Where do you start?

It's been a long time since I hit the publish button on my blog. I have tried numerous times to update but it just hasn't been in me. I'm going to start trying to write again. I do miss it. It would be impossible to try to cover what has happened over the last year so I think it's easier for me to start where we are now. A little over two months ago we brought Kyle home on hospice. Our version of hospice means that while there is no more hospital...no more surgeries...we still treat Kyle with antibiotics and other medications when needed. He is on a very tight pain medication schedule he is in a lot of pain at times so our goal is to keep him comfortable and not scared for as long as we have. He struggles to sleep and that is tough on both of us. His body is very tired but he still is fighting. I'm in awe of what this beautiful boy endures every day...yet he still fights. He told me he won't go to heaven until I can go with him. That was a very painful conversation. He knows his time is limited. I really believe when he's ready it will be the right time for him. It will never be the right time forus though. I don't think there are words to describe the pain of all of this. I would like to end this blog with something Mark wrote. I promise to update at least twice a week from now on. I do want you to know this is going to be a horrifying thing for us. The pain now for our family is so great it takes my breath away. The love and respect I feel for our Kyle is one I could never adequately write about. What this child has endured over the last 7 years is something that you couldn't believe unless you sat and loved on him every day since the beginnig. ****************************** TERMINAL Like many people, my life is full of small contradictions and grey areas. I love my wife with all of my heart, though she would say, with some accuracy, that I don’t always show her the true love in my heart. My family is the most important thing to my life, but they would tell you they don’t see me enough.  I work hard and I can be really good at it but I’m often not able to give 100% to it, or to anything for that matter.  I like to think of myself as a basically healthy person, but I tend to overindulge in food and drink from time to time.  I suppose that I’m somewhat paradoxical by nature.   However, that seems to be changing fast, along with most everything I’ve ever known.   Kyle is “terminal”.   I never thought that I would have to look into my beautiful boy’s eyes, sparkling with imagination life and love, and envision the impending horror that is coming. The thought of no life in those eyes is inexplicable.   I didn’t know what is was like to watch a heart assuredly break in front of me, and feel my own splitting into pieces, until I’ve seen his mom experiencing the long, slow, painful deterioration of her baby.  This abomination is compounded by the realization that, although we share in the angst and agony of this journey, we grieve alone.  Words, touch, even love have no chance of easing the torment.  We can hold each other’s hand through this but the cloud above can darken the brightest of days. Watching all of our kids interact invokes both pleasure and pain.  They love so genuinely and speak so excitedly of a future that will evaporate in an instant, sometime all too soon.   We encourage the fantasy merely by agreeing to their speculation of an anticipated event or just by our silence.   This is all black and white.  But mostly black.   It’s raw, gut wrenching and harsh.     On one especially restless night I searched endlessly for information on how to prepare for the death of a child.  Although there are a great deal of resources to help one prepare for his/her own death, or how to deal with death after it has happened, there isn’t much at all on our subject at hand.  To Kate and me, this is just another situation where we are on our own.  There’s no book on how to do this.  No guide on how to interact with a world that doesn’t slow down no matter how much we want to totally stop time.  No way to make people know how much we appreciate the abundance of cards, letters, e-mails Facebook postings, and the continuous offering and giving of support.  No tutorial on how to help each other and our kids hold our precious family intact and sane while life literally slips through our fingers. No logical solution or determination to the ongoing medical decisions we have to make. So we stumble along, awkwardly blending normalcy with the realization of this imminent and unnatural tragedy.   Life has changed for all of us. Things look and feel different.  What used to be important seems trivial. What was familiar is foreign.  I feel as though I’m learning and experiencing things I’ve done thousands of times in a new way.  Neither of us means to be strange or distant…we just are.   Life right now is more about memorizing his smell, gazing into his eyes, listening intently to what he says and hanging on to those words like they hold the meaning to something mysterious and magical. It’s about keeping him comfortable and happy.  It’s about making sure Alex and Jack aren’t alienated and dismissed throughout this process. When we have nothing else to give, Kate and I need to reach deeper and give more because they deserve it and they didn’t ask for this either.  Life will be random and we will take opportunities to celebrate it with all of them until we’re forced to face our darkest fear.   We also need to just love … each other, him, them the rest of our amazing family and friends and all of you.     I wish I believed in miracles, or better said, I wish I believed that the one physical miracle I desire could happen.   I suppose I do believe in miracles in a way because I think I’ve witnessed some.  I also need to believe in heaven because I need to see Kyle again. I have to believe that we’re sending him to be with my mom and Kate’s mom to play and love without the pain and burden this life and this body has imposed upon him.  I want to be a better man, husband, dad, son, brother and friend because of him.  I wish I could go ahead of him, instead of him or with him, but that’s not the way it works.  Our jobs are here and our destinies are undefined.  We will live here and struggle until we can join him.  I hope he recognizes me. Mark  

Petrified

When Kyle was born we had no idea or concept what care would be involved in taking care of our guy. After 2 years of life he maxed out of our private health insurance. At the time I was scared and mortified....if he had already maxed out what would we do without insurance? Luckily our drs helped point out the way and I quickly got Kyle signed up with our state insurance. For 5 years I have had to have everything done perfectly or Kyle is in jeopardy of losing his insurance- twice a year I have to provide over 50 pages of documentation to show why Kyle needs his insurance and his nurses. When we went to Disney for Kyle's MAW trip we had a scheduled conference call with the state for his yearly phone review, 2 weeks before we left I called the state and told them where we would be. They said oh no problem we will reschedule you for the next week. Great, awesome right?! Yah not so much, so and so didn't put it in the computer and we came home to Kyle having no health insurance. It took 4 days for the state to realize their mistake and correct it, 4 days in our world with no insurance is beyond expensive. This is only one example of what happens in the works of state insurance. Even with all the headaches and chasing my tail I stayed so grateful...even with all the extras they don't cover I still kept thanking god every day for the help. We would honestly be homeless if we did not get this assistance. So 2 weeks ago I received a phone call from the State telling me that after reviewing Kyle's chart they wanted to offer us more nursing hours. They were shocked at the amount we used with the level of care needed to care for our guy. I'm not ashamed to admit that I sobbed on the phone. Kyle has not slept thru the night in 15 months. He is up multiple times a night requiring IV meds and other comforts. I don't complain about it but I'm exhausted. I'm fading. On top of that after 7 years I want to hold and comfort my baby, not hold him down and continue to always be doing painful things to him. So the thought of some additional help blew my mind. Five hours later I receive a second phone call saying...ooops. Wow, we made a mistake..because your husband has a job Kyle only qualifies for a program that has a cap on nursing hours, in fact because of this you will max out his nursing hours in five months. If you max out he will lose ALL of his insurance for the rest of his calendar year. Kyle qualifies for unlimited nursing hours but because M works we can't get that insurance (although if he quit or was fired our whole family would qualify). Shocked, worried, sad. The state had the nerve to say to me...the only thing that saved you last year was your son was extremely sick and in the hospital most of the year. We are being punished for keeping Kyle at home with us. We are making ourselves sick with exhaustion chasing our tails to keep our guy where he wants to be in cooperation and with full support of his palliative care drs and we are being punished for that. Punished because M works his tail off. They tell us there is nothing we can do because it's a federally mandated program. We have no idea what the next steps are. How can a child qualify for one thing and be punished because his parents are trying to take great care of him. XO k

Now what?

There is so much to post, so much to update yet I'm so focused on something I'm finding it hard to deal with much else.  For over 7 years we have fought for our Kyle.  For 7 years there has always been a next step....a new hope...another dream.  Right now we are living in the land of no new steps. No other options....  When we got home from Kyle's Make A Wish it was the first time in over 7 years that there was no next step for me to focus on, no next step to hope for.  It was the first time I had to force myself to realize and deal with the fact that this is our life...there is no miracle cure out there for our sweet boy.  I can say I didn't handle our first week home well, I felt so out of sorts and incredibly sad.  We are maintaining our sweet boy and that is not a good feeling for me.  I'm trying to take it a day at a time, trying to not focus on the future but instead focus on and be grateful for today...for the most part that's working for me but there are moments where all this just seems like to much...to painful.  I so desperately want to fix this..

Our Make A Wish trip was wonderful, to have our family all in the same place for a week of fun was priceless...Give Kids the World which was the resort we stayed at was beyond amazing..they treated all 3 kids like little heroes and that was great for all of them.  I'm  pretty sure the fact that they had a pool that Kyle could walk into was one of our guy's favorite things on the trip  I know that swimming is one of the things that Kyle misses the most.  It was beautiful to watch his sweet face when he walked into the pool...priceless.

<3

If anyone is interested in the Team Kyle Energy Armor bands...please email my girls at teamkyle2004@gmail.com  We need your size and shipping info  <3  thank you EA for this incredible gift...your hearts are beyond anything I could describe....
To see pictures of the bands you can check out Kyle's fb page...  www.facebook.com/livinglifefortoday 

Thank you for loving us.  I know it's not always easy but for those of you still sticking around...thank you. 

why.

Soon after my last post we finally got the official word from Pittsburgh.  They called to tell us that after reviewing Kyle's case again they sadly have nothing to offer him.  They told us at this point all we can do is keep him as comfortable as possible and enjoy our time with him.  I have to say the conversation was short, poor Jack had just gotten home from school and we were having a snack together...the next thing he know his Momma is bawling and speechless.  I called Mark at work and could only whisper the word Pittsburgh...

After meeting with his Drs here we know that this was probably coming but it still hurt deeply.   I will admit I pleaded with the transplant coordinator, asking her what I was supposed to do...wait for an infection to take his life...continue to watch him suffer with chronic pain and exhaustion?  As his Mother how the hell do you do that?  After 7 years of fighting for his life I'm supposed to sit back and wait.....how?   I'm his Momma, I fix everything. 

I guess the worst part of the day was Alex coming in and asking me what was going on.  After telling her we would not be traveling to Pittsburgh her face completely fell and she asked me if her brother is doing to die?  How in god's name do you answer that?  It was almost as painful as the phone call....for Alex's privacy I won't get in to our entire conversation, please know we are getting help for our kids and I do appreciate all the emails with suggestions for them..

We are so heartbroken, but we are not giving up.  For now we are keeping our Kyle comfortable, we are exploring some options to keep him even more comfortable while trying to listen to his wishes of no more surgeries...His care is increasing and I'm finding it more and more overwhelming...I'm juggling with trying to be his Mom and his nurse, there are days where it hurts so much..I want to hold his hand not hold him down. 

We leave for our Make A Wish trip to Disney in less then 2 weeks, we are so nervous but incredibly excited...praying our sweet boy can enjoy all the things he's been talking about for the last 2 years. 

XO
K

Still here. I hope you are also.

I have tried to blog so many times and every time I sit down to do it the thoughts and emotions come out all jumbled and I end up deleting it. I'm determined to hit publish on this when I get to the end. There is so much to update, our Kyle....my little guy who still makes my heart melt every single time I see his face. As most of you know we had the gastric pacer placed in his bowels. We knew it was experimental and you would think after all this time I would be able to keep my emotions in check and not get to hopeful but that was not the case. The pacer was a huge bust for Kyle, not only did it cause two major infections but it didn't help our guy's motility at all. It was a painful process for all of us. Mostly for Kyle who had to endure the infections and the painful process of us trying to get feeds started. At one point he actually told us that he doesn't want to keep trying food, it makes his insides hurt to much. It was a painful conversation for all of us. Kyle's records were sent to Pittsburgh where he was evaluated for a multi organ transplant. We got word from them a few months ago that he was not a candidate for transplant. They believe strongly that he would not survive the process and sadly they can not give organs to someone who they believe would pass away from the process. This was a devastating blow to us. A transplant was our Kyle's only chance at a life. We took this news hard and we are still trying to absorb it. We will be traveling to Pittsburgh soon as the intestinal care team has offered to evaluate him to see if they can help keep our guy comfortable. There is still a slight chance we can get to Pittsburgh and after they see him they would reconsider his case but at this point we are not sure we would put Kyle thru all that. At the end of the day he would need 5 organs. Please understand that we are not giving up. We never will give up. Never. But we are re focusing our energy in to living every single day to the fullest. Kyle has been very vocal lately on how he wants his life to go. We are listening to him and including him in all decisions. As his Momma I may not like some of those decisions but I need to remember that Kyle is the one living inside his body, not me. I'm grateful for the team we have that surround our guy, Kyle is asking to stay out of the hospital and unless he needs to be in ICU or he gets a line infecition we will be keeping him at home. We have a hospital room set up here and again we are blessed to have all the needed supplies and medicines to keep him comfortable and safe. He is attending school as often as possible although he's only making it a couple hours a day. When he gets home he tends to sleep a lot but it's so worth it. He loves school so much and again when he is at school he is surrounded by an incredible team. There are still so many things to update but I need to take it one step at a time.. I have missed blogging...the release it gives is a huge help. So I hope this is not to confusing to read...I hope to be back tomorrow to tell you about the incredible and generous people that have come in to our lives XOXO K

Coping

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

update

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.

XO
K