Selfish love of The Magic Fish

Jason and I have this story in our vast collection of childrens books, some of you may have heard it before called the Magic Fish.  I haven't looked at our copyright but the book is illustrated in three colors, black/white/blue and the pages are worn and many are no longer held by the binding.  I swear it has to be the first copyright of this story because in all of my searching for a new copy I only find a more updated version, with fancier illustrations and colors.  I've never bought it because quite frankly I love my own worn out, run down copy. 

Charlotte turned 3 last week, 3 years old, can you believe it?  The child who at 4 months of age I wasn't sure was going to survive the night has lived to be 3.  It sounds so good everytime I say it.  I think back to that first night and I could still cry at the drop of a hat.  The doctor who did the echo and found this horrible discovery wasn't able to give too many details.  She just said it was bad, Charlotte was in heart failure and that there were options.  When I said options?  She mentioned transplant, medications etc, none of which sounded like good options to me at the time.  They still don't sound like great options now that I think about it;)  Thankfully the wonderful doctors we had taking care of her knew what the hell they were doing and although it seemed even they couldn't give any guarantees whatever they did saved her little life and brought us to the ripe old age of 3. 

Once you find out about this cardiomyopathy and delve into more details the worry instantly creates a blanket of fear that you never really get rid of afterward.  Now I don't just worry about Charlotte but I worry that we'll miss something in the older two kids and I will lose one of them.  My two healthy kids, the ones who were my rose colored glasses about life, and most importantly children's lives before this happened to our family. 

It has been one hell of a ride so far, the fear and worry never go away,, that I have come to accept.  I'm still not convinced that even though I don't focus quite as much attention on the 'what if's', or the daily 'respiratory rates', 'weight gain', 'developmental success' and all of the other junk that goes along with this that it isn't eating away at my soul a little at a time.  Eating away at my personality or my beliefs, my feeling of safety, or responsibility.  I am afraid, again, that I've just come to accept that it is what it is and if you don't want it to eat you alive you pretend to live a different life in a way, you become a very good actor. 

Over these last few years I have gone through an entire thrill park of emotions, reflections, unwaivering selflessness when I'm needed.  I have come from depression, elation, loneliness, hope, faith, lack of faith, every thought or emotion whether it be good or bad I think I've felt it.  I started school to do something for myself, a positive step in coming to grips, and at times am barely home.  I feel like Jason seven years ago, between school, friends, work etc he was gone a lot.  Now I'm the one somewhat escaping to my own life outside of this house.  I love school (well on good exam days anyway;), I love meeting new people there and I can't wait to work and be able to contribute, and help kids and their parents deal with the same things I deal with on some level.  As I started to relay last blog I feel like I have gained an enormous amount of girl power and in some ways that self confidence has taken me from my family obligations, my wife obligations.  The taste of freedom sometimes sounds better than I know it would actually be, but I look forward to the day when I could, if I had too, take care of myself, Alaina, Jake and Charlotte too.  I didn't realize before how much I have to rely on Jason until now when I rely on him SO heavily, and I look forward to taking even a part time bite off the weight on his shoulders. 

In having this overwhelming girl power as I call it, I also realized recently that maybe it's caused me to be too selfish.  I say that with a grain of salt just for the shear fact that I am still a stay at home mom.  When someone needs me, I am still the first one to stop whatever I need to do and help them instead.  Jason can still call me from work and ask me to do something, whatever it need be and have it get done.  It's only nights when my selfish needs are met which is my favorite time of day anyhow.  I look around lately especially with Christmas coming.  I have undoubtedly been playing the "I want my cake and eat it too" game.  I want this, and that, this needs to get done, we need to buy that.  ON and on the cycle of stuff goes, it's been going on in our house for quite sometime as is evident by our pool table that is surrounded by bins of clothes, toys, and stacked to the brim with boxes of books etc..  This winter and spring we are about to go through some reorganization and free ourselves of this stuff.. 

I was thinking about my own greediness, my wants, the fact that I have this girl power thing going on where I feel like I should have it all, granted I myself would make it happen, but still I think I can do just about anything right now.  And the more people tell me to slow down or I'm taking on too much it just makes me want to pile on more and trudge through to prove them wrong.  In the story the Magic Fish the fisherman catches a fish who says in our story that he is a magic prince.  So the fisherman lets him go and when he returns to his wife without a catch, he tells her the story and she demands he go back and wish for a pretty new house instead of the hut they live in.  So the fisherman goes back to the sea and calls for the fish, he asks his wife's wish and the magic fish prince grants it.  He tells the fisherman to return to his wife, he goes home his wife is happy.  She is happy for one week, then demands he go back to the fish because she wants a castle, he does and on and on the wife continues to ask for bigger and better.  She asks to be queen of the moon, the stars and the sun which is where my own life comes in;)  lol.  I feel like I have been dreaming for everything to go perfectly the way I WANT IT!!  Charlotte and the kids stay healthy, I keep chugging away at school until one day I'm a doctor instead of just going for nursing, we move to downtown Chicago, and the list goes on.

At the end of the story the fish who is quite fed up with the pain in the butt wife's wishes, sends the fisherman home only to tell his wife that she has asked for too much, and now will have to go back to living in their old, worn out hut again.   Obviously the moral being she became too greedy, too selfish, she forgot about the important parts of life and therefore lost all of the good she had gained.  I think it's easy when you go through something like what our own family has, to think you deserve everything you want, you deserve to be selfishly happy, because well "life's been rough".  Even I have to take a step back, find my patience again, and allow life to happen, instead of trying to force it because well "I want it now".  I'm tired of being sad, I'm tired of leaning on things I shouldn't, I want to go back to the time when I didn't know any better and could just let time slip by unscathed.  However as this new normal life of our's has taught me so many things.  And sayings, or stories remind, I have to just relax and stop trying to control everything.  Sometimes the journey is more important than the destination in the end, and we don't always see the purpose until we get sent back to the hut so to speak. 

November 23, 2011

Charley is 3 today!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Last night I came home late and as I made my usual rounds to the kids bedrooms before going to sleep I stood just a little longer at Charley.  I watch her breathing almost every night, I listen to her heart and count beats, listen for gallops/sounds that weren't there before.  Last night I did neither I just watched her, curled up in her little bed, blankets hugged to her face.  She looked peaceful, she's nice and sweet when she sleeps;)  lol.  She looked healthy, perfectly pink in the moonlight, I didn't see the usual casts of grey undertones, or bluish that I notice during the day at certain times.

I tried last night to look at her like a normal Mom gets to look at their child, the Mom I was before she entered my life.  No worries of them not waking up in the morning because their heart gave out.  No worries of whether another child might become affected at some point.  No worries of how long we'll get to have her (or the others for that matter).  I tried to look at her and think "what college will she choose", "what will she want to be when she grows up".  Will she love to dance, be well liked, will she get good grades and have lots of friends.  These are the things that normal Moms get to consume their thoughts with, it kind of makes me jealous.

Last night as I stood there I realized, I don't care about any of that.  Of course as she grows up there will be these worries, but I don't have the luxury of thinking that far ahead anymore.  If there is one thing I have lost, or gained depending, it is the inability to think ahead too far.  I can still make long term plans but with the knowledge that whatever it is comes with an automatic 'well maybe' claus.  It really takes the pressure off life to know that no matter how big the plan is, it's okay for it to not work out the way it was intended.  I used to spend so much time and stressful energy on things working out perfectly.  If it didn't go perfectly then it let someone down, they would be mad at me, or I was late, or the day was a failure.  Now I realize that most of the time when someone lets me down, or makes me late it's still annoying but it's not the end of the world and I never hold it against them and most likely they don't hold it against me because life just happens out of our control somedays and all we can do is try.  Just keep trying 'Pressure off':)   

I don't have the luxury of wondering the 'who' and 'what' my kids will be because quite frankly I'm just happy they're here at all.  Do I expect them to be successful and try their best, absolutely.  Will I encourage them, yes.  Will I push them to directions they don't want to go, or feel they are failures if they don't live up to my expectations 'No'.  I can just love them without putting boundaries on them, and they can know that unconditionally I will always be here for them.

I don't have the luxury of judging anyone because I don't know what they are going through in their lives, or what made them be a certain way.  I think it easy for others to judge me, my opinions have changed quite drastically, I have been called ridiculous, dramatic, The jerk at the grocery store who is taking an extra 10 minutes arguing about coupons, he's a money saver, or he lost his job and has to be that way.  I don't need to waste energy or stress about someone, even if they are inconveniencing me because I have no idea what they are struggling with that day.  So I either try to help them which might move them along quicker, or just smile at them so they feel safe (and yes occasionally I still lose my cool ;)  I'm still me

In some ways celebrating Charlotte's 3rd birthday today reminds me of how freeing having her in my life has been.  I am not afraid of too many things anymore because she has taught me to just live,

Nov. 23rd, 2010

Posted Nov 23, 2010 1:52pm

Charley's 2 today:)



Today is Charley's 2nd birthday. On November 23rd, 2008 I went into the hospital around 6 am. It was 1:49 that afternoon that she graced us with her presence, the labor and delivery were by far the easiest of the three. As it should be by the third I suppose. Jake was so nervous coming into the room, he wouldn't go near us until he knew what the IV was, and the in's and out's of the hospital room. Eventually coming over to say Hi and cuddle. Alaina was just SUPER excited, she felt like a pro at this moment, taking care of her little brother and enjoying the reality that she now had a BABY SISTER. Charley was such a calm baby, I remember my friend Stefanie being over and we'd just sit and chat. Charlotte chillin in her bouncy all the while. At two weeks she looked me straight in the eye and told me something. I don't know what it was, but it was important, my Mom saw it too and we both knew it was BIG. She could sit up by four months, and loved her books, or laying there with Jake and Alaina. She was smiley and happy as can be.I really felt complete silence, like everything was as it should be. The adjustment was easy and she just fit right into our lives.



April 24th, 2009 riding to Childrens in that ambulance I thought I was extremely calm. It may have been acting but I was sure I was pulling it off. I remember calling our mom's and using every effort to coolly say that this was just a precaution, that our local hospital couldn't do an ECHO that late at night so we needed to go to the Childrens hospital. At the time I was incredibly blind, the ER irritated me, no one knew what I had come for, the local hospital didn't tell them ahead of time, blah blah. It was annoying, and all I wanted to do was walk out of there because they were wasting my time for nothing.



For some reason I made Jason come down to meet me. I should've known then that if I call in the big guns, my most important ally, my rock for support that I was shaking in my boots and this was not good, but I continued on blindly. My Dad showed up at the hospital unannounced, maybe he had some sick inclination that he needed to come, or maybe he just knew that an ambulance ride however harmless it seems is never a good start. At 1 o'clock in the morning I knew my life was forever changed. I knew that there was a reason for that amublance ride beyond what they had cautiously told me. The minute I saw Charlotte's heart on that screen I knew it wasn't right, I knew a fight was about to ensue, I had no idea how big though. I just thought "okay that's wrong, how do we fix it". Looking back I still feel that pain of finding out it wasn't that simple, that there was no "fix". An adults heart, let alone a babies should not take up that much space on a monitor screen. It was obvious to me that this was life threatening, and within hours we had poked and prodded my precious baby girl, and she was now hooked up to machines and drips, and the nightmare became clear.



The next morning our doctor used the words "impressive", he said "it was impressive that she made it through the night". I was still in shock, looking back I still am. I began over the next few days planning out her funeral in my head, casket color, burial or cremation, what songs would we play. How I would tell Alaina and Jake, the worst thought revolving over and over, how will I tell Alaina and Jake.. I had not showered in days, the nurses gave me a toothbrush, Jason brought me a new shirt. I hadn't slept or ate, and I had to try and make sense out of this to a 7 and 4 year old? It is so easy to transport back to that time, and so easy to focus on how there is no guarantee we won't be back there again. At any minute, at any second, so I add things up as we go, and have a pretty good idea of how her funeral that I pray never comes, will go.



A week went by and they were amazed at how well she was doing, they started switching over her IV meds to oral ones. She would be on them the rest of her life, 1/3 of the kids get better, 1/3 stay the same, and a 1/3 get worse and need transplantation, another revolving thought. Everyone was asking me why don't they just list her, as if listing her was the fix. As good as tranplant medicine has gotten, a flu could kill a transplant patient. At anytime, any moment they can suffer massive rejection and die. A transplant just trades risk and complication, it is not a fix, and if it fails they can't just plop your old heart back in to stave off rejection. Two weeks were approaching and the doctors were ready to give her back to me, to send her home. For anyone who remembers the feeling of taking home your newborn for the first time, this was multiplied by a 100. The hospital is safe, there are people everywhere to help, to rely on. I have never been more terrified of taking a child home, the responsibility factor just became astronomical. This was like taking the weight of the world home on our shoulders, in a small, smiling package. She cried when we got home, she didn't recognize it, or she had felt she would never see it again. I'll never know what went on in her little head but as she cried and acted funny about being here, inside I felt the same way. I wanted to bolt back to the hospital, to safety in numbers.



It has been rough, I have spent a lot of alone time sitting on my ****, just THINKING. I try and get out, I try and LIVE, but there are a lot of days where I just sit, watching her like a hawk. My house has suffered, it has never seen as much dirt as it does now. Maybe my kids have suffered too, or my relationship with Jason. Maybe someday they will say things like I didn't pay enough attention to them, I'm trying to make sure that doesn't happen. Time has healed a lot, I don't over obsess (unless she is sick of course), I can be alone with her, I can allow her to be around other people without wanting to grab her immediately, and slap a mask on their face to protect her from their germs.



It has been a year and a half, and the child who I never thought would come home again. The child who I thought I would say goodbye too, is still here jumping in front of the TV. Singing her Barney songs, bossing us around like we're all her little minions "I want milky", "I want school", "No Jakey/Alaina". She speaks in sentences, and knows some of her colors and shapes. She loves her family, books, chasing her brother, tickling her sister, goldfish, her blankies. She loves me and Jason, she lights up when he comes home from work "HI DADDIE". She calls "MAMA" at 2in the morning, and runs to give us hugs. It's amazing to me, that someone sooo sick can run around here and act like it's no big deal. She refuses to acknowledge that her heart is barely working. We're the ones in pain, she's just living her life, so today I want to honor her life. The one she still has, and we still have with her.. It's very easy for me to get sucked into pity parties for us, to feel estranged from the real world. I hope that as time goes on, and she continues to thrive that it will get even easier to allow the LIFE to outshine the MAYBE'S. Strangers know she's special, they tell me things all the time, and we know more than anyone how precious her life is. She is a light that I can't imagine not having, just as bright as her brother and sister. So HAPPY BIRTHDAY BABY GIRL:)

Heart Cath 11-4-11

Hi everyone,

I just put a VERY OVER TIRED, OUT OF CONTROL toddler to bed. It required laying next to her in her toddler bed rubbing her ear and telling her that no one was going to hurt her when she woke up. I am really tired and might not make a ton of sense but it's been a bit since I wrote last so bear with me..

First of all the important stuff, her lung and artery pressures are all still normal and her cardiac output is "good" as Dr. Turner put it so we shall avoid the possible transplant talk once again, phew:) As usual I LOVE OUR DOCTORS AND NURSES. Dr. Turner is very laid back, easy going, never seems to be rushed or in a panic and even if he's busy he really takes his time to chat and make us feel comfortable. I never worry about Charlotte's care when he, and his cath team are with her which is a huge relief in the scheme of things..

We were second in line today so things took a little longer than usual to get going. The nurse let her pick out a toy to play with while she waited and she had a great time with the Mr. and Mrs. Potato Head. She took almost all of the initial oral sedation medications but the middle one of three is disgusting and the third med she pretty much spit entirely out. Luckily they give her the important ones first and the last is just an anti-nausea med. IV team never showed to give her an IV so we actually took her up to the cath lab to put it in. Everytime before this she has been pretty well out of it once we got up to the lab but today she was chit chatting with everyone, laid down for her IV and although she tensed up a lot didn't even cry when the nurse did it. Once they gave her the IV sedation she was out in about one minute so Jason and I kissed her and left her in their hands. We got there at 8am and they took her back about 11am. It was probably only a little over an hour when our pager went off and we arrived back to the lab to see her. She was already awake which again is a first, and was crying a bit, still pretty groggy. They apparently had to give her a half more dose of the sedation meds and even that didn't keep her down.

I brought my Biology to study because she has always slept for at least an hour after the procedure but this time she was up and somewhat alert so once in the recovery room she sat on my lap half laying down and we watched Curious George as the groggy, drunk, bossy, and moody Charlotte came down. We have to wait four hours after the procedure and she's supposed to be laying down for most of it but in true Charley fashion that NEVER happens. The hardest part about these days besides the no sleeping the night before, getting up early, not eating or drinking, pokes, etc., is keeping a roving lunatic of a sedated toddler occupied. She can't eat or drink anything from midnight on so you can imagine that on top of being cooperative all morning while being poked, prodded, and moved around in a strange and scary place is enough to send her over the edge.

After four hours it gets maddening, and she by that time is exhausted and pissed off at EVERYTHING. Jason was trying to draw a family of ducks on her magna doodle and he just couldn't get it right and she was throwing a fit, if I moved the DVD player one inch to the right she was throwing a fit and smacking it back into place. Hours of this go on and because we are evil parents we start to just purposely do stuff to tick her off because we might as well laugh at her antics while she is so over tired and out of control. In the car on the way home we kept saying you need a nap as she was slapping and complaining at her Minnie Mouse balloon and she would scream "NO I'M NOT TIRED" at us, but as soon as I started videotaping her she was all quiet and coy in her soft little voice. She's hilarious, that's all I can say for that child, cute, cunning and she sucks everyone around her in.

Dr. L'ecuyer came in to see her and she told him all about Halloween, her Jessie costume, preschool, and CANDY. He said her BUN and creatinine (kidney function) were good, and we upped the dose of one of her meds quite a bit so we'll see what happens with that. Dr. L'ecuyer is awesome, he and Dr. Turner are excellent examples of the team they have there. Again always making me feel at ease that we are at the best place for her, that they are knowledgeable with her disease, answering my unending curiousities about it and still stumped at how well she looks compared to how sick she is. I like that they don't act like they know everything perfectly but that they treat each child differently because each child handles the disease entirely different. Jason and I were driving home and we both agree sometimes they look at her, shake their heads and say "it's amazing when you look at how well she's doing". It kind of chokes me up really, we tend to think these people are God, instead of doing Gods work but it's never perfect science, things never always go according to plan and I'm okay with that. I just know that they care about her and us, are incredibly knowledgeable, and if they don't know something they'll take the time (quickly) to try and figure it out.

Charlotte should have left us a long time ago and I take pride in knowing that the people helping me keep her here work with me, not above me if that makes any sense.

She SO needed a nap and I was shocked that she didn't fall asleep on the ride home. She was over the top hyper by the time we got here. Acting rambuctious, aggressive, a drunk person really but kept jumping, dancing, and climbing as if she were sober so my Mom just tried to corral and grab her up constantly to protect her from herself all evening. At bedtime she just couldn't get settled, was fighting us, and kept asking for cake for some reason. At one point she said she didn't want to go to sleep because she didn't want to get hurt. I'm wondering if maybe she didn't wake up in the lab earlier than expected and that's why they hit her with another half dose of sedative. I hope that's not the case but she's never acted like that before. Regardless, I just laid with her, rubbed her ear, and tried to reassure her that there would be no more ouchies for awhile and definitely not when she woke up tomorrow.


All in all, she was phenomenal as always and everytime we face things like this her strength and endurance never cease to amaze me; and Alaina and Jake's belief that everything will be okay with their sister gives me hope. We laughed because Dr. Turner was saying goodbye and said "nothings going to keep Charlotte down", and while I am still scared to death of the future, and it feels more unease now than ever, I also feel capable more so than I have ever felt before. I have always been told I was a good Mom, a patient Mom, but to be told by her doctors that they aren't sure how she's doing so good is a force unlike any other. Not just for myself and Jason either, everyone of you who read our story, or send me a comment, or continue to be my friend when I'm a raving lunatic. You who ask how she is, or help out with our kids, who pray faithfully, or who give me so much without asking much in return should feel a force as well. For the first time since Charlotte's diagnosis I have gained a sense of girl power unlike anything I've ever experienced before this happened in my life. As most things seem to be, sometimes I'm not sure it's a blessing or a curse but it feels good to have confidence that I can take care of people so well, and that I can help other people see all of the good they have even amidst the bad. I'm not perfect and everyday is a struggle to stay in the here and now, but while I can't control what happens to someone, I can absolutely do my best to care for them while they are here. To encourage them to be a better person, to take better care of themselves, to nurture their spirits, to volunteer any special gift they can. I literally can NOT WAIT to work at this hospital and be part of such an awesome community.

When Jason and I were eating our usual Subway cath lab lunch, I was looking out the window of the hospital thinking of how we got here to this place. How three years ago this hospital, and the Childrens Cardiomyopathy Foundation meant little to nothing to me. Now I sit here a lot of days brainstorming ways I can help them when I get some more free time. It's not just the hospital either, we are all part of so many communities that we don't realize, all of the places where we know our way around, feel comfortable, have friends/family. It is up to us to care for those communities no matter how big or small they are.

When we are there now it's comfortable, we know the drill. We can tell other families where things are, or what elevator to use, share tips and tricks for getting a child through a test, etc. We forgot change for the vending machines and I said "we can go to the 4th floor they have the credit card vending machines", something as simple as that made me feel at home. We are forever connected to it, and the people who not only work there, or frequent it but also to the people who are just starting their journey with it. That is how we take care of each other, we nourish the communities we love, because in many different ways some good maybe some bad they nourish us too. Sometimes in ways we can't always see clearly until we take off our rose colored glasses:)

Love to all of you, thank you for always being here to support me:)