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!
My Charley Girl
Tuesday, September 6, 2011
Monday, September 5, 2011
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:)
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:)
Wednesday, July 6, 2011
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.
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.
Tuesday, June 28, 2011
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;)
Tuesday, June 7, 2011
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.
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.
Sunday, April 24, 2011
April 24, 2011
Happy Easter everyone,
I hope all of you celebrated with family or friends and for those of you in Michigan that you were able to get out and enjoy the warmer temps and sunshine this weekend. This date is significant in my mind, strange how some dates you will always remember no matter how much time passes. The ones that aren't significant with your graduation, or wedding, or a birthdate but a date where something so profound happened to you that it is forever etched in your memory. This is one of those for me because today marks the two year anniversary of Charlotte surviving dilated cardiomyopathy and her heart failure. The time moved so incredibly slow that first night two years ago and at this point I'm not even sure we were up in the ICU yet, but I think we had just arrived and were finding out the nightmarish news and prognosis of our beautiful, smiley baby girl who had no idea how sick she ACTUALLY was.
This weekend we were lucky enough to have my brothers home from Chicago and celebrated Saturday with my in laws. It was a gorgeous day, the kids got kites from grandma and grandpa Walsh and it was so nice to walk to the park and watch them fly. As in most days and throughout their passing I notice things related to Charlotte's illness, and sometimes can't brush them off immediately. I pushed her in the stroller to the park, and while my niece Genna (also 2) was hightailing it football field lengths on foot without stopping Charlotte barely walked around for ten minutes before proclaiming that "I tired", "I cold Momma". The call signs that it's time for a break, that she can't keep up. Along with "I watch TV", or "I lay down".
While Alaina, Jake, Alexis flew their kites and Genna walked a mile, Charlotte sat in her stroller bundled in her blanket and although no one else would've known the wiser "I know" she just told me "hey Mom, I'm tired out". These are the daily reminders that your child is sick, the reasons that you can not forget and go on about your life as if all is okay and well. I constantly worry about overdoing it, about pushing her too far, and yet she continues to ask for what she needs, and do with what she can, and NEVER COMPLAINS about it (yet;). She sat there cheering the kids on from her throne, smiling and as excited as if she herself were flying them, controlling their dips and waves, and steady glides.
And I sat there taking pictures of my nieces and children, brothers, sister, and father in law thinking how lucky we are to have each other. To have a day where the weather was beautiful, the wind was perfect and we were there to enjoy each others company even if we didn't say a lot. I haven't felt that at peace in awhile, it's been a long while. My life feels like that kite with dips so low that it feels it might hit the ground, and other times soaring so high that it might touch heaven for a moment. It's hard to live life on these winds of shown uncertainty.
Today we celebrated with my family, my aunts and uncles, cousins and my grandparents in their 80's. Again just standing still for a moment in my own silence listening to the sounds of the house, to the kids going crazy outside. My aunts and uncles talking about their lives, what the kids are up to. Meet the Robinsons in the family room (one of my all time favorite movies). I so often find myself just standing in a place where everyone else is moving and all I can concentrate on is the noise, the joyful, loving noise that we all put forth. The noise that people just don't stop and listen to anymore. I know I noticed it all before this happened to Charlotte, and therefore to us but now it is so prevalent in my life. I'm struggling with all of the wind gusts, rocking us around and sometimes it is so overwhelming I just want to smash on the pavement in a pile of tattered brightly colored fabric. Then at other times it's like perfect silence, I'm just gliding along in beautiful calm where I feel like heaven is watching me whispering that it's all going to be all right.
I am so proud of Charlotte, and Alaina and Jake for who they are. That Charlotte can just sit there watching all of her fellow little people running amuck and not be able to keep up with them but still cheers them on with a smile on her face and joy in her voice as she yells with them. She inspires me. I am so proud that I have family who never concentrates on how sick she is but can take her for a walk to the swings and push her for an hour without even thinking how strange it is that she doesn't request getting off to run around. Or who will go retrieve a ball for her a hundred times not realizing that she can't continuously do it herself all afternoon.
I am so proud of my husband for CONSTANTLY handling all of this life with its incessant wind. For always fighting right along with me to hold this weaved fabric of our lives steady when the gusts pick up. I know it is not easy for him, just as it is not easy for me. I never expected to be challenged in this way, to question every aspect of my being. I know that I am proud to have all of our loved ones and friends who put up with it, who stay even though it's not always a picnic to know us. Seeing those brightly colored kites flying high reminded me so much of how our lives are entwined within each others. How each person or tiny action reflects a strand of thread and as a whole we help keep each other soaring.
I love all of you and will forever be grateful for all that you give me:)
XOXO
Courtney
I hope all of you celebrated with family or friends and for those of you in Michigan that you were able to get out and enjoy the warmer temps and sunshine this weekend. This date is significant in my mind, strange how some dates you will always remember no matter how much time passes. The ones that aren't significant with your graduation, or wedding, or a birthdate but a date where something so profound happened to you that it is forever etched in your memory. This is one of those for me because today marks the two year anniversary of Charlotte surviving dilated cardiomyopathy and her heart failure. The time moved so incredibly slow that first night two years ago and at this point I'm not even sure we were up in the ICU yet, but I think we had just arrived and were finding out the nightmarish news and prognosis of our beautiful, smiley baby girl who had no idea how sick she ACTUALLY was.
This weekend we were lucky enough to have my brothers home from Chicago and celebrated Saturday with my in laws. It was a gorgeous day, the kids got kites from grandma and grandpa Walsh and it was so nice to walk to the park and watch them fly. As in most days and throughout their passing I notice things related to Charlotte's illness, and sometimes can't brush them off immediately. I pushed her in the stroller to the park, and while my niece Genna (also 2) was hightailing it football field lengths on foot without stopping Charlotte barely walked around for ten minutes before proclaiming that "I tired", "I cold Momma". The call signs that it's time for a break, that she can't keep up. Along with "I watch TV", or "I lay down".
While Alaina, Jake, Alexis flew their kites and Genna walked a mile, Charlotte sat in her stroller bundled in her blanket and although no one else would've known the wiser "I know" she just told me "hey Mom, I'm tired out". These are the daily reminders that your child is sick, the reasons that you can not forget and go on about your life as if all is okay and well. I constantly worry about overdoing it, about pushing her too far, and yet she continues to ask for what she needs, and do with what she can, and NEVER COMPLAINS about it (yet;). She sat there cheering the kids on from her throne, smiling and as excited as if she herself were flying them, controlling their dips and waves, and steady glides.
And I sat there taking pictures of my nieces and children, brothers, sister, and father in law thinking how lucky we are to have each other. To have a day where the weather was beautiful, the wind was perfect and we were there to enjoy each others company even if we didn't say a lot. I haven't felt that at peace in awhile, it's been a long while. My life feels like that kite with dips so low that it feels it might hit the ground, and other times soaring so high that it might touch heaven for a moment. It's hard to live life on these winds of shown uncertainty.
Today we celebrated with my family, my aunts and uncles, cousins and my grandparents in their 80's. Again just standing still for a moment in my own silence listening to the sounds of the house, to the kids going crazy outside. My aunts and uncles talking about their lives, what the kids are up to. Meet the Robinsons in the family room (one of my all time favorite movies). I so often find myself just standing in a place where everyone else is moving and all I can concentrate on is the noise, the joyful, loving noise that we all put forth. The noise that people just don't stop and listen to anymore. I know I noticed it all before this happened to Charlotte, and therefore to us but now it is so prevalent in my life. I'm struggling with all of the wind gusts, rocking us around and sometimes it is so overwhelming I just want to smash on the pavement in a pile of tattered brightly colored fabric. Then at other times it's like perfect silence, I'm just gliding along in beautiful calm where I feel like heaven is watching me whispering that it's all going to be all right.
I am so proud of Charlotte, and Alaina and Jake for who they are. That Charlotte can just sit there watching all of her fellow little people running amuck and not be able to keep up with them but still cheers them on with a smile on her face and joy in her voice as she yells with them. She inspires me. I am so proud that I have family who never concentrates on how sick she is but can take her for a walk to the swings and push her for an hour without even thinking how strange it is that she doesn't request getting off to run around. Or who will go retrieve a ball for her a hundred times not realizing that she can't continuously do it herself all afternoon.
I am so proud of my husband for CONSTANTLY handling all of this life with its incessant wind. For always fighting right along with me to hold this weaved fabric of our lives steady when the gusts pick up. I know it is not easy for him, just as it is not easy for me. I never expected to be challenged in this way, to question every aspect of my being. I know that I am proud to have all of our loved ones and friends who put up with it, who stay even though it's not always a picnic to know us. Seeing those brightly colored kites flying high reminded me so much of how our lives are entwined within each others. How each person or tiny action reflects a strand of thread and as a whole we help keep each other soaring.
I love all of you and will forever be grateful for all that you give me:)
XOXO
Courtney
Tuesday, April 12, 2011
April 13, 2011 #1
Hello again,
My mom came up last night and I was able to go to the Ronald McDonald house after a Bigby run for tea around midnight, and slept until 9:30 before waking up in a panic when I saw the time thinking I had missed a zillion phone calls from Mom, or the nurse. I was in shock when my phone was empty of call notifications and got up and out of there immediately because I didn't want to miss morning rounds. Mom said Charlotte slept all night too and was in WAY better spirits when I came in this morning. She is still not 100% and I'm still concerned by her lack of eating and small amount of drinking. I can't help but go over and over the things that maybe we missed just in case. It's a curse I tell you, however, it seems the kids never eat or drink good when hospitalized so I'll keep an eye on her over the next day or so and see how she does. Since getting home she's drank some milk and ate a tiny bit of Mrs. Grass soup. I hope her appetite gets better tomorrow.
She slept on the way home from the hospital and as I was talking to my mother in law I kept watching her in the rearview concerned about her color, and touching her hands to make sure they were warm. It is that same feeling I get everytime when in truth, I just want to get the hell out of there after the first night but when they finally do give us the "all clear" I am terrified of not having them to help me. When she woke up in the driveway she cheered "WE'RE HOME" so I know she is happy to be back.
I vacumned the house, cleaned the counters, folded blankets, gave her a bath and started the laundry within the first hour and a half since we were home so I know I am happy to be home too. Its weird the rituals we go through after being away only a short time, the first thing Charlotte wanted was Just Dance 2 on the Wii:) She of course was too exhausted to dance but she sat on the couch and watched the dancer and listened to the music. The next biggest excitement was her bath which she was really excited for but again was so exhausted she just whined and complained through most of it. She finally laid on the little couch with her blankies and watched Kipper until she fell asleep.
Jake came home and seemed happy to see us, he and I chatted about how things were and I begged for a hundred hugs from my guy. He is always the same each time we go through something with Charlotte, he acts totally unaffected and yet his behavior tells a completely different story. He gets more aggresive than usual, some good bear hugs reassured him I think and he seemed better after. Alaina is never very open with how she's feeling either and I know they had to be scared to death in the ED with me all day Sunday. I watched Alaina checking Charlotte's fingers and toes in the car on the way down and yet when we talked about it before they left she said she was fine. I went to pick her up from her drama club this evening thinking she'd be sooo excited to see me but she was just like "what's up mom" like it was any other day. Once I pulled in the driveway I think it hit her because she stopped, looked at me and said "is Charley home?" and when I said yes went running into the house. The only time I heard Charlotte laugh in three days was at her big sister/brother tonight.
The similarities during this stay compared to our first stay almost exactly two years ago are strange. As then Jason had just started his new job literally weeks before our two week stint in the ICU, and this time he started a new job on Monday. Along with that I noticed today that Spring happened while we were away. It was eerie feeling the Spring air today and coming home to buds on my trees and my flowers blooming outside. It felt EXACTLY the same as it did then. Regardless she is home now, safe in her own bed, with Mr. Turtle shining his bright stars on her ceiling (great gift Aunt Nancy:) and Violet the dog sang her to sleep. I really do appreciate all of your emails, texts, facebook comments, phone calls, and comments on these blogs. It may seem ridiculous but just knowing people are there listening (well reading) and caring really lifts my spirits everyday.
I had this wonderful conversation with the chaplain at the hospital I want to write about but it is one of my emotional rants so I will post it seperately for those interested in my rants. That way those of you who just want to know how Charlotte is can skip the second one:)
Goodnight everyone
-C-
My mom came up last night and I was able to go to the Ronald McDonald house after a Bigby run for tea around midnight, and slept until 9:30 before waking up in a panic when I saw the time thinking I had missed a zillion phone calls from Mom, or the nurse. I was in shock when my phone was empty of call notifications and got up and out of there immediately because I didn't want to miss morning rounds. Mom said Charlotte slept all night too and was in WAY better spirits when I came in this morning. She is still not 100% and I'm still concerned by her lack of eating and small amount of drinking. I can't help but go over and over the things that maybe we missed just in case. It's a curse I tell you, however, it seems the kids never eat or drink good when hospitalized so I'll keep an eye on her over the next day or so and see how she does. Since getting home she's drank some milk and ate a tiny bit of Mrs. Grass soup. I hope her appetite gets better tomorrow.
She slept on the way home from the hospital and as I was talking to my mother in law I kept watching her in the rearview concerned about her color, and touching her hands to make sure they were warm. It is that same feeling I get everytime when in truth, I just want to get the hell out of there after the first night but when they finally do give us the "all clear" I am terrified of not having them to help me. When she woke up in the driveway she cheered "WE'RE HOME" so I know she is happy to be back.
I vacumned the house, cleaned the counters, folded blankets, gave her a bath and started the laundry within the first hour and a half since we were home so I know I am happy to be home too. Its weird the rituals we go through after being away only a short time, the first thing Charlotte wanted was Just Dance 2 on the Wii:) She of course was too exhausted to dance but she sat on the couch and watched the dancer and listened to the music. The next biggest excitement was her bath which she was really excited for but again was so exhausted she just whined and complained through most of it. She finally laid on the little couch with her blankies and watched Kipper until she fell asleep.
Jake came home and seemed happy to see us, he and I chatted about how things were and I begged for a hundred hugs from my guy. He is always the same each time we go through something with Charlotte, he acts totally unaffected and yet his behavior tells a completely different story. He gets more aggresive than usual, some good bear hugs reassured him I think and he seemed better after. Alaina is never very open with how she's feeling either and I know they had to be scared to death in the ED with me all day Sunday. I watched Alaina checking Charlotte's fingers and toes in the car on the way down and yet when we talked about it before they left she said she was fine. I went to pick her up from her drama club this evening thinking she'd be sooo excited to see me but she was just like "what's up mom" like it was any other day. Once I pulled in the driveway I think it hit her because she stopped, looked at me and said "is Charley home?" and when I said yes went running into the house. The only time I heard Charlotte laugh in three days was at her big sister/brother tonight.
The similarities during this stay compared to our first stay almost exactly two years ago are strange. As then Jason had just started his new job literally weeks before our two week stint in the ICU, and this time he started a new job on Monday. Along with that I noticed today that Spring happened while we were away. It was eerie feeling the Spring air today and coming home to buds on my trees and my flowers blooming outside. It felt EXACTLY the same as it did then. Regardless she is home now, safe in her own bed, with Mr. Turtle shining his bright stars on her ceiling (great gift Aunt Nancy:) and Violet the dog sang her to sleep. I really do appreciate all of your emails, texts, facebook comments, phone calls, and comments on these blogs. It may seem ridiculous but just knowing people are there listening (well reading) and caring really lifts my spirits everyday.
I had this wonderful conversation with the chaplain at the hospital I want to write about but it is one of my emotional rants so I will post it seperately for those interested in my rants. That way those of you who just want to know how Charlotte is can skip the second one:)
Goodnight everyone
-C-
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