So it’s that Time of the Year again.
So Mito awareness week has come and gone. A couple of weeks ago Terra again asked me to write a blog post for Mito week and once again I have waited for the week to end before writing. Oh well, does it really matter? Realistically it’s Mito Week every week at our house.
Last year Terra asked me to write a paragraph about what Mito meant to me and it turned into about twenty paragraphs. I think Terra about fainted when she found out that I had that much junk rolling around in my head. So this year I will do this same. It will probably be shorter and maybe just an update from my post last year (I’m sure Terra will link last year’s post in here somewhere).
well not really.
Like Terra does on occasion in her posts, I ramble along once I actually get started. I still do not like to talk. I still do not like to share my opinions outside of the home or work. But I will again try to open up a little bit this year.
In my non-medically minded brain Kendall has had a good past year. In my memory-challenged mind, I believe it had been about a year since Kendall had been hospitalized that actually kept her inpatient overnight. This lack of hospitalization can be credited to many things but I feel it is mostly due to Terra’s oversight and monitoring of everything Kendall and the TPN nutrition she has been getting for over a year. It is not fun hooking up an IV to her central line every single night that runs for about 16 hours a day but if it keeps her home we will do it. This isn’t to say that everything has been great with Kendall medically. She had been having increasing issues with her bladder and has lost function in her bladder like she has in her gut. I don’t want to rehash all her medical stuff but this is how Mito works. Every time she gets sick her baseline drops, she loses function and so far with Kendall that function isn’t coming back. Hence the most recent round of hospital stays due to bladder surgery and infections associated with them. She now has another “port” into her bladder that we can drain urine out.
That’s the Ben Atkinson Cliffs Notes version of Kendall medically over the past year. If you want more, read all of Terra’s blog archives. But most of you aren’t reading this (my post) for my medical update of Kendall, it’s my perspective on the whole situation.
My perspective on the medical situation is easy. I make decisions based on logic without emotion. Terra makes decisions based on how she feels and her emotions. This is how Terra and I are different on the medical side of this Mito junk. I also feel that this difference between Terra and I is very helpful when making decisions for Kendall. For example, take the recent bladder surgery. My question to answer, although painful, was very simple, would the surgery improve Kendall’s quality of life? That is it -that is all I needed to ask. Terra had so many more questions to answer. Terra thought about the pain level, the surgery itself, the risks, the scars that Kendall would have, the additional tube, the recovery and I’m sure many more. But Terra and I balance each other out in the decision making process because we get to see each others thought process and views and make what we feel is the best decision for Kendall medically and I guess socially.
Let’s move away from the medical stuff and into what you all really want to see and read…the personal crap. The stuff that goes on behind the scenes in my mind and how I see our family. I can only assume some of these things are typical of living life in a house with a medically fragile child. This is what I hate about Mito and I guess any other disease that affects families. First off, yes Kendall is medically fragile. Most people get to see Kendall when she is at church smiling and looking fairly normal. Realistically we don’t take her out much when things are acting up inside of her. Why would we? Here is what I see in my mind when I think of Kendall being medically fragile. Picture beautiful Kendall smiling ear-to-ear as she does standing on top of a large red rubber ball, balancing her now three drainage bags draining her stomach, gut and bladder in her hand and her TPN backpack on hooked up to her IV while slowly rolling that red ball on the ledge of a fence where on one side of the fence is a 500 hundred foot cliff that drops into the Ocean and on the other side of the fence is only a 250 foot cliff. When she losses her balance she falls either 250 or 500 feet. Which one would you pick? They both suck and lead to nothing good. This is why we take Kendall out on a very limited basis but it is getting even harder.
Kendall is continuing to develop and becoming so much more like a three, almost four year old. This is awesome but so challenging at the same time. Kendall gets “left out” too often when we have plans as a family. She is now very conscious of when we leave and she is left home with her nurse. She hates being left out and it kills me when we have to leave her. We constantly have to make family decisions based on how Kendall will be affected. Will she miss a much needed nap, is it too hot, is it too cold, is there a small chance she will get wet and ruin one of her many tubes sticking out of her body, does she have attachments connected to one or all of her tubes, will we be out too late and past her 7pm bed time, is she losing her balance on that red ball and teetering ever so close to falling off of that cliff. All of these questions come into play when we try to do simple everyday items. How can we continue to live like this?
Here is the thing; I think we strive to live through these kinds of decisions and day-to-day medical fragileness, and have been doing a decent job of it, but at some point, the juggling act that Terra and I do is bound to fall apart. This is the hard part to put down on this post. As I said last year, Terra is one of the strongest people I know and I am sure several of you out there wish you had her strength, I know I wish I did. I still feel the same way. Terra is so very strong. But are my thoughts of Terra being so strong the wrong way to think about my wife? I try to support her but it’s not something that I have done very well. As a matter of fact I think I fail at this consistently. As I reflect on this now the way of support that I provide is probably too often not what she needs.
I support Terra through exhaustion myself. With my work schedule I travel 40-45 weeks a year, being gone on average three nights during the week. Many have asked why I don’t get a job where I stay home and don’t travel regularly. Reality is that I have so much freedom in my schedule that I can drop everything and rush home if an emergency comes up. I don’t know if I would have that ability if I did something different, at least that is what I am currently telling myself. I work long hours during the week (as many do) and then come home and get more exhausted. I do my best to support Terra by taking over the care for the kids so she can get a break. Actually while I type this Terra is at a hotel at an undisclosed location in the Chicago area because this week and the last few were just too much. I try to support Terra by sending her away??? Does that make any sense to people out there? Maybe not when my focus on support is by giving her time away? Don’t get me wrong I know that she needs the time away, heck I think every mother needs some quiet time away. They probably need more time away then we (fathers/husbands) give them. But Terra also heads out a lot with her friends to just talk to a real person instead of a computer like she does during the week. Are you seeing a pattern here? Why am I sending here away all of the time? I definitely think the time away for her is very healthy but what am I not giving here. I am not giving here my time!!! Ding, Ding, Ding I am the winner of my own question contest. This is again why I hate Mito. It is not the disease itself but the aftermath of what I think I have become and how this affects my family. I have consumed myself into my own little shell and am not supporting Terra in a way that she needs.
So why am I going into my shell? Please don’t take this wrong but I am so sick and tired of talking about Kendall’s Mito issues. This is all we ever talk about. I have become bitter and hard and apathetic. This sounds strangely familiar to last my post last year but I think it has become worse. I hate that I have become these things.
I continue to be apathetic towards my faith. When I can I go to church just to sit there and wait for it to be over to pick up the kids. I saw a picture on Facebook this morning that rang true. It stated something like this “Going to Church makes you a Christian as much as standing in your garage makes you a car.” Wow, I have to think about that some more. Our church is awesome, the support that they give us in genuine and in my opinion rarely found out there in the world of churches. I say I am still angry at God but now I just don’t know if its anger at God or disappointment at myself.
My heart continues to break for the older three girls also. The “normal” childhood for them is just not a reality. They just don’t get to do normal childhood things. I think Kealey knows that Kendall may someday not come home from the hospital, she has actually probably known for some time. She is a smart one, she is. How is this a way to live, knowing this kind of reality? Well it isn’t. Terra and I have always said that we don’t want Kendall’s issue to dictate our lives. We try this but reality is Mito dictates our lives, dictates the girls lives. They get the brunt of an exhausted mother during the week and an exhausted mother and father on the weekend.
This exhaustion also has an effect on the relationship between Terra and I. I get exhausted, zone out and go to sleep. Terra gets exhausted and dives into her support system on the internet. I am so done with talking about Mito issues that I am done talking or being present when Terra needs me. I don’t know when we, or more I, started using this as an excuse to stop being there mentally. Obviously we cannot just stop talking about Mito issues. They rule our lives right now. I must get better at supporting Terra in a way that she needs it. I will never replace the support group from the internet but I need to become the husband that she can turn to for support.
So, for all of you that read through this whole thing I am sure you are done with reading my complaining. But reality is what it is. Living day-to-day with four young kids trying to raise them right, traveling for work, trying to support Terra in ways that she needs and a thousand other things is completely exhausting. Throwing Mito issues into the mix is getting to the point of being overwhelming.
Things are not all doom and gloom. We are all still here. Kendall is still here. She blows my mind almost daily with how strong she is and how she can still flash that amazing smile amongst all the pain. Keep on fighting Kendall Quinn, you are a miracle. When your Mito issues rise up keep on fighter waive your fist in the air and yell I got this daddy!!
Prayers are always welcome; Lord knows that we need them. I need them and He needs them from me.
Editors note: Signing out for Benj. I think it would go something like his old Fedex job where he had to run the radio.
This is Ben. Copy.