I need a serious flashing blinking warning of some kind on this post.
Not only will you need a kleenex or ten, but you will need some smelling salts or some other way of reviving yourself after the shock. Today I have a guest poster. He’s the strong silent type, and I can honestly say that except for our wedding vows I don’t think I have ever heard THIS MUCH out of him at once in my entire life.
This was supposed to be part of mito awareness week – but, for this much goodness, I’m willing to overlook a few days. I am going to backdate this so that it shows up in the right place in the archives – but if you want to share it (and i hope you do), you can click on any of the little social media icons on the bottom of this post, or copy and paste the address in your address bar for this specific post.
Anyways – Ben does a good job of intro’ing his own post, so I’ll stop talking now and let you hear it straight from him. But seriously on the kleenex…go get them now.
Hello all in Terra’s blog/web world.
I am Ben Atkinson and yes, I do actually exist. I am not an apparition. Occasionally Terra will mention me in her blog but rarely do you all ever see or hear from me. That is just who I am. I am a behind the scenes, hide in the corner, sit in the back row kind of person who rarely speaks but likes to think when I do, people listen. Also, I have not been blessed with the gift of grammar as Terra has. My thoughts are usually short and to the point, very efficient and conclusive. I have very strong opinions on most things but rarely voice them to others because it would not be efficient to argue and I just don’t like to talk. I will attempt to alter these aspects of my personality here today and expand on what I think.
Terra has been asking me for a couple of weeks to write a paragraph for her blog about what Mito means to me. Well I am finally getting around to doing this but am sure it will be longer than one paragraph. I can only hope that it will be in some form of coherent thought.
What does Mito mean to me? It sucks, I hate it! I would use more foul language to voice my hate but I know my in-laws would not approve and are probably reading this. How much do I hate Mito? I hate Mito with all the passion that burns inside of me.
Now I need to make this next point very clear and keep this in mind as I write the remainder of this. I do not hate Kendall, I do not blame Kendall. These issues that I talk about are not Kendall issues. These are Mito issues. I hate Mito issues. Kendall Quinn is a shining light of strength and joy that I have never witnessed in another human being. I do not have very many people in this world that I would consider to be a hero, Kendall is on the top of a very short list. I simply hate Mito and the affect that it has had on my family’s life. So my anger may be better directed to the results of Mito rather than the actual condition itself. However, I have some control over those Mito results and how it affects me and my family so maybe I will blame the disease and take no ownership of the following frustrations with Mito. But I will own up to them.
What does Mito mean to me? That question keeps running around in my mind and reality is I have been doing some soul searching when it comes to what this question means. What I say over the next few paragraphs may be a surprise to probably all of you including very close family members. But it is the reality of what I have been thinking over the past few years. It is thoughts that I have hidden away in my own inner core of my being because along with my lack of wanting to talk to people I also tend to hide away my own feelings from just about everyone who I interact with. You can image the challenge this posses for Terra who has to deal with me on a continual basis.
So the affects of Mito have caused me to question and wrestle with many differing emotions. Many of these feelings stem towards my ability to be selfish through all of this. Why has this had to affect me, why has my life needed to be flipped end-over-end? I have become bitter, some times more than others. I have been angry, again, sometimes more than others. However I am thankful that both are subsiding.
My bitterness and anger has been directed at so many different focus points. My bitterness runs deep because as I stated earlier I hide my emotions and hold on tight. I have been bitter and downright angry at God. “Why has he done this to me?” I have questioned many times. Yet at the same time I am questioning him I am not reaching out to him. I am not letting him carry me through these difficult times. I have always been the person that could keep it together. I stood under my own power and never needed anyone else. Unfortunately by doing this I have alienated many in my life. I still struggle with this anger and bitterness but it is slowly subsiding. Again because of my own self inflicted need to keep my emotions to myself I was only able to tell Terra of this about a month ago. What is funny (not in a laugh haha kind of way but more of a twisted what am I thinking kind of way) to me now is that so many times God has pointed out to me that He is there. He is taking care of our needs even down to the basic functions of life like toilet paper when we received about an 8 month supply. Terra was asked what we need on her Facebook or blog page and her response was toilet paper. So many people brought us toilet paper. It was awesome but I still refused to give Him the credit. I have made conscious decisions to not give him the credit for sustaining my family. I know in my heart that He is providing and yet I would get frustrated for all the Mito issues he abandoned us on. Twisted, I know. I struggle today to give him thanks for all he has given us but I think I am making a turn. Maybe this letter/blog post is a big step towards the right direction.
I have been bitter towards Terra. (This will not be a rip on Terra section but it is only used for me to explain my feelings through this whole Mito crap and why I hate it so much). I would ask myself “Why has she been so focused on living in the world of the internet instead of me?” I know that Terra has an absolutely amazing support group on the internet and this group is probably reading this right now. Terra has been able to get support and bounce ideas off of other individuals with kids dealing with similar Mito issues as Kendall. I can now say that I am so very grateful for all of you that support Terra. I know that she would not be sane today without you. I know that Terra has essentially received her Doctorate through this experience and internet searches if only for the sole purpose of keeping Kendall alive and wanting more for her. I am thankful that I have been able to steadily work through this and don’t feel bitterness towards Terra anymore. So, Terra I am sorry for this. I know that it is a selfish struggle that I need to continue to eliminate. Besides, how can I be upset with her for seeking the support of others when I myself am not supporting her because I keep everything held tight inside of me?
I always feel that we are separated as a family. Of course, a major part of that separation is my job and all the travel that I do for work. However, I am so thankful for a job. I am thankful that I have very understanding bosses within my department and work in a company that values the needs of my family. It sucks getting that 3:00 am phone call or text from Terra saying there is an issue but I am so grateful that I can pack my bags and hit the road for home with no fear or questions about my job. I am a very scheduled person. If my schedule is broken by some outside force (Mito) I cannot stand it. It frustrates me. However, again I am thankful that I have a position that I make my own schedule for about 45 of the 52 weeks per year. I am able to adjust as needed. Again, I am thankful for that but hate that Mito has caused the need for it.
I am angry at this situation that Mito has caused for my four beautiful amazing daughters. They don’t get to experience life as what many would consider “normal life”. We do not get to take what most would consider family fun “Clark Griswold vacations”. First of all we don’t have the financial capabilities to take said vacations due to all of the costs associated with Mito care but in reality we just have so much junk that we would have to prepare for us to take all the medical crap associated with Mito care. We have been able to take some one night get-a-ways to downtown Chicago but even with that we basically have a mini traveling hospital that we must tote around with us. I hate that most of my family’s get away mini vacations don’t always include the six of us. Too often it is me coming home from travel for the week and Terra going away for some mommy-big-sisters get away time. I am grateful that they can go away together as the big girls need that alone time with mommy. I just hate that this is how they have to get it due to all the Mito issues.
The girls also have to deal with a plethora of people coming in and out of our house. From some horror stories that I have heard we are very blessed to have the team of nurses and therapists that we do have. We get along with them, they have been in place consistently and I get the feeling that they genuinely care about Kendall and my family. In my opinion our two nurses go above and beyond almost daily when they come to our house. Not only do they take care of Kendall but have helped out in so many other ways with the older girls. Although I am grateful that we have care for Kendall it saddens me that the other girls have to deal with all these other people in the house. It saddens me because although they may not think anything of all the faces in our house this Mito crap as created a “non-normal” environment for them to live in and deal with.
I hurt for Kealey Grace and the daily struggle she has dealing with all too often being the mommy to the other girls because I am on the road for work and mommy has no choice but to address Mito issues. Kealey Grace is such a strong kid, she amazes me how well she can keep herself together. Unfortunately I am seeing more and more that she is like her father when it comes to holding in her emotions and then lashing out at her sisters in frustration.
Karissa Lynn is such a lover. She clings to any kind of love that someone shows her. I only hope that I can provide the love and support that she needs so that some day she doesn’t cling to others that are not good for her. I hate that I too often am so wiped out from travel during the week and trying to take over Mito care on the weekends that beautiful Karissa is forgotten. For this I have been making a conscious effort to make sure she is loved at home but I know she still craves it from me.
Kaylen Hope, Hurricane Kaylen as we call her. I love this little bunch of spitfire more than I think I could ever express. Her stubbornness and individualism reminds me of Kealey Grace x 10. The big girls have always had the outlet of school to get away from the constant reminder of Mito issues. However Kaylen has never had that luxury. She all too often plays second fiddle to the daily dealing with Mito issues. This is just her reality because she is home. I am so happy for her that she started preschool this year. She can make her own friends and forge her own way in this world. However, I have told her many times that she can’t grow up. She’s not allowed to get any older than 4 yrs old.
Even though I have listed out so many things that I hate from the affects of Mito there have been some very positive and downright amazing things that have come out of our situation. As a family we have seen the unbelievable outpouring from so many. So many people that I don’t think Terra and myself could even list out half of the people who have so unselfishly helped us in tangible ways. We have had so many provide us with meals, financial support, babysitting etc. We had a baseball team take us under their wings and do a fundraiser for someone who they had never met or seen. Others have helped coordinate care for our older girls. We have also had so many pray on a continual basis for Kendall, for Terra, for me individually and as a family. I cannot express my appreciation enough for all who have kept us in their prayers. You all are the reasons that my family is still together and I cannot thank you enough. Being the provider for the family I need continued prayer to realize that I need to lean on the True Provider and stop relying on myself for everything. Nothing is mine any ways, everything I have has been given to me to be looked after, if only for a short while. It is not mine to keep.
I have also been able to witness what I will call an absolute miracle. Kendall Quinn is such an amazing person. Not just an amazing kid but an amazing person. Her strength, spirit, and personality are unmatched. Her smile is contagious. She may be in tremendous pain but will still flash that smile. It absolutely melts my heart and brings me to tears at the same time.
Terra and I have learned to take the simple things in life as precious moments. Although sometimes the craziness of four daughters running around the house and all the craziness that ensues drives me to a breaking point I have to take a step back and rejoice that I still have four daughters creating the very chaos driving me into insanity. Reality is that we don’t know how long that will last.
I have learned that next to Kendall Quinn who is the toughest person I know, Terra is right behind her. Terra’s strength and Wonder Woman type qualities (minus the cool outfit) are mystifying to me. I will make this statement that I’m sure so many of you will agree with. Kendall Quinn is alive today for two reasons. First and foremost our Lord is not finished with her yet here on earth. Although I do not know, nor may I ever know what his plan is, I am immensely grateful He has given us this beautiful gift that is Kendall Quinn. Second, Kendall is still here today because of her mothers’ strength to never take no for an answer, to never let a Doctor except mediocrity for Kendall Quinn. Terra I thank you for your strength. You amaze me.
So this has been slightly longer than the paragraph that Terra had asked for but realistically how can I explain all of this in one paragraph. Actually someone please check on Terra, she may have fainted knowing I actual had this much thought going on in my head. I guess my usual self of hiding my emotions and feelings has finally been tipped of kilter, well at least for a short while. I ask for your continued prayers my Kendall, Terra, the other girls and myself. As I work through my struggles in dealings with Mito Issues your prayers may just help me make the conscious decision to accept the help that He has been so wanting for me to accept for so long.
Thank you for letting me tell you my story.
To all of my Ladies; Terra, Kealey Grace, Karissa Lynn, Kaylen Hope and Kendall Quinn… I love you all so very much. Thank you for still loving me through all of this.