Charley's 2:)

Today is Charley's 2nd birthday.

On November 23rd, 2008 I went into the hospital around 6 am. It was 1:49 that afternoon that she graced us with her presence, the labor and delivery were by far the easiest of the three. As it should be by the third I suppose. Jake was so nervous coming into the room, he wouldn't go near us until he knew what the IV was, and the in's and out's of the hospital room. Eventually coming over to say Hi and cuddle. Alaina was just SUPER excited, she felt like a pro at this moment, taking care of her little brother and enjoying the reality that she now FINALLY had HER BABY SISTER. Charley was such a calm baby, I remember my friend Stefanie being over and we'd just sit and chat. Charlotte chillin in her bouncy all the while. At two weeks she looked me straight in the eye and told me something. I don't know what it was, but it was important, my Mom saw it too and we both knew it was BIG. She could sit up by four months, and loved her books, or laying there with Jake and Alaina. She was smiley and happy as can be. I really felt complete silence, like everything was as it should be. The adjustment was easy and she just fit right into our lives.

April 24th, 2009 riding to Childrens in that ambulance I thought I was extremely calm. It may have been acting but I was sure I was pulling it off. I remember calling our mom's and using every effort to coolly say that this was just a precaution, that our local hospital couldn't do an ECHO that late at night so we needed to go to the Childrens hospital. At the time I was incredibly blind, the ER irritated me, no one knew what I had come for, the local hospital didn't tell them ahead of time, blah blah. It was annoying, and all I wanted to do was walk out of there because they were wasting my time for nothing.

For some reason I made Jason come down to meet me. I should've known then that if I call in the big guns, my most important ally, my rock for support that I was shaking in my boots and this was not good, but I continued on blindly. My Dad showed up at the hospital unannounced, maybe he had some sick inclination that he needed to come, or maybe he just knew that an ambulance ride however harmless it seems is never a good start. At 1 o'clock in the morning I knew my life was forever changed. I knew that there was a reason for that amublance ride beyond what they had cautiously told me. The minute I saw Charlotte's heart on that screen I knew it wasn't right, I knew a fight was about to ensue, I had no idea how big though. I just thought "okay that's wrong, how do we fix it". Looking back I still feel that pain of finding out it wasn't that simple, that there was no "fix". An adults heart, let alone a babies should not take up that much space on a monitor screen. It was obvious to me that this was life threatening, and within hours we had poked and prodded my precious baby girl, and she was now hooked up to machines and drips, and the nightmare became clear.



The next morning our doctor used the words "impressive", he said "it was impressive that she made it through the night". I was still in shock, looking back I still am. I began over the next few days planning out her funeral in my head, casket color, burial or cremation, what songs would we play. How I would tell Alaina and Jake, the worst thought revolving over and over, how will I tell Alaina and Jake.. I had not showered in days, the nurses gave me a toothbrush, Jason brought me a new shirt. I hadn't slept or ate, and I had to try and make sense out of this to a 7 and 4 year old? It is so easy to transport back to that time, and so easy to focus on how there is no guarantee we won't be back there again. At any minute, at any second, so I add things up as we go, and have a pretty good idea of how her funeral that I pray never comes, will go.



A week went by and they were amazed at how well she was doing, they started switching over her IV meds to oral ones. She would be on them the rest of her life, 1/3 of the kids get better, 1/3 stay the same, and a 1/3 get worse and need transplantation, another revolving thought. Everyone was asking me why don't they just list her, as if listing her was the fix. As good as tranplant medicine has gotten, a flu could kill a transplant patient. At anytime, any moment they can suffer massive rejection and die. A transplant just trades risk and complication, it is not a fix, and if it fails they can't just plop your old heart back in to stave off rejection. Two weeks were approaching and the doctors were ready to give her back to me, to send her home. For anyone who remembers the feeling of taking home your newborn for the first time, this was multiplied by a 100. The hospital is safe, there are people everywhere to help, to rely on. I have never been more terrified of taking a child home, the responsibility factor just became astronomical. This was like taking the weight of the world home on our shoulders, in a small, smiling package. She cried when we got home, she didn't recognize it, or she had felt she would never see it again. I'll never know what went on in her little head but as she cried and acted funny about being here, inside I felt the same way. I wanted to bolt back to the hospital, to safety in numbers.



It has been rough, I have spent a lot of alone time sitting on my ass, just THINKING. I try and get out, I try and LIVE, but there are a lot of days where I just sit, watching her like a hawk. My house has suffered, it has never seen as much dirt as it does now. Maybe my kids have suffered too, or my relationship with Jason. Maybe someday they will say things like I didn't pay enough attention to them, I'm trying to make sure that doesn't happen. Time has healed a lot, I don't over obsess (unless she is sick of course), I can be alone with her, I can allow her to be around other people without wanting to grab her immediately, and slap a mask on their face to protect her from their germs.



It has been a year and a half, and the child who I never thought would come home again. The child who I thought I would say goodbye too, is still here jumping in front of the TV. Singing her Barney songs, bossing us around like we're all her little minions "I want milky", "I want school", "No Jakey/Alaina". She speaks in sentences, and knows some of her colors and shapes. She loves her family, books, chasing her brother, tickling her sister, goldfish, her blankies. She loves me and Jason, she lights up when he comes home from work "HI DADDIE". She calls "MAMA" at 2in the morning, and runs to give us hugs. It's amazing to me, that someone sooo sick can run around here and act like it's no big deal. She refuses to acknowledge that her heart is barely working. We're the ones in pain, she's just living her life, so today I want to honor her life. The one she still has, and we still have with her.. It's very easy for me to get sucked into pity parties for us, to feel estranged from the real world. I hope that as time goes on, and she continues to thrive that it will get even easier to allow the LIFE to outshine the MAYBE'S. Strangers know she's special, they tell me things all the time, and we know more than anyone how precious her life is. She is a light that I can't imagine not having, just as bright as her brother and sister. So, HAPPY BIRTHDAY BABY GIRL:)

Refresh

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

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

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

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

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

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