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.

Charley's 2:)

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 FINALLY had HER 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 ass, 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:)

Refresh

Recently I went back not only through this blog but back on my carepages as well and read through my old posts. This has kind of become like a diary and I felt just as embarassed going back through this as I have reading an old junior high diary, YUCK. All that drama;) I realized how the tone of soo many of my posts all revolve around the same themes: extreme worry, fear, sadness, life awareness, and overwhelming emotion to name a few. A lot of them sound the same. And ALL of them are true feelings that I go through everyday, every week, every month.

Charlotte has her heart cath this week and bloodwork to get done beforehand. In the shower today I was thinking about how much I dread these weeks, almost as much as precription refill time which is also on the TO DO list for this week. So needless to say it's going to be a rough week, emotionally and physically because all of this worry just wears me the hell out.

My birthday is Wednesday and Jason surprised me last Thursday with a weekend away for him and I to Chicago (my most favorite place). He has said several times that I got jipped out of my last two birthdays because when I turned 30 I was pregnant, and when I turned 31 I was in the nightmare of my life and nursing Charlotte who 100% refused bottles and only would nurse. It was such a HARD time for me, I was literally slugging through life everyday, and I suppose still am even now to some degree.

My posts revolve around all of that so much, and yet, there has been an incredible amount of joy, grace, and wonderment in my life during all of that time as well. Charlotte is sitting here next to me making an absolute mess with her yogurt and ate eggs, and cheese before this which she has not touched in weeks. When you have a child like her it becomes of the upmost importance to keep her eating anything and everything that is halfway good for her, and more importantly that keeps her weight up. So now that she is toddlerfied, her eating is becoming sporadic and picky which in turn drives US crazy. But the point is SHE IS STILL HERE. She is smiling and laughing. "No" is her favorite word and she mummbles things you don't want her to do or have until you say the word as you're trying to figure it out, and right when you say it she says "okay" all smiley. So she is probably the only 23 month old who eats popcorn (except Alaina of course), and suckers, and gets to watch a sleepy Yo Gabba Gabba episode before she heads to bed.

She messes up Jake's lego worlds constantly and runs when he hears her to escape him. As I'm writing she is sticking a lego man in her yogurt and proclaiming "ewww, gross". She draws on my walls with pens, markers, and pencils that she finds hidden in Alaina's room and consistently breaks a silly band a day of her brother or sisters. She jumps like a maniac on the bed or in her crib, and bosses us around constantly. She dances and sings NON STOP, loves to go down the slide and swing. She is loving and hilarious and her hair is always standing straight up and her clothes stained. Charlotte in turn, is doing EVERYTHING she should be. I am so thankful for that today and tomorrow I will worry about the rest.

So not everyday is consumed with sadness, or fear. Granted those are always underlying tones, most days are filled with amazement at Alaina who received her first letter grade this year and was so proud of not just getting 100%, but 102% for her first "A". Jacob who builds anything, and everything you could ask for out of Lego's, and who can come up with rationalizations for things out of this world. My husband who has the capability to recognize that these have been some tough years for me, and I can appreciate all that he has gone through as well. Charlotte who continues to chug on. I have incredible amounts of thankfullness for my friends and family who keep us above water with all of their help and love. I also feel much hope for our future, and that whatever happens on this crazy, scary, sad, fearful, spiritual, eye opening love fest of our life that we will come out okay.

Family Update

It appears Fall is upon us, and although some people are not too happy about it, I welcome it with excitement. Fall is definitely my favorite time of year, I can't wait to start hitting the apple orchards, and pumpkin picking. With every year Charley is here and growing it becomes even more fun, knowing this year she'll understand it a little more than last. Getting the kids dressed up for Halloween, and celebrating her second birthday. Just typing the words "second birthday" brings tears to my eyes. I love these times in our life, when the kids are young and as excited as we are to discover it all. Winter is my second favorite and I can't wait for her to see our house decorated and the Christmas tree, and presents. Taking the kids sledding, and ice skating on our mini rink. I revel in all of it:)

Alaina started fourth grade, and Jacob first on Wednesday. Alaina was super excited that she got the teacher she wanted, and her BFF Joanne is in her class. Jake although a little nervous had a great day, and has one of his favorite guys in his class too. There was only one hiccup with Alaina missing the bus after school. I watched the bus driver close the door and drive away thinking "what the heck"? Jake and Alaina's friend Claire were in a panic as Alaina and our neighbor Richard never got on the bus. So I checked my cell phone and sure enough the school had called, several students missed their busses so I went and picked her and Richard up. I could tell she thought about crying but held it together and was relieved to be rescued:)

Charlotte did very well too, I could tell when the kids got on the bus in the morning she was a little peeved about it but didn't cry. She did walk around the house several times throughout the day calling "aina" (aka Alaina), "akey" (aka Jakey). She was very happy to be dragged around though to the store and playing with me one on one. It's always amazing how once the school year starts everyone just jumps back into routines that we completely abandoned all summer, albeit the first few weeks are tiresome while adjusting.

Charley is hilarious, absolutely hilarious. I realize that all two year olds are quirky and funny little things but she by far is the silliest and most expressive of our three children. I liken her to a little boss walking around here, she forces Alaina and Jake to lay down on a pillow, she'll cover them up and sing "nap time, go to sleep" from a well loved Yo Gabba Gabba epsiode. If they are not around to be her puppets, any grandma/grandpa, mom/dad, babysitter will do. She can talk quite well and if you don't understand what she says, it is easily figured whether she's ticked off, frustrated, ecstatic or annoyed by the face she makes. She is very good at rolling her eyes at us, or furrowed brows to show her disdain for your idea that is not in agreeance with her own. She also will walk up behind you and hug your leg randomly, or run with open arms for a hug. She has to "ug" everyone before bed, and sings the "I love you" song from Barney constantly. I suppose like most toddlers she is a web of emotions whether up or down, and temper tantrums are plenty but she also has TONS of lovin to give and is complimented constantly on her happy demeanor.

Because Alaina and Jake are so much older she already does things most two year olds wouldn't do like using a normal swing instead of a baby seat one. She puts her baby to bed, and nap time;), or feeds it and pushes it around in her stroller. Just little things, like reading her books, doing puzzles, or shape sorting but to us they make her seem more mature. I will post some video soon of her swinging, singing, and reading with us. She is such a character and I am just soo incredibly blessed to have had this time to get to know her. No matter how much time we're given she will definitely not lack a voice in our family, or place in our hearts. Her face and attitude draw attention from everyone she meets.

I recently scheduled Charlotte's next heart catheterization. It will be on October 15th, it's first thing in the morning, I think 6:00am. I always get nervous of course just to see what the results are but as she gets older I worry about how she will react to it all. When the questions will start, I already see her wincing a little during her meds and daily aspirin. She is such a smartie pants I can almost hear by her facial expressions her asking "why the hell do I do this but aina and akey don't":) I know we'll handle it all and keep moving forward but it's hard, just HARD to not be able to plan for a future. To just truly live for today as much as possible.

I have been trying to be more even keeled, focusing on the positives, and not telling the whole world every detail, but even not writing for this last month and keeping my thoughts between myself and a journal have made me feel not quite myself. I explained to Jason that there have been times over the last two months where I felt like Ashley Judd's character in the Divine Secrets of the Ya Ya Sisterhood. Granted I am not an alcoholic or hooked on prescription meds but have been driving by myself and felt the urge to just keep going. To run away from life, even for a fews days. Sometimes it feels like someone else might handle my life better, be a better mother, a better wife, daughter or friend. Maybe someone else could get over herself and not mourn for every happy, sad, exciting, momentous event as if it might be the last.

I get upset that no one understands what this feels like to guide me through, and guilty to have these feelings when so many others have it worse off, or have lost their children. There is no one to really talk to and this blog is my way of talking without actually telling you. I'm too embarassed to actually speak these things in person. To all of you who see me on a regular basis, I'm sure I talk about it constantly, sometimes I'll be with friends or family and think "why can't I just shut the hell up", "why does every little thing have to relate to MY life now"? I know people are going to get sick of it, and yet even with how much I talk about it, just so all of you know and can maybe forgive me, I am not REALLY talking about it. It's simple statements to get me by but this is where I write all of my real, true and ridiculous, overanalytic thoughts. In turn I hope it tells what really goes on in my crazy head, with a child's disease like this. I am trying to be normal, I really am.

Your feedback and comments keep me going, and I guess my ego needs those things. I'm sorry I can't be stronger, and muddle through privately.. I hope everyone knows I think of you all often, will get our thank you notes out soon from the fundraiser, and pray for you everyday.