What is there left to say?

I come to my blog quite often, but can't bring myself to sit and actually type. What is there left to say? This blog was created and focused mostly on and for Carly. Our life with her. Our struggles with her. Her never ending school issues. The constant doctor appointments. I wrote of her accomplishments and her milestones. Quite a bit of bragging has gone on here too. So now what? What is there left to say?

About the only thing on my mind now is how much I miss her. I never knew the ache inside that I know now. It's a physical ache. Unless you've shared in the loss of a child, you'll never understand it. Paul and I talk quite often of this ache, and how we never knew a person could actually ache and hurt so badly, from the inside out.

As for Paul, well,,he isn't doing good at all. He is extremely depressed and crying all the time. Sometimes, I get angry that he is crying so much. Why am I not crying that much? Don't get me wrong, I do cry and I cry often, but Paul will cry for hours upon hours. I told him yesterday that he is going to have to get back to the doctor and ask for a different antidepressant or an additional one.

Ashleigh, she feels pretty much the same way Paul and I feel. An unbelievable ache inside. She is a very strong girl. Keeps a pretty even keel on things. But the loss of her little sister is killing her. As you all know, those two girls were extremely close to each other. Ashleigh fights to remember the last weekend they had together. They had so much fun. It was 2 weeks before we lost Carly. Ashleigh is very angry that she couldn't get to the hospital that god awful day in April. There was just no way, she lived 1 1/2 hrs away. She is angry that the first time in two weeks that she saw Carly, was lying in that damn funeral home. Our girls were something else. Ashleigh was more like a second mom to Carly. Even though distance kept them apart for weeks on end. Their bond was one of a very special kind.

Brad, well what can I say about Brad? He's Brad. Holds things in as he always has. He misses Carly too, although he doesn't want to talk about it. Which worries us to no end.. Carly and Brad had a very unique relationship. He was her "Bubba"! Every single day, often times multiple times a day, Brad and Carly did the 'high five's'. That was their thing. Due to Carly's left arm/hand issues, she had a harder time giving a high five with her left hand. But, big brother wouldn't let her slide. He made her high five him with both hands. She would do it every time. But, sometimes Carly would be so mad at him...because she would just as soon NOT have used her left arm/hand.... after Brad would walk away, she'd flip him the bird!

I've had such a hard time with school starting. I should have been able to go school clothes shopping for my girl. I missed taking that first day of school picture this year. Of course having the school bus stop at my driveway every afternoon for 2 straight weeks didn't help me either. In fact, it just about pushed me over the edge. Why on earth would that damn bus stop at my driveway? That entire school knew of Carly's passing. I told Ashleigh, "if that damn bus doesn't quit stopping at our driveway, I'm going postal on someone". Well, they finally did stop. Nothing like sticking a dagger straight into my heart and giving it a good twist.

We have knew neighbors now. After the house sat empty for over a year..You might know, they have 2 little girls. We haven't had neighbors with kids in about 16 years. One girl is Carly's age and in the 2nd grade, just as Carly would be. The other is 5 and in kindergarten. You can't imagine how it kills me hearing those little girls playing outside every afternoon. Oh how Carly would have loved these little girls. Playmates. Something she never had. Her only playmates were her school friends.

Night time is terrible for me. Well, so are mornings and afternoons too. But at night, as I lay down, my mind goes into a mode that I can only describe as a "life before my eyes" type of thing, only it's on fast forward and it's all about Carly. Her entire life goes spinning around in my brain. I sleep with one of her blankets and one of her pillows. When I actually do fall asleep that is.

Every time I would rock Carly, and we rocked every day... I would breathe her in. Probably sounds corny, but that's what I did. I loved her scent. Except when chemo was going on... that was all I could smell at that time...all those nasty toxic drugs! But I swear I couldn't breathe in enough of her. I miss that. I don't want to forget Carly's scent. I pick things up and smell them now, just trying to pick up her scent.

This house is definitely not the same. Some people think we should sell it and move away. But where would we go? We've thought about it, for a brief second, but then again, we don't want to. Home is where Carly was the happiest. Home was her favorite place to be. Don't get me wrong, she loved to be on the go, but when she wanted to go home, she let us know it. And we'd best be quick about it. As we sit and look around our home, it's still filled with all of Carly's things. With the exception of her kitchen set and art easel, we took those out when Ashleigh moved back home over the summer. Our house is just so small, that we HAD to get those big items out of here. But, I didn't part with them, they are at my parents house. Actually, I wanted to donate them to Mott Children's Hospital, but they wouldn't take them because they were used. Makes me angry, because they are like brand knew! Regardless of those things being gone, our house is still full of her toys, clothing, bazillion books and color books, etc.. Some people think we should box her stuff up. But I can't do that yet. I know that it bothers Ashleigh seeing all of Carly's things. But I'm not ready. I don't want to erase Carly from this house.

So, bear with me as I try to get through this horrible time in my life. I have been checking several blogs that I follow. Trying to get back into the lives of all my online friends who have given me so much support. Dare I say, more than most of my in real life friends have given me. Which is very sad too. Guess I'll end on that note, because really, what is there left to say?

September 25

Six years ago today, almost to the exact time that I'm sitting here typing, Paul and I were given the words that no parent ever want to hear. Leukemia. Oh my gosh were we devastated with that news.

I sat holding a very sick little 2 year old in my arms. Being scolded by the "head" ER doctor. That "your daughter is very, very sick". Of course, I fired back with my big mouth. "No kidding, why do you think we're sitting in the fricken ER"?

Our heads continued to spin as we were told Carly was gravely ill. Her platelets were next to nothing. Her liver, extremely HUGE; as the one doctor had put it. Her hemoglobin almost nonexistent. Her white count was through the roof.

From that point forward. We thought our lives had just ended. What news could possibly be worse than hearing that your 2 year old has leukemia? Now I know. We started hearing words like Oncology, Oncologist, blasts, spinal taps, bone marrow aspirations, blood counts, broviac lines, ports. Being asked almost instantly, "does she have siblings"? "how, many siblings and are they sisters or brothers or both"?

We learned late that night, after being admitted that Carly had been diagnosed with AML (which is the most common form of leukemia for kids born with Down syndrome) leukemia. We were told how our treatments would be. 6 months of very intense chemo. Ideally, 3 weeks spent inpatient to receive the chemo and a couple weeks at home waiting for counts to recover. Then back inpatient again. This news was given to us by the a female resident doctor, who told us she had gone down to the lab herself and viewed the slides of Carly's blood work. She delivered the news to us about midnight on the 25th. By this time, Carly was receiving red blood and platelets. Still, our heads were spinning.

Early the next morning, on Sept 26, we met our Oncologist. He came in to our room and sat down telling us about a completely different type of leukemia. ALL leukemia. He went on to tell us that this was the "best" form of childhood leukemia. If you had to pick one for your child to have, you'd definitely want this one. He went on to tell us how the survival rate is much higher. And how the treatments are not as harsh. And that they can cure this one with like a 90+% rate. He continued on telling us of the treatment plan. 26 months. Yeah.... our mouths dropped. We then explained that we were already told she had AML. That the resident told us she looked at the slides from the blood work herself. Needless to say, he was NOT happy with that resident doc! And so, our heads were spinning again. Being hit with a whole new plan. Hearing 26 months worth of treatment didn't sound like something better to us. Verses 6 months... it sounded so much worse.

Soon after our talk with the Oncologist, we started receiving information regarding ALL. Reading about all the dangers involved. Reading about all the side effects. Realizing we were in for a very, very long haul.

So, today goes on. Not how we expected it to be, six years later. We never thought for one minute that Carly would not win her fight with leukemia. She had proved herself a determined and strong little girl twice before, with both open heart surgeries. Sure, there were times we nearly lost her throughout those 26 month; all of which were due to chemo drugs. But we never doubted that she would beat cancer. Beat cancer she did. She went into remission on the 14th day of treatment. Full remission. Zero blasts in her blood. Perfectly clear bone marrow.

Just the other day, I told my counselor that I feel so cheated. Cheated due to all those years of treatment. Treatment which caused our lives to be changed. Treatment that caused us to spend so much time inpatient with blood infections and fevers and dehydration from chemo. I feel cheated that we didn't have our happy, healthy little girl longer in our lives. She was taken so quickly, with no warning whatsoever. We NEVER saw this coming. EVER. We feel as if we only had about 3 1/2 healthy years with her. Well, that's not true. She was healthy from the age of 4months to 2years. In between heart surgery 1 & 2. But then, three months to the day of being discharged from heart surgery #2, came the diagnosis of leukemia. So anyway, yeah... I think we were cheated.

Now we sit here wondering, why?? Why she's no longer here. Yes, I know it was all heart related, but why? I know there are so many of you who believe in God. Right now, me and God aint good. At all. I will never understand a God who allows a child to go through so much sickness. Why doesn't he heal them? A God who snatches a child right out of the clear blue and does nothing to step in and turn it all around. What kind of God does that to a child? Not one I want much to do with. Even tho, I still want so desperately to believe that Carly is an Angel in heaven right now. She'd darn well better be after going thru all the crap she has endured in 8 short years. Maybe there's hope for me and God yet...but right now...I'm PISSED off at that so called God!

FYI: September is Childhood Cancer Awareness Month.
Also, children born with Down syndrome have an 80% greater chance of developing leukemia than other children. As I said above, usually these kiddo's develop AML. Carly was one of the very few with All.

Sunday morning breakfast

Who would have ever imagined that making a Sunday morning breakfast would be so difficult? Today, Paul asked me to make breakfast. His request was quite simple; eggs-over easy, bacon, sliced tomatoes and toast. So, of course I made breakfast.

Man was it hard to to. We quite often had Sunday morning breakfast with our sweet Carly. Boy did she LOVE her eggs over easy. Not scrambled and not just plain fried, they had to be over easy for her. She loved to dip her toast in her "dippy eggs"!

Paul and I sat eating breakfast glancing over at Carly's place at the table. Wow..the memories came flooding back full force. This was the breakfast she loved the most. "dippy eggs, toast and bacon". Many tears filled our house this morning. Who would have ever thought that making a simple Sunday morning breakfast would stir up so many emotions? I sure didn't.

We sat through breakfast, not saying much. Of course we knew just what each of us had on our minds. How much Carly would have loved this breakfast. Her very favorite. Finally Paul said, "this is the first time you've made breakfast in a very long time isn't it"? My response,, I just looked at him and said, "yeah, it's been about 5 months.

Sunday morning breakfasts will never again be as they once were.

Still around.

Yes, I'm still around. Been on facebook mostly. Playing some games and chatting with some friends. Yeah, I'm playing those dumb games. Silly as it sounds, those games help get me out of this horrible daily nightmare, even if it's only for a short time.

If you're my facebook friend, you've seen that I have had a MAJOR attitude problem, but given the circumstances surrounding me... I think I'M ENTITLED to be pissed off at the whole wide world for as long as I want to be. Altho., I'd hate for it to be too long. I really do not like these feelings. The feelings ANGER, HATE and PAIN. And yes, like I said above, I think I'm entitled to feeling like this.

Lot of things going on right now. My health has gone to Hell in a hand basket. Thanks to all this stress. Guess I never realized how much stress impacts a person, physically and mentally. It's been a roller coaster that's for sure.

Tonight Paul and I start our first grief counseling session. We opted out of group therapy. I didn't do so well with that. Maybe it was just the "group" mom and I attended. Maybe I just wasn't ready...but then, is anyone really ready for grief counseling of any sort? Especially for their 8 year old child. I doubt it. I know for a fact that Paul would not do well at all in a group therapy session. So, Paul and I will meet with a counselor together later this evening. Then, per the counselor's suggestion, she will meet with us separately. The counselor, I'll call her M., says that men and women grief so differently, that she feels it's best to see husband and wife at separate times. I guess that makes sense. Maybe that way 'M' can help Paul and I 'see' how and why we grieve over different things that have taken place over the course of this horrific 4 1/2 months.

Please, don't be offended if I don't visit your blog often in the next few weeks. I can't handle all the back to school excitement. It's just all too much for me right now. I so want to be doing that back to school thing with my girl. This really just plain sucks.

I'll be back soon. I think writing on this blog really does help me. Not sure why, but it does.
**I'm still working on that post about going to Carly's school just before the summer break started. It's just a little hard to get through it. And I want to make sure I leave nothing out.**