"Grieving the loss of a child is a process, it begins the day your child passes and ends the day the parent joins them."

Thursday, August 26, 2010

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.


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.


Anonymous said...

Hi, I am the anonymous commenter. I posted that comment from my phone and didn't realize i clicked that option instead of my google account. I really appreciate your answer, and it makes a lot of sense. I hadn't thought about the fact that your older children would be buried with their own families someday, i guess I was just thinking about the present. I'm sorry if i seemed at all insensitive, as that was definitely not my intention. You made the decision for your family and I respect that. I do not have a special needs child (but I am a mother to a 2 and 4 year old) but I can understand your desire to be buried in that manner. It makes sense and i think its admirable. I am so sorry for your loss and again, hope that I did not offend you.

Unknown said...

No worries. I was not mad or upset at your comment. And thank you for fessing up! ;o) You didn't offend me in any way. Believe me, I've had people say all sorts of unbelievable things to me since we lost Carly. What you said is really nothing in the grand scheme of things.
Hopefully, you are not offended by my response. That was NOT my intention.

Anonymous said...

I was not offended at all, promise. You provided a great explanation (not that you NEEDED to) and it made see things in a whole new way.

Denise said...

I have to admit when I very first saw the picture of the headstone, I too wondered about your other kids. I am so glad that this whole "anonymous comment" thing came about because I feel that it gave you the opportunity to explain it more fully. After reading your second post about why it is just you, Paul and Carly, I completely understand it now. I also hadn't thought about the fact that your other kids would have their own families some day, duh!! Everything you just wrote about the relationship that Carly had with all you is so beautiful...that is exactly how I feel about Ella and I hope that as my older daughters grow up, they will feel the same way as Ashleigh does. Thinking of you ALWAYS!!

Denise said...

Oh, I am very impressed that the "anonymous commenter" fessed up too. Most people wouldn't and that gave her a chance to explain her side and that she didn't mean anything bad by her comment. Great job!!

Kelly said...

I think the headstone is very fitting. As the parent of a child with special needs, I too, have thought about the future. And I completely understand how you feel, as I share those feelings too. It is my hope that my two older siblings will take care of Landon, but by my side is definitely where I would want him.

Thanks for sharing your feelings with us all, Joany. I can only imagine how you feel. But you sure put things in perspective.

Way to go "ANONYMOUS"! It definitely takes courage to ask those difficult questions and even more courage to come forward. Good for you!!

Debbie @ Three Weddings said...

I'd missed the post with the headstone until now. I love it, though. I love your response, too. I'd never really thought that far in advance, but I have to the point that one day Peanut's sisters will have to be there for her instead of hubby and I.

And, yes, I can relate to you 100%

Unknown said...

I hadn't read the comments on your previous posts. You are so right, that those who do not have a special needs child cannot begin to understand the unique relationship that we all share with them. I have often had people comment that we act as though Laynee and Moise are more special than the other children. The response in the mind of my 4 "normal" children is simple, they ARE more special. I have a post on my own blog that touches on this topic. It is titled "Beautiful Shades"

Stephanie said...

Joany I was here this morning and didn't have time to leave a comment. I was so moved by the headstone. I thought it was so personal , with all the things that just mean something to you and your family. Like the order of the names, it brought me to tears because there was so much of you all in there. It's perfect .

My kids have that kind of relationship with Emmie too, NOT with each other but definitely with Em.

I posted a post a few days ago don't know if you saw it. We had some sweet butterflies visit us and I couldn't help think it was Carly and Kristen. If you feel up to it come take a look.

Love and hugs .

Bulldogma said...

Joany - I absolutely LOVE the headstone!! It is so entirely beautiful for so many reasons. Thank you so much for sharing.


Groves said...

Now, if only more conversations in "real life" (not that blog life isn't real - hopefully you know what I mean) went this way!

I agree - way to go to the anonymous commenter for making herself known and continuing to clarify, and way to go for Joany in answering and shedding more light as she did.

Somehow there's a freedom to express more of what we really feel in these blogs and comments, a freedom that can be hard to come by elsewhere. Maybe it is because people who stay and read and comment here are ones who welcome talking about real life and real pain.

All I know is, it is great to see these kinds of healthy, open exchanges.

Thank you, Joany, for continuing to write in the midst of suffering and loss. Seems like it might be even more of an outlet than a grief counselor, in some ways - especially in connecting with others who have endured death and know, deeply know, the agony you are going through.

I appreciate you.

Cathy in Missouri

Kristin said...

Thanks for this post!! As we just buried my dad and picked out a headstone last week, we began to think about our future (my hubby & I) and the need to pre-plan a few things. And I love this way for Carly to be with you and Paul. I never put any thought into the 'placement' (can't think of a better word) of burying Max someday. This is perfect.
And I love Ashleigh's comment about more or less taking over the motherly role for Carly if you had passed first. I see that already with Max's big sister. It is such a special bond!

kim knipp said...

I have wanted to post a comment for a long time. I write it, delete, try again...Carlys death broke my heart, for so many reasons, of course. Sweet Carly, not fair.
One of the reasons is because of the pain I know your other children felt. My kids love Will so much, they already argue who he will live with when mom and dad are to old (no fights over who takes care of us--guess I better start looking at nursing homes for ourselves!) So I guess that is why I finally am able to find the words to comment today.
Siblings of a child with DS are so lucky, funny it was the only thing that I worried about when Will was born with DS, how they would feel...hee hee, if I only knew. They are so proud, so in love.
Your headstone is perfect, 100%.
I think of you often, I carry Carly in my heart.

Cathy said...

I think it is perfect and exactly what I would have done. I think of you all the time especially when I listen to The Climb with my special little girl.

I Just Love You said...

i don't think you need to explain yourself. what one family does to celebrate those they love may be odd to another family. i know when my uncle chuck died and we did the "wargo wave" at his funeral, we probably got more than a few strange looks. but it was important to us, as important as this headstone is to you.