February 2, 2012

Hi everyone, above is a picture of Charlotte in the cardiology office with her new friend the "RRROOOAARRING" Tony the Tiger Flashlight.  She befriended him today along with three suckers, some Dora stickers, a 24 hour holter monitor, and a GIANT and adorable Great Dane whose name is escaping me at the moment.  All of these collected during her clinic visit with Dr. L'ecuyer because she was AMAZING during her echo!!!  She wanted to get upset a couple of times but choked down the tears, and concentrated on our angry birds game instead:)  I know I'm going to pay for that 15 minutes of holding my tablet above her head, my arms were burning, lol..

Her echo was unchanged which means her heart function didn't improve but it also didn't get any worse so we for sanity purposes take the status quo and check it off as a good appointment.  I suppose it should be viewed as a 'stellar' appointment and all of you can cheer it that way, I always hold a little more hope than I should, especially as we had practically doubled her carvedilol at her heart cath three months ago.  I guess I thought we'd see some miraculous improvement that only the catholic church could explain as a work of God but we'll take what we can get:)

She hadn't grown any since her last appointment which was also somewhat disturbing to me but Dr. L'ecuyer isn't concerned as of right now.  I love the things we say to make ourselves feel that everything is safe, she is after all a three year old with a diet of some of the most unhealthy foods ever developed and has been sick for a week and barely eating so that MUST be the reason.  Toddlers growth starts to slow down a little too so they aren't quite on the curve hiatus that they are when they are babies.  I don't need a scale to tell me she hasn't gained weight because I am so in tune to her body mass that I can feel it when she's lost an ounce, so nothing surprising there.

She was awesome today, that's all I have to say, about all of my kids.  They are awesome!!  Charlotte waltzed into that clinic today and played her games on the cool computers they have in the waiting room like she always does.  She colored the cow picture, she played some Luxor and putt putt golf.  I signed us in and took my seat in my usual chair until she needed my help and I knelt down next to the purple chair that she ALWAYS sits in while playing.  I said Hi to our friends at the desk, I smiled at the other parents in the waiting room, it's the same smile we always give to each other, strangers but strangers who smile one of nerves, hope, love, fear, and every other emotion that only you and them understand.  The smile that if you could just be yourself, in the life of a heart parent (or any other special needs child I imagine) you'd wear all of the time but you don't because no one would want to be around you ever, lol. 

She stood on the scale, got her height, blood pressure and collected her first sucker and Dora stickers with a smile on her face and quiet voice talking to our nurse.  She saw Dr. L'ecuyer in the hallway and without hesitation went right up to him, they chatted for a minute and then we waited to be moved to the echo room.  It's quiet and dark in there and she layed on the table, I held the tablet and she loved our tech's Curious George Scrub shirt.  I'm going to have to buy me one of those when I work there someday, the kids love it.  She was a champ with only a few whimpers throughout, mainly when they get to her neck, she hates that part.  When done the tech gave her the RRROOAARRINNG tony the tiger flashlight, two suckers and we went back to our room to wait for Dr. L'ecuyer. 

The funny part was a little boy who might have been a transplant patient also received a RRROOOAAARRIINNGG tony the tiger and to hear them both going off in the office made me laugh.  He was probably four and Charlotte checked him out immediately when she saw he had the same toy, insta friend to her.  So Dr. L'ecuyer came in we chatted about all of my questions, echo was unchanged, meds stay the same, yada yada, listen to Charlotte, feel her liver, bloodwork run down, heart cath run down, some nursing/doctor shop talk, fitted her with her holter monitor and we were outta there.  Although, back up,, he is leaving for a month which has me worried.  He said he'd be back, but please if you would add him to your prayer lists next to Charlotte.  After all he is a very big reason she is still here with us all, I hate to think of him struggling with something healthwise of his own, he's too important to us.  He deserves to be well, oh wait does ANYONE I know deserve what they deal with, NO they don't.  Just please pray for him. 

We met the Great Dane downstairs in the entrance of the hospital and Charlotte immediately fell in love.  I noticed when I got home from school and went to give her a kiss in bed that she now along with 25 Barbies is sharing her bed with four small stuffed dogs that had to be tucked in right next to her.  lol.  I can't wait to get a dog one of these days, I'd love a Great Dane.  A dog that's going to survive this house needs to be that BIG ;)  lol. 

So all in all it was a good day, it was a great day actually.  Charlotte and I walked to the elevator in the parking garage and once inside she said "it was a good day" (while jittering about, one of the topics discussed about her health today), to which I replied "it was a good day, you got 3 suckers, Dora stickers, a new Tiger flashlight, your holter 'necklace', and to pet and love on a Great Dane", we slapped high five as the elevator rose and she was all smiles.  I started to cry...



I continued to cry as we left the parking garage, so much so that I accidentally went up a level when I meant to go down.  I know it doesn't make sense, why would I be crying, but I cry every time I leave that hospital with her and don't have to stay.  I have been called 'emotional' more times in the last few months than I care to share.  It's true, I am emotional.  I can walk through life and put on a front most of the time but yes, this is emotional for me.  My life is emotional, every triumph my kids have whether it's Alaina getting an 'A' on a project, or rehearsing lines when she thinks I can't hear for her play.  Jacob's obsession right now with killing aliens on the xbox game Halo and the funny practical maturity of things he says lately as if we're all stupid.  When he shows me he's kicking butt on math tests, or doing his reading/homework at my kitchen table.  Alaina's interests and excitement for the books she reads.  Whatever it is, good or bad, I am emotional about it.  I miss them, I was like a mad crazy insane person the last month between this CNA program, my class at OCC, feeling guilty about not being there for ANYONE ELSE, and just continued, constant worry about Charlotte.  I can't control life, and I come from a family of control freaks, it's part of my genetic makeup and yet I can't control a damn thing and some of the time I can let go too completely.  It's like I'm always searching for balance (yes, LIBRA I AM )and with this new life raising a sick child it's tough to find balance..  At any moment someone I love or care about could be taken from me and well, all of you play a part in my life.  So yes, my rose colored glasses have sunk to the bottom of Lake Superior and I will be emotional about my life.  I will cry and love and tell everyone how I feel whether they want to hear it or not. 

Most days I feel like I can't breath, life is passing me by quicker and quicker all of the time.  Hardly ANY of the things I want to do get done around here (yes, my Christmas decorations are still up), and NONE of the things I want to get done for other people happen.  My kids are growing up all of the time and I can't stop them.  I don't know how long I will have them, especially Charlotte.  Life is full of heavy weight on our shoulders. 

Tonight I laid on the floor in the girls room when I got home from school. Jason must have just put them down to bed because when I went to kiss them they were up.  So I just laid on their floor because Charlotte likes to fall asleep that way, looking up at the clouds on the blue ceiling, with the tree I painted overhanging above me.  I looked at my beautiful, vibrant, brave, smart, loving, giving 10 year old in the face which I don't get to do enough of these days and for the first time in quite awhile I felt my breath.  

It was a good day.  I know I don't make knowing me easy on any of you, and I know I rarely give back what you give me.  Thank you though for sticking this out with us.  I love all of you, xoxo YAWN, GOODNIGHT.

  

 

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:)