any doctors advice, any surgery or physical therapy. To have people to be with that are a lot like you physically when no one else is like you can feel like salvation. I'm glad and we are blessed that we live in a time where organizations like the LPA and the people that make them great are alive and thriving.
Now for the negative impact I have recently experienced. My wife spoke in her latest post about our trip to the hospitalfor Kaelas x-rays. When we recieved the x-ray results it was another moment that I will always remember. I had taken my son William to get a bagel and then I made my way to pediatric x-ray. When I got to the waiting room I sat down to finish my breakfast while William played in the lobby with the hospital toys. Sarah came out shortly after with Kaela. For some reason I felt like I did at every other doctor appointment meaning I didn't expect to hear anything new about Kaelas condition. So I just sat there staring off until Sarah murmmured, "her spine looks REALLY bad." My heart sank. I had been told by doctors from the beginning that her spine would eventually start to curve and that it mayeven be very bad. I had also always been told at those times that her spine looked fine and was not curving. I guess I just expected to hear that again. This time was different. As Sarah's post said before, Kaela's spine is curving and it is curving a lot. It has her doctor concerned and now thoughts of surgery cannot be erased from my mind along with theother health problems that stem from Kaela's kyphoscoleosis. I just didn't expect this to happen so soon and so agressivly. I thought we would have at least a couple years before we had to consider weather we wanted growing rods or regular ones or if we would be worrying because our daughter was having a hard time coming out of anesthesia. I just thought there would be more time. Never-the-less that time is here and we have armed ourselves to the teeth with knowledge and support structures that will hopefully allow Kaela to have a fighting chance. I know she will be ok or at least I like to tell myself that and for now I have begun taking things a doctor appointment at a time. We have our goals and assignments until next time and we will do everything in our power to make sure we stay on track. Well thats all the gushing I can muster for now. Not bad for a second post if you ask me. I want to wish all those other families out there who share our circumstances the best of luck and may god be with you as he has been with us.


Jennifer said...

Thanks for the post Matt. Kaela is such a sweetie! I'll be praying for you.

Hockey Nuts said...

She is beautiful! You both are doing a wonderful job with her and should be proud of all your hard work. I am a firm believer in life that you are given what you can handle and I know you ask why me? but if you ask me, she has the best parent ever. I miss seeing you guys, and am honestly hoping to move to the UP so that I am closer to everyone. I hope all is going well for all of you, I miss you. We are doing great, anxiously waiting for John to finish school so the next chapter of our life can begin. I love you and miss you! Give them both kisses from me. Love, Koneta

Tonya said...

Hugs to you guys! It is stressful being here, but with all things God is Good and knows what he is doing! Kaela is an angel with a great family and she knows you'll make sure he gets what she needs!!

Catherine Merciez Wright said...

What a great post! I feel exactly the same was about the LPA. It's really nice to have such a strong support system.
Take care!