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:)

Clinic Visit

Well,, well,, we are one tired bunch of Smith's:) I suppose it was good practice for school starting tomorrow but going to bed at 1am and getting up at 6:30am kicked my butt today. The kids don't seem to chipper either and we've been laying around ever since we got home.

Thankfully Childrens was not a mad house this morning and we were only 10 minutes late this time. Charlotte was a little upset when we went into the EKG room but calmed down with distraction and counting the seconds the test takes. It is the easiest one but she still gets nervous about it, I suppose in her mind any of them could be an echocardiogram and she HATES that ultrasound machine more than anything. Dr. L'ecuyer did his usual exam of listening and feeling her liver to make sure it's not enlarged. Without the echo there isn't anything outright to show what condition Charley is really in but we all agree by her energy level and growth she looks pretty damn good right now:)

Alaina had her echo and was cooperative as always. I brought Charley in with us to show her how well Alaina did and that it doesn't hurt, blah blah;) lol. Charley could care less how "fine" Alaina did, and when I told her she'd have to have her's next time she said "NO I NOT", hahaha.. She was very proud of her sister and gave Alaina praises and high fives on what a "good girl" she was. The doctors looked over Alaina's results and said that her heart is now normal size. So she got the all clear which is always a HUGE RELIEF. Dr. L'ecuyer said she may have been anemic at some point which I guess can cause some dilation. I of course will still worry, and have my non-medical theories about how the year before we had Charlotte Alaina played soccer, danced and was very active and ironically after Charlotte was diagnosed we had the echo's which showed Alaina's dilation. Since then the kids have not done nearly as many extracurricular activities besides running amuck in our yards and now Alaina's growth has caught up to her heart size. Coincidence? I'm not so sure? However I am also very aware of my psychotic ability to worry whether founded on fact or not, but welcome to motherhood people;) It's like trying to maintain sanity at all times and let's face it add in a child with a disease that has a horrible survival rate and well, you might as well book our rooms at mental institutions now.

All in all I will re-register Alaina for dance and I will while gritting my teeth sign her up for soccer if she wishes. And then I will sell whatever I can to buy an at home defibrillator and secretly carry it to games like another CCF mom I know does.

Charlotte was fitted with a 24 hour holter, although this was not the standard before I guess now they will do them every six months to make sure she is not having any pacing or electrical issues that don't show up in the office. She is doing okay but a little more perturbed about the wires and leads than she was last time. Granted I woke her up out of a deep sleep this morning so she's kind of perturbed in general today, a nap would be great for all of us today I think:)

As usual at her last echo they were unable to estimate her heart and lung pressures therefore we will be scheduling her heart catheterization procedure for November. I as usual, am not looking foward to that. I know they are generally safe and there is little risk but obviously the more you have them, it seems your odds would increase of the risk factors. I know it will be fine but my stomach always feels otherwise regardless of what my head says..

So that's all I have for today. Tomorrow we'll mail the holter monitor back and I'm sure Dr. L'cuyer will email me when the results are back so I'll quickly update when I hear something.

The kids start school tomorrow, as do I. I have one biology course this semester but I'm looking forward to having a purpose again and being busy. I hope all of you have had a great summer, and enjoy the onset of fall weather:) I can't wait to start our cider mill tours and jumping in piles of leaves. Pumpkins, Halloween costumes (Charley is going to be Jessie the Cowgirl from Toy Story), and scary ghosts. Ahh, I can't wait:) Love to all of you!

Summer's Over

It's official, starting Wednesday our summer is over. School starts for Alaina and Jake Wednesday and Charley's Meet n Greet for preschool is Thursday. We had an awesome summer, thinking back on it all of the things that I wrote in my last blog about longing to feel safe again are closer than they've seemed in a very long time, or maybe I'm just dealing with things better.

Every night as I dose out Charley's meds I think of how this new set of rules, and adaptations can never be forgotten. Life won't ever truly be 'safe' again, I won't ever be able to completely return to my rose colored glasses but honestly I wouldn't want too either. It's not that I feel 'better' than anyone else but I look around with a much clearer vision about the things in life that are important, and although I still 'want', I am much more apt to take a breath of fresh air and 'wait'. I consistently am watchful of those around me who are impatient, unkind, selfish, judgemental, whiny, or acting out of hatefulness rather than loving acceptance. It kind of pisses me off, ten times a day I want to tell someone our story, or the story of the kids we've lost recently, or the one's who've been saved by the most selfless act on earth 'organ donation'. I want to shake them into just calming the hell down, taking a breath, and listening to what someone else is 'REALLY' trying to say instead of what they 'THINK' the person is saying. It's because of this I realized why it is that I can't shut up about Charlotte. I can't stop myself from being annoying because the message is so substantial, it almost feels like if we don't keep spreading it the world will eat itself alive. The problem is that most definitely, like my own personality, most people do not like being told what to do, and I suppose in my own way these feelings are my own form of being judgemental toward others. I will never give up being judgemental entirely because my evil side has too much fun with it, and of course I still have lots of work to do in my own regard but if we could all just get over ourselves I think we'd see things clearer than ever before;)

I started walking, and doing Zumba over the last few weeks, and I have to admit I think it has helped with my moodiness and overwhelming sense of pressure immensely. More than I ever believed exercising could. On days I don't at least go for a walk I can feel the tension returning and my mind going to the darker places it's remained at for far too long. The other day I took Charley out and went for a walk, Jacob wanted to join so I let him ride his bike. It was really nice watching how he's grown, he doesn't need resting breaks, he can cross the streets a little more safely. And up until he disappeared from my sight scaring the hell out of me for fifteen minutes I felt nostalgic thinking of how big the kids are getting, how easier they are in some ways to take care of. They are changing in big ways especially Alaina. She's turning into a pre-teen right before our eyes, beautiful inside and out but with a little more sass. She's more intrigued than ever in our adult conversations, more opinionated. Two years ago I felt like life for us was over, there was no enjoying every minute, no taking a deep breath and soaking it all in. That is definitely the sense I have gained the most throughout this experience. I can be teasing the kids, watching Jason outside making our world more beautiful like he always does, with mine/Jason families laughing, or whooping it up with our friends and just feel like heaven surrounds us. That feeling has been so randomn these last few years, reserved for the really reflective days. Maybe it's that fall is coming, my favorite season by far. Maybe it's the endorphins from my new health kick, maybe it's letting go of things that were hurting me more than helping. I don't know if it was my keeping it out, or if God just let me be for awhile, I never felt without heaven's presence, but we are truly blessed with so many special and unique people in our lives.

We had a great time this summer going to Traverse City with my parents and brother for a week. The kids just played on the beach and swam all day, we visited with some relatives which is always nice. Jason and I were able to indulge in our favorite annual traditions of girls and guys weekends at our friend Lauri's cottage. We camped at Jellystone in Silver Lake with my whole family and drove our truck out on the dunes to Lake Michigan. My cousins Heather and Dave with their girls were with us and the kids had a great time. We had some major torrential downpours and thunderstorms one night which wasn't great but while Jason fell asleep with the kids my cousins, brother and I had a great time partying to the storm;)

My friends from California the other 'Smith family' were home and their girls and my kids have no recollection that it has been years since they saw each other. They instantly took up where they left off and we had lots of fun on the beach back home and going to Chuckie Cheese. Charley is still talking about it months later.

We attended an event I have been wanting to do for two years now, the Children's Health Night benefitting the Childrens Health Fund for the hospital. The Tigers won and we got to see Papa Grande pitch whom I love!! It was a double bonus night out enjoying the Tigs, and helping a great cause. Doesn't get much better than that.

So while I have continued to battle feelings of the unknown, fear and sadness for what my fellow heart families are going through we definitely made the best of this summer. We stayed busy, we spent lots of time with friends and family, and all of the kids remained healthy and happy. Despite the normal yelling, fighting, tattling, and teaching their baby sister all things inappropriate for a two year old to say and do;) lol. Charley is a constant comedian. She loves everything and everyone as long as it all goes down her way. She is bossy as can be, and makes her opinion decidely known in every situation. She absorbs the fun and vibrance of every situation, and even when she is 'yelling' at us, or 'telling' us what to do it is extremely hard not to crack up at everything she says and does. I am so excited for her to start school, so sad at the same time that I can't control every move she makes for those few hours. I worry that she will push herself too hard to keep up with the other kids, or that there will be an emergency and they won't handle it correctly. I will probably walk out and ball in my car with nerves, and I worry that she will get kicked out for her sassy attitude. I do know however that I adore her teacher, she has had all of the kids at some point and follows Charley's health story. That brings a small comfort in knowing her and I can work together:)

Tomorrow we have a clinic appointment and probably the minute I hit 'post' on this blog I will be worrying about what tomorrow will or won't bring. Alaina is scheduled for an echo and Charley a regular clinic visit with Dr. L'ecuyer but I don't see any signs or have any concerns that she isn't doing well right now. I suspect Dr. L'ecuyer will agree paring any unforseen things like a weight loss which would be hard to fathom as she seems to have grown like a weed this summer. So I will update again tomorrow but for now goodnight:)

Letting go is the hardest part

With the summer sun, hot temperatures and the release of pressure with school being over (for now anyway;), I've been able to focus on life again lately. I keep having this overwhelming sense of panic that I should be doing homework or studying and then it dawns on me that "no wait, I can do whatever I want again, I can relax". This past week helped break the idea in with a nice night out to Greenfield Village where the kids just ran around and played on the hill overlooking the Detroit Symphony Orchestra and waited patiently with bubbles, rolling races, and lemonade for the fireworks to start. We went for pizza beforehand and honestly we don't do much as an entire family anymore so it was refreshing to enjoy the kids and just soak in the sun and atmosphere with them, and then snuggling on the hillside as a family in the dark. We also had a great time at our friends housewarming party, and I was elated to see so many faces that we just don't get to see often anymore. Life is passing us by and it's passing quickly. People that I once saw several times a week, or at least every few weeks I now only see once/twice a year if I'm lucky. I miss so much about their lives, which is why I LOVE facebook because although Jason differs in his philosophies about friendship, once you are a friend to me, or I care about you in anyway I have a tough time letting you go, even if I should.

It seems since Charlotte was born, or Charlotte's been sick her illness has CONSUMED every ounce of my being to the point that lately I'm just sick of myself. It's all I think about, it's all I talk about. I tell strangers in the grocery store, yesterday a guy I was talking to while we pushed our girls on the swings at the park. Anyone who will listen I hear myself telling them and everytime I think "what in the hell am I doing, they don't care". The whole world doesn't need to know that my baby girl is sick, that she might need a heart transplant, that it's changed me along with it. I have allowed it to make me into a better person but also used it as a means to self destruct in some ways. It rules almost every decision I make, go to the park "only if it's a short trip because Charlotte might get overheated", go on vacation "only if Charlotte seems perfect and I know where a hospital is at all times", sign her (or the others kids for that matter) up for extracurricular activities "well what if she gets exposed to germs and ends up not being able to fight some infection", "or something happens and I'm not there". It's overwhelming, it's frustrating, and the worst part is these thoughts, this sick of myselfness will never go away. Life can never rewind to the time when everything felt safe, when we had no real worries, when everything seemed so promising.

I remember in my mid-20's I went through a phase where I felt like I just had too many people in my life and I needed to let some of them go. Whether they were too negative, didn't learn their lessons, we just grew apart, whatever it may be I was becoming overwhelmed with everyone else's problems because as Jason would say I have a bad habit of taking their worries, and cares onto myself. Now here I am in my
30's and I feel like I've become that very person to a lot of people. The one whose always down, or negative, the one who can't pull herself away from what surrounds her. Charlotte getting sick has changed SO much of my thought process, granted I am still very much "ME" the way I think about almost all aspects of life has changed. The way I raise my kids has changed, and I can't guarantee that they are the better for it. The way I approach Jason and I's life is somewhat different, and again better or worse only time will decide.

Her getting sick has also forced me to grasp on to life lines that I shouldn't have. What I wrote over the winter was so true to my heart, I have been grabbing for branches, whether it be food, school, wine, money, writing, or people who have no idea that I am using them as branches (and quite possibly didn't intend on being them for me), it doesn't matter one by one I've been holding on for dear life unable to let them go. As I do, slowly try and regain control over things, or let people go I feel the same hurt that I had these first years flooding back over me and I'm not sure what to replace it with. I'm not sure how to survive all of this without them, these things saved me from myself, they became my friends. Its like replacing a pack of cigarettes that I used to love with something else to try and continue that feeling of having a best friend. I know that sounds ridiculous but to anyone whose been an addict to nicotine they'll understand what I mean. You need a new fix when things get tough, when you're feeling sad, in danger or disappointed.

I'm not sure where I'll go from here, I know I won't give up school, or wine, or writing, and knowing me I'll pick up some more people along the way some to keep and treasure and some to let go of. I just hope I'll also along the way find safety again, time to worry about the stupid stuff:) I know I'll continue using my sick of myselfness to spread the word of the #1 killer of children, and the massive need for organ donors. I know I will focus on becoming a great nurse to other kids like Charley. The light is definitely shining more brightly on the future, but for tonight I have some tears to shed for the things I'm going to try and let go of.

Carepages

Just want to let anyone new to Charlotte's page know that you can read our entire story from the beginning at http://www.carepages.com/carepages/CharlotteSmith. Someday I intend on transferring all of my early updates on her care, and my dealing with all of this over to this blog but who knows when I'll have time for that;)

June 7th, 2011

I am still not sure what to write today, or how to feel, or what to think and it's been two weeks since Charlotte's clinic visit with Dr. L'ecuyer. I'm sorry I haven't written to update all of you but I have been crazy busy. I only have one class this semester but it is a condensed chemistry class and between two days of labs (and lab homework), three days of lectures, quizzes, exams, and homework on top of the kids end of the school year festivities I have been non-stop playing catch up.

I have been trying to figure out how many appointments we've had for Charlotte but can't come up with an exact number. It definitely is around the ballpark of 25-30 appts in the two years since her diagnosis, not a lot compared to many of her heart friends but still enough that continuously hoping for improvement and getting none, starts to weigh on a parent. After 6 months to a year of no improvement we were told not to hope for any, so we prepared our minds to hear the words "no change" at each appointment and tried to force our hearts to feel good about it, because we know the words "she's declined" can come just as easily so we take "no change" and run with it. In truth no matter how prepared we are to hear that Charlotte has had "no change" in her heart function, it is relatively impossible to actually "not hope":)

I am getting better and better at holding off my nerves before appointments. The first year and a half I started obsessing and getting my nerves on edge about a month beforehand. Two Mondays ago, whether it is just experience, or the fact that I'm tearing my hair out busy and don't have time to think, I never really felt nervous. For some reason my stomach always knows what I may not be thinking and I get sick feeling about half way through my drive to the hospital. This time, I was more concerned with how she'd act than what they would find as getting tests done on a particularly feisty toddler is becoming more challenging. She was a nightmare during her previous echo, and then with the hospital stay in March I was on the prowl for new strategies to calm her down, or explain the procedure better. Our child life specialist has had ZERO success in making friends with Charlotte, when she came into the room with a doll during the March hospital stay Charlotte would just tell her to "go home", lol, and not in a nice tone of voice.

My new strategy was turning some of the experience over to her so I didn't carry into the office like I normally do but instead let her walk in by herself with my following behind. Without my "making her do it" I thought it might help to ease her into it herself, and she was fabulous when the nurse instructed her for her height, weight and even her blood pressure which she normally cries through. When we went into the EKG room she got a worried look, started to back out and said "go home now Momma?" I just said we couldn't go home but that I could hold her, I explained it was the sticker test, the tech gave her a toy and boom, she sat down on the table and was a champ. Thankfully, putting the stickers(leads) and wires on and off is the longest part of the test.

Next was the exam room, the NP and a new cardiology fellow came in and did their examinations, she was very talkative and friendly to them. When they told me it was time for her echo my stomach dropped because I was DREADING this. Jason wasn't with me to help occupy her, so I was going this one alone:( However she sat on the bed herself without my holding her on my chest, and besides freaking out a few brief times she allowed the tech to get all of her pictures (up until the arch anyway, then she lost it). Dr. L'ecuyer came in and told the tech he had been watching and thought she was good on the pictures so Charlotte was relieved to be done:) I am so proud of her, I know echo days will continue to be sketchy and I'm sure her moods will vary from appointment to appointment but "yeah for Charley" on this one.


So then came our chat with Dr. L'ecuyer, I was eager to hear what he had to say because the way he sounded when he told the tech that she could finish up and he'd seen enough had a different tone than usual. So we sat down and he said that he was confident in reporting that it seemed her shortening fraction had improved a little. It had been roughly 8-9% over the last two years and today seemed better. Then he waited and took a few seconds pause as I said dumbfounded "wait so you're saying her shortening fraction improved slightly?" "What is it now?" And he said that it was around 15% which brought her from the severe category to moderate. I then said "wait?? Her shortening fraction right?" And he continued to answer the same question at least three more times as I was in shock.

I think I kept waiting for him to say this was a joke, he didn't seem nearly as excited as my heart felt. He finally cracked a smile after my fifth time asking "her shortening fraction right?" and he said "yes, today it's good news". It must be incredibly hard to be a physician that deals with such tragic and heart breaking news so often.

I see it in Dr. Mastropietro too, when they have good news you can see inside they are as excited as you are, but they can't ever let it out because they have to be the realists, or the conservative ones so they can't get too emotional with patients as they know things can always reverse. Not to mention and it really is a shame that I swear they are all terrified of being sued and allowing patients into their emotions might make them vulnerable to saying something that if unfounded or that backfires, could get them in trouble.

If you had seen my face, and him sitting in the room with my calm excitement you'd understand what I mean. I think if I had grabbed his hands and made him dance a jig with me he would've;) It seems their "god complexes" have caught on and now WE EXPECT them to be "god" which is highly irrational and sad. I wish they could rejoice in every triumph just as we, the parents do, but at least they aren't fooling me, I know when they are relieved or happy about something and Dr. L'ecuyer was happy, even if he couldn't dance a jig:)

He also (as do I) knows that in the scheme of things it doesn't mean a whole lot. He knows that things can go up or down at anytime, and he knows that while you might get better, you also might get worse. There are no guarantees in cardiomyopathy, no set paths to tread. I don't care though, for right now I am just going to revel in a small triumph. The point to me is that the medication helped, and the heart can heal if given the right tools even if that's all we ever get. Dr. L'ecuyer said we'll never know if it's the meds or if she would've just improved over time, but I think he and I both know it's the meds. I just don't feel this was caused by a virus in a child that had never been sick. The fact that it took TWO YEARS to see any glimpse of improvement of her heart function also tells me this.

I practically ran to my car, I needed to get to it's solace because I knew tears were coming. There have been countless moments throughout these last two years when although I don't think God in particular healed Charlotte, or can change her course I know that he is near. Or my angels are near, or Charlotte's angels are near. I sat in the parking garage on the 11th floor overlooking Tiger Stadium, Ford Field and the sunlight glittering off a city that everyone says is dead, and I cried the happiest tears I think I've ever had. My eyes were sore and burning for two days because I just couldn't stop crying. She's not healed, she might still require a transplant at some point in her future but she improved. Even today she's not far away from the decision to be listed, I suppose she never will be but with even the tiniest improvement, it means catching a decrease and having that much more time to be well while waiting for a transplant. The last two years have felt like the grim reaper is standing at the end of my driveway just waiting to take her, and my tears are washing him away down the street just a little further.

We are fighting the fight and although I knew not to hope, for some reason lately I have looked at Charlotte and felt her hugs and wondered if she might improve. Her spirit is a strong one (lol, literally) and although I know this fight will be our life I don't feel like the other shoe is going to drop at any moment anymore. I have hope, and I have faith that she can have a long and wonderful life. By far this has been the toughest time of my life, of my marriage, of my motherhood but I think I might survive it now, just a little hope goes a long way:)

Goodnight everyone, I hope this all makes sense as I haven't slept much lately. Thank you for continuing to pray for us, and keep us in your thoughts. Thank you for passing on the word that organ donation is worth it.
XOXOXO.

April 24, 2011

Happy Easter everyone,

I hope all of you celebrated with family or friends and for those of you in Michigan that you were able to get out and enjoy the warmer temps and sunshine this weekend. This date is significant in my mind, strange how some dates you will always remember no matter how much time passes. The ones that aren't significant with your graduation, or wedding, or a birthdate but a date where something so profound happened to you that it is forever etched in your memory. This is one of those for me because today marks the two year anniversary of Charlotte surviving dilated cardiomyopathy and her heart failure. The time moved so incredibly slow that first night two years ago and at this point I'm not even sure we were up in the ICU yet, but I think we had just arrived and were finding out the nightmarish news and prognosis of our beautiful, smiley baby girl who had no idea how sick she ACTUALLY was.

This weekend we were lucky enough to have my brothers home from Chicago and celebrated Saturday with my in laws. It was a gorgeous day, the kids got kites from grandma and grandpa Walsh and it was so nice to walk to the park and watch them fly. As in most days and throughout their passing I notice things related to Charlotte's illness, and sometimes can't brush them off immediately. I pushed her in the stroller to the park, and while my niece Genna (also 2) was hightailing it football field lengths on foot without stopping Charlotte barely walked around for ten minutes before proclaiming that "I tired", "I cold Momma". The call signs that it's time for a break, that she can't keep up. Along with "I watch TV", or "I lay down".

While Alaina, Jake, Alexis flew their kites and Genna walked a mile, Charlotte sat in her stroller bundled in her blanket and although no one else would've known the wiser "I know" she just told me "hey Mom, I'm tired out". These are the daily reminders that your child is sick, the reasons that you can not forget and go on about your life as if all is okay and well. I constantly worry about overdoing it, about pushing her too far, and yet she continues to ask for what she needs, and do with what she can, and NEVER COMPLAINS about it (yet;). She sat there cheering the kids on from her throne, smiling and as excited as if she herself were flying them, controlling their dips and waves, and steady glides.

And I sat there taking pictures of my nieces and children, brothers, sister, and father in law thinking how lucky we are to have each other. To have a day where the weather was beautiful, the wind was perfect and we were there to enjoy each others company even if we didn't say a lot. I haven't felt that at peace in awhile, it's been a long while. My life feels like that kite with dips so low that it feels it might hit the ground, and other times soaring so high that it might touch heaven for a moment. It's hard to live life on these winds of shown uncertainty.

Today we celebrated with my family, my aunts and uncles, cousins and my grandparents in their 80's. Again just standing still for a moment in my own silence listening to the sounds of the house, to the kids going crazy outside. My aunts and uncles talking about their lives, what the kids are up to. Meet the Robinsons in the family room (one of my all time favorite movies). I so often find myself just standing in a place where everyone else is moving and all I can concentrate on is the noise, the joyful, loving noise that we all put forth. The noise that people just don't stop and listen to anymore. I know I noticed it all before this happened to Charlotte, and therefore to us but now it is so prevalent in my life. I'm struggling with all of the wind gusts, rocking us around and sometimes it is so overwhelming I just want to smash on the pavement in a pile of tattered brightly colored fabric. Then at other times it's like perfect silence, I'm just gliding along in beautiful calm where I feel like heaven is watching me whispering that it's all going to be all right.

I am so proud of Charlotte, and Alaina and Jake for who they are. That Charlotte can just sit there watching all of her fellow little people running amuck and not be able to keep up with them but still cheers them on with a smile on her face and joy in her voice as she yells with them. She inspires me. I am so proud that I have family who never concentrates on how sick she is but can take her for a walk to the swings and push her for an hour without even thinking how strange it is that she doesn't request getting off to run around. Or who will go retrieve a ball for her a hundred times not realizing that she can't continuously do it herself all afternoon.

I am so proud of my husband for CONSTANTLY handling all of this life with its incessant wind. For always fighting right along with me to hold this weaved fabric of our lives steady when the gusts pick up. I know it is not easy for him, just as it is not easy for me. I never expected to be challenged in this way, to question every aspect of my being. I know that I am proud to have all of our loved ones and friends who put up with it, who stay even though it's not always a picnic to know us. Seeing those brightly colored kites flying high reminded me so much of how our lives are entwined within each others. How each person or tiny action reflects a strand of thread and as a whole we help keep each other soaring.

I love all of you and will forever be grateful for all that you give me:)

XOXO
Courtney

April 13, 2011 #1

Hello again,

My mom came up last night and I was able to go to the Ronald McDonald house after a Bigby run for tea around midnight, and slept until 9:30 before waking up in a panic when I saw the time thinking I had missed a zillion phone calls from Mom, or the nurse. I was in shock when my phone was empty of call notifications and got up and out of there immediately because I didn't want to miss morning rounds. Mom said Charlotte slept all night too and was in WAY better spirits when I came in this morning. She is still not 100% and I'm still concerned by her lack of eating and small amount of drinking. I can't help but go over and over the things that maybe we missed just in case. It's a curse I tell you, however, it seems the kids never eat or drink good when hospitalized so I'll keep an eye on her over the next day or so and see how she does. Since getting home she's drank some milk and ate a tiny bit of Mrs. Grass soup. I hope her appetite gets better tomorrow.

She slept on the way home from the hospital and as I was talking to my mother in law I kept watching her in the rearview concerned about her color, and touching her hands to make sure they were warm. It is that same feeling I get everytime when in truth, I just want to get the hell out of there after the first night but when they finally do give us the "all clear" I am terrified of not having them to help me. When she woke up in the driveway she cheered "WE'RE HOME" so I know she is happy to be back.

I vacumned the house, cleaned the counters, folded blankets, gave her a bath and started the laundry within the first hour and a half since we were home so I know I am happy to be home too. Its weird the rituals we go through after being away only a short time, the first thing Charlotte wanted was Just Dance 2 on the Wii:) She of course was too exhausted to dance but she sat on the couch and watched the dancer and listened to the music. The next biggest excitement was her bath which she was really excited for but again was so exhausted she just whined and complained through most of it. She finally laid on the little couch with her blankies and watched Kipper until she fell asleep.

Jake came home and seemed happy to see us, he and I chatted about how things were and I begged for a hundred hugs from my guy. He is always the same each time we go through something with Charlotte, he acts totally unaffected and yet his behavior tells a completely different story. He gets more aggresive than usual, some good bear hugs reassured him I think and he seemed better after. Alaina is never very open with how she's feeling either and I know they had to be scared to death in the ED with me all day Sunday. I watched Alaina checking Charlotte's fingers and toes in the car on the way down and yet when we talked about it before they left she said she was fine. I went to pick her up from her drama club this evening thinking she'd be sooo excited to see me but she was just like "what's up mom" like it was any other day. Once I pulled in the driveway I think it hit her because she stopped, looked at me and said "is Charley home?" and when I said yes went running into the house. The only time I heard Charlotte laugh in three days was at her big sister/brother tonight.

The similarities during this stay compared to our first stay almost exactly two years ago are strange. As then Jason had just started his new job literally weeks before our two week stint in the ICU, and this time he started a new job on Monday. Along with that I noticed today that Spring happened while we were away. It was eerie feeling the Spring air today and coming home to buds on my trees and my flowers blooming outside. It felt EXACTLY the same as it did then. Regardless she is home now, safe in her own bed, with Mr. Turtle shining his bright stars on her ceiling (great gift Aunt Nancy:) and Violet the dog sang her to sleep. I really do appreciate all of your emails, texts, facebook comments, phone calls, and comments on these blogs. It may seem ridiculous but just knowing people are there listening (well reading) and caring really lifts my spirits everyday.

I had this wonderful conversation with the chaplain at the hospital I want to write about but it is one of my emotional rants so I will post it seperately for those interested in my rants. That way those of you who just want to know how Charlotte is can skip the second one:)

Goodnight everyone
-C-

April 11, 2011

Hello there,

Writing from another GREAT day in the ICU and Cardiac unit at Childrens Hospital of Michigan my favorite place;) As a precursor I must warn you I am literally going on maybe three hours of sleep in an upright chair where I laid my head on the bedside table to sleep in between bouts of Charlotte screaming, kicking and freaking out so what I write may not make any sense. Jason said as much as he was talking to me this evening while we ate.

Charlotte seems to be on the mend, the doctors are confident that this was not a heart failure incident, but most likely brought on by a stomach virus. She was very cranky today, had full strength during her tantrums and seems just plain done with all of this. No one could touch her, or talk to her until later this evening after her popsicle. She ate a little bit, but I think because they were giving her fluids was not very thirsty.

We were moved from the ICU to the cardiac unit about two hours ago and holy moly I was ready to hand her to the nurses and say "good luck", "call me when she calms down". She woke up everyone on the 4th floor and of course her roommate is this sweet baby girl who was sleeping calmly and peacefully as Charlotte threw an ultra temper tantrum. Mom and I were trying to reason with her and figure out what to do to make her better but it was pure hell for a half hour, maybe hour.

I am so glad my mom is here with me because it was rough going it alone last night and most of today. Sorry Mom for being snappy when you were just trying to help, I REALLY do appreciate you and Dad very much.

I finally got Charley's Yo Gabba Gabba game up on Nickjr and she passed out a bit ago with none of her leads on, they salined her IV for later, and they took no vitals. Thankfully the nurse waited until she was completely out and they took her off the fluids. We breathed a sigh of relief that the little monster did not stir.

This has been a horrible day, with very few calm happy go lucky Charley moments and running on no sleep is not helping. So I plan on heading to the Ronald McDonald house where my lovely brother in laws Mom is thankfully working this weekend and passing out.

I am REALLY hoping tomorrow is a better day and we get out of here because I think Charlotte can't handle much more. Pray she drinks, pees, has a bowel movement, and eats like a champ so they let us OUT;) And preferably does them in her diaper and not on me as seems to be the trend these last few days:)

Thank you for continued support, love and prayers. YAWN, YAWN GOODNIGHT

April 10, 2011

Hi everyone,

Well if you don't already know through facebook, email or a phone call from someone close to us Charlotte was admitted to Children's Hospital today. I brought her to the ER this morning and she is currently staying the night in the old familiar ICU here. She started vomiting Friday evening, into Saturday morning and then seemed to be on the mend, still laying around, not active but got up a couple of times yesterday and walked around. She bossed me around a couple of times Saturday night so I thought today she would be golden. She stayed up late and slept in until I woke her at 10:30 in the morning. She seemed a little pale, her diaper was dry (totally unusual, they are usually HUGE in the morning) her color not that great in her fingers/toes but she ate a bagel while laying on the couch and drank a glass of milk. She really seemed out of it though, after her bagel she just kept looking worse and telling me she was scared. I couldn't get her to stand up or walk, and her feet/hands turned purple and were cold. From all of this Mom training I've gathered during this process cold/purple hands and feet are not a good sign and when I pinched them the blood was slow to return. So of course I started panicking, and called Jason at work to calm me down. I gave her another half hour to perk up and then literally threw all of the kids in the car and called the on call cardiologist on the way down to Childrens. He agreed her symptoms were worrisome and to the ER we went. It took most of the day, 2 x-rays, an EKG, an ultrasound of her intestines, IV, and labs to figure out the only thing we're sure of which is she is dehydrated, and her intestines are sluggish.

Dr. Mastropietro came down to the ER to tell us that some of her numbers were concerning, and they were admitting her to his care in the ICU. I was sick to my stomach all morning and of course in the ER they don't tell you jack shit until you start bugging them. I was unusually patient today, but relieved to hear from Dr. Mastropietro because even if its scary news I just know I trust him, he's honest with me and fills me with information which I crave on days like this. I am not good with being told only parts of the story and I like to have ALL of my questions answered until I'm satisfied and like Dr. L'ecuyer he doesn't seem annoyed by my being that way. He's great!!

He reads these blogs sometimes so I want to assure him that I am not a mental mess all of the time, only on the days when I post to this blog. So everyday you don't read from me, is usually an okay day, give or take some of course. This is just a large adjustment to our lives and we still aren't pros at it as was evident by my absolute terror all morning. I told Jason that the hardest part is thinking that every little thing, every reason for an ER visit could be something that they can't fix and I don't know how to feel safe again in that regard. I remember with Alaina and Jake I never felt like they were going to die when I had to take them in the middle of the night with croup, but with Charlotte EVERYTHING feels that way. I just pray it gets easier over time, that's what I pray.

He isn't quite sure why Charlotte is dehydrated, and her symptoms of vomiting, not eating, the kidneys being dry can all be signs that her heart could be declining again so they have her on milrinone an IV medication to help assist her heart, and are giving her fluids to help with the dehydration. Her color returned almost immediately upon entering the ER, go figure. She was very lethargic today and honestly slept most of the day, she didn't fight any tests or pokes because she was just too worn out. I have never seen her like this which was incredibly scary, even when she suffered the dehdydration last year with her heart cath she was not how she was today. Even almost two years ago when we brought her to this same ICU in heart failure she was more active than she was today.

The numbers related to her cardiac side of things were actually not bad and Dr. Mastropietro is confident that this is not heart related (99%). He doesn't know if it was a stomach flu because aside from the first few hours of vomiting the episodes became irratic where usually you just keep throwing up even if nothing is in your stomach. The only other option that has been thrown out there is bladder infection which I just heard was negative. When they did her ultrasound the tech said she had a really full bladder and yet she didn't urinate the entire day. They started her milrinone and we had just discussed doing a catheter to test for a bladder infection when she finally urinated. And it was A LOT, so today was a banner day of being thrown up on and peed on:) As I sit here writing this in the same clothes, the nurses and doctors must want to vomit when they talk to me. LOL. GREAT DAY:)


Within the last few hours she has really perked up, still tired, still whining a lot but talking occasionally. She's watched movies and read books. She put up a fight when they did her catheter and her cheeks are rosy, rosy. So whatever was happening, the medications are helping. I won't know more until tomorrow and we may be here another night but hopefully we'll figure this out as I am not ready for the tranplant chat just yet. I admit after the initial terror of the morning once I spoke to Dr. Mastropietro and he told me her BNP number was only 111 my fears calmed and I realize no matter what happens we'll get through it but it takes a toll mentally and physically to get through these days.



Jason starts a brand new job tomorrow so he went home for the night, so I'll be going it alone tonight. She seems improved, still cranky, but better. Thank you for all of your kind words today and facebook posts of encouragment and prayers.

-C-

Shades of grey

The sun was shining yesterday, and today in the morning. I have been holding out for sunshine so much that I bundled up and sat freezing out on my deck yesterday doing homework in hopes it might save me. I'm not just using "save me" as a metaphor, I have been drowning in shades of grey. There has been no blue, no warmth, just cold grey. This has been a rough winter, rougher than the previous one. Possibly I felt last winter that it was okay to still be sad, or feel depressed because I was still new at this cardiomyopathy stuff. After such a good summer, fall and early winter I was doing great, enjoying school and spending time with the kids, noticing things that I was doing that I hadn't since Charlottes diagnosis. Granted there are always bumps on my emotional road, but nothing like lately. I'm not sure why I've been led off the road and down this path to where I've been, but it has felt LONG, with a lake that tangles you in the branches that line it and push you down. There have been hikers to try and "save me" but this has required grabbing branches to try and climb back up on my own, and it has been unlike any sadness, or anger I've experienced before. It has faded some with color returning occasionally with a night out here with friends, a conversation that intrigues me or the daily routine of having Jason, Brandon and the kids with me, but as soon as they left me in silence I was alone and it's return would take over and I'd allow it to swallow me.

I read an article recently about parents of premature and chronically ill children, that it is common to suffer post traumatic stress disorder any amount of time after watching a child in an ICU for any length of time. I don't know if this possibly could have been reality, or still is but hospitals have shades of grey everywhere. Some shades darker or lighter depending on the situation a family is facing. I remember feeling like blackness in that ICU somedays, and with all that I don't know, I need to write about everything that has gone down to find that last branch to possibly heal my cold skin, and open cuts/scratches. To bring that color back that has been missing for quite awhile now.

This task is so daunting, even with a child who appears SO incredibly well on the outside, just knowing all the "possibilties", the "what if's" and how it affects everyone in the family is a task I pray that I master, I have to master, if we're going to survive this.. Being me sometimes I feel that you have to go to the deepest depths to come out with a better understanding of how to survive them for next time, if there is to ever be a next time. Maybe this journey over the last few months has been part of that, I just hope the lake is getting more shallow, temperature warming, the color returning.

Last week the CCF support group lost three children in one week, without a doubt I hit bottom. The murky, lonely, dark bottom. Some think I need to pull myself away from the group to survive my own life and I agree that I am invested heavily in these families. I don't however think I could ever turn away from them now, not entirely. They mean too much to me, they are formidably the ONLY people who understand my life now. It's true that every once in awhile we lose a child (rare that it would be three), however, according to everyone whose been comforting me for so long now, anyone, can lose a child at anytime. The problem that is failed to be noticed is that for us it actually happens, it's not just a possibility, it's a REAL reality. No matter how much I pull myself out of these small whirlpools that spin me around sometimes, they also feed me with love, with knowledge, with asking nothing in return except to be a feeder to their whirlpools too. It doesn't matter the level of hurt a family is feeling, no one judges there whether I have any right to be as upset as I am because my daughter is doing okay right now. They just know that whatever stage we're at, we're all there for each other battling the uncertainties, the same branches. So I've asked to get one email a day that includes everything, instead of 50 individual ones from the group. I will open myself to the idea that maybe it's time for someone uninvolved to listen to me, to allow me to say all of the stuff that I want to write here but don't because it'd be weird, and I'm weird enough to you all as I already am :)

Most of the time, in fact 95% of the time the stories we share are of hope for new discoveries, triumphs a child who had no hope of overcame. We share doctors that are skilled in certain areas we need, and without a doubt there is ALWAYS an answer when you're in a dark hour. I admit I might have to take a step back and FOCUS on the LIFE that IS in front of me until I am so seasoned at this that I can be support for others. A friend recently said something that although it's tough to accept, is also completely true. She said that "I've only been at this under two years, it's still new and it's still fresh". In the scheme of Charlotte's lifetime, this is such a small amount of time when it seems like SO long ago sometimes. Often I start to sink deeper because I feel so weak to it still, and I hate feeling weak, which then makes me miss another branch and I fall deeper still. She said I am still "a mom in NEED, a mom of a sick child", it reminded me that maybe I'm not ready to be the ultimate cardiomyopathy conquerer, fundraiser champion, counselor to all. I SO want to be but maybe I just need to take it one branch at a time. I don't want my husband paying for it's cost anymore, I've already given enough of my life to this disease. I don't want my children paying for it's cost because they witness my frustration enough on a daily basis.

So today I will begin to grab one by one until I am fully released from this grey lake, and I will with each step TRY to walk the path back, a little closer to acceptance, forgiveness, regained faith, and each bit of my personality and will power that I have allowed lost these last few months.

I will also call someone bigger than myself to help:)

Thanks everyone for your love and support lately, even when I want to be angry at you for telling me what to do, or not do. This won't be the last time you see me cry, or be angry, Charlotte has a LONG way to go in this lifetime.
XOXO
Courtney

Clinic Visit

Hi everyone,

I just wanted to let you know how Charlotte's cardiology visit went today. For the first time EVER in two years the parking garage was full at the hospital and valet was backed up like crazy. I think it's pretty ridiculous that we have to pay $2.50 just to get into the parking garage in the first place but then to have to pay the $4.00 for valet when THERE IS NO WHERE ELSE TO PARK, is just plain IRRITATING. I was pumped because I arrived 20 minutes EARLY, yes 20 and we all know that Courtney Smith arriving anywhere early is a miracle in itself. Well due to the parking hassle I ended up being 15 minutes LATE. If I had been my old self the head of Children's Hospital would've been standing outside in the valet lane giving everyone their $4.00 back. Once I finally got upstairs to cardiology the girl at the front desk said they'd been hearing that a lot lately and that we should really complain to make them do something about it. So I might put in a call or email to someone just to add to the "fix the issue" campaign but I am ultra proud of myself as I did not swear once, or sigh, or want to punch anyone. The way I've been feeling lately I accomplished a great feat in that today;)

The one thing I love about our cardiology office is that no one is ever in a hurry to do anything. I think when you are in the medicine business you learn how to be EXTREMELY patient and I could've been an hour late and no one would've cared.. They are always laid back and just go with the flow, I could learn a few things from them;)

It never ceases to amaze me how calm and collected I feel going there and yet my stomach is ALWAYS a mess. Today on the way as I was trying to calm my own, Charlotte said "my tummy hurts" and all I could think of was how she might inherit the anxious stomach which would really suck because she has LOTS of nerve racking stuff to go through yet..

I had been preparing her for days now in hopes that she would cooperate a little better for her echo than she did last time. I showed her video's of other little kids getting them, and how good they behaved only to hear her several "swiper no swipping's" and "no, no I not's". It turned out that they didn't need one this time which was good for her, bad for me. I like having them because I know she at least hasn't gotten any worse. Unfortunately my preparing her might have backfired because she was terrified of everything that she normally does really well at. Once she realized it wasn't the echo she'd calm down. Not sure how I'm going to approach it next time, but maybe I shouldn't try so hard to make her accept it.

Regardless she hasn't seemed any different and keeps chugging away so I assume and Dr. L'ecuyer confirmed that she appears unchanged. We talked about preschool a little and he doesn't feel that she needs any restrictions other than the staff and teachers allowing her to regulate her own activity level. I'm not sure how I should handle that, I've been reading about doing a 504 but he's not sure it is needed for preschool. I'll talk to the preschool program about it when I sign her up in two weeks. We discussed genetic testing and we can do that anytime, it's just up to me to say the word. I keep talking myself out of it which is ridiculous on several fronts. If I do it and they don't find any gene mutation that caused her cardiomyopathy it won't change anything we just continue on as we are now, and even if they did find something we would continue on as we are now. However, if we did find a mutation, all of us could also be tested for that mutation and it may protect other family members from experiencing what Charlotte has.

As you can see whenever I leave appointments I almost always end up with more questions than what I came with. This is the story of this life, questions, answers, questions.

He did outfit her with a 24 hour holter which has five leads attached to a little box on a string she has to wear around her neck. At first after she got over being ticked about the "stickers" as I call them, she said "oooo a necklace" when we put the box on. We've been home for a few hours now, (she likes all clothes off at home) and therefore the box allure is starting to wear off. We've had three attempts to remove the box so far but all in all she's playing and just following her normal routine. We'll see how bedtime goes:)

Dr. L'ecuyer told me today that one of his patients who remained stable like Charlotte for four years declined recently and required transplant. We again discussed how variable the disease is, and just because that is another childs story doesn't mean it will be Charlotte's. Another nuance of our new life, we just don't know what her story will be. For all who think I should be moving on, over my fears, just living my life normally, that is most what you misunderstand. A parents playbook consists of raising your children to be their best, elementary school-jr. high-high school and college. Then it's work, possibly marriage, and grandchildren along with all of the glorious, happy, dirty, messy, emotional in between. A parent of a child with a chronic life threatening illness doesn't get that playbook. Our playbook was shredded, it has no plays, it is yet to be determined. Does it mean we won't enjoy IT, whatever "IT" is? No of course not, but living this way is hard.

He was funny because he has another doctor shadowing him and was sure to explain to her that he tells me things she might not hear him tell others. Because, as he put it "Mrs. Smith wants to know EVERYTHING", which of course gave a good laugh. Driving home before I made my phone calls, I thought about his comment, which is totally hilarious and true. I do want to know EVERYTHING. I want to obsess over it, it is my survival mechanism.

I may have to write more about that thought later, because I have been feeling very pent up lately and have so many thoughts to let out. However my thoughts of late aren't all that pleasant, and anger has been at the top of my list so for now I'm sending this off so you know how it went today.

Thanks and Love,
Courtney

Complacency

As most of you are well aware every month when it is time to refill Charlotte's meds I almost always end up crying on the way home, or parked in my space outside the hospital. There is always some small frustration that sets me off and reminds me of all of this messiness; how much dealing with insurance companies, receiving bills for $700, safety of the meds I am picking up, seeing the other families/children hurting is just worlds away from where my life was two years ago. I hate it everytime, I've hated it for almost two years. It's like seeing a picture of someone you loved who has died and mourning them all over again each time. I know I still have a long way to go in accepting this reality of ours, in just finding a way to be okay with it. My psychology teachers advice of "accepting it all", the only way she say's our children can deal with chronic illness such as this is for us to accept it, all of it, the meds, the tests, the pokes, the pain, and even possibly their death. I'm not sure I can accept it all and be okay with it, but my hope is someday I will fake it like an oscar winning actress. Right now I do a good job, walk around with a smile whether I'm happy or breaking inside on that particular day. I really expected to be healed by now, to have dealt with it all and gone back to my happy go lucky life. My 100% belief that everything is "gonna be all right" as the song goes.

I finally made the jump to find a pharmacy closer to my home. I took a day, researched, called around, got prices etc.. No one made me feel as safe as I felt at Childrens pharmacy no matter how much their customer service sucks. I was advised however after starting a mini peaceful protest in their lobby last time that they are just too busy of a pharmacy, can't manage to have good customer service and that I should try and find a specialty pharmacy closer to my home so they wouldn't have to inconvenience me for one hour drives anymore.. I left in shock, and super ticked off, the line of people behind me jumped on my bandwagon. Regardless the search was on and of course when I talked to our nurse Jessica she immediately had a wonderful pharmacy that a lot of their tranplant patients use. I have officially learned my lesson, "always call Dr. L'ecuyer's office first for advice".. Duh..

Anyhow the pharmacist they recommended seems awesome so far. He is friendly, very customer oriented. He called me to get all of our information and said he would get all of our meds to be delivered on the same day. DELIVERED people, no driving, no waiting in line. Easy, he made it incredibly easy. Eric the pharmacist might become my new best friend:)

In going through this easiness I have also been going through a terrifying feeling. I think one of the main reasons I stayed in my misery with our previous pharmacy for so long is because I want the pain in the ass, cry in my car experience. As much as I hate it, having things easy has become incredibly "scary". I fear being complacent, I fear that Charley's meds, doctors appointments, and routine will become so "routine" that I won't catch something catastrophic. That "when" or "if" we find ourselves back in a life threatening situation, I will have forgotten how to survive it.

On New Years Eve we had a situation, something I have not been able to get off my mind. Jason and I were in the middle of a party and all of a sudden I had to completely switch gears and call the on call cardiologist who advised us, my parents, and Charlotte to come in for observation. We left 20 people partying at our house while we were swept back into hospital mode. I always think of Jason and Jake when they come home from work/school. They are not good at switching gears, and that's what all of this is. It's going from your LIFE to SURVIVAL in a matter of minutes. It's getting there on time, it's understanding all of the information being thrown at you, it's watching your most precious beings tortured with needles and wires. We were lucky and en route received a call back that we were in the clear and that if she wasn't experiencing any symptoms we could return to our nights. So we went home to our house full of people and I drank, cranked up the tunes and did the only thing that really calms me, danced. Along with calling to check on Charlotte every hour until 4:30 in the morning. For four days after I stayed up almost all night checking her heart and lung sounds, worried until I finally emailed Dr. L'ecuyer to tell me I could stop worrying. I knew she was fine but it's survival, I hadn't checked her sounds or counted rates in months, and here I was switching gears back three, four months ago in a matter of a day. It's a ton to deal with in a short amount of time, and if I get out of practice my fear is I will forget how to survive. I will crumble. Complacency will kill me.