The Years Continue On

Dusting off the ole blog this week. I've gone back and forth with the idea of blogging again. I've received some FB messages asking why I no longer post here. I really had no answers for those who inquired. But today, I felt it was time. At least for this post. As I logged in, I found 21 posts sitting in my draft folder! I had forgotten about every single one of them. But there they sat, unfinished and of various topics.

Today is going to be a very difficult day. Harder than most of our days.  4 years ago we were told by a very harsh ER doctor, "she's dead. Your daughter is dead" My head was spinning. It was such a foggy feeling. My mom was climbing over the foot of the gurney, my dad was pulling her back. Paul was doubled over crying so hard. And I, I was standing at Carly's side. Crying while screaming at the doctor and nurses. SCREAMING at them to save her.  I was begging and pleading for the doctor to keep working on her. I kept hearing myself scream, "don't you stop. don't you stop." over and over.  I couldn't make that doctor understand that this little girl is our baby. We love her. We can't lose her. She can not die. Its just not possible. And I kept repeating,  "Fix her. Fix her. Fix her" At some point I was told, "we have given her 10 doses of Epinephrine. She's gone." I continued to argue with this doctor. I didn't back down from her. I was not going to let them give up on Carly.  I got in her face as we stood beside my baby girl, looking eye to eye at this doctor..and I know the look I flashed her and the screaming I was doing straight into her face, convinced her to go ahead and push another dose of the Epinephrine. Looking back at it all now, I know she did it only to 'satisfy' the pleading of a desperate mother. That last dose. Number 11. It just didn't work. They soon called time of death. TIME OF DEATH. Oh my gosh, those are 3 of the very worst words I've ever heard. It meant the end. Finality.

I sat down in a chair behind me. I was in complete shock. A feeling came over me as if I were in a dream. I felt as if I had stepped outside of my body. Some man, (hospital staff in street clothes) was leaning over me from behind saying, "slow deep breaths" and he just kept saying it in a very calm and even tone, over and over and over as I struggled to catch my breath. I felt as if I wasn't in that room but as if I were outside, looking in on everything that was happening inside of that ER. The whole room was spinning out of control. People were blurry to me. I could 'see', but I couldn't.  I remember glancing over to my right. A garbage can sat there. When I looked down, I realized I was looking at Carly's pink pajamas that had been cut from her body.  It was without a doubt the most crazy, surreal feeling. All of a sudden I was looking down at Carly's sweet little face. The nurses had placed her in my lap. I don't recall how long I sat holding her. It was quite some time.

The dreaded time had come to call the family. Oh my gosh. How were Ashleigh and Brad going to handle this horrific news of their little sister? Ash was living and working in Kalamazoo. She was at work that day. Brad had called her to tell her something was wrong with Carly and that she was going by ambulance to the hospital. Ashleigh had been calling and talking to my mom throughout this entire nightmare. She had called several times while we were in the ER, her calls were sent to voice mail. We were sure Carly was going to be ok. Why would we think otherwise?  As we left Brad at home that morning, Carly and Paul in the ambulance and me with my parents in the car. I went back into the house to try and calmly (although I was a completely crazy person at that time) reassure Brad that Carly was stable at that moment (which she was) and we'd call him later. We expected that she was going to be admitted and start extensive testing to see why she collapsed on our living room floor. We sure never imagined what our outcome would be. My dad had to break the horrifying news to Ashleigh over the phone. The poor girl collapsed on the floor at work. My brother from Illinois, who happened to be spending a few days in Michigan, was the one who came over to our house to tell Brad and bring him to the hospital. Later that day, both my brothers and my sister in-law went to Kalamazoo to get Ash and bring her home.

I can remember every single detail of that day. Even tho I felt as if I were in a fog. I remember all of it. When Brad got to the hospital, he walked into the room where we were sitting. I was holding Carly. He walked right over to where I sat holding her and stood over us. He was looking down at Carly and his face showed nothing but disbelief. I don't think he really believed that Carly had died. He just stood there staring down at her. I was crying. We were all crying. I looked up at him and said, "she's gone Brad. We lost her." As I looked at Brad, I saw his eyes turn from bright brown eyes to dark, lost and sad eyes. I've seen that very look in the mirror over the past 4yrs., while looking at my self. Looking back at that day now, I wish he'd never come into that ER room where we were. Carly did not look like anything other than a sleeping little girl, in my arms, where she often was. How confusing for Brad to see his little sister who looked as if she were just resting peacefully in my arms.

April 23, 2010. 4 years ago today, we lost our sweet little Carly. How in the HELL did this all happen? Within 1 1/2 hrs our world blew all to pieces. Life forever changed. No longer would we be the people we were before this day. We would become different people. People we no longer recognized. People we didn't want to know...let alone be.

Many readers already know that we no more than took a breath and we were faced with another horrific nightmare. We lost our son, Brad and our home just shy of 18 months after losing Carly. I wont get into much of the circumstances/details involving Brad's death, because this day is the day that we forever lost our sweet little Carly. And the day our lives took a downward spiral.

Throughout the past 4 years, we've struggled. Mentally. Emotionally. Physically. We have hit rock bottom and thought for sure we could fall no further. Wrong! (Advise: Never think you've hit rock bottom. Trust me, there is always further down you can fall.) Paul was injured at work. He filed a workers comp case and the following day he was fired. His former employer then turned around and fought Paul's unemployment and won. We were left with no income. Nothing. Yet we still had a mortgage, car payment and so on...We were forced to get into our retirement money. Depend on help from my family. And had a few FB friends who wanted to help us and sent enough money to pay our electric bill for a month. Of course we both felt like complete and utter failures yet again in this unbelievable life that just seems to continue to knock us down.

How are we doing today? Paul did find a job. A fairly decent one. We are hopeful that we'll soon be getting back on more stable ground, financially. Emotionally, our days are long and exhausting. We struggle with sleep each night. We are forgetful. (Except for days like today, in which case we can remember every single thing/detail that went on.) We have mood swings. Oh my gosh, do we have mood swings. We can go from one extreme to the next, in no time at all. And we're still pissed off. We feel quite often as if we teeter on the edge of sanity. Grief is ever present. It's a constant battle that never leaves us. Some days worse than others. Some days not as bad as the day before. But it's there. Always there. We still cry everyday. We are very broken and know that we will never be whole again. We are forced to be changed into different people and we try everyday to let this change just be. But it is not easy and out of nowhere, before we know it, BAMM...we turn around and there we are again, staring grief in the face.

Grieving parents hear so many cliches. Oh my gosh we get so tired of hearing them. Its as if those cliches are forced on us. Don't get me wrong, we know most are given by well meaning people, who just have nothing else to offer. Who have no words to really say, other than what they've always heard others say.  But for those who have had to bury their child/children, no matter which cliche you happen to say, makes no sense to a grieving parent. And for us personally, it offers no comfort. We are slowly learning to let these cliches go in one ear and out the other.

 ~The following are a few of the many cliches we've heard over the last 4 years~

 Everything happens for a reason.  God has a plan.  She is in a better place.  She is free from pain.  Things will get better.  Life gets easier.  Life goes on.  She's in the arms of Jesus.  She's dancing with the Angels.  Oh what a glorious place she's in now.  I can't even imagine...and on and on and on.

Well you know what? Everything happens for a reason is a bunch of bull when it comes to the loss of a child. There is no good reason for a child to pass on before a parent.

Gods plan. Ha! It ain't working so well for me...what kind of plan rips children from the arms of a loving family?

A better place. Really?!?! How do YOU know that? Have you been to this place personally?

Free from pain? She wasn't in any pain until that split second just before she dropped over from a heart attack.

Things get better? Hmmm, when would that be? How is anything better after you bury your child/children?

Life gets easier? After 4 years, there has been no easy part of life.

Life goes on? Well no shit!

She's in the arms of Jesus. Let me ask which of your children would you like to send to Jesus today? I'm betting none of you would even consider sending your children ahead of yourselves.

She's dancing with Angels. She danced just fine here at home with her family.

Oh what a glorious place she's in now. Really? Have you been there?  Again, do you want to pick one of your children to go spend the rest of your living days in this glorious place while you're left here? Nope, didn't think so.

I can't imagine....YES YOU CAN IMAGINE. Just sit down and do it. Imagine NEVER hearing your childs voice or laughter again. NEVER hugging your child again.  NEVER seeing your child grow up. Imagine a forever empty place at the dinner table.  Go ahead and imagine it.  Everyone CAN imagine it. People just don't want to. They wouldn't dare,,,out of fear. Fear of the very fact that they too, could become one of "us" one day.  I don't blame anyone for that.  I really don't. We never wanted to become "us" either but here we are.

What we 'hear' when someone says those ever lovin' cliches??? Suck it up. Get over it. Stop feeling sorry for yourself. It's not that bad. People try to compare a stubbed toe, flat tire, bounced check, a mouthy kid or a shitty marriage and a bad day at work to our losses. Umm, really? I'm sorry but there is no comparison. None!  I wish those petty problems, were what we had to deal with daily. I'd give anything! I think the one saying that irks me the very most, and I've heard so many times.... -  Life isn't fair, not just for you. Most of the people who say that or have written/typed those words to me don't even realize how ignorant that is to say to grieving parents.  Life isn't fair when you get a speeding ticket, pay 2 electric bills in one month and the electric company wont give you your money back..or even a mouthy child causing you to have a bad day, pissy doctors and teachers, frustration over health, learning and behavioral issues, and so on and so and so on...those are reasons for someone to believe that "life isn't fair". But never say that to a grieving parent because it's probably the stupidest thing anyone could possibly say! Paul and I work very hard at letting those cliches roll off us now. That doesn't mean they have any less sting to them tho. We realize that  others, well they just don't get it. And that they most likely never will.

No matter how many rotten days we have. How badly we long to hold and hug our sweet little girl. No matter our anger. No matter our tear shed. We will never again know the happiness of life as we knew it before April 23, 2010. Although we do laugh and smile from time to time, behind each laugh and smile is our sad reality of our new and unwanted life. As badly as we'd like to go back to April 22, 2010, the very last day the 5 of us were a happy and whole family, before we were suddenly broken. We know that we cant. So here we stay as the years continue on.

(My Facebook friend made this for me. Thank you Ena!)

Treasure Each Moment

...July 4, 2009 was the last 4th of July we had with both Brad and Carly. We had such a good time that year. With the exception of Brad nearly blowing off his finger while setting off bottle rockets :/  Ashleigh wasn't with us that year, she was with friends, on vacation in California.  But, July 4, 2009 was the first, and sadly the last year that Carly used Sparklers. She was in awe of them. :)

So, as we go about our day today, our hearts will remain heavy. Missing both of those kids more than I could ever attempt to explain to anyone. Wishing more than anything we could do Sparklers with our sweet girl again this year and each year after. Wishing Brad was here, he'd be in his glory this year, now that Fireworks are legal in Michigan.

We will be heading to my brother and sister inlaws house (where we were in 2009) today and having fireworks there as well. It's going to be tough, I'm sure, but we will be surrounded by family, who will, I'm sure, be feeling our losses as well. And we'll be missing Ashleigh too. But, our hearts rest easy knowing she is happy with life aboard the USS Eisenhower. They are docked in Palma, Spain for the next several days. Boy, is she one excited Sailor!

Enjoy your July 4th 2012. Be safe. And always remember, Treasure Each Moment, make lots and LOTS of memories...one never knows what tomorrow may bring.

May 24, 1986

...one has no way, to even attempt to imagine, all that can take place within 26yrs.

26yrs ago today, Paul and I were married. Two EXTREMELY young kids; I, 19 and he, was 20. Wow! But on that day, so many years ago, we never, in our wildest dreams or most horrifying  nightmares, could have known how our journey together would go. Sure, we had happy times. Lots of them in fact. But man...it's been rough for a couple of years now.

Ashleigh was born and then 2yrs and 11months later, Brad was born. We had some rough times...as many young married people do. But, we were doing okay. For a while anyway.

When Brad was 2 1/2, Paul and I separated and eventually divorced. We remained divorced for 7yrs. And only because of our children, we started to heal. We would attend school events together, with the kids. Go to movies and even on vacation. At that point we decided we should give it one more try..the whole marriage thing. We wanted our kids happy. We wanted to be happy.

On December 17, 1999 we remarried. Our kids were THRILLED! Our family was whole again. Gone, were the sad looks from the eyes of our kids, who were torn apart through our divorce. The sparkle came back into their eyes. Life was good.

Paul started coaching Ashleigh's soccer team..until the girls got to "that weird age" as Paul called it. He was uncomfortable coaching middle school girls. At that point, he started coaching Brad's soccer team. I think he coached those boys throughout elementary. Once Brad hit middle school, he switched to football.  Our weeknights were busy with practices. Weekends we were consumed with soccer games. Oh, but it was so fun. And looking back, we are so happy to have been so involved with the kids, their friends, the parents, school etc...

Along comes Carly! What a surprise she was. A complete and total blessing for our little family of 4. Jan., 2, 2002 was such a great day. The day our family was complete. And then we were hit with the news, "were sorry but, we think your baby has Down syndrome." We were shocked. Devastated really. This was not the way it was suppose to be. How could this have happened? What were people going to think? How would we tell people? How would our new baby be treated/accepted by others? It was rough, to say the least. But, we made it. And I'll never forget the words that Brad said to me on the night of Carly's birth. Let me back up a bit first. Ashleigh had gone from the hospital with my parents to buy a new outfit for Carly to come home in. Brad stayed at the hospital with Paul and I. Brad heard the doctor tell us, what we thought at the time, were the worst possible words a doctor could ever say. Brad saw the reaction that Paul and I had..and it kind of freaked the poor kid out. He had just turned 12, less than 2 months before Carly was born. Eventually, Paul and Brad left the hospital that night. I called home to talk to the kids and Paul. When Brad got on the phone, I was trying not to cry. Trying really hard not to be emotional. He asked me, "are you okay mom?" I said, "I just don't know what we are going to do." Brad's response, "we're just gonna take care of her mom." And at that very moment, even though I was so saddened, I knew, that once the shock wore off, we'd be okay.

3 weeks after Carly's birth, we were hit with another blow. We found out that she had a severe heart condition. She would not survive childhood without surgery, but what she needed done, was no easy task. Carly was given less than 20% chance to survive with a successful surgery. At 3months of age, she was taken from my arms, into surgery. She made it! But 13hrs later, we nearly lost her to a pulmonary embolism. She spent 3 1/2 days on ECMO. 31 days after entering UofM hospital for open heart surgery, we brought our baby girl home. Her surgeon was in awe of her. He told us, "I expected your stay in ICU to be 4-6months." She blew the minds of those doctors.

June, 2004 we were back to UofM for a second heart surgery for our sweet girl. She breezed right through it. We were discharged on the 4th morning following her surgery. We were amazed. And thrilled. We were home, happy and healthy.

Sept 2004, leukemia reared it's ugly head with our sweet little girl. We sat at UofM in total disbelief. How many times were we going to get knocked down in this life time? When was enough going to enough? How could this tiny little 2 yr old be put through 26months of chemotherapy?
She had endured so much. We nearly lost her 2 times due to blood infections and once due to a round of really hard chemo that caused dehydration so severe the nurses couldn't find vitals on her. But, she came out swinging. She beat that evil cancer. She won the battle. Our family could finally get back to being a family. 26months is a long time. Lots of hospital stays. Low blood counts, = no company, no going away...being confined pretty much to home. After chemo days, we were resting pretty easily. Carly was thriving. Our family was happy. Things were good.

April 23, 2010 our life came crashing down. Our family of 5 was no more. Our lives and hearts were shattered. How could life be so cruel? How would we go on? What would happen to our family? Could we survive this life, without Carly? We thought this would certainly be the worst day of our lives. How could life get any worse? Our family was suddenly ripped apart and it all took place in 1 1/2 hrs. Our lives were turned upside down. Life as we knew it, had forever changed. We would never be the people that we were before that dreadful day.

Life was pretty difficult for us in the days and weeks and months that passed after losing Carly. We never felt so alone in all of our lives. Not just Paul and I, but Ashleigh and Brad too. People didn't know what to say, so they said nothing. Which is much harder on grieving families. We cried many tears. Felt very lost, empty, angry. Surely we had been through enough. How could this have happened? Would we, could we survive this? Carly was the core of our family. Loved beyond loved. And she was gone. Plucked, right out of the family core.

I often times worried about Paul and I. The statistics/divorce rates are out of this world, high, after the loss of a child. Would we be okay? I worried about Ashleigh and Brad too. How would they cope with the loss of their baby sister? Would they be okay? Then I'd get pissed. Dammit, Ashleigh and Brad had been through enough. Paul and I had been through enough. And now they lose their sister...we lose our daughter...total bullsh!t! Yep, that pretty much sums up my thoughts in the days, weeks and months after losing Carly. Total bullsh!t!

Some how, we were all making it through that horrific time. Making it through the best we could. The kids were doing okay. Paul and I were doing the best that we could. And I thought, just for a split second. We are going to make it through this.

BAMM!!! October 8, 2011. Paul and I left our home at 5:15pm to run to the auto parts store and grab some dinner. At 6pm, I called Brad (he was home) and asked his what he wanted us to bring him for dinner, because I wasn't going to cook. He placed his order - steak, cooked medium..baked potato and fries. At 7:30ish, Paul and I were on our way back home. My phone rang. I noticed it was my friend calling, she rarely calls my cell. I answered and she asked where I was at. And then she told me, "Joany, your house is on fire." I hung up on her and frantically started calling Brad's cell phone. I called it over and over and over and over. He never answered. I called my brother and told him he needed to get to my house. Paul and I were 20 miles away. I called one of my girl friends, who lives 3 miles from me and told her to get to my house, it was on fire. I continued calling Brad. NON STOP..he never answered. How in the HELL could this be happening? I just knew we would pull up to our home and he'd be outside with the firemen. He wasn't. Nothing but chaos once we arrived on the scene. I was in shock. We were all in shock. There is absolutely no way that this could be happening. It was like a nightmare. As I sat watching, everything seemed to be going in slow motion. Paul flipped out and ran through the police crime scene tape that was placed around our yard. He was heading to the house. He was tackled by 2 State Troopers and placed in hand cuffs. We were kept separated for a couple of hours. I just couldn't believe this was happening. Eventually, the cops let us be together. And then the devastating news, "we have found a body in the home." came crashing down upon us. My knees buckled. I could not believe what we were being told. He was gone. Brad was gone.

As I sit here today, typing this, I see that I may have veered off track of what I intended to post, but when you've lived and lost, what I've lived and lost in 26yrs, sometimes, you find yourself rambling. Memories flood your mind. Your heart. Your entire soul. Tears flood your eyes and you try desperately to remember every detail of your life.

This has been one Hell of a 26yr journey for our family. As we said our "I do's" standing in that church, we didn't have a clue of what we would face. How life would play out. The joy we would share. The heartache. The pain. The suffering. The loss. One never knows, for that matter. But I can promise you this, we never in a million years thought we'd be grieving over 2 children. That was something that never, ever entered our minds. It's just not suppose to happen that way. Parents aren't suppose to bury their children. As hard as each passing day is for Paul and me. We continue to put one foot in front of the other,,,even when we feel we just can't do it another day, but it's the hardest thing we've ever done.

I would like nothing more, than to turn back the hands of time. Rewind our lives to happier days. Good times, when we were a family of 5. But, I know that will never be. I can't begin to imagine having to go through this horrific time without Paul. I wish we didn't have to go through any of this, but we do.

We did nothing fancy for today. We never do. Likely because we don't know which anniversary to celebrate. This one, or the second one, or both?! I made fish, corn on the cob and baked potatoes for dinner. We ate, did the dishes and Paul was in bed by 8:15 (he works about 70+hrs a week).

Tomorrow, after Paul gets home from work, we will head to the cemetery. I bought some flowers for Memorial Day to place on each of the kids graves. We'll talk about the past 26yrs..the past 25 months. We'll talk about Brad and of our memories about him. We'll talk about Carly and all the memories we have of her. We'll stand at the foot of their graves and we'll shake our heads and we'll cry.

10 Years Ago

...today, our family faced what we thought would be the most difficult time in our lives.

April 5, 2002.
Carly was taken back to surgery at 7am.
Open heart surgery.
Surgery that would last about 6yrs.
A surgery that no doctors were confident about doing.
Odds were stacked against her.
She had less than a 20% chance to come out of it alive.

She survived.
Much to the surprise of Motts Cardiac Doctors.
Her surgery deemed, a success!

13 hours after surgery, Carly coded/crashed.
The entire ICU swarmed her bedside.
One nurse straddled over Carly's gurney.
Paul and I stood back and watched in horror.
We later learned, the nurse who straddle over Carly,
had her hands placed on Carly's tiny heart, massaging it.
Carly had a pulmonary hemorrhage..her lungs were shot to HELL!

The equipment you see in the above pictures,
is ECMO and yes, it's as scary as it looks.
But, BUT after 3 1/2 days, ECMO saved our sweet girl.
She beat the odds stacked so high against her.
She fought her way back.

31 days after surgery...we brought her back home.
Healthy.

And now, besides our memories,
both good ones and even the bad ones,
this is what we are left with.

Our hearts beyond broken.
Our hearts completely shattered.

How can 10 years have passed so quickly?
How can all that was fought for be gone?

10 years.
Unbelievable.

April 5

9 years ago today, at 5:30am, our family headed to Mott Children's Hospital in Ann Arbor. Carly would be heading into her first open heart surgery at 7:30am.

I recall that day as if it were yesterday.

Once we arrived, vitals were checked. The dreaded "talk" with anesthesiology took place, for what seemed like forever. Those of you who have had your child put to sleep several times, knows full well just how that "talk" goes. The talk when they tell you your child could die during this surgery. They tell you all the bad things that can go terribly wrong. Mom's cry. Grandma's cry. Dad's cry. But the staff is comforting and caring.

We were surround by our family that morning. As we sat in the waiting room. Waiting to hand our tiny little 8 1/2lb 3month old, over to the surgeon. The surgeon who only gave Carly less than a 10% chance to survive the surgery itself.

Our name was finally called. My entire family headed down the longest corridor that I've personally ever walked down, in my entire life. I held my tiny baby girl while tears streamed down my face. While walking, we met Dr Ohye, (Carly's cardiac surgeon) in the hallway, and he stopped to chat with us for just a bit. Told us to "hold on" and that he'd take very good care of our baby.

We were then placed into a room, which was right outside of the operating room. We were all kissing Carly and telling her how much we loved her. And we were praying, that we'd see her again. Soon. Alive. But none of us knew for sure if that would be the case.

As I handed my tiny little girl over to the anesthesiologist and his nurse, my knees buckled. Paul and my mom each had hold of my arms, thankfully, because I'm sure I would have hit that floor hard!

Our family was then escorted to the family waiting room. Which is located just outside the PICU. We were told that there would be a couple of updates. The first update came, telling us things were underway; surgery had started. Another update came about couple hours later, telling us things were looking good. Shortly after, we received a horrible update. The surgeons nurse told us, "Dr. Ohye isn't sure he has enough of Carly's tissue to work with and he may have to take down the surgery." We were devastated. We knew what "take down the surgery" meant. It meant, he'd undo what he had done up to that point and close her up. Death would soon follow. As we sat, waiting for yet another update..we were all on edge. We were numb. Scared to death. And there were many tears and lots of prayers. When out of the the corner of my eye, I see Dr. Ohye literally bouncing down the hallway and grinning from ear to ear. I knew at that very moment, he had done it. He had fixed that tiny heart. That tiny heart that so many of Mott's cardiac team didn't think possible. I jumped from my chair as these words came out of his mouth, "I had enough tissue and her valve is working beautify" I grabbed him and hugged him so tight. - I was told later, that I was the only parent to ever hug him before - and it made his day :)

We were also told that Carly was not out of the woods. She had a long hard road ahead of her and she needed to get through the next 48 hours without any issues.

She didn't.

13 hours after Carly's surgery, she coded/crashed. Diagnosis - pulmonary hemorrhage. Paul and I stood and watched as doctors and nurses surrounded her tiny body. Working and screaming orders back and forth. We were quickly escorted into a consult room. We were told to contact family and asked if we would like the Hospital Chaplain to be called in. We said yes. The time was around 2am. We sat in that room for a little while. Unsure of how long we actually stayed in that room. Finally, the ICU doc came in. She said, and I quote (there are some things mothers NEVER forget) "we are going to lose Carly very shortly unless we get consent to place her on ECMO" Paul and I had no idea what ECMO was. The doc explained to us the best she could, but trust me, when you are in that critical situation,,,you don't hear a whole lot of what is being said to you. And there really wasn't time to go into detail. We told that doctor that we didn't want Carly to die. We signed the consent and she flew out of that consult room screaming, "mom and dad don't want her to die, get ECMO started".

Our family showed up very, very early that morning. I think they were there by 5am. Honestly can't remember. I just know they were all there. Early. Even Ashleigh and Brad, who were 15 and 12yrs old at the time.

Several hours later, we were able to see Carly. And this is what we saw:

She's laying there, behind all those machines. Trust me, she is there..even if you can't see her little body. Talk about being terrified. I'm not even sure that describes what we felt walking in and seeing this MONSTER machine being used to keep our baby alive.

April 5. Yet another day, that will be etched into my brain for the rest. of. my. life.

Not so happy...

...Halloween.

Our purrrr-fect little girl.

This little kitty,

enjoyed her very last Halloween,

very much.

Wonderful memories,
were made last year.

This year will be a,

not so happy...

Halloween.

Halloween memories.

The following picture's are from last year.
I'm very happy to have these Halloween memories with Carly.

But, I'm very sad that there will be no more
Halloween memories made with her.

Last year was the first Halloween that Carly really got "into" carving pumpkins.

Normally, she would have sat and watched her "Paul" while making

faces of disgust when he pulled all the goopy seeds!

Not last year though!

Last year, she got into it.

Big Time!!

In the above picture, I can still hear her "ugh" sounds

as she scooped out the inside of her pumpkin.

She was still a bit unsure of all the goop,

but she kept right on going.

The next day, we sat the freshly carved Jack-O-Lanterns out on the porch.

We usually did silly face Jack-O-Lantern's for Halloween.

Carly would always giggle after they were complete.

I so wish she would have sat down with those Jack-O-Lanterns,

but she would have NO part of it. She stood with me, in the

yard as I snapped the pictures.
I'm not complaining tho., because we have many
wonderful, Halloween memories.

Reflecting.

So, I've been absent..again! Sorry about that. I haven't felt very well. Dizzy spells. I suspect due to an inner ear infection. However, I'm not a doctor and should not be trying to diagnose myself. If I had insurance, I'd be at the doctor. But, no insurance, so no doctor. But that's another post for another time.

Over the past few days, I've been reflecting. Reflecting back regarding Carly's life. This Easter marked a 5 year anniversary of Carly being inpatient on the 7th floor, of Mott's Children's Hospital. We were inpatient because of a very rare blood infection that kicked in while we were heading to clinic for a regular appointment with Oncology.

While we were in the clinic's lab, this blood infection hit. It hit fast and hard. Carly stopped breathing during a ordinary lab draw. My mom was with us, as she most always is. Mom grabbed Carly off my lap and proceeded to reach into Carly's mouth to pull out a cracker that Carly had been eating. Mom thought Carly was going through the motions of choking. In the meantime, an all out fiasco ensued. To the point that the lab called 911. An ambulance came, doc's from all over UofM came rushing into the cancer clinic's lab. Finally, everyone agreed Carly was stable. Therefore, she was strapped to a gurney and ran through the halls of UofM's basement. Destination, the ER.

Long story short. We were admitted that day. Carly had gone sepsis on us. It happened that quickly. No signs of illness that morning before heading to UofM. She was acting fine. No fever. NOTHING. It hit that fast.

Carly ran a temp of 105 the rest of that day and for 2 days after the fact. All lab work, cultures everything kept coming back negative. She was placed on several IV antibiotics. It was one of the most scary moments that I have ever witnessed. I thought Carly was dying right there in the lab that day.

Finally 4 1/2 days after being admitted, we had a diagnosis: Serratia Marcescens. A potentially fatal blood infection. The reason for fatality; it's resistance to many antibiotics. How in the world, Carly pulled through this is a mystery to all of her doctors. Matter of fact, the head Oncologist at the Ped's Cancer Clinic, came in to see Carly. He told me, "we believe we have the ability to turn this around. It's not to late." Talk about a scary times.

Five years ago, on Easter night, (we had already been inpatient for several days.) I discovered that Carly had no use of her left arm and hand. I was certain she had had a stroke. I begged the 7th floor docs to call someone. Anyone. I wanted her to have a CT scan. I begged and begged. Then, 22 hours later, I told the nurse that if she didn't get a CT scan scheduled ASAP, that I was going to unhook Carly's IV, and take her down to the ER. Well,,,, we were headed down for a CT scan within 20 minutes. This was when we learned that Carly's brain had swollen. We also discovered that, at some point in her life, she had suffered a stroke.

As I look at Carly today. I can't believe it was 5 years ago. Five years ago, we had such a gravely ill child. Five years ago, we were hit with yet more terrifying news regarding Carly's health. Five years ago that we faced a Neurosurgeon who was ready to jump in and open up Carly's head to relieve pressure off her brain. Five years ago, we were sent home from the hospital on 8 different IV meds which had to be given to Carly around the clock. With no help from a home health care nurse.

Often times, I sit and wonder, just how on earth all this could happen to one tiny child. How could one tiny child overcome so many illnesses, so many health crisis? How?

Another reflection this week. The anniversary of Carly's first heart surgery. April 5, 2002 is when I handed my 8lb 8oz., 3 month old over to the the surgical team. Wondering if we would ever look into her beautiful blue eyes again.

Many times, people have asked me how in the world I've done all this. How I've been through all this with Carly. How I haven't lost my marbles...Ashleigh would quickly jump in and tell everyone that I did actually lose my marbles! She may well have something there! The only response I ever give, "Because Carly keeps on marching forward".

Wordless Wednesday...sort of. Dancing Queen. January '08

Photo and video editing at www.OneTrueMedia.com

Oh my...

...I've been reminiscing.

Going through pictures yesterday, I ran across this one. My heart about melted when I saw it. It's a picture of Carly, one week old. When Paul came home from work, I pulled it out to show him. I asked him if this wasn't the most precious 1 wk old he'd ever seen. His response was, "Yeah, Ashleigh was cute" He argued with me for a few minutes. He was Insisting it was Ashleigh. Until I finally pulled the picture out of the frame to show him, the proof written on the back ~ Carly 1 week old.

Carly was born weighing 5lb 11oz. She came home weighing 5lbs. 6oz. She was 18" in length. Just a tiny little thing. Preemie outfits were worn until she was 3 months old. As you can see...they tended to be a little big on her! We had a nurse at Cardiology suggest that we buy her doll clothes. She said she knew of several people who did that. We never did though!

The second time around...

Yesterday, Dec 17th, was our anniversary. It was our 10th year. The second time around! For those of you who don't know our history. Boring to some and interesting to others...here it goes. Paul and I started dating while in high school. I was 17. Paul was 18. We married in May 1986, the first time around, at the tender age of 20 & 21. Ashleigh was born at the end of that same year. Bradley came along in Nov of 1989.

Fast forward to 1991. Paul and I divorced. We sold our brand new home and went our separate ways. The kids with me. I rented a small house that my parents owned. Paul moved to the Detroit area.

Moving right along to 1997. By this time, our anger toward one another finally started to subside. Our kids were constantly begging both of us to go with them to the fair, movies, school activities...etc. We both caved each time they asked both of us to do things with them. Eventually, Paul and I decided that we were getting along very well. After many conversations and spending lots of time together, we decided to try living together. Our thoughts were, if we could get along so well, we owed it to our kids to at least try one more time. And so we did.

By the time Paul moved back in. I had bought some land and had a modular home put on it. The kids and I had been living here about 1 year. We all were together again. Boy did we have one happy little boy. Bradley was in HEAVEN having his daddy back home. Ashleigh was too, but it was just different for Brad.

December 17, 1999. Paul and I headed to the court house with my brother and sister in-law as witnesses, and got married...the second time around. The kids knew we were getting married again, but opted out of going to the court with us. It was Christmas time and their school parties were going on that day. Plus, they thought it was cheesy!

Now, here's a question for you all. Which anniversary would you celebrate? We really don't celebrate either. Maybe because we aren't sure which one we should be celebrating! HaHa! At any rate, the second time around for us, has proven to be so much better than the first time around.

The best result of our getting re-married is of course CARLY! I think Ashleigh and Brad would agree also :0)

20 years ago today.

HAPPY 20th BIRTHDAY, Bradley Paul George

It just doesn't seem possible. I can not believe that twenty years ago today, I was holding our brand new baby boy in my arms. This was our very first 'family photo'. Family of 4! Not sure, but I'm willing to bet that Ashleigh (who never, ever stopped talking, still hasn't) made a comment about her new baby brother..that's likely why Paul and I are looking at her. Being this took place 20 years ago, I just can't remember what exactly was taking place during this snapshot!

Brad was our largest baby. He weighed in whopping 8lb 8.8oz and was 22" long. Poor baby had to be delivered via the vacuum extractor. Yes. It was as scary as it sounds. It's a suction device that is placed on the baby's head. Mom pushes, the extractor suctions the baby out.

Within 24 hours we learned, due to the vacuum extractor, our baby had a very badly broken collar bone. Poor little guy. He was in sooo much pain. I know many doctors claim newborns don't' feel pain. I beg to differ. And personally, those doctors have no business being doctors! But, that's just my opinion. Anyway, this little guy felt the pain. It was gut wrenching. Funny as this sounds, I was very thankful it was his collar bone that was broken. I read an article in Parents Magazine very shortly after his birth. The article was all about the dangers involved with using vacuum extractors. My heart sank as I began to read the article. I learned that many babies were dying due to broken necks after this type of delivery. So yes, I was thankful our baby had a broken collar bone.

Looking at our new baby, we couldn't imagine how he would be as he grew up. We wondered about his personality. Who he would look like. Who he would act like, behavior wise...of course, on bad days, he's his dad's son 100%. LOL! His looks, well those come from his dad too. Matter of fact, all of our kids look like their dad. :o)

Here we are 20 years later. Brad has grown into a nice young man. He has had his share of hard times in these 20 years. Hard times that a person of 20 years should not have ever had to endure. At least not so much, so soon, in such a short span. But, I believe that is called, life. Sometimes life goes along just hunky dory. Other times, not so much.

Brad still suffers with depression. Still is having a hard time finding his way in life. Certainly not what we had envisioned 20 years ago, for our new baby boy. All that being said. Brad has never given us any grief. He was a decent student all through school. Could have been much better (seriously, what mom doesn't say that?) if he had actually opened up a book to study, but he pulled off C's and passed each grade and graduated. High school is now behind him. His future is uncertain. That breaks my heart. He appears to be somewhat lost. Unsure which direction he needs to go. He lacks confidence in himself. Something that took place when he was hit with a severe case of Mono his senior year of high school. That was his breaking point. That's when depression took over his life. Some days, Brad does super. Other days, are awful.

Today, it's your 20th Birthday. Happy Birthday to you! May this year be the start of a whole new beginning.

Thankful Thursday & Looking back.

Fall has arrived. Winter is nearing. Along with that, comes the dreaded cleaning of the medicine cabinets. Out with the old cough meds., cold tablets, expired Tylenol, etc..In with the new. And yes, I said cabinets. I have 2. One over my stove and one in the main bathroom. Reason being, we have tons of medication in this house. Something I wish we didn't have the need for. But thankful for the meds without a doubt.

I can not even begin to describe, what I felt when I found this bottle at the very back of the medicine cabinet. In all honesty, I knew that I had saved this bottle all those years back. Guess I saved it for a reminder. Strange as that may seem. A bitter sweet reminder.

(click on any image to enlarge)

The following images were taken on Carly's second day of being placed on ECMO. This picture was the only picture we could get up close. I believe the nurse took this one for us. You see that little yellow duck? That was with Carly throughout her 30 day ordeal. She loved that duck. She always sucked on the bill (before surgery that is). The nurses made sure it was near her face every day. These pictures are very difficult for me to look at. In fact, I didn't look at them for many, many months after bringing Carly home from that hospital stay.

Carly was in grave danger. She actually did flat line and had to be brought back. Per my words, "I don't want her to die". I recall hearing the doc in charge of the ICU that night hollering, "get ECMO going, mom doesn't want her to die". Those words will NEVER be erased from my memory.This machine is very intimidating. Overwhelming may describe it better. ECMO is big. It's scary. It's dangerous. It was also our only option. Carly would have died if not for this machine. If you look closely, Carly is in the bed that is surrounded by all this machinery. I think if you click on these pictures, you'll be able to see her tiny little head with dark hair.

This picture even shows Ducky too. You really can't tell by all the pictures, but at one point during Carly's 3 1/2 days on ECMO, my brother came in and counted all of the tubes and wires going into Carly's tiny little, barely 9 pound body. The total....21!

Here's a better shot of her head. I would pull a stool up to the end of the bed. I would sing Carly lullabies and kiss her forehead. Hours and hours would pass. I was thankful. So thankful that we had this chance for Carly. I prayed. Prayed that she would suffer none of the ramifications that can coincide with ECMO. There are so, so many.

We couldn't get anywhere near the rest of her body. Only her sweet little head. I was so grateful for that. Not sure who decided to place her head at the end, but I'm so thankful to who ever did this. No doubt, it had nothing to do with them thinking of me...I'm sure it had to do with the best possible set up for Carly and that great big machine.



I'm very thankful for this drug. It no doubt played a huge roll in saving Carly's life after having her first heart surgery. Carly wasn't started on Viagra immediately following her surgery in April '02. The reason it was ever even started on Carly, was due to her crashing/coding 13 hours after surgery. Caused by a pulmonary hemorrhage.

This drug was brought on board after ECMO was unhooked. It was being used to expand the vessels in Carly's lungs. The vessels that were so badly damaged during her hemorrhage. Carly would remain on Viagra for over a year. She was s l o w l y weaned off from it. As you see, if you click on the pic of the medicine bottle, she was on a teeny tiny dose, but it was 4X per day. I had to mix it up for her. I would dissolve the pill into a prescribe amount of water. Mix it up. Pull the exact amount needed for her dose into the syringe, give it to her immediately and then toss the remaining mixture. They would not allow it for future use because they had no data backing up whether or not it would still be "potent" and able to do what it was intended to do.

These little blue pills were very costly. I'm so thankful that we had insurance that covered it. Even though the cardiologist had to fight with the insurance company every 3 months to get the bill paid. The cost for 1 month worth of Viagra (using 4 pills per day) $1,000.00 and some odd cents. That was back in 2003...can't even imagine what the cost is today.

As far as the ECMO goes. Carly came off of it without having any real big issues. There can be many complications going on and coming off of ECMO. The only thing that was a complication for Carly was that she got addicted to very high levels of numerous pain medications. She actually went through terrible, terrible withdraws. So terrible that she would thrash in her bed (of course several of the nurses thought it was all because of Down syndrome. Idiots!) and all her dark hair came out. She came home bald.

Fast forward, March 2005. Carly was in Motts Hospital with a blood infection. During her chemo time. This is when her left side went limp on us. A CAT scan was ordered to view her brain. What they found shocked all of us. Yes, Carly did in fact have a stroke. Years ago as we would eventually find out. Nothing pertaining to the limpness at that time. Her brain did swell from that blood infection. The swelling did cause damage. The damage being in the spot that controls her left arm/hand. It was merely a coincidence that they found that old stroke. Our Neurosurgeon strongly suspected this was a direct result of ECMO.

So, as I go about my day today. I will remain thankful. Thankful for Viagra. Thankful for ECMO. Thankful that God, ultimately healed our daughter. Yes, the machines and drugs played a huge roll, but very few of her ICU docs thought Carly would survive this entire heart ordeal. One doctor in particular..I remember him to this very day. He was NOT one of my favorite docs. He was full of gloom and doom. Anyway, as Carly was wheeled out of ICU on her way to the main heart floor...this doc stopped me. He said, "This is a miracle." He then looked at me and asked, "do you understand what I'm saying?" I said, "yes". He came back with this response, "We didn't do this, Carly was healed by a much Higher Up".

Ahh.....healed, yes she was. For that, I am forever thankful.

Looking Back 2004 part 3

UPDATE:

** Not sure why this posted on 9/24. It's scheduled for 9/25....Oh well...don't sweat the small things right?**

Five years ago today, September 25, 2004, our lives changed in a way that we could never have imagined. Leukemia. Not in our craziest, wildest, most horrible dream of dreams could we have imagined that leukemia would enter into our lives. Shock. Horror. Fear. Agony. A sick feeling in pits of our stomachs. Oddly enough, relief set in. Relief because now we knew. We knew that our precious little 32 month old Carly was in the place she needed to be. A place that could quite possibly cure this horrible evil leukemia. 7th floor Mott Childrens Hospital. The pediatric cancer/oncology unit.

We found out while in the ER, that indeed a virus was going around and causing this type of rash. However, Carly looked terrible on this day. Her lips were white. You couldn't even see the tiny nipples on her chest. They were completely faded away. She was in obvious pain. She had quit walking that morning. She flat out refused to even stand up.

The blood work was ordered. STAT was written on each tiny tube. It wasn't long before we had our preliminary report. Leukemia. Unclear at that time which type. They assumed and even prepared us for AML. As many of you know, AML is the most apt leukemia to strike our children born with Down syndrome. Although, that assumption would prove to be untrue.

Nothing could really have prepared us for that 7th floor. The eerie silence of being admitted to and taken by stretcher, from The University of Michigans ER, to that horribly scary 7th floor. I will never forget the strange silence as we were taken to our room. It was late at night, but still It was a very strange silence. Much different than the 5th floor at Mott - the cardiac floor.

Carly was admitted on the late evening of September 25, 2004. She was in disparate need of blood and platelets. Those were ordered. The battle began. Within two days, Carly had her broviak placed. September 28, Carly had her very first chemo. Our diagnosis of ALL came the 26th. As the doctors put it. This was the "better cancer". I couldn't and still can't figure out why anyone would say one is better than another. It was cancer for crying out loud.

The following video is something I pieced together. You'll see pictures of Carly just weeks before the evil cancer hit her. You'll see pictures of her soon after having her haircut while on the 7th floor. You will see pictures of our family, trying to carry on with live. There are pictures of Carly at her absolute most worse. That would be the time spent on the 7th floor, fighting with all her might to survive a very rare blood infection. An infection that caused her brain to swell. That infection required 8 different IV antibiotics that I had to learn how to run through her broviak. These ran all day and night. Around the clock. It was horrible. (This is the infection that left damage to her brain. The part of the brain that controls the left hand and fingers). You will also see pictures of our clinic family. The doc's and nurses who brought Carly through this. Her very last chemo infusion is also included. Along with Carly giving herself the very last dose of 6MP or also known as Mercaptopurine (oral chemo). This video is only a glimpse into our lives during those 26 months of chemotherapy.



September is National Childhood Cancer Awareness Month. Take some time and read the following facts:

• Each day, 46 children are diagnosed with cancer
• One in 330 children will develop cancer by age 20
• Although cure rates are steadily increasing, 35% of children will die
• Cancer remains the number one disease killer of children; more than genetic anomalies, cystic fibrosis, and AIDS combined
• The overall incidence rate for childhood cancers has increased significantly by almost 33% during the period 1975 to 2001
• On average a treatment for childhood cancer diagnosis is two years
• Cancer treatment can cause serious side effects that may last a lifetime
• Research on the emotional impact of childhood cancer finds that parents and siblings report even greater long term emotional impacts than the diagnosed child

As we reach this 5 year mark. We look back and think. We made it. However, we try not to get to comfortable. As I have seen in the past 7+ years with Carly. Anything is possible. Anything, at anytime. We have learned that we have no control over what goes on. I hate that. I want to be in control, but it can not be that way. In the past 5 years, we have had to change the way we live. Life will never be as it was before cancer reared it's ugly head. This has changed each and everyone of our family members.

We once asked our oncologist when Carly would be considered 'cancer free'. Her words stung a bit. Her response was not what I wanted to have come out of her mouth. She said, "I don't like to use that phrase because once you've had cancer, you are no longer considered 'cancer free' ". OUCH! Those words really stung. However, I do see her point. Those of us who have never had a cancer diagnosis for ourselves are the ones who are cancer free. Those who have had to fight the evil beast...will carry that with them forever. Our doctor did tell us that the further we get away from the date of remission, while staying in remission is certainly a good indication that we may well be, forever done with cancer.

I must say. It is nice to be able to look back. 5 years. Wow! Unbelievable. Sometimes it seems like a life time ago. Sometimes, it seems like just yesterday.

Looking Back 2004 part 2

As we returned from vacation, in Aug 2004, Carly's nose was very runny. Just clear, so I thought I'd give her a few days before heading off to the doctor. If I'm not mistaken, we returned home on a Monday. Late afternoon, early evening. Carly had a slight temp., nothing major. We treated her with Tylenol and she was doing okay.

Thursday of that week, I believe it was Aug 12., I decided to take her to the doctor. She was having a rough time sleeping at night and thru naps. Poor little girl. She had a double ear infection and a nasty viral bug. We got our meds and headed home for our 10 day treatment.

We continued on with our lives. And Carly had finally perked up. We spent time in the pool. Playing outside. Just having fun at the end of summer. We had treated her dbl ear infection for the 10 day course. She finished her last dose of meds on Aug 22. We ran Brad back and forth to the school for football practices. Took the big kids school clothes shopping. Got ready for Brad's first football game of the season which took place around the 28th or so.



By the very end of August, Carly developed a strange rash. My mind instantly went toward heart issues. However, she would get that darn low grade temp on and off. So, back to the doctor we went. The doctor told me that there was a virus going around causing this very type of rash. It sometimes would take a couple of weeks to get through it. Okay. I bought that. He's the doctor. Who am I to question a particular virus that's running rampant through kids in the community.

Jumping into September. Labor Day weekend to be exact. I finally freaked myself out enough that I made a call to UofM Pediatric Cardiology. I reached the on call doc. I mentioned what was going on and told her that I was very worried this was something to do with her heart. This very kind doctor told me that it would have nothing to do with Carly's heart. Her heart was repaired and she was okay. I was told to email our Cardiologist ~ he was away for the long weekend ~ and run it past him, if I thought it would ease my mind. You all know, I did just that. He emailed me back very quickly. He said that his daughters had this very same virus along with the rash, but that he would take a look at her if it would make me feel better. I told him, no...I'm just a wreck of a mother who needs to learn to keep it under control.

The week after Labor Day, Ashleigh had Carly come to school for one of her classes. She had to demonstrate life with a toddler. Ashleigh chose doing Carly's hair. We got to the school and one of Ashleigh's friends met us in the parking lot. She was gushing over Carly and asking how she was feeling. I mentioned the virus and the rash to her. After looking Carly over and much to my surprise, she said "oh, my little cousin has that very same rash. He too has been sick". Okay, my mind wasn't racing quite as much after that conversation.


Again. We went ahead with life. Carly continued with the rash. On and off fevers. Back and forth to the doctor. Who was still convinced this was a nasty virus. He decided to place her on a course of steroids. She took them for 10 days..(I think)... I was pleasantly surprised to see the rash going away. Woo Whoo! Things were looking better. Wham! another ear infection. Back on meds for 10 days. This time. Carly started throwing up. Her fevers were coming more and more often. Going higher at night (like always) and then suddenly breaking into a cold sweat.

I tried my best to keep this little girl happy. We played...when she felt like it. But this was the best way to entertain her throughout this ordeal.


Yes, this is her doll's stroller. My tiny little 21lb 32 month old daughter fit quite nicely in it. Don't you think?

I pushed her through this house for hours on end. This would make her so happy. I actually got to the point where I'd have to push her around while walking on my knees. It just killed my back.

Stay tuned for the continuation of Looking Back 2004

Looking Back 2004

August, 2004. We were on vacation in the Smokey Mountains. A beautiful place. The perfect place to go and relax 6 weeks after Carly had undergone her 2nd open heart surgery. Carly was 31 months old in this picture. She was healthy. We were happy. Our family had such fun on that vacation.

We went to Dollywood. Carly had so much fun trying to climb that tree. She was is such a great mood that day. We spent most of the afternoon hanging out. Waiting and hoping to see Dolly. We didn't see her tho.,!


We hung out at our hotel. Played in the pool for hours at a time. Which Carly thought was too much fun. She loved it!


Paul and Brad exploring during one of our many sight seeing adventures up in the mountains.
Yes. We did see bears. I even snapped a couple of pictures, but for the life of me, I can not find them.


I believe that Paul was acting silly trying to get a smile out of Carly while she sat upon this rock watching all the crazy people jumping over a stream. Poor little girl. She was getting a runny nose on this day. It was our last day of our vacation. We spent time in another park up in the mountains. We would be heading North that night.


A picture of Ashleigh, Carly and me.



Before we headed north. We stopped at Brad's buddy's house. His family moved to the northeastern most part of Tennessee in 2002. Wish I would have snapped a couple of pictures going up their mountain. Holy cow...it was quite a scary drive up, up, up a tiny little narrow "path". (as the kids referred to the road) Honestly, I was too scared to even think about pulling out a camera as we headed up that windy tiny road, along the side of the mountain.

At this point, Carly was getting very whiny and clingy. It was quite obvious she was getting sick. Poor baby. This pic was taken just as we were getting ready to head further north on our journey home.


Stay tuned for the continuation of, Looking Back 2004.

*you finally see my face* ;o)
**Sorry for the poor quality pics. This was my 1rst digital camera and it was NOT a good one.