Ironman Hospitaling

If anyone is interested, this is the fourth chapter of Kylie: the half hearted hero.   With school, work and family it has been hard to keep up with it.  I hope you enjoy this.  It is a rough draft, so forgive the mistakes.

I suffer from a rare medical condition.  It is something that I have suffered with and struggled with for my whole entire life.  Unfortunately, there is no medication and no real treatment for this condition and I will probably deal with this until the day I leave this earth.  It is a disease that I know that I am not the only one who has to fight it, but it is not something we readily talk about.  There is no real medical name for it, but I like to call it diahreaus of the mouthicas.  My father-in-law describes it as the filter between my brain and mouth is broken.  Nine times out of ten, whatever my brain thinks, my mind says, and it has had some disastrous consequences.  For example, two friends of mine had started working out together and I got invited to come along.  Being the youngest one of the group and with my filter problem, my mouth started to get away from me.  In my head, I was not being terribly bad but I guess phrases like “Take out your hearing aids and hang up your walkers old men, let’s get to work” came out of my mouth.  Now, really, does that sound like something I would say?  I know what you’re thinking, I can’t believe my wife puts up with me either and, yes, she would appreciate the prayers.

               There was just one problem with the whole thing, at least only one that I am going to admit to.  They were taking it WAY too well.  Anyone ever get that feeling that there seems to be a joke that everyone else in on, except for you?   Yeah that was me.  I got the sense that everyone was laughing at me, instead of with me and that I was getting more and more rope to hang myself with.  So, finally, after about a week of this, I broke down and asked what in the world was I missing?  I was met with opened mouth stares of disbelief and the shocked explanation of “You didn’t know?”  Well, if I knew I wouldn’t have asked, now would I?

               What I did not know was that one of the guys was an Iron man competitor.  These are the type of guys who go for a run and forget to say when.  To be a called an IRONMAN, you pay someone, that’s right you give THEM money to do this, to swim two miles, bike 112 miles and, to run 26.2 miles.  These freaks, I say that with love, go all across the country to do this torture to their bodies, in the name of fun.  Do you realize that the first person who ever ran 26.2 consecutive miles died, shortly after that? Then these people thought that was not enough, let us see what else we can.  It is grueling; it is sickening, and I so want to do it!

               Thankfully, though, our Ironman runner was very gentile and worked with me, quite patiently, and I am happy to announce that I can now run a ten minute mile and can run three to four miles without needing to be put on constant oxygen.  The laughter and the joking have not stopped but it has transformed into a more of a laughing with me than laughing at me type of thing.

               My friends have taught me some valuable lessons too.  I mean other than the obvious lesson of me having a big mouth and my foot finding its way into it on a very frequent basis.  One was that I am more than just a sum of my parts and there is not anything that I cannot accomplish when you have the will to do it.  Also, he has shown me that, whether it is with races or with anything else, that your own mind can be your biggest supporter or your worst critic.  Finally, he has shown me that bettering yourself is a process and one that you move at your own pace with.  Thanks to him I am now looking forward to running my own marathon in the future.

               In a race it is important to pace yourself, to make sure that you have enough energy to finish strong.  A strong start is great but if you burn yourself at the start and do not have enough to finish with, it is useless.  It is also important to realize that your journey with your congenital heart/ special needs little one is a marathon and not a sprint.  You need to be honest with yourself about what you are capable of handling.  You need to be able to give yourself breaks and to realize that you are going to have great days, days where you feel you can conquer the world and terrible days, days where you feel like a failure and that you have no business doing this.  It is important to realize that you may experience those extremes all in the same day and that two people may handle the same situation, completely differently.

               I guess the first thing I would like to give you is that you are going to encounter so many different emotions during this journey.  You are going to have some of your highest highs and some of your lowest lows, sometimes within hours of each other.  I can’t count the number of times I had walked down the halls of the hospital and come across families in different states of emotions.  Some would be hugging each other in celebration while others were holding each other in consolation and many times they were within in a few feet of each other.  This is going to be, for a lot of you, a long time, experience.  Kylie is three and a half years old and we have had three planned surgeries, one unplanned surgery, numerous procedures and hospital stays, and more doctors and therapy appointments than I can count and we have more to come.  Now I am not saying this to scare you or discourage you, but more to prepare you for what, could be, in store.  You may have a situation where you are in and out and done or this could be something that becomes a big part of your life.

               For my next observation, I have to give a bit of  forewarning.  This may come to a shock for a lot of you, but here goes.  I have never been and am never planning on being a woman.  I know, shocking is it not?  With that being said, I will not know what it is like to be a mother so I cannot fathom what kind of emotional turmoil it must be to see this life that you have had growing inside of you for the last ten months, to feel them kick, turn around, and have the hic-ups.  To have that connection and that bond already established and then see that life fighting for the right to be, I will not pretend to understand.  I think that I can speak for a lot of fathers and I think that this might apply to everyone, though.  Fathers have this engrained desire to protect their loved ones.  They want to be the rock, the protection, the point man, the shield around their families to keep all the bad stuff away.  The rest of the family can lose it emotionally, but not us, we need to take care of everyone else.  When something is wrong, we are wired to make it right and to make it right as SOON as we possibly can.  It is who we are, for the most part.  So when one of our charges, our flesh and blood is hurting and in pain, we have this need to make it better, it is like a splinter in our minds, driving us insane, forcing us to do something, to play some part in the fixing process.

               Unfortunately, in this instance, there is really nothing we can do.  If they are in need of a hospital stay, we aren’t equipped to give our little ones what they need.  I remember, sitting in the hospital room, with Kylie laying in her bed, with all the tubes in her, completely sedated and immobile, fighting for her life and all I could do was sit, watch and pray.  While I believe in prayer, very much, I felt so impotent and powerless.  I felt like a tiger in a cage, just pacing back and forth, going crazy.  We have to rely on the doctors and the nurses to do what we feel driven to do.  I remember, mentally, just begging for a physical enemy to fight and for something that I could do.

               So this is uplifting isn’t it?  What do we do then, if we are powerless, if we are impotent?  How do we deal with the going crazy feelings?  How do we start to deal with all this?

 The first step is to be honest with what you are feeling.  Try talking it out, with someone close to you, or try writing down what you are feeling.  Don’t be surprised if you can’t find the right words at first, this will be a process.  Be patient with yourself and with others around you, especially with those who are going through this with you, they are trying to process this, just like you are.  Your emotions are going to be frayed and it is going to be easy to take out the frustrations, so be mindful of that.  This is a marathon, not a sprint.  There is something helpful, though, about taking the mess of thoughts and feelings that are inside your head and heart, and bringing them into the light.  It helps makes them more manageable and more solid.  They are going to find a way out, anyways, and it is a lot better to let them out gradually and on your terms, then by blowing up and taking them out on someone you do not mean to. 

               Writing it out is another great way to do things, for a couple of different reasons.  First, there is honesty with writing that is hard to achieve with people.  With people you, sometimes, feel the need to censor yourself and want to make sure you do not say the wrong thing.  With paper, you can say whatever you want to say and however you want to say it.  You can use whatever wordage you want, describe it however you want, and just let it all hang out. 

Along the lines of writing it out, I recommend a blog.  I have been to enough hospitals to know that cell phone reception, in a hospital, is at its best, hit and miss.  I don’t know how many times I have walked by a window in a hospital and my phone would just go crazy with letting me know that I had multiple voice mails and texts from friends and family who wanted to know how things were going and to see if we needed anything.    Also, don’t forget that in many places of the hospital, a cell phone is not even allowed.  The blog is a great idea because you can point everyone to it; you won’t have to worry about missing someone.  Quite honestly I could have spent the whole day responding to all the texts and voice mails that I had from people.  I don’t say that to complain, either.  We are blessed to have such a wonderfully supportive family, but there is so much going on that it is impossible to get everyone and let them know how the day was.  With the blog, everyone is in the loop.  You can update it as often as you want, you can put pictures and, sometimes, video.  Also, your friends can pass the blog around to their friends and families and make comments.  Aubrey and I would make a habit of reading the encouragements from all the different people who were praying for us and supporting us, some of us we had never met.  Words could not express how wonderful it was to know that we were not alone in this.  The blog was one the high points our day.

Faith was another strong stress reliever for Aubrey and I.  While I don’t want this to be a book for people of the Christian faith, I really do feel God played a vital role in my daughter’s recovery and for me to ignore that, would be like a painter ignoring the necessity of the paints while creating his masterpiece.  For us, believing that there was someone bigger than us and more powerful than our situation was a hope we could cling to.  The idea that this was part of a larger purpose was a big help.  I don’t know what you believe, spiritually, if you do have a belief in the spiritual, but I highly encourage you to.  It gives you a sense of being connected and supported, even when you feel completely alone.

While going through this you have to be careful not to compare yourself with anyone.  I think that we fall into a trap of thinking we have to experience things like everyone else.  If something affects you differently, then others, we can worry that maybe we are not as strong, as invested, or whatever as the other person.  That isn’t a healthy way to go about this.  My wife, Aubrey, was, and is, absolutely amazing.  She had this ability to just sit there and be by the bedside for hours.  Keep in mind, she had just given birth not too long before and she would sit at that bed side until 2am, making sure Kylie was comfortable, the blankets were just right, the temperature was good, and that every other little detail was considered and made right.  Then she would get a few hours’ sleep and try to be there before rounds at 7am and beat herself up if she couldn’t do it.

 Quick side note, realize your limitations and be honest with them.  Take a break when you need it.  This goes especially for the new mothers out there, if you have just given birth, take it easy.  You have already put your bodies through quite an ordeal and you need time to heal.  If your child is in the hospital use the nurses, they are some of the best and most experienced babysitters you will come across and they are more than willing to step in to give you a hand,  that is why they are there.  If you are at home, I am reminded of the phrase, “sleep when the baby sleeps,” you take those naps when you can and do not be afraid to get the help of friends and family if you need it.  Trust me, you are already superstars, you have nothing that you need to prove and if you don’t take care of yourselves, you can do more harm than good.

I, on the other hand, many days imitated a tiger in the zoo.  Some days I could sit there, but many days I was just pacing back and forth.  I had all this energy and this need to do something that I was going crazy.  There were days that I would do anything to get a break from the room.  I would go get meals; I would go do the chores at the Ronald McDonald House.  I would even volunteer to go home and get things.  It wasn’t that I loved my daughter any less than my wife did, it was just I had all this pent up energy, tension, and frustration and it had no easy way of being released.  There were days my wife and I would drive each other crazy.  She would get mad at me for not being present more and I would get frustrated with her for expecting too much out of herself and not taking better care of herself.  Does that sound like any of you?  I would not be surprised if some of you are not nodding your heads right now, maybe even chuckling a little bit.  It wasn’t that one of us loved Kylie more than the other.  It was just that we handled things differently.

Side note to those who handle things like me and need to be actively taking care of things:  We do not get free pass to just leave and not be present.  I understand that feeling of powerlessness, uselessness, and the need to do something.  For the sake of your child, your significant other and for yourself, you need to be available and open for them.  This is a time of bonding and leaning on one another.  There is plenty to do at the bedside as well.  I would read to Kylie and, when she was healthy enough, I would hold her and talk to her about things.  Things like icky boys…trust me it is never too early to start on that subject.  So, I am not saying that you can’t leave, but you have to be there too.

To you “stand-guarders”, the ones who stand by the bed side, faithfully, day in and day out.  Your place is there, we all need to be there, but allow yourself to take a break and to take care of yourself.  Make sure you get a nap, something to eat, and spend some quality time with your significant other.  Do something that relaxes you and something that energizes you.  I know it sounds next to impossible to relax at a time like this, maybe even crazy and irresponsible.  If you are like my wife, it goes against, almost, every fiber of your being.  Trust me, though, if you continue to give of yourself, without taking anything back in, after a while you are not going to have anything left to give and you won’t be able to help anyone.  Trust me on this.

Never underestimate the relaxing and distressing power of a nice long walk, either.  It can be with a friend or by yourself and it can be a voluntary choice or a loving “suggestion”.  There were a couple times where my loving and wonderful wife would tell me to take a walk and it would make all the difference in the world.  If you are slightly claustrophobic, like I am, a chance to get out that room could be just what the doctor ordered, pun intended.  If getting outside is the answer, check with the hospital chaplain or with social services, but in some cases there will be a park with some walking trails that will help you burn off some nervous energy.  Also, there may be some exercises facilities on site or the hospital might have an understanding with a gym close by, and families of patients could get in at reduced charge or, even free.  I highly recommend you check with the social services for options.  It finally got to a point where I would take my laptop, an exercise DVD, and my resistance bands with me on hospital stays, and use them at the Ronald McDonald House.  Trust me, those endorphins do help.  Find a way, though, to blow off steam before you blow your top.

One of the best stress relievers, though, has got to be plain and simple information.  For me, one of the biggest problems that I had with dealing with everything going on, the main thing that keeps me up at night is the unknown, not knowing what is coming or what to expect.  Fear of the unknown will rob you of your confidence and leave you terrified of everything that your mind will come up with.  I am reminded of walking into an elevator, my wife and I near the beginning of our first stay, and being surrounded by all sides by the white coats of a dozen doctors and medical students.  In that small room was some of the best and the brightest this hospital had to offer and then there was me.  I like to think I am a fairly intelligent individual, but sometimes, I can have some really dumb moments.  For example, for quite a while, I thought elbow grease was something that you can buy at a store.  I know, not one of my better moments.  As, we walked out the elevator, I turned to my wife, laughed and said, “Wow, I feel dumb”.  It was meant to be a joke but it was semi-appropriate, I had no idea what was in store, and that terrified me.

Knowledge is king and ignorance is never ever bliss.  You need to be involved and be teachable.  When you get that diagnosis of what is wrong, learn all that you can about it.  Ask your doctors for information and RELIABLE places to get it.  I stress reliable because, in this age of the internet, anyone can make an official- looking site and put anything they want into it, be it outdated or down right false.  Be on guard, because the wrong info can be even more destructive than no info at all.  Trust the doctors and the nurses; they will point you in the right direction.

I highly, recommend writing things down, be it questions or answers.  It is so easy, in the heat of the moment to forget what you wanted to ask.  Also, don’t be afraid to ask any and all questions.  There really is no such thing as a stupid question when it comes to this.  The doctors and the nurses are there for you, do not be afraid to use them, they are a wonderful resource.  Remember, that when it comes down to it, the doctors and the nurses are really only there for support.  They are a big support, do not get me wrong, but, at the end of the day, YOU, the parent, are the head of this.  You are the one that is ultimately the decision maker and you are the one that is the one that is going to be responsible for your little one.  Don’t panic, I have faith in you!  Trust me, if I can do this, Mr. Elbow Grease Guy, you can do this and, like I said, before, if you couldn’t do it, I believe that you wouldn’t have been handed this situation in the first place.

As, I bring this to a close, I want to leave you with some words of warning, just a few things to keep in the back of your mind as you are walking down this journey.  First, off allow yourself to feel the emotions, give them validation, but try not to be ruled by them.  You have got to find a balance and not shut down from them.  Some of my highest highs and my lowest lows happened within a few hours of each other.  Going from extreme to another and back again can really take a toll on your body and spirit, there are days it can be pure torture.  It is easy to build a shield around your heart and I think that it is necessary, up to a point.  The thought of “if I don’t rise too high, I will not have as far to fall from.  Aubrey and I would call it “cautiously optimistic” when things were looking good, but we would not allow ourselves to get our hopes up too high.  We would be in this perpetual state of “waiting for the other shoe to drop”.  You live with this constant sense of something bad is going to happen and you need to be prepared for it.  You can actually get to a point where you don’t feel safe until the bad thing has happened.  There is a protective quality to this, but some days you are going to have a great day with no strings attached and you need to allow yourself to enjoy it.

               Transversally, you can’t be ruled by your emotions.  There are going to be days where you have to think and act through your emotions.  You are going to have some terrifying times and you are going to have to be able to push through and work.  I remember a time watching my daughter having seizures and having to act and get her to help, while knowing something was wrong and knowing that time was of the essence.  If I had allow my emotional side to take over I would have been useless  There is a time and place for all things and sometimes you do have to bury them so you can function.  Give it time you will learn the balance.

Secondly, do not do think that you can do this on your own.  I am not big on confrontation and I, usually, don’t feel right in telling someone that they are wrong.  That being said, if you feel like you can handle this on your own and do not need anyone else, you are wrong.  Whether, you are not getting with your significant other, it is your personality, or what may have you, but you cannot do this by yourself.  That whole idea of “if you want something done right, you have to do it yourself,” is WRONG, when it comes to this, do not do this by yourself.  This is going to be one of the biggest, most stressful, most emotional, and even most physical things roller coasters you will ever be on.  If you try to do this on your own you will burn out faster than a string of cheap Christmas lights.  Learn to take the help.  If someone wants to bring you a meal, let them (trust me hospital food gets old quick), if someone can do your laundry, pick up prescriptions, clean your house, run errands, or even walk your dog, say THANK YOU very  much and let them bless you in that way.  Trust me; you have enough to do and to worry about.  You don’t need to entertain; you don’t need to be a hostess.  Whether you are in the hospital or at home, let them cater to you and not the other way around.  You have a free pass to be a little selfish right now.  Put them to work.

Running this hospital Ironman is going to be one of the hardest things you will ever do.  On some days you will feel on top of the world and be able to conquer anything that comes your way.  On other days you will feel that you have no idea what you are doing and you will be certain that there has been some great cosmic mistake and this child was never meant to be given to you.  Be patient with yourself, give yourself the benefit of the doubt, and cut yourself some slack.  Do not be afraid to take help that is offered to you and be willing to learn.  I have faith in you, you can do this, and you will do this.