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

Tuesday, January 18, 2011


Thought it was time to "update" the blog, before I lose some followers.

Most people believe that time heals all wounds. Well, after nearly 9 months after losing a very important member of our family, I'm here to tell you that the whole, time heals all wounds thing is a big bunch of bull!

I'm amazed at those who believe that we should be "over it" by now. That those people can possibly think that we are over it, makes me physically sick. Not to mention that they actually say this to us. If they don't say that...they do ask quite often, more often than not, "it's getting a bit easier now isn't it?" NO. Okay. NO. This is NOT getting easier for us. It gets harder every. single. day! Every day that goes on without Carly, is another day further from the very last time we held our girl. It sure isn't getting any easier.

Not a day goes by that Carly isn't on my mind. Almost every minute of the day actually. I wake up with her on my mind. I go through the day with her on my mind. When I do finally fall to sleep at night, she is on my mind. I dream about her while I sleep. I wake up thinking that she's still here. Only to have reality slap me in the face.

We find ourselves very envious of others. Others with small children. Especially, other people who are parents to a child born with Down syndrome. I hate that envious feeling. We both hate that envious feeling. But envy, we have.

One would have to know Paul to know that he isn't the type of person who approaches people (strangers) to strike up a conversation. My family members and close friends know this of him. Others don't. And lately, Paul has been seeking out others. Others that he/we encounter while out and about. Others who have a child with Down syndrome. Oddly enough, we are finding that we are seeing more and more parents out with their kids who are sporting that extra chromosome. Probably they were out and about before, but we just didn't always notice them. Although, I believe it's because we are missing our little side kick.

I seem to have a little bit of a harder time with striking up conversations with other parents who are out and about with their child with Down syndrome. I do eventually speak, but I'm not the one who seeks them out. Which is kind of a change of rolls for us.

This week is proving to be just what I thought it would be. Difficult. A few months ago, Paul and I ordered a new bedroom set. It's to be delivered in a couple of weeks. I've put off, the cleaning of our bedroom for the past couple of months. But, I'm in there this week trying to get things in order. My bedroom has be neglected the past 9 months. I just didn't want to face having to "clean" it up/out. And trust me, it shows that the bedroom has been neglected.

Carly shared our bedroom with us. Since the day she was born. Her little toddler bed is still in our room to this day. And soon it will be removed, to make room for our new furniture. I can't imagine how that is going to hit us. Removing her bed. We shouldn't have to be removing her bed for the reasons at hand. We should be removing it and replacing it with a regular twin size bed. Or better yet, putting her in her own room. But just removing it, that just doesn't seem right to me.

What to do with all of Carly's clothing? How am I going to remove all her things from both of her dressers? How will I remove her clothes from the closet? These question are the reason that I have not been able to get our bedroom into order. It has just been to hard for me. Carly's clothing will be the very last thing that I remove from our bedroom. I won't part with her clothes tho., They will be placed in totes and put into storage. Eventually, I would like to find someone who can make a quilt or two or more, (she had a TON of clothes) out of her clothing. Ashleigh came up with that idea and we think it's a great one! Sorry, call me selfish, but I can not part with her clothes. I just can't do it. Even tho I know that other children could greatly benefit from those clothes. I can't part with them. I've always donated Carly's clothes to Good Will, but not this time. Not going to happen.

I told Paul the other day, "if we are changing the furniture in that bedroom, then I want the whole thing changed." (as in, painting the walls, getting new curtains and bedding.) And so, we're going to be very busy the next couple of weeks. Change is suppose to be a good thing, sometimes. Right? We'll see. I may be completely pissed off after we make this big change in our bedroom.

I leave you with the following video of Our Dancing Queen, Carly! Yes, I have been watching her video's. They make me happy and sad at the same time. Missing her so very much.


Nicki McFadden said...

You know I have no idea how you feel inside, I can only imagine. What I can't imagine is people thinking that you will "get over it".

I don't blame you one bit for not being able to give away Carly's clothes and I don't think it is selfish of you either! The quilt idea is great. I have actually seen one done before.

We love you guys dearly!!!!!

amyl4 said...

I can't imagine how hard it is to move Carly's things out of your room. As I read your post, I was thinking that I myself could not do it all at once. Is there a room that you can move Carly's dresser into and leave her clothes in for now? Just wondering, I'm thinking if you just move slowly with things it wouldn't be as difficult to do all at once. I'm in tears reading your words and I want you to know that you and Polly are in my thoughts and prayers daily.

Stephanie said...

joany I would never be able to get rid of the clothes either. The quilt sounds like a beautiful idea, for someday.

i watched the video with Em she didn't blink once. thanks for sharing that.

ashleypmo said...

I don't think it's selfish of you to keep Carly's clothes at all. And I think the quilt is a beautiful idea!

Becca said...

I think making a quilt would be a WONDERFUL idea. I loved the video, and am glad you're still blogging.

Kristen said...

Aw, what a beautiful ray of joyful sunshine she was in your home. Seeing that video of her dancing and listening to your laughter of a time so much easier I think it must be a tremendous feeling of fullness and emptiness your heart experiences when watching this...filled with a gratefulness to have had that moment but so incredibly sad to know all those moments to be had with Carly will only be lived out in your mind now... no new ones coming and being created. I can't imagine anything harder in life than that.

9 months seems so short, really not all that long ago she was here, yet it's a long to live without someone you love so much. Much of the grief process seems to made up of extreme polar opposite emotions...it's happy but yet sad recalling the memories. Time feels stagnant yet it passes on by quickly. Desiring the pain of it to not feel so hard yet fearful of what time will do to make that happen...In the words of Anne Blythe (Anne of Green Gables, when her firstborn daughter Joyce died) "It's knowing that someday this won't hurt as much that is the hardest". Fearing time will make the details slip away. An exhausting roller coaster ride it is, no doubt. Our hearts were truly never created to bear this kind of emotion. It's larger than the mere dust we are made of. This is truly not our Home, here on Earth. Just a temporary place. And why Carly had to go to our true Home first, I don't know. But she waits there I think with many surprises for you and with much giddy excitement to show you what Home really is suppose to be for our hearts.

Always *hugs*

Kristen said...

P.S. I don't think it's self-ish one bit for you to keep her clothes. And the quilt idea is a beautiful one. I know how hard it is for me to part with some of Cayman's out-grown clothes...the tangible memories they feel like they are when I sort through her bins of old outfits and remembering which ones were my favorites on her, which one she wore on our first family vacation, to the zoo, etc. And I feel a sting parting with those clothes over my living daughter. How much harder it is for you. I think Carly's clothes, all those tangible memories they provide are meant to stay with you.

Brettina143 said...
This comment has been removed by the author.
Kristen said...

Oops, I didn't proof-read before I posted...

First comment of mine in 2nd paragraph should read:

9 months seems so short, really not all that long ago she was here, yet it's a long *TIME* to live without someone you love so much.

Brettina143 said...

Joany, you and Paul will never lose me...no worries. I feel now you are part of my family..we talk about you and Carly and Paul. Friends and family that are not even on FB asked me at times how you are doing. I am greatly affected by your story. You see my neice passed suddenly at 18 last December..Andrea, and my dear baby brother Mark has limited time left as he has cancer. Drs say he has 2% chance to live 2 years. I know his passing is inevitable but I know it will be a pain I will have never experienced and I afraid to lose him. I will be there with him and will try to comfort him. Life sucks!!!!!!! sorry...you grieve as long as you life as far as Im concerned...its your heart. As long as you can warm your heart with her smiles and giggle as she dances you will survive. Love to you Always!!! <3

Kelly said...

A quilt.....that's a fabulous idea! Thanks for sharing the video....glad to see this update!

Heather said...

Will never stop following Joany.in for the long haul.

I have no advice.No words of wisdom.Just the experience of my a few of my friends,finding their way in this world without their love also.and what I see is there is no right or wrong way to grieve.And it can change day to day.Even hour to hour.This is your process and anyone who would judge and place a time line or opinion on what you should or shouldn't do with Carly's clothes,just is clueless.

The quilt is an awesome idea.One for all of you in fact.Maybe a bedspread size even!

The video made me smile and cry ... sending you love Joany from a far.

The VW's said...

Praying that the room change goes well for you, and that you are given strength to do all that you have to do! I hope you love what you end up doing too!

As for getting rid of Carly's clothes and things, there is no way that I could do that either! I keep so many of my children's things and I still have them here with me! I love the quilt idea though!

Everyone is different and no one has the right to tell you where you should be at right now emotionally! Your loss is a HUGE one and I pray that you are given peace every day, but I know that you will always have a HUGE hole in your hearts and lives! Wishing that you didn't though.....Love, Hugs and Prayers!!!

Lacey said...

Who are these morons that actually say these things to parents! Stupid people, obviously!
I think its a fantastic idea to make some quilts out of her clothes. And I would keep every ounce of clothing of Jax, forever!

invisiblecities said...

Hi Joany,

I found my way to your lovely blog a few weeks ago but could not read too much. It was all too close to my heart and that has been a very raw wound these days. Tonight I sat and read your incredibly touching story and wanted to tell you how much I understand and feel your pain. Even though it is completely individual: the circumstances, the choices (when we have them), the reactions to the grieving; when you share the experience of losing your child there is a connection there few will know.

Our Willa passed away 6 months ago at 2 years, 3 months old. Each day since has been a challenge to keep on living. But one I feel absolutely engaged in. Your Carly was such a beautiful girl. A darling. A dancer and clearly the light in your family's heart. She still is and will continue to be until you see her again.

I promised Willa and my husband that I would fight to live in the light Willa gave us. I promised to honor her memory by sharing her light with others. Thank you for doing the same. Your words helped me today. Even if to say, you are not crazy for feeling like such a mess. Cause I do. Every day. But knowing that I can check in with you out there, that other mothers and fathers and sisters and brothers are dealing with this terrible pain makes us all a little stronger, I hope.

I am thinking about you and all our beautiful children who passed so young. I'm here and listening and wish you and your family the very best.

Heather from Living in Invisible Cities

nicole said...

It's a cliche', but I can truly only imagine what you feel. It seems natural you would have overwhelming grief after having overwhelming love for Carly, and hopefully that is somewhat of a consolation to you - that you surrounded her with love.

my family said...

I think it is a wonderful idea to keep her clothes for a quilt, maybe you can have a couple more made for A and B too. What a great way to preserve carly's memories.I loved this video, how can it not put a smile on our faces?

Anonymous said...

She's beautiful. Keep the clothes and make a beautiful quilt.