December 17, 2013

Hi everyone,
As you can see I've been extremely busy and haven't written in a VERY long time. Here's a little update and some Charley's Angels Toy Drive thoughts as well.

Charlotte started kindergarten this fall, Jacob is now in 4th grade and Alaina is in 7th.  I can't believe how much the kids have grown and changed in such a short time.  It always feels that kids level out and then have ages where you see rapid changes in how they look, talk, and their intelligence level.  I think all three kids seem to be in big growth spurts right now.  Alaina looks like a 15 year old girl when she's dressed nice (and not in her usual leggings, sweatshirts, broken nerd glasses, with hair in a bun as seems to be her favorite;).  I am loving watching her grow and enter this new phase of teenagedom, she's such a good student, and gorgeous inside and out.  Jacob is doing great in school and obsessed with his Xbox games and chatting/spending time with his friends.  Charlotte is her usual spirited little sprite, singing constantly and loving playing dress up games on the tablet.  She calls it "getting styled";)  She is LOVING KINDERGARTEN, and her teacher Mrs. Smith.  It was so funny because she came up to me recently and said "Mrs. Smith" (meaning her teacher) but I just looked up and said "yea Charley what's up".  She immediately knew what she had done but also understood how my answering to "Mrs. Smith" made sense too, she was cracking up at herself, it was funny that she picked up on the humor of it.  She continues to be hilarious in nature and it's hard to discipline her because she rationalizes her attitude/behavior so convincingly, lol.  

For those of you who don't know we moved in October.  We are living in a lake subdivision down from Sylvan Lake.  I love the neighborhood, it has a lot of older, smaller homes with city lots but the architecture of the neighborhood is very cute.  We will now have beach/boat access and the neighborhood has a very community feel to it.  I think the family member who won out the most on the deal is Ellie.  She now has a fenced in backyard and romps around all day outside when I'm home.  Her and I often go for walks around the lake and she gets her Bernese Mtn Dog show prance on and smiles the whole time.  She turned 1 this past weekend and I will try and post pictures of how big she's grown.  I haven't weighed her lately but she's got to be close to 100lbs now.  She has been on a shoe bender lately (grr) and I swear she is constantly hungry but she's so sweet and loving her negatives tend to get outweighed by her cute factor.

Lot's of changes in our lives, I FINALLY finished my pre-reqs and was accepted into the nursing program (YAY).  I just finished my second semester, (i.e. why I have been so absent from my blog writing, and everything else for that matter).  Granted it's still early but I am absolutely LOVING this experience.  I am still working as a PCT in Southfield, on midnights (YAWN).  I think this is by far one of the hardest careers to have, but,, I never leave feeling like I don't ever want to do it again.  I love the dynamic nature of it and of course helping people in whatever way I can is the biggest bonus;)  lol.  I had my first OR experience recently and while it is nothing like TV surgery it was still very interesting to watch and definitely sparked my interest.  I think the hardest thing about becoming a nurse is going to be deciding what to do once I have some experience under my feet.  I'm interested in forensic nursing, pediatrics, surgery, and I'm just getting started.

Okay so enough about us, onto Charlotte.  It's been so long since I've written, which is evidence that things have been rolling along pretty smoothly with Charlotte's health.  She has graduated to clinic visits every 4 months instead of 3 which two years ago would've absolutely terrified me.  Her last appt was two weeks ago and Dr. Blake said that her heart function is almost near the low end of normal, so we're inching along.  The best part is the obvious improvement even I can see on her echo's.  When you used to look at her giant heart, it seemed like flabby jello the way it contracted and relaxed.  Think of pressing on jello and the jiggle radiates through it (sorry only analogy I could come up with at this minute;)  Our hearts should be strong and muscular so when it contracts and relaxes it doesn't appear to jiggle or have extra movements.  Her's now looks stronger when it cycles through, not perfect, and still BIG but better, definitely better.  Her doctor thinks that if her next appointment is good we can probably go to 6 month appointments (YIKES, that makes my heart flutter a little;).

She's growing, playing and while still can't run/or majorly exert herself without eventually getting tired (sooner than other kids her age) she is holding her own and I am so proud of her attitude.  At her last visit she was SO EXCITED to take her portable EKG to school and show all her friends.  The tech gave her a copy of her EKG and some heart coloring pages for her class and I swear it took everything inside of me not to BALL my eyes out seeing her showing it off to her class.  I have been a mess these first few years, and yet she just keeps on chugging along with the same happy, bright positive attitude.  So I think I'm finally able to take her cue and just enjoy life, enjoy the journey as much as possible.  Granted with some pity parties in between still;)  lol.

It helps that I have made myself so busy that I don't have a lot of time for pity parties anymore.  I don't have a lot of time to sit around and be afraid we're going to lose her someday.  I have a greater appreciation now for the days we are given, especially after losing my friend Jon this past summer.  He lived in California all these years since his HS graduation days and I'd only see his family when they'd come home.  My kids have always loved seeing his kids though and we'd take the kids to the beach on Lake Huron or chuck e cheese.  I have his funeral card and picture on our fridge, it literally was one of the last things packed when moved and one of the first things to go on the new house fridge.  I need it there to remind myself that he's gone, it's so easy to forget because I didn't see him all the time, and then I get slapped in the face when I have a few minutes to focus on reality.  He left behind his family, a wife and three young girls, I know they are strong (his wife's a nurse so that's gotta count for something) but I miss them, and wish I could hug them in person, or had time to at least talk more or visit once in awhile.  I miss him, he was another big brother to me.  Always willing to help our family, always intervening between Mom and I's teenage fights over the phone, haha;)  I think one of the reason's I loved him so was because he never expected anything in return, he just was there for me whenever I needed him, there for us when we needed him.  And we tried to return the favor as much as we could.  I have to believe that saying "god takes the good ones early" or whatever it is.  He is a great one.  I find more and more that I have come to accept the reality that "sh#@)" just happens.  I don't know why Charlotte got sick, I don't know why Jon died so young.  So I hold onto the fact that someday I'll be made to understand.

I hope all of you have a wonderful Christmas, or Holiday of your choice.  Remember to be kind when you're out there struggling through the snow, traffic, lines etc.  You don't know what pressure's the person adjacent to you is facing this season.  Try and take a deep breath when you're feeling stressed or frustrated and focus on the big picture of what really matters in your life.  I know it's hard but we need to be more tolerant, more patient, and give back to others more than we take for ourselves.  I am still doing Charlotte's Angels Toy Drive for the Children's Hospital Foundation so if you'd like to donate you have until Friday the 20th.  I have been so incredibly busy (literally chicken with head cut off crazy busy) that I haven't promoted it as often as I normally would.  Yet my cousin Jenna got her employer at On the Dunes on Haggerty Rd involved and if you bring a toy to donate for Charley's Angels they will take 10% off your food bill and apply it to the Children's Hospital Foundation along with the toy.  It is a great opportunity to give something special to the kids who are in hospital right now..  I am so thankful for all of you who took it upon yourselves to carry my pea sized mission on when I've kind of been unavailable this year.  I imagine the next time I have an echo they are going to tell me my heart is 8 sizes too big as well, not because I'm sick but because of all of you who are so supportive of us and have been these last four years!!  THANK YOU!   Words can not do my gratitude justice.

Merry Christmas and Love,
Courtney

Kindergarten Roundup= YIKES

There are many things happening in the Smith house.  So many wonderful and exciting things.  We are adopting a puppy, a Bernese Mtn Dog puppy we named Ellie.  To say that we are excited is an understatement, we are literally counting down the days until her arrival.  Alaina just had her first band concert, she's auditioning in her schools talent show, won a solo in choir and has her first babysitting job this week.  Jacob is playing soccer three times a week, is a grade level above where he needs to be with reading and most likely will test for advanced math placement.  The kids are growing up and I realize now more than ever how important it was to spend as much time with them as I possibly could when they were little.  I am so glad Jason and I made the choices we did, the small sacrifices we made so that I could be here.  

Jason and I are celebrating 15 years of being hitched this summer.  We are discussing renewing our vows because well, it seems maybe we have forgotten a few things over the last few years.  It's strange how things have worked out for us.  We hate it when so often our words start out "when Charlotte got sick", or how we often have to remind ourselves that maybe things that have taken place between us were because our marriage that used to be great at giving "100%" became one of giving "0%".  I don't think either of us really understood the toll this scary, trying disease had taken on us personally.  We were so busy trying to process all that was going on in our lives, and our emotions about those things that I truly feel we had nothing left to give to each other.  Everyone, and everything else took precedent and when we didn't have all of that we were left trying to deal with it all on our own.  It's been a rough few years, and I know that we may face rough times ahead.  In all aspects of our lives, not just the cardiomyopathy one.  I think we are both ready to stop standing still, to stop looking back and instead start focusing on the future.  As much as living day to day can allow anyway.  With cardiomyopathy in the family you can plan for the future but always have to understand that things can change at anytime.  I look at Charley now thriving and growing so brightly at 4 years old and feel incredibly blessed by God, blessed by modern medicine, and blessed by everyone who prays for her and supports us.

Tonight I am going to Kindergarten round up for her..  The cut off date has changed here but she can still get in because her birthday is so close, assuming she passes the testing.  My working my butt off these last few years in school to apply for the nursing program were all riding on her attending kindergarten next fall, while I attended to my nursing education..  

Today I was thinking about how nervous I was for Alaina entering kindergarten.  She was not the outgoing, take charge kid she is now back then.  She was very shy, and often I would get upset that she'd take the backseat to any involvement or attention.  Then there was the bus riding, whether her teacher would grow her etc.. By the time Jake went to kindergarten I had no fears about his education or personal/social growth. Alaina had been at his school, would be on his bus, and he had one year of preschool there so he was already very comfortable with the staff and building.  

Charlotte is a whole different ball game.  I have found myself worrying already about her entrance into the real world;)  As it was when we brought her home the second time from the hospital is now, that the rules that apply to most third children do not apply to her.  The rule book I had started reading from was set ablaze after her diagnosis, and it's like having our first child all over again.  The rules are all new, or changed and I have no idea what to expect. 

I don't know if she'll have the stamina to go through a full day of class as she does tire more easily than healthy kids her age.  I don't know if she'll get a diagnosis of turrets syndrome to go along with her dilated cardiomyopathy if she's still twitchy this summer when they will reevaluate her.  I worry about her pushing herself to far, about whether an AED will be near enough to her at all times.  It's terrifying to think that she will be out of my presence for twice as long as she is now at preschool, and that I can't access her at anytime to check on her.  I have to figure out a medical 504, or IEP or whatever the hell the requirements are she will need.  I will need to educate every single person that comes in contact with her of what to watch out for, what her diagnosis means, and develop a plan with them for any emergency that might arise, etc..  

As you can see I'm feeling a little overwhelmed by the whole business.  I'm sure her appointment tomorrow isn't helping as we're meeting the new doctor that took Dr. L'ecuyer's place.  I know it will all work out but I needed to vent for a few minutes.  I feel like all of the confidence I had as a mom to three, has been sucked out of me.  I am now the mom of two, and a special needs child.  It's a very different life we're living now than when Alaina and Jake started kindergarten.  I know we'll face whatever comes our way.  We're Smith's, and if life was easy well,  we wouldn't know what to do with ourselves.  :)

Charley's Angels Toy Drive

Hi everyone,

No worries Charley is doing great.  Happily bouncing around these days with her latest obsession the My Little Ponies.  Yes, a girl after my own heart.  If only I hadn't thrown out my ginormous My Little Pony ranch from the early 80's:(  Anyway she is doing well, this post is about our toy drive:)


I started the Charley's Angels Toy Drive a few years ago because I have never forgotten what it felt like to be in that PICU all those days.  I have never forgotten how lonely it felt, how uncertain it was.  You could literally see Charley's spirit being sucked out of her.  Her smiles a little less, her excitement to see new people a little waning.  It became not about what fun people were, but instead what were they going to do to her.  Doctors and nurses would come to our room to see her telling me they wanted to come see what they had been told was "the cutest happiest baby in the hospital".  I'm not making that up either they came from different departments just to get a smile from her and find out how she was.  By the time we left they could still get smiles and excitement but she had a sideways glance about her first.  I think we all suffered some Post Traumatic Stress, even Charley wasn't right at first when we got her home.  It is a very traumatic experience to learn your beautiful perfect child might die, and then see everything they go through. 

I remember entering our second week feeling like we were never going to go home again, and I know friends whose children have lived in the hospital, months at a time.  The beauty of kids (and I almost feel a need in this way for adults hospitalized) is that if kids have stuff to do to pass the time they handle it all so much better.  There were babies/children/teenagers who had no parents come visit them all day, some who never had a visitor at all and besides the nurses had nothing to look at or do to pass the time.  It was incredibly heartbreaking. 

One night in particular while Charley had her Cloud B Twilight Turtle projecting it's stars on the hospital ceiling, her leapfrog Violet dog playing her a lullaby and I was leaned over the edge of her metal crib stroking her head; it felt almost like we were home.  I was always hypersensitive though to the child in the next room, who I hadn't seen a single person visit or hold all day except for the nurse.  I asked the nurse when she came in if they had mobiles, or projecting turtles for the baby in the next room and was told there was a toy closet by the nurses station.  I went in search of something for that poor baby and there was one mobile but it wasn't working.  The baby went home the next day but it really upset me and I knew from that moment that collecting toys was going to be my first 'post-finding out my daughter had a rare and life threatening illness bucket list' item.  Since then I've added a lot to that list, and hope to continue giving back to that hospital built 'just for them' as the commercial so eloquently says;)   

I tell you these stories of my experiences because I already know that the people I choose and have chosen to surround myself with and therefore my family are givers.  You are works of art, like me, constantly adding to and being molded in different ways.  You are learners, you pay attention and truly know compassion.  This little cause of our's is still in it's infancy so to speak.  It's only been a few years but already it is growing.  The toy lot is much bigger than last year, and bigger than the year before that.  Charlotte eyes all of your goodies for her 'friends at the hospital' and it always floors me that being a toddler she does not cry or carry on to have the toys for herself.  It's like she just gets it and granted the doll house and toy phone were tough to get past she just asked me to put them on her own Christmas list for Santa. 

I hope you are proud of yourselves for whatever causes you take up.  Maybe you can't do this one, I know I can't do nearly as much as I would LOVE to.  The point is to have one, and if you don't I hope you'll get one, cough cough like our's ;)  It really brings so much cheer to the kids to have a toy to play with, a mobile to look at, to take a half hour out of their day filled of tests and pokes to work from the craft cart.  You are honestly making a difference in their experience and by helping them even a little you are also helping their parents.  I've grown a million times over from this experience with Charlotte.  I've gained an expansive (and sometimes detrimental) amount of personal, spiritual growth.  I hope that all of you will take time out of your days to give back in whatever way you can.  Not just over the holidays but everyday.  I know that I am in good company in my life. 

Thank you for all of the love, support, and counseling so many of you give me:)  You are amazing friends, family and acquaintances!! 

 

The stuffed animals of my life

I'm not sure where to begin, for the first time in a long time I helped put Charlotte to bed.  I tucked her in with her new big girl bedspread, in her new big girl bed, with her blanket, stuffed elephant, owl nightlight, her sister reading in her bunk above her.  We read an Eric Carle book about a spider who turns down all of her friends who want to play to work on her web all day just to catch one fly.  When her owl friend comes to play at night she is fast asleep after her long day of work.  I feel like that spider a lot nowadays, I feel like I spend a whole lot of time weaving webs between kids, school, and today I signed my papers, got my security clearance, badge and now am officially a PCT for a local hospital..  Each strand of my life is pulling from all ends and I never feel like I am giving anyone of them the detail they deserve.  Not Jason, not the kids, not my schoolwork, friends, parents, relatives, it just never seems enough to show my appreciation for the support system I have.  I've learned a lot about managing it all but I'm tired.  

I have strep throat. I start my new job next week.  I am only half way through my semester.  The semester that single handedly decides whether I get into the nursing program or wait to try again another time.  I have needed my warm bed, comfy blankets, cold washcloths, LOTS of tea and vernors, my favorite PJ's, and all of my grown up stuffed animals so to speak to get me through this week.  And it's only Wednesday.

Tomorrow I have to say goodbye to my biggest stuffed animal of all, Dr. L'ecuyer.  I've been so busy lately I haven't even had time to really process it, so I assumed I was doing okay.  Tonight as Charlotte was settling in and we talked about how we had to get up early and go say goodbye to Dr. L'ecuyer it hit me, this is real.  I have to be brave and not ball my eyes out when we leave knowing I now have to trust someone new with her care.  Tears immediately well.  My throat shrinks.  

Charlotte was so cute because she sort of confusedly asked "he has to take care of other sick kids?"  She said it as if she had no idea that in a completely other place there were other kids like her. And she didn't understand why he had to go there and not take care of her anymore.  Luckily she's three and get's over things quickly but she did say "what if I don't like the new doctor, and I don't want a jelly test?"  I assured her that we will like her new doctor and that mommy would make sure they would take good care of her.

All of that is true, I will always be her greatest advocate, I will always fight for her life unless there is no more fight to be had.  My rational mind says her cardiologist only sees her once every three months, I take care of her everyday.  I know her vitals better than anyone, I know when her color is off, I know when she is tired, I can tell she is going to have a fever a half day before it starts just by her heart rate.  The thing is I rely on him to know when she might need extra support, I rely on him to know when to list her, I rely on him to know which medications she needs, and if something new arises I rely on him to know what course to take.  He is my cardiomyopathy stuffed animal, my comfort with a stethoscope. 

 He has trusted me with her care, he allowed me to keep nursing instead of trying to pump feed her every meal when she absolutely refused bottles of any kind (and believe me we tried them all).  He trusted me to stick a tube down her throat every few days for a month, and mix up high calorie formula for her pump.  He didn't list her immediately as she continued to drop off the growth charts knowing that I wasn't producing enough to sustain her because I was so terrified and stressed out.  Low and behold when she started eating and drinking from a sippy cup she gained weight like crazy.  He is patient enough but not so that he endangers her and I have trusted him with every aspect of her care.  

I'm sure it will all be fine, but as you've all read over the last few years I have grabbed all kinds of branches for support.  My list of stuffed animal comfort is lengthy, I have held onto things so tight my hands hurt in an effort to find balance again.  Some of these comforts have proven healthy and some have really really excruciatingly been painful to let go of.  Unfortunately our good doctor is one that is going to leave a mark. 

I know I will grow to love her new doctor, at least I hope so, and Dr. L'ecuyer and I will probably keep in touch.  I hope Virginia knows how lucky they are to be gaining such a great guy as their chief of pediatric cardiology.  Charlotte got her sassy face on and said "well he needs to COME BACK."  She is so funny, she just never stops entertaining me;)  

I know that this is just another strand in my web, that just because her doctor is leaving does not mean that one broken strand will cause my whole web to fall apart.  While I have gained such an appreciation for living each moment to it's fullest, to never take fun, love, family and friends for granted I also have established a beautiful web that when broken feels scary again.  It throws off my sense of security.  Please say a prayer that whoever Charlotte's new doctor is to be that I gain the same trust and friendship in them that I had found in the good doctor Dr. L'ecuyer.  And that Charlotte grows to like them as much as she loves her "Dr. ecure";)  I will try and update tomorrow sometime after her appointment but it's a dawn to dusk day for me so it might be later in the week.

Today Charlotte had a cardiology visit with our great Dr..  With the older two kids out of school they had to endure an 8:30am departure time this morning.  This means nothing for Jake whose up at 6am anyway but Alaina's now preteen midnight bedtime makes an 8:00am wake up difficult.  As per usual my kids never cease to impress me (obviously despite the normal ups and downs;) and were incredibly well behaved and helpful in getting us all out the door.

Charlotte literally is an 'old pro' at these visits now.  I don't even have to direct her anymore she just listens to the Medical Assistant LaShay and does what's needed beautifully.  Her stats were all good, she's gained 5 lbs and I don't have her height on hand but I know she's a lot taller.  She was a little upset however that we did not have an EKG and kept saying "I need my EKG" but I assured her that she was having a 24 hour holter which is a portable EKG and the tears were avoided.  Goof!!

She did amazing for her ECHO and only whined a little here and there.  We were in the room without a TV too so that was a big feat, luckily I had angry birds to distract her a little although I don't even think she needs that anymore.  She just carried on a conversation with the tech Jodi and sang to herself. 

For the first time EVER her valve was leaking just enough that they were able to measure her pressures which is GREAT news because that means Dr. L'ecuyer got good pressures and said she can avoid her heart cath in November (unless something changes between now and then of course), WOOT WOOT.

Her shortening fraction was around 25% and a normal fraction is between 28%-42% so we're inching closer which is also a VERY GOOD thing!!  Her SF when she was a baby was in the single digits like 4%-7%.  As per usual the meds seem to be doing the trick!!

Her left ventricle is still very dilated and the muscle stretched out.  When she was a baby her heart size was I believe something like 7-8 standard deviations above normal and now it is around 4-5 deviations above normal.  Basically if we can keep it from dilating any further her body will sort of potentially grow into her heart size.  It doesn't mean the muscle will get stronger, or heal it just means it will be proportional to her size. 

The one minor thing brought up today that has not been an issue before is that she was experiencing some arrhythmia's during her echo.  They are not happening within a small time frame and Dr. L'ecuyer said her last holter showed a couple here and there but as of right now he's not concerned.  She was fitted with another 24 hour holter and I'll mail it back tomorrow and within a week should know if they found anything significant. 

All in all it was a POSITIVE report and because there are no significant changes or worries we stay the course.  I did ask about some of his patients that were a little older than Charlotte that he had mentioned when she was first diagnosed.  At the time (3 years ago) when he was explaining the variability of her disease he said he had several children who were medically managed with medication, growing and thriving 3 years or older who had also been diagnosed as babies.  Today he said he had one child who went down hill at age 5 and had to be transplanted.  Another who was still doing well on medication but sometimes required a hospitalization tune up, meaning a virus/flu causes the child to be hospitalized so the Dr.s hook them up to milrinione (their favorite IV heart drug of choice, lol) to give the heart a boost.   He also has a CM child who is 12 still doing like Charlotte is now.  I know he's lost at least one, although I'm not sure that was a cardiomyopathy child or a different heart problem. Basically he just reiterated what I already know and the reason why some of you might not understand my own emotional variability.  He said that with Charley's muscle being so weak, and her ventricle so stretched out that it is very unlikely that she will live to old age this way and never experience complications requiring further action to be taken.  It's just a wait, see, and try to stay on top of it prognosis. 

Cardiomyopathy has no set path, it has no mercy and even though you do everything 'right' so to speak anything can happen at anytime.  Ask any of my friends who've lost their children and they'll tell you they 'truly' believed that their children would always be with them. 

I'm sorry to my friend for making her cry in the McDonalds drive thru today after she listened to my voicemail (I was losing it when trying to tell her how it went;)  lol..  I still leave that office with good news and I shed tears of joy and glee that she is doing so well, and then I also shed them for the fear of not getting any guarantee on her future.  It's a frustrating life to look at your child and think they look so amazing but also always being on guard so as not to miss a small symptom that things are turning the opposite way.  I feel like we have climbed mountains and grown so much in acceptance of what we're facing but I am always worried, always on guard and I'm learning to just deal with that and take it one day at a time.  It has given me a new appreciation for life and living it to our fullest. 

Because we are so blessed to have such a prayerful community I would like to ask a favor.  There is a woman within my CCF family who has become very important to me.  She's been at it longer than I and offered a lot of strength and support to me in being a heart mom.  Her name is Dorie and her son Matt was listed today at Childrens in Boston for a heart transplant.  Matt has done okay managed with medication but like so many kids, as he's hit adolesence has been declining in his health and the doctors now feel it is his time to be listed.  I imagine this is a very scary time for them and Dorie has expressed her feelings about the heart strings being pulled because of course she wants her son to live and grow in health, but knowing that another family has to lose their own to save hers is a difficult thing to experience.  Please if you would add Matt to all of your lists that you have shared Charlotte with, it would mean a great deal to me..  Thank you.

So that's all for now, maybe I'll write later in the week about how I've been doing.  I feel like I've made a lot of headway in acceptance, and gaining my power back. 

Love to all of you:)
Courtney  

3 years ago today!! 

After counting Charlotte's breath earlier in the day April 24th of 2009, and riding in an ambulance down to Childrens hospital, completely clueless as to what our local ER feared and why they sent her down. Late that evening I watched her echo and w/out any medical training knew it was bad.  The cardiologist barely spoke english and we couldn't understand her that well, however I knew she was saying my baby might not make it.  I heard the words "there is no fix", "there are options".  I heard ICU, transplant, and within a few hours we were waiting to see if she would make it through the night w/out extra support.  Dr. Mastropietro was in complete surprise the next morning that she'd made it through the night on her own.  Day 1 of many lessons my daughter has taught me; what it really means to be strong.

No 11 days since then, or before then have challenged me so much.  Nothing before or since has changed me, or my life so much and I imagine Jason feels the same.  The word 'heart' was added to my 'mom' and from that day on I will always be a 'heart mom'.  I didn't really grasp it until another mother sort of welcomed me into the club when her daughter was one of Charlotte's roommates.  I had thought she was kind of rough on the doctors, but from then on realized I really was part of the club she was discussing. Assuming Charlotte survived that is.

  Everyday since those days in the ICU have been gifts.  All different kinds of gifts, some, really hard gifts, but also many more empowering ones.  I still cry a lot from fear of what our future holds, or the loss of a child who while they aren't mine, are just as meaningful to me.  My mind still wanders to places of absolute dread, and then back again to absolute belief that I will not lose my daughter, all in a matter of two seconds.  I have been fiercely angry, fiercely terrified, fiercely guilty, fiercely overwhelmed with emotion, and fiercely sorry for my inadequacies.  This is lonely, extremely lonely, and by far the most soul searching experience of my life in trying to learn how to cope with the massiveness of her heart inside her little body, loving her so and the thought of losing her still.   

Charlotte being here is a gift!!  I appreciate every giggle, every smile, and every bear hug I get.  She is the BEST HUGGER on the planet.  I appreciate her bossing us around and growling at me when she doesn't like what I'm telling her to do.  I love watching her harass her big brother, and him giggling and enticing her to wrestle with him.  I adore the relationship she and Alaina have, it almost makes me cry everyday when Alaina asks her for a big hug when she walks in from school.  Partly because their age difference gives them a sisterly advantage, and partly because I hate to think what happens to our family if she is no longer here.  She is a puzzle piece that can not be replaced.   

Its like every moment of our lives is a still shot and I stand here and revel in it all.  I am so grateful for my husband, the friends, and my family who put up with me, love me still even with all of my intensity.

 I cried several times today thinking of that initial time in the ICU. 

 Jacob makes his first communion this weekend and 3 years ago Alaina was making her's.  Jason and I were literally only home for the ceremony while my aunt Jeanie held Charlotte in the hospital the entire time we were gone.  My cousins took Alaina to the art show where her art was on display, then got her ready for First Communion, bought her shoes and socks.  They did her hair.  My aunt Barbara cleaned the house for the party that we were supposed to have and got her a cake.  Jeanie struggled to try and get Charlotte to eat and stop the doctors from putting in a feeding tube while we were gone.  Alaina looked up at me halfway through what was supposed to be her big day and said "Mom I know you can't stop crying".  I tried so hard to hold myself together but I was a mess.  I NEVER could've kept Alaina and Jake stable through that experience without my family.  My dad was literally Mr. Mom for the kids, and my own Mom slept in a chair at the hospital in the middle of the night to give me a couple of hours of sleep while alternating helping my Dad take care of things at our house.  It must've been so rough on everyone, and they never complained (well not to me at least).  I am so blessed that I never left Charlotte's side other than those few hours. 

So tonight I just sit here again in awe and silence of how far we've come.  It is a struggle, and as most of you know I am still learning how to cope and handle it all.  School has definitely helped, Zumba and the eliptical are saviors, and many special people who probably think I have lost my mind most of the time but still let me into their lives, you all mean the world to me.  Thank you to all of you for keeping me sane (well mostly;), for smacking me around when I get too negative, and for continuing to love us even when we might not always be on top of loving you back:) 

Happy 3rd year survival baby girl!!  You, your sister and brother are the light of Dad and I's lives:)  Keep praying our Charley girl stays on the straight path!!   

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:)

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.