Tuesday, March 29, 2011


I never gave a lot of thought to coping. How we cope. I have over the last few years realized that people cope with things in different ways. I know that in a sense some people feel there is a healthy way to cope with stress and fear, but I really think and believe that no one can force you to cope in ways that are not comfortable with you. I think we can all be taught better ways to cope but that you need to do it in ways that your comfortable with. I do know that when I'm hurting or scared I tend to pull away, shut down and go to a place that is comforting to me. My coping skills lacked so much that in a way it almost put an end to my marriage. Mark and I coped so differently with Kyle's illness that instead of trying to work together and bring our different coping methods together we ended up driving each other away. I felt the overwhelming need to be strong and be super mom. While in reality me showing that I wasn't would actually have been better. Being strong all the time is not a coping skill, it took me a long time to see this. My kids needed to see that I was worried, my friends, my husband. Putting up a front only works for so long, it's exhausting. For me being human showing real emotions was to painful. I think that a big part of me was worried that if I finally admitted that our Kyle was really sick, that each day I worried he would not wake up, that at some point his little body would no longer be able to fight this incredibly hard battle....if I admitted that and tried to process and cope with that....well I think I was afraid I wouldn't get up anymore. I do see now that it's ok for me to say my fears out loud, that talking about them with someone is a coping skill that I need. I am lucky, my husband, my family, my kids all accept me for me. They have helped me be real, to learn how to cope in a healthy way. I'm not all the way there yet....but I'm not sure anyone is ever all the way there. Our Kyle had his picc changed last week and also had a study done. The results of the study while no surprise were hard to digest. We know we are running out of options. We head to Columbus the second week of May, for our last shot before we have to make some incredibly hard choices. Kyle is not happy about the return trip. We are trying to keep him positive, he loves some of the nurses and therapists he got to work with, but he tells us he's scared...and I can't blame him. XO K

Wednesday, March 16, 2011


I felt that overwhelming urge to blog this morning which felt really good...then I opened up my blog and felt a loss for words. I stared at the blank white page and wondered where to start....things have been, ugh...tough, trying, overwhelming....for weeks we have been trying to make some very serious decisions for Kyle and his future. Probably the biggest ones to date and I have found that to be beyond hard. It makes my Momma heart hurt and it startles me awake at night and fills my dreams with fears. Kyle and I are not getting much sleep and I know that's not helping my current mental state. We have been trying to take all the information we can get our hands on and used that to decide to go back to Columbus in early May and take our last shot at trying to get our sweet boy some relief. It is our last step before heading to Pittsburgh and going the transplant route or I should say having Kyle evaluated. Sadly it looks like Kyle would need at least 4 organs and that's alot for a little boy. It's not where we want to go and it's also not a for sure thing, but sadly we have to start thinking and talking about it. Our other children are filled with questions and we have been trying to answer those questions as best we can but it's hard when you don't have the answers.

Our family has been surrounded by love not only from our family and friends but by our community and our neighbors. I honestly have been in awe of the love shown to our family and I'm beyond grateful. Some of our worries and stress have been alleviated by these incredible souls and I will always be grateful to them.

I'm all over the place, but if your a long time reader you know that's pretty normal for me.;) We head back in to the hospital next week for some testing and a new line for the big guy. After what happened last time Kyle went under I'm petrified but I take comfort in knowing that Kyle's team here is working behind the scenes to make sure our Kyle is safe when this all takes place.. I will update from the hospital next week and promise to keep you all posted. As alwasy...thank you....for loving our Kyle and honestly...for loving us.


Thursday, March 3, 2011

How are you, how is Kyle?

It's the question I swear that makes me cringe the most....you see, I want Kyle better with every single part of my body, but so do so many people. When people ask how Kyle is you can actually see the hope in their eyes or even the hope in their text messages, emails, IM's....they want Kyle to be better almost as much as we do. Most think since we are home that all must be well...oh I wish that was the case. Things have been tough, we are completely unable to start anything thru Kyle's tubes and now it seems he is losing motility in his esophagus. He is unable to handle his own secretions and we have had to start another IV med to try to help with that. His energy level is low and his overall condition is still troubling us. We had thought he'd be back at school by now at least at half days. His team is talking to us about going to Pittsburgh to talk to their transplant team, what is troubling is the amount of organs that Kyle would need transplanted. The odds are not even close in his favor. We still have the option of going back to Columbus to place the pacer but we've been told the chances of that working are poor. Sadly we need to make a plan soon...the pressure to make that is overwhelming us. I keep hoping for peace in my heart, that I will wake up one morning and just know what to do....

Please keep asking how Kyle is, ask how we are....but know depending on the day you may get a very truthful answer. <3