An explaination

I was asked to post this by one of my readers. Below, way down below, is my reply (left on my comments) to a comment left on this post, The music in our hearts forever . As you will see, it's to an anonymous reader. An explanation of sorts. Even though it's very hard to explain.

No, I wasn't angry over the comment you (anonymous reader) left. You asked and expressed your concern regarding our other children. Grown, children. And I answered best I could.

This morning, after reading through some comments on my blog, I asked Ashleigh how she felt. If she felt left out, regarding how we buried Carly. How she felt about the headstone; having Carly on the same one as ours. You know what her response was??? " That's how I would have buried her if things would have gone as we had hoped. If Carly would have lived her life out beyond you and dad". So you see??? This is how it would have been regardless of who passed first.

Our older kids had a very special relationship with Carly. Very much, unlike the relationship they have with each other. This is what a special needs child does to a family. They form relationships with family members unlike any other. That's just the way it is. I can't explain it. I don't really understand it and I don't know why or how it works that way, but it does. You mothers and fathers out there who read this blog, who have a special needs child can relate 100%.

And an extra little tid bit for ya...Ashleigh and Brad both placed items in Carly's casket the day of the funeral. That way, a part of them would always be with their baby sister. Ashleigh placed a ring on Carly's little finger. Likely one of the hardest things for any sister to do. Pick up your baby sister's little finger while lying in a casket and placing her favorite, "sissy" ring on her. The ring was one of Carly's favorite things of her sissy's. She would put that ring on her finger, even tho., it was way big on her.... and prance around the house with her little fingers folded up, so the ring would stay on, saying, "sissy, sissy, sissy". Brad placed a picture in the casket of him and Carly. It was in a frame which said, "Brother & Sister". The picture was taken a few years ago, while Carly was still on chemo, but the worse part of the chemo was behind us then. She look GREAT. It's a beautiful picture of the two of them. She was sitting on his lap and the love you could see between the two of them was quite obvious.

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Below, in red is my response to the "anonymous reader". As I said above, I wrote my response in a comment to this post. I've only copied it on to today's post, per the request of one of my readers. I don't think it's going to post on the blog in paragraph form. When I preview it, it all runs together. But, you'll get the just of it.



Dear anonymous reader,

Our other two children are grown; Ashleigh is going on 24, Brad is going on 21. We, and they fully expect that one day they will have their own families and as you and I...they will be buried with their spouse.

Furthermore, Carly was OUR little girl. We expected her to live a very long life, until we passed away, to which she would have gone to live with her sister~yes, we already were thinking that far ahead. You kind of have to when you have a special needs child. We already knew that she would be buried between us some day. Of course we NEVER dreamed that we would be burying our baby before us. And, FYI...we do have another grave next to mine, lord forbid something were to happen to one of our GROWN children, before they have a family/spouse of their own.

Carly was every bit of my life. I lived and breathed that little girl. Did that mean I loved her more than my other children. NO. But the love and bond we shared was much different than the love I have/share with our other children. That being said, Carly was going to forever be dependent on me/us. Believe me, that changes things. I don't know why or how, but it does.

Unless you have a special needs child, who you have seen fight and fight and fight to survive...and indeed survive over and over, countless health issues you will never understand where I'm coming from here.

A bond between a mother and a special needs child is quite different. I believe it's just as I explained it above.

Ashleigh used to mother Carly quite a bit. I had to remind her often that "I" am Carly's mom. To which Ashleigh would reply, "no offense mom, you aren't going to live forever. Some day Carly is going to be mine" So you see...the bond with Carly was a mutual thing. We all knew she would forever be in need of all of us.

Ashleigh and Brad were in complete agreement as to "how" Mama, Paul and Carly would be buried. For that matter, so were many family members and friends.

Another thing. Ashleigh and Brad were NOT left out of this. Both their names, in Carly's point of view, are on the back of the stone. "Sissy" & "Bubba", just the way she always referred to them. That's what THEY wanted on the stone.

I hope, if you do in fact have a special needs child...you're thinking on the future, which includes figuring out how/where you want your child buried one day. Hopefully, your special needs child, if you have one, lives a long and healthy, happy life. We weren't that lucky.

Like it or not. This is the way our entire family thought it should be. Me, Carly and Paul forever lying next to each other one day.

The music in our hearts forever.

Today our baby's headstone was delivered.
Actually as you can see, the stone is also for Paul and me.

When we first went to the monument mason, I
described the type of stone that I had envisioned.
He sat at his desk while we were talking
and drew up this stone.

We wanted this stone to be really special.
Including Paul and myself.
The three of us together, forever.

I also wanted my name to the right (your left) of Carly
and Paul's to the left of her, (your right).
That's how we slept in bed each night.
The mason did question that. I guess
normally, the name of the man goes where
I wanted my name! Oh well...
This was the order we slept in each night
and this is the order I wanted us buried in.

My opinion; it's PERFECT!

Carly's heart is etched in purple; her favorite color,
along with her name, date's and the music notes.
Paul and I wanted Carly's heart to stand out,
to make it a bit more special.
And stand out, it does.
We picked red and purple roses
because red and purple were
her favorite colors.

We all think it's BEAUTIFUL!
But that's just our opinion.

The following picture is of the back of the stone.
We thought this phrase was appropriate.

"mama, Paul, sissy & bubba",
was placed on the stone in this particular order,
because this is the order that Carly
would YELL our names out.
It was always,
"mama, Paul, sissy, bubba".
And she said lickity split.

Most of you know, Carly refused to
call Paul daddy, dad, dada. She used
to call him dada, but about 3-4 years ago,
she stopped. She was going to
Vacation Bible School that summer.
Her class had a lesson on the apostle Paul.
She put two and two together.
And that was the END of her
"dada" days. He was "Paul" from that day
forward and NO ONE
was going to change that.

So, as you can imagine, today was a another tough day for us.
Another day of living life without our baby girl.
Another day of knowing we will never be the same again.
Another day of realizing, this is it. This is final.
And we do realize that,
However,
Carly will be the music in our hearts forever.

Grief Counseling

Yesterday, Paul and I were suppose to start seeing a grief counselor. Well, it didn't go as planned. I was a little ticked off. But, what else is new these days?!

After several weeks of trying to contact a group who supports bereaved parents, I threw in the towel. They wouldn't return my calls or emails. What a kind of support group is that? Not one I want to be a part of.

Finally, I put a call in to grief counselor that our family doctor recommended. Gave the NP (nurse practitioner) all of our insurance information and a brief summary of why we were in need of grief counseling. The NP then told me that she would contact our insurance company and get everything pre-approved. The very next day my phone rang and low and behold it was the NP. Except what she told me..floored me and her as well. She said, "I'm sorry Mrs. George, your insurance company will not allow you and your husband to be seen here. They say we're out of their network". Great. Back to square one!

Nearly two weeks ago, I called our insurance company and asked them just what we were suppose to do? We needed a grief counselor. I was told that we could only see who they told us we could see...so I then asked, what if we don't like this counselor? What if it isn't working out the way we think it should be? Or what if I don't care for the counselor and Paul does? Or, what if we would rather be seen one on one and not together? Weeelllll, the answer was, "call back and we'll have to re-pre-approve you both. UGH!

Last weekend I finally received a call from a grief counselor who is "in network". Except, trying to find a time for Paul and I to go together seems to be nearly impossible. (Paul has crazy work hours!) But, we were all set up to go last night for our first session, which was scheduled at 8pm last night. At 5pm I start calling Paul. The calls went to voice mail. I called again and again and again...all calls went to voice mail. At 6:17pm, he finally answered. He FORGOT! There was no way he could make it from down town Detroit in time. Sooooooo, now to reschedule.

The grief counselor suggests meeting with us both first and then doing one on one sessions. She told me that we could do which ever way we wanted, be it together, or separate. She also mentioned that people grief so much differently and men and women have different ways of grieving too, she finds it actually does each parent better to meet with her one on one. So, now were back to trying to find a spot on her schedule. It doesn't help that she is going on vacation all next week. I guess we've hung on this long, we can wait another week or so.

After Paul finally got home last night. He said out loud, what I knew he had been thinking for the past 4 months. God it kills me to type 4months. But, tomorrow will be exactly 4months to the day of losing Carly. It just so happens to be Paul's 45th birthday as well. I'm betting that tomorrow is going to really suck. More so than every Friday since April 23. Okay, sorry got off track. Back to what Paul said. I knew eventually this would come out and last night it did. His words to me were, "Joany, I did CPR and brought her back". "I saved her". "What happened after that"? I knew this was eating away at him. But it's the first time he's ever mentioned it. He has so much to work through. As we all do, but with him, I fear that he feels he failed her. I tried to talk to him in a way that would ease those thoughts. I told him that he did save her that day. She would have passed away in our living room had he not been home. She was not breathing and was blue/purple all over her entire body. He did save her. We know now that she had a very narrow window of opportunity there to save her after what we all assume was cardiac arrest (we still have to meet with the cardiologist). For some reason that we will never understand..things went terribly wrong in that ambulance.

I'm hoping that grief counseling will help us both. Especially since, it will soon be Thanksgiving, Christmas, New Year followed by Carly's birthday. We need to get ourselves ready for some very rough times ahead. We need to have some tools in place to help get us through. Right now, neither of us know just how to go about that. We are having a hard enough time getting through each day.

Donations to CLF of Michigan

I've been asked a couple of times about the CLF (children's leukemia foundation) 5k walk/run taking place on Saturday, Aug 14. People are wondering if they can still donate. The answer is YES. Please do, if you are able to.
Click here CLF and then click the donate button and follow the directions.

This is a wonderful cause to donate to. CLF of Michigan provides support to families who have a loved one battling leukemia or another blood disorder/cancer. They help with utilities, mortgage payments, car repairs and even provide families gifts for children with siblings or a parent who is battling a blood cancer, during Christmas time. We never took advantage of their services. Came awful close a few times, but we'd fine a way financially to manage. It was very difficult at times, but we always thought that some other family may need more assistance than we did.

If you feel it in your hearts to donate, it would be greatly appreciated.
Thanks!

Why?

Seems like the word "why", keeps popping into my everyday life now. I hate that word. Likely because there is no answer to it. Every single day, I sit and think to myself, "why"?

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Why did a seemingly healthy, precious little 8 year old, suddenly die?

Why were there no warning signs that anything was going on with her heart?

Why didn't that ambulance get her to UofM?

Why could the ambulance only get her to a small community hospital?

Why didn't things go differently in that ambulance?

Why didn't I climb in to that ambulance with Paul?

Why am I left, here to go on without her?

Why should we even attempt to go on?

Why bother getting up each day?

Why eat?

Why sleep?

Why not sleep?

Why can't I sleep?

Why don't I cry as often as Paul?

Why does he cry as often as he does?

Why do I feel guilty for not crying?

Why do I feel guilty when I do cry?

Why do I try to hide my tears?

Why can't I watch video's of Carly?

Why does the sound of her voice on those video's bother me so?

Why, if there is a God, didn't he save my precious girl?

Why, if there is a God, did he do this to our family?

Why do people avoid us?

Why do people think we should be 'getting back to normal'?

Why? Why? Why?

A question that we never seem to get an actual answer to. Guess that's "Why", I hate it so!

Walking Thru the Gates of Hell.

Many times, as I would sit at Mott's Hospital with Carly going through one of her many hospital stays. I often times would see families who were going through so much more than we were. Even though, many times, Carly was teetering on the edge of being sent to ICU.

As I sit here today and recall those families that I encountered back then. The families who were just told that their child had 3 weeks to live. Yep,,,witnessed that. That their child had relapsed and would have to begin chemo again. Yep,,, witnessed that too, more times than I can count. Or the families who had children being sent to ICU with very grim outlooks. Course, from a heart mom stand point, I saw kids in ICU one night, but the next morning they were gone. Which I quickly found out was NEVER a good sign. I've been chased out of the Cardiothoracic ICU more times than I can count, due to a child coding. All I could think was, "thank God it's not my kid". Even though she did have her share of close calls. Way too close. I must admit I would think, "glad they are the one's having to go thru this HELL, I couldn't do it".

I would often sit in our room, thinking just how bad we had it. Pretty much feeling sorry for myself. Even though, someone else was getting ten times worse than we were. I was just so relieved that it them and not us.

One night, Carly's oncologist came in to our room. Carly was inpatient with a fever. All you cancer moms know, a fever over 100.5 bought you a sure fire ticket as "inpatient". I was a wreck. We were waiting for blood cultures to come back to see if in fact Carly was positive for a blood infection. While heading to the bathroom, which at Mott's is down the hall and could be quite a hike, depending on what room you were in. Anyway, I overheard a mother, a very young mother, being told by the "team" of doctors, that her daughter had only 3 weeks to live. The daughter, I'll call "E", was well aware of what was going on. "E" was 6 or 7 and had a brain tumor. Chemo wasn't working on her any longer. I got to the bathroom and was just about ready to throw up, when someone knocked---in need of using the bathroom too. I quickly washed my hands and practically ran back to our room. I wanted to forget that I had just heard those words about "E". I must have looked like a ghost, because the Oncologist and nurse asked me if I was okay. Once the nurse left, I told Carly's Oncologist what I had heard. She apologized to me for having to hear that. She said, and she was right, "the door should have been closed". The words that our Oncologist said to me that night, I will never forget. She said, " just when you think you're walking thru the gates of Hell...there is always someone else who can top your pain and suffering".

Later that night, I made a candy bar and coke run down to the floor below. You might know, I got to the elevators and there sat "E's" mom. On her cell phone. She was crying and talking to her mom. I kept hoping those doors would open. But they took forever. I didn't want to hear about her HELL. I had my own HELL at the moment. But, I heard everything she was saying to her mother. "the doctor gave "E" 3 weeks tops mom. the tumor took out her brain stem". At that point, I almost fainted. Finally the doors opened. I was on the elevator bawling my eyes out. Realizing, that poor mother was about to walk straight thru the gates of HELL. Losing her child. Being all alone while being told. And, as I later found out, she was a single mom.

Those families, all with different stories pop into my head every so often in the past 8 years. I would look at Carly and just know that we were truly blessed to be given this little girl. Blessed that her life had been spared 5 different times. Thankful that I didn't have to know the HELL those other families knew.

After 8 years, I never dreamed I would be sitting here today. Having to face life without Carly. I thought that she made it through all of her health issues with flying colors. So did her doctors. And then, in just a blink of an eye, she is gone. No warning. Nothing. Gone.

We are finding out just how a person goes on while walking thru the gates of HELL. It's not easy. It sucks. It gets harder and harder every day. None of us are sleeping very well. Some of us aren't eating well. Brad just told me he hasn't slept in 2 days. He is full of anger. Thanks to our new found HELL. Paul is barely holding on. Me...sometimes I'm full of rage and other times I just feel numb. Ashleigh is very pissed off. We are all finding out that we don't have much happiness anymore and are very much doubtful we will ever find happiness again.

Now we know just what it feels like to be walking thru the gates of HELL!