The sun was shining yesterday, and today in the morning. I have been holding out for sunshine so much that I bundled up and sat freezing out on my deck yesterday doing homework in hopes it might save me. I'm not just using "save me" as a metaphor, I have been drowning in shades of grey. There has been no blue, no warmth, just cold grey. This has been a rough winter, rougher than the previous one. Possibly I felt last winter that it was okay to still be sad, or feel depressed because I was still new at this cardiomyopathy stuff. After such a good summer, fall and early winter I was doing great, enjoying school and spending time with the kids, noticing things that I was doing that I hadn't since Charlottes diagnosis. Granted there are always bumps on my emotional road, but nothing like lately. I'm not sure why I've been led off the road and down this path to where I've been, but it has felt LONG, with a lake that tangles you in the branches that line it and push you down. There have been hikers to try and "save me" but this has required grabbing branches to try and climb back up on my own, and it has been unlike any sadness, or anger I've experienced before. It has faded some with color returning occasionally with a night out here with friends, a conversation that intrigues me or the daily routine of having Jason, Brandon and the kids with me, but as soon as they left me in silence I was alone and it's return would take over and I'd allow it to swallow me.
I read an article recently about parents of premature and chronically ill children, that it is common to suffer post traumatic stress disorder any amount of time after watching a child in an ICU for any length of time. I don't know if this possibly could have been reality, or still is but hospitals have shades of grey everywhere. Some shades darker or lighter depending on the situation a family is facing. I remember feeling like blackness in that ICU somedays, and with all that I don't know, I need to write about everything that has gone down to find that last branch to possibly heal my cold skin, and open cuts/scratches. To bring that color back that has been missing for quite awhile now.
This task is so daunting, even with a child who appears SO incredibly well on the outside, just knowing all the "possibilties", the "what if's" and how it affects everyone in the family is a task I pray that I master, I have to master, if we're going to survive this.. Being me sometimes I feel that you have to go to the deepest depths to come out with a better understanding of how to survive them for next time, if there is to ever be a next time. Maybe this journey over the last few months has been part of that, I just hope the lake is getting more shallow, temperature warming, the color returning.
Last week the CCF support group lost three children in one week, without a doubt I hit bottom. The murky, lonely, dark bottom. Some think I need to pull myself away from the group to survive my own life and I agree that I am invested heavily in these families. I don't however think I could ever turn away from them now, not entirely. They mean too much to me, they are formidably the ONLY people who understand my life now. It's true that every once in awhile we lose a child (rare that it would be three), however, according to everyone whose been comforting me for so long now, anyone, can lose a child at anytime. The problem that is failed to be noticed is that for us it actually happens, it's not just a possibility, it's a REAL reality. No matter how much I pull myself out of these small whirlpools that spin me around sometimes, they also feed me with love, with knowledge, with asking nothing in return except to be a feeder to their whirlpools too. It doesn't matter the level of hurt a family is feeling, no one judges there whether I have any right to be as upset as I am because my daughter is doing okay right now. They just know that whatever stage we're at, we're all there for each other battling the uncertainties, the same branches. So I've asked to get one email a day that includes everything, instead of 50 individual ones from the group. I will open myself to the idea that maybe it's time for someone uninvolved to listen to me, to allow me to say all of the stuff that I want to write here but don't because it'd be weird, and I'm weird enough to you all as I already am :)
Most of the time, in fact 95% of the time the stories we share are of hope for new discoveries, triumphs a child who had no hope of overcame. We share doctors that are skilled in certain areas we need, and without a doubt there is ALWAYS an answer when you're in a dark hour. I admit I might have to take a step back and FOCUS on the LIFE that IS in front of me until I am so seasoned at this that I can be support for others. A friend recently said something that although it's tough to accept, is also completely true. She said that "I've only been at this under two years, it's still new and it's still fresh". In the scheme of Charlotte's lifetime, this is such a small amount of time when it seems like SO long ago sometimes. Often I start to sink deeper because I feel so weak to it still, and I hate feeling weak, which then makes me miss another branch and I fall deeper still. She said I am still "a mom in NEED, a mom of a sick child", it reminded me that maybe I'm not ready to be the ultimate cardiomyopathy conquerer, fundraiser champion, counselor to all. I SO want to be but maybe I just need to take it one branch at a time. I don't want my husband paying for it's cost anymore, I've already given enough of my life to this disease. I don't want my children paying for it's cost because they witness my frustration enough on a daily basis.
So today I will begin to grab one by one until I am fully released from this grey lake, and I will with each step TRY to walk the path back, a little closer to acceptance, forgiveness, regained faith, and each bit of my personality and will power that I have allowed lost these last few months.
I will also call someone bigger than myself to help:)
Thanks everyone for your love and support lately, even when I want to be angry at you for telling me what to do, or not do. This won't be the last time you see me cry, or be angry, Charlotte has a LONG way to go in this lifetime.
XOXO
Courtney
My Charley Girl
Tuesday, March 15, 2011
Thursday, March 3, 2011
Clinic Visit
Hi everyone,
I just wanted to let you know how Charlotte's cardiology visit went today. For the first time EVER in two years the parking garage was full at the hospital and valet was backed up like crazy. I think it's pretty ridiculous that we have to pay $2.50 just to get into the parking garage in the first place but then to have to pay the $4.00 for valet when THERE IS NO WHERE ELSE TO PARK, is just plain IRRITATING. I was pumped because I arrived 20 minutes EARLY, yes 20 and we all know that Courtney Smith arriving anywhere early is a miracle in itself. Well due to the parking hassle I ended up being 15 minutes LATE. If I had been my old self the head of Children's Hospital would've been standing outside in the valet lane giving everyone their $4.00 back. Once I finally got upstairs to cardiology the girl at the front desk said they'd been hearing that a lot lately and that we should really complain to make them do something about it. So I might put in a call or email to someone just to add to the "fix the issue" campaign but I am ultra proud of myself as I did not swear once, or sigh, or want to punch anyone. The way I've been feeling lately I accomplished a great feat in that today;)
The one thing I love about our cardiology office is that no one is ever in a hurry to do anything. I think when you are in the medicine business you learn how to be EXTREMELY patient and I could've been an hour late and no one would've cared.. They are always laid back and just go with the flow, I could learn a few things from them;)
It never ceases to amaze me how calm and collected I feel going there and yet my stomach is ALWAYS a mess. Today on the way as I was trying to calm my own, Charlotte said "my tummy hurts" and all I could think of was how she might inherit the anxious stomach which would really suck because she has LOTS of nerve racking stuff to go through yet..
I had been preparing her for days now in hopes that she would cooperate a little better for her echo than she did last time. I showed her video's of other little kids getting them, and how good they behaved only to hear her several "swiper no swipping's" and "no, no I not's". It turned out that they didn't need one this time which was good for her, bad for me. I like having them because I know she at least hasn't gotten any worse. Unfortunately my preparing her might have backfired because she was terrified of everything that she normally does really well at. Once she realized it wasn't the echo she'd calm down. Not sure how I'm going to approach it next time, but maybe I shouldn't try so hard to make her accept it.
Regardless she hasn't seemed any different and keeps chugging away so I assume and Dr. L'ecuyer confirmed that she appears unchanged. We talked about preschool a little and he doesn't feel that she needs any restrictions other than the staff and teachers allowing her to regulate her own activity level. I'm not sure how I should handle that, I've been reading about doing a 504 but he's not sure it is needed for preschool. I'll talk to the preschool program about it when I sign her up in two weeks. We discussed genetic testing and we can do that anytime, it's just up to me to say the word. I keep talking myself out of it which is ridiculous on several fronts. If I do it and they don't find any gene mutation that caused her cardiomyopathy it won't change anything we just continue on as we are now, and even if they did find something we would continue on as we are now. However, if we did find a mutation, all of us could also be tested for that mutation and it may protect other family members from experiencing what Charlotte has.
As you can see whenever I leave appointments I almost always end up with more questions than what I came with. This is the story of this life, questions, answers, questions.
He did outfit her with a 24 hour holter which has five leads attached to a little box on a string she has to wear around her neck. At first after she got over being ticked about the "stickers" as I call them, she said "oooo a necklace" when we put the box on. We've been home for a few hours now, (she likes all clothes off at home) and therefore the box allure is starting to wear off. We've had three attempts to remove the box so far but all in all she's playing and just following her normal routine. We'll see how bedtime goes:)
Dr. L'ecuyer told me today that one of his patients who remained stable like Charlotte for four years declined recently and required transplant. We again discussed how variable the disease is, and just because that is another childs story doesn't mean it will be Charlotte's. Another nuance of our new life, we just don't know what her story will be. For all who think I should be moving on, over my fears, just living my life normally, that is most what you misunderstand. A parents playbook consists of raising your children to be their best, elementary school-jr. high-high school and college. Then it's work, possibly marriage, and grandchildren along with all of the glorious, happy, dirty, messy, emotional in between. A parent of a child with a chronic life threatening illness doesn't get that playbook. Our playbook was shredded, it has no plays, it is yet to be determined. Does it mean we won't enjoy IT, whatever "IT" is? No of course not, but living this way is hard.
He was funny because he has another doctor shadowing him and was sure to explain to her that he tells me things she might not hear him tell others. Because, as he put it "Mrs. Smith wants to know EVERYTHING", which of course gave a good laugh. Driving home before I made my phone calls, I thought about his comment, which is totally hilarious and true. I do want to know EVERYTHING. I want to obsess over it, it is my survival mechanism.
I may have to write more about that thought later, because I have been feeling very pent up lately and have so many thoughts to let out. However my thoughts of late aren't all that pleasant, and anger has been at the top of my list so for now I'm sending this off so you know how it went today.
Thanks and Love,
Courtney
I just wanted to let you know how Charlotte's cardiology visit went today. For the first time EVER in two years the parking garage was full at the hospital and valet was backed up like crazy. I think it's pretty ridiculous that we have to pay $2.50 just to get into the parking garage in the first place but then to have to pay the $4.00 for valet when THERE IS NO WHERE ELSE TO PARK, is just plain IRRITATING. I was pumped because I arrived 20 minutes EARLY, yes 20 and we all know that Courtney Smith arriving anywhere early is a miracle in itself. Well due to the parking hassle I ended up being 15 minutes LATE. If I had been my old self the head of Children's Hospital would've been standing outside in the valet lane giving everyone their $4.00 back. Once I finally got upstairs to cardiology the girl at the front desk said they'd been hearing that a lot lately and that we should really complain to make them do something about it. So I might put in a call or email to someone just to add to the "fix the issue" campaign but I am ultra proud of myself as I did not swear once, or sigh, or want to punch anyone. The way I've been feeling lately I accomplished a great feat in that today;)
The one thing I love about our cardiology office is that no one is ever in a hurry to do anything. I think when you are in the medicine business you learn how to be EXTREMELY patient and I could've been an hour late and no one would've cared.. They are always laid back and just go with the flow, I could learn a few things from them;)
It never ceases to amaze me how calm and collected I feel going there and yet my stomach is ALWAYS a mess. Today on the way as I was trying to calm my own, Charlotte said "my tummy hurts" and all I could think of was how she might inherit the anxious stomach which would really suck because she has LOTS of nerve racking stuff to go through yet..
I had been preparing her for days now in hopes that she would cooperate a little better for her echo than she did last time. I showed her video's of other little kids getting them, and how good they behaved only to hear her several "swiper no swipping's" and "no, no I not's". It turned out that they didn't need one this time which was good for her, bad for me. I like having them because I know she at least hasn't gotten any worse. Unfortunately my preparing her might have backfired because she was terrified of everything that she normally does really well at. Once she realized it wasn't the echo she'd calm down. Not sure how I'm going to approach it next time, but maybe I shouldn't try so hard to make her accept it.
Regardless she hasn't seemed any different and keeps chugging away so I assume and Dr. L'ecuyer confirmed that she appears unchanged. We talked about preschool a little and he doesn't feel that she needs any restrictions other than the staff and teachers allowing her to regulate her own activity level. I'm not sure how I should handle that, I've been reading about doing a 504 but he's not sure it is needed for preschool. I'll talk to the preschool program about it when I sign her up in two weeks. We discussed genetic testing and we can do that anytime, it's just up to me to say the word. I keep talking myself out of it which is ridiculous on several fronts. If I do it and they don't find any gene mutation that caused her cardiomyopathy it won't change anything we just continue on as we are now, and even if they did find something we would continue on as we are now. However, if we did find a mutation, all of us could also be tested for that mutation and it may protect other family members from experiencing what Charlotte has.
As you can see whenever I leave appointments I almost always end up with more questions than what I came with. This is the story of this life, questions, answers, questions.
He did outfit her with a 24 hour holter which has five leads attached to a little box on a string she has to wear around her neck. At first after she got over being ticked about the "stickers" as I call them, she said "oooo a necklace" when we put the box on. We've been home for a few hours now, (she likes all clothes off at home) and therefore the box allure is starting to wear off. We've had three attempts to remove the box so far but all in all she's playing and just following her normal routine. We'll see how bedtime goes:)
Dr. L'ecuyer told me today that one of his patients who remained stable like Charlotte for four years declined recently and required transplant. We again discussed how variable the disease is, and just because that is another childs story doesn't mean it will be Charlotte's. Another nuance of our new life, we just don't know what her story will be. For all who think I should be moving on, over my fears, just living my life normally, that is most what you misunderstand. A parents playbook consists of raising your children to be their best, elementary school-jr. high-high school and college. Then it's work, possibly marriage, and grandchildren along with all of the glorious, happy, dirty, messy, emotional in between. A parent of a child with a chronic life threatening illness doesn't get that playbook. Our playbook was shredded, it has no plays, it is yet to be determined. Does it mean we won't enjoy IT, whatever "IT" is? No of course not, but living this way is hard.
He was funny because he has another doctor shadowing him and was sure to explain to her that he tells me things she might not hear him tell others. Because, as he put it "Mrs. Smith wants to know EVERYTHING", which of course gave a good laugh. Driving home before I made my phone calls, I thought about his comment, which is totally hilarious and true. I do want to know EVERYTHING. I want to obsess over it, it is my survival mechanism.
I may have to write more about that thought later, because I have been feeling very pent up lately and have so many thoughts to let out. However my thoughts of late aren't all that pleasant, and anger has been at the top of my list so for now I'm sending this off so you know how it went today.
Thanks and Love,
Courtney
Thursday, January 20, 2011
Complacency
As most of you are well aware every month when it is time to refill Charlotte's meds I almost always end up crying on the way home, or parked in my space outside the hospital. There is always some small frustration that sets me off and reminds me of all of this messiness; how much dealing with insurance companies, receiving bills for $700, safety of the meds I am picking up, seeing the other families/children hurting is just worlds away from where my life was two years ago. I hate it everytime, I've hated it for almost two years. It's like seeing a picture of someone you loved who has died and mourning them all over again each time. I know I still have a long way to go in accepting this reality of ours, in just finding a way to be okay with it. My psychology teachers advice of "accepting it all", the only way she say's our children can deal with chronic illness such as this is for us to accept it, all of it, the meds, the tests, the pokes, the pain, and even possibly their death. I'm not sure I can accept it all and be okay with it, but my hope is someday I will fake it like an oscar winning actress. Right now I do a good job, walk around with a smile whether I'm happy or breaking inside on that particular day. I really expected to be healed by now, to have dealt with it all and gone back to my happy go lucky life. My 100% belief that everything is "gonna be all right" as the song goes.
I finally made the jump to find a pharmacy closer to my home. I took a day, researched, called around, got prices etc.. No one made me feel as safe as I felt at Childrens pharmacy no matter how much their customer service sucks. I was advised however after starting a mini peaceful protest in their lobby last time that they are just too busy of a pharmacy, can't manage to have good customer service and that I should try and find a specialty pharmacy closer to my home so they wouldn't have to inconvenience me for one hour drives anymore.. I left in shock, and super ticked off, the line of people behind me jumped on my bandwagon. Regardless the search was on and of course when I talked to our nurse Jessica she immediately had a wonderful pharmacy that a lot of their tranplant patients use. I have officially learned my lesson, "always call Dr. L'ecuyer's office first for advice".. Duh..
Anyhow the pharmacist they recommended seems awesome so far. He is friendly, very customer oriented. He called me to get all of our information and said he would get all of our meds to be delivered on the same day. DELIVERED people, no driving, no waiting in line. Easy, he made it incredibly easy. Eric the pharmacist might become my new best friend:)
In going through this easiness I have also been going through a terrifying feeling. I think one of the main reasons I stayed in my misery with our previous pharmacy for so long is because I want the pain in the ass, cry in my car experience. As much as I hate it, having things easy has become incredibly "scary". I fear being complacent, I fear that Charley's meds, doctors appointments, and routine will become so "routine" that I won't catch something catastrophic. That "when" or "if" we find ourselves back in a life threatening situation, I will have forgotten how to survive it.
On New Years Eve we had a situation, something I have not been able to get off my mind. Jason and I were in the middle of a party and all of a sudden I had to completely switch gears and call the on call cardiologist who advised us, my parents, and Charlotte to come in for observation. We left 20 people partying at our house while we were swept back into hospital mode. I always think of Jason and Jake when they come home from work/school. They are not good at switching gears, and that's what all of this is. It's going from your LIFE to SURVIVAL in a matter of minutes. It's getting there on time, it's understanding all of the information being thrown at you, it's watching your most precious beings tortured with needles and wires. We were lucky and en route received a call back that we were in the clear and that if she wasn't experiencing any symptoms we could return to our nights. So we went home to our house full of people and I drank, cranked up the tunes and did the only thing that really calms me, danced. Along with calling to check on Charlotte every hour until 4:30 in the morning. For four days after I stayed up almost all night checking her heart and lung sounds, worried until I finally emailed Dr. L'ecuyer to tell me I could stop worrying. I knew she was fine but it's survival, I hadn't checked her sounds or counted rates in months, and here I was switching gears back three, four months ago in a matter of a day. It's a ton to deal with in a short amount of time, and if I get out of practice my fear is I will forget how to survive. I will crumble. Complacency will kill me.
I finally made the jump to find a pharmacy closer to my home. I took a day, researched, called around, got prices etc.. No one made me feel as safe as I felt at Childrens pharmacy no matter how much their customer service sucks. I was advised however after starting a mini peaceful protest in their lobby last time that they are just too busy of a pharmacy, can't manage to have good customer service and that I should try and find a specialty pharmacy closer to my home so they wouldn't have to inconvenience me for one hour drives anymore.. I left in shock, and super ticked off, the line of people behind me jumped on my bandwagon. Regardless the search was on and of course when I talked to our nurse Jessica she immediately had a wonderful pharmacy that a lot of their tranplant patients use. I have officially learned my lesson, "always call Dr. L'ecuyer's office first for advice".. Duh..
Anyhow the pharmacist they recommended seems awesome so far. He is friendly, very customer oriented. He called me to get all of our information and said he would get all of our meds to be delivered on the same day. DELIVERED people, no driving, no waiting in line. Easy, he made it incredibly easy. Eric the pharmacist might become my new best friend:)
In going through this easiness I have also been going through a terrifying feeling. I think one of the main reasons I stayed in my misery with our previous pharmacy for so long is because I want the pain in the ass, cry in my car experience. As much as I hate it, having things easy has become incredibly "scary". I fear being complacent, I fear that Charley's meds, doctors appointments, and routine will become so "routine" that I won't catch something catastrophic. That "when" or "if" we find ourselves back in a life threatening situation, I will have forgotten how to survive it.
On New Years Eve we had a situation, something I have not been able to get off my mind. Jason and I were in the middle of a party and all of a sudden I had to completely switch gears and call the on call cardiologist who advised us, my parents, and Charlotte to come in for observation. We left 20 people partying at our house while we were swept back into hospital mode. I always think of Jason and Jake when they come home from work/school. They are not good at switching gears, and that's what all of this is. It's going from your LIFE to SURVIVAL in a matter of minutes. It's getting there on time, it's understanding all of the information being thrown at you, it's watching your most precious beings tortured with needles and wires. We were lucky and en route received a call back that we were in the clear and that if she wasn't experiencing any symptoms we could return to our nights. So we went home to our house full of people and I drank, cranked up the tunes and did the only thing that really calms me, danced. Along with calling to check on Charlotte every hour until 4:30 in the morning. For four days after I stayed up almost all night checking her heart and lung sounds, worried until I finally emailed Dr. L'ecuyer to tell me I could stop worrying. I knew she was fine but it's survival, I hadn't checked her sounds or counted rates in months, and here I was switching gears back three, four months ago in a matter of a day. It's a ton to deal with in a short amount of time, and if I get out of practice my fear is I will forget how to survive. I will crumble. Complacency will kill me.
Tuesday, November 23, 2010
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:)
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:)
Wednesday, November 10, 2010
Charlotte's Heath Catheterization
Hi everyone,
A lot of people have not liked my using the blog, so I will just post the same update on both now and you can choose which one you want to view it on:) No biggie.. So, we arrived at a bright and early 6am to Childrens and of course it took another hour and a half to get checked in, give Charley some oral sedation medication, and then get her IV done. She was great up until they held her down for her IV, it took a good ten to fifteen minutes to calm her down after that. She was ticked off everytime she looked at her IV splint. I think the hardest thing for these kids is being held down for procedures like that, it, of course has to be done but they hate it more than anything. Once the sedation kicked in she was still awake but groggy and every few minutes as we were watching Yo Gabba Gabba, she'd say "cup", and Jason and I would look at each other in terror fearing a temper tantrum was about to ensue. It's the ups and downs of these days that make them so hard, well that, and the 4-1/2 hours of sleep we got.
They took us up about 8ish to the cath lab, and within 10 seconds of shooting the sedative into her IV line she was practically comatose. I laid her down, kissed her and we left, she was asleep as far as I could tell. I think for Jason this is the worst part of his day, seeing her passed out, eyes still half open no movement whatsoever. He can't take it and if possible I think he would run out of the door, or not go in with me at all. I always tease him about it. We ate at Subway, and although I was starving for some reason my stomach was nervous as hell and I barely ate. Being back in the hospital for this, after a seven month absence makes me relive all of my emotions that are held there. I hate it, and Dr. L'ecuyer's fellow didn't make me feel much better. No offense to medical students but they suck and always worry me more than I should be, thank goodness for Dr. Turner who actually does Charlotte's catheterizations, he always eases my anxiety.
It never ceases to amaze me all of the emotions conjured up in that hospital, as if the minute I step back through those doors I'm transported back a year a half ago, living in the PICU, barely eating breakfast/lunch/dinner at the Subway downstairs, full of fear, uncertainty, and mourning my daughter who was still playfully smiling away at everyone she met, and I just feel so terrible for all of it. I went to the bathroom and watched a little girl come in the front entrance, scatters of hair, a hospital mask on her face. I'm assuming it was cancer and she was immune compromised but being there it just sends shivers down your spine how clueless we all are. Walking around bitching about our car, our job, miniscule things in comparison to what patients and their families go through. I thought I was getting less judgemental of humanity but lately I think I'm getting worse:)
We eventually went upstairs and as we were waiting the nurse passed us in the hallway and said she had just taken Charlotte down to post-op (our pager hadn't even gone off yet). She said she was a little feisty about going to sleep (which made us laugh out loud of course), Charlotte feisty NEVER, LOL.. Dr. Turner came out, I love Dr. Turner have I not told you this yet. He is great, and said all of her pressures were normal, she did great, it went perfectly, and she would still be a candidate for transplant "when" needed.
Downstairs we met our nurse, she instructed us briefly (as we are pro's at this now) on keeping Charlotte laying flat for a few hours to which again, we laughed out loud, but said we'd try our best. She slept for another hour, maybe more and literally woke up and was non-stop talking from that point on. I have video I will post of her just blabbing away. The nurses all came in to see her and talk to her, she is like a celebrity everywhere I take that child I swear. Shockingly and I am so proud of her she did in fact stay laying down for a few hours. We let her have her drink, we fed her, all while she laid there watching TV. She really was great, the post op is what I dread most, I'm sure having nothing to do with out last one where she was ticked off and refused to go back in her room, and then ripped her IV out. She got a little feisty after the nurse removed her IV and pressure dressing on her leg, she was fidgety and wobbly all while trying to put stuff on her bed where she wanted it but we survived and all in all it was a success. We kept trying to move her DVD player for her, or her blankets and she was getting so pissed off and frustrated it was kind of funny, when cardiology came down to give her the OK to leave she was only happy if I laid on the bed and she jumped on me.
She was wonderful and besides being exhausted everything went smoothly, up until about 5 o'clock when it was apparent that she had developed a fever. I wondered if it was coming because in the afternoon when we got home she was breathing heavy and I was panicked because we had skipped her meds due to the procedure. I didn't think she could start heart failure symptoms after missing one dose so once I calmed myself down I thought she had to be heading into a fever, and sure enough she was. They don't think it is related to her cath because Jake's been sick since Friday with a fever and it only makes sense that she was next. So that's that, monitoring her today keeping the tylenol flowing. Too bad she can't have a bath until Friday but we'll get manage.
One thing that is front and center on my mind today is how the fellow, and Dr. Turner, and the nurse all used the words "when she is transplanted", not "if she is transplanted". The word used to be "if", but without improvement this long it is now a matter of "when". This is stuck in my mind, with a lot of thoughts/emotions behind it. These last few months I have allowed myself to hope for a recovery of some kind, that this will just be a trying blip in our past someday. I was reminded yesterday still how fragile her life is, and how we are not out of harms way and never will be. UGH!
Thank you for your prayers and love,
Courtney
A lot of people have not liked my using the blog, so I will just post the same update on both now and you can choose which one you want to view it on:) No biggie.. So, we arrived at a bright and early 6am to Childrens and of course it took another hour and a half to get checked in, give Charley some oral sedation medication, and then get her IV done. She was great up until they held her down for her IV, it took a good ten to fifteen minutes to calm her down after that. She was ticked off everytime she looked at her IV splint. I think the hardest thing for these kids is being held down for procedures like that, it, of course has to be done but they hate it more than anything. Once the sedation kicked in she was still awake but groggy and every few minutes as we were watching Yo Gabba Gabba, she'd say "cup", and Jason and I would look at each other in terror fearing a temper tantrum was about to ensue. It's the ups and downs of these days that make them so hard, well that, and the 4-1/2 hours of sleep we got.
They took us up about 8ish to the cath lab, and within 10 seconds of shooting the sedative into her IV line she was practically comatose. I laid her down, kissed her and we left, she was asleep as far as I could tell. I think for Jason this is the worst part of his day, seeing her passed out, eyes still half open no movement whatsoever. He can't take it and if possible I think he would run out of the door, or not go in with me at all. I always tease him about it. We ate at Subway, and although I was starving for some reason my stomach was nervous as hell and I barely ate. Being back in the hospital for this, after a seven month absence makes me relive all of my emotions that are held there. I hate it, and Dr. L'ecuyer's fellow didn't make me feel much better. No offense to medical students but they suck and always worry me more than I should be, thank goodness for Dr. Turner who actually does Charlotte's catheterizations, he always eases my anxiety.
It never ceases to amaze me all of the emotions conjured up in that hospital, as if the minute I step back through those doors I'm transported back a year a half ago, living in the PICU, barely eating breakfast/lunch/dinner at the Subway downstairs, full of fear, uncertainty, and mourning my daughter who was still playfully smiling away at everyone she met, and I just feel so terrible for all of it. I went to the bathroom and watched a little girl come in the front entrance, scatters of hair, a hospital mask on her face. I'm assuming it was cancer and she was immune compromised but being there it just sends shivers down your spine how clueless we all are. Walking around bitching about our car, our job, miniscule things in comparison to what patients and their families go through. I thought I was getting less judgemental of humanity but lately I think I'm getting worse:)
We eventually went upstairs and as we were waiting the nurse passed us in the hallway and said she had just taken Charlotte down to post-op (our pager hadn't even gone off yet). She said she was a little feisty about going to sleep (which made us laugh out loud of course), Charlotte feisty NEVER, LOL.. Dr. Turner came out, I love Dr. Turner have I not told you this yet. He is great, and said all of her pressures were normal, she did great, it went perfectly, and she would still be a candidate for transplant "when" needed.
Downstairs we met our nurse, she instructed us briefly (as we are pro's at this now) on keeping Charlotte laying flat for a few hours to which again, we laughed out loud, but said we'd try our best. She slept for another hour, maybe more and literally woke up and was non-stop talking from that point on. I have video I will post of her just blabbing away. The nurses all came in to see her and talk to her, she is like a celebrity everywhere I take that child I swear. Shockingly and I am so proud of her she did in fact stay laying down for a few hours. We let her have her drink, we fed her, all while she laid there watching TV. She really was great, the post op is what I dread most, I'm sure having nothing to do with out last one where she was ticked off and refused to go back in her room, and then ripped her IV out. She got a little feisty after the nurse removed her IV and pressure dressing on her leg, she was fidgety and wobbly all while trying to put stuff on her bed where she wanted it but we survived and all in all it was a success. We kept trying to move her DVD player for her, or her blankets and she was getting so pissed off and frustrated it was kind of funny, when cardiology came down to give her the OK to leave she was only happy if I laid on the bed and she jumped on me.
She was wonderful and besides being exhausted everything went smoothly, up until about 5 o'clock when it was apparent that she had developed a fever. I wondered if it was coming because in the afternoon when we got home she was breathing heavy and I was panicked because we had skipped her meds due to the procedure. I didn't think she could start heart failure symptoms after missing one dose so once I calmed myself down I thought she had to be heading into a fever, and sure enough she was. They don't think it is related to her cath because Jake's been sick since Friday with a fever and it only makes sense that she was next. So that's that, monitoring her today keeping the tylenol flowing. Too bad she can't have a bath until Friday but we'll get manage.
One thing that is front and center on my mind today is how the fellow, and Dr. Turner, and the nurse all used the words "when she is transplanted", not "if she is transplanted". The word used to be "if", but without improvement this long it is now a matter of "when". This is stuck in my mind, with a lot of thoughts/emotions behind it. These last few months I have allowed myself to hope for a recovery of some kind, that this will just be a trying blip in our past someday. I was reminded yesterday still how fragile her life is, and how we are not out of harms way and never will be. UGH!
Thank you for your prayers and love,
Courtney
Friday, October 15, 2010
Canceled Heart Catheterization
Hi everyone,
I just wanted to let you know that I cancelled Charlotte's heart cath in the middle of the night. I feel guilty because I cancelled it yesterday after finding out she had an ear infection. Then called them back and explained that it was a minor ear infection, she hasn't had a fever or runny nose and they decided to go ahead with it, but told me if she came down with fever overnight to call and cancel. Then she woke up last night, I had been up late already getting things together for the morning, and at that point I just threw my hands in the air so to speak. It became evident that I was trying to push getting this done because well, I worry and want to know how she is doing. I was tired, she is tired, and it just wasn't worth putting us all through misery when we weren't 100% to begin with. The process is hard enough trying to occupy her all day, getting her to drink the nasty sedative med, and then putting in her IV when she's half way out of it. Once she gets groggy she gets kind of cranky, and when she wakes up having to be still is well, almost impossible for a toddler. We need to be on top of our game for these procedures and just weren't going to be.
I'm sure the doctor and nurses in the cath lab were like "this mom is crazy" but so be it, I suppose they'd be half right, I am a little crazy at times, LOL:) Jason let me sleep this morning and I slept until noon, I can't even remember the last time I did that. So, I know I've been running on empty. I'm letting myself off the hook and will let you know when we reschedule.
Thank you and keep praying,
Courtney
I just wanted to let you know that I cancelled Charlotte's heart cath in the middle of the night. I feel guilty because I cancelled it yesterday after finding out she had an ear infection. Then called them back and explained that it was a minor ear infection, she hasn't had a fever or runny nose and they decided to go ahead with it, but told me if she came down with fever overnight to call and cancel. Then she woke up last night, I had been up late already getting things together for the morning, and at that point I just threw my hands in the air so to speak. It became evident that I was trying to push getting this done because well, I worry and want to know how she is doing. I was tired, she is tired, and it just wasn't worth putting us all through misery when we weren't 100% to begin with. The process is hard enough trying to occupy her all day, getting her to drink the nasty sedative med, and then putting in her IV when she's half way out of it. Once she gets groggy she gets kind of cranky, and when she wakes up having to be still is well, almost impossible for a toddler. We need to be on top of our game for these procedures and just weren't going to be.
I'm sure the doctor and nurses in the cath lab were like "this mom is crazy" but so be it, I suppose they'd be half right, I am a little crazy at times, LOL:) Jason let me sleep this morning and I slept until noon, I can't even remember the last time I did that. So, I know I've been running on empty. I'm letting myself off the hook and will let you know when we reschedule.
Thank you and keep praying,
Courtney
Monday, October 11, 2010
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.
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.
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