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

Wednesday, November 24, 2010

Last year...

..at this time, Thanksgiving that is, we had a much happier home. Full of joy. Full of happiness. Full of laughter. Full of Carly.

I thought I'd share a few posts from last year. They are "Thankful" posts. Much different posts than this year.

For post 1 click here and then here for post 2 ending with this, click here for post 3.

We're doing things a bit different this year. It likely wont feel much like Thanksgiving, and we aren't in any mood to give much thanks for anything this year, but we will try. Try to at least, get a traditional meal. We will not hide and cower away. Although we are very tempted. As I said, we are doing things different this year. We decided to change things up a bit. We will be going out to dinner with my parents and my brother and sister in-law. Normally, we all gather at my parents house. This year, it would just be to hard to be at "Papa" and "Gramma's" house. Their home was Carly's second home.

Carly will be in our hearts, as she is every day. But no one is up to doing the whole dinner thing like we usually do. Believe me, we are going to miss that little girl something awful come dinner time. Carly had this thing, her thing and she did her thing every single time we ate dinner. Especially if we were at my parents house with the rest of our family. Carly would start with me first. She would point at me and I knew what she meant...it was time to go around the entire table while she pointed at everyone and I said who they were. Not sure why she had to do her thing every gathering, she knew who everyone was...but, like I said, it was her thing.We did this EVERY SINGLE holiday gathering, until we ended back with "Carly" Oh my gosh how we will miss that this year.

I sure wish I could be singing that Turkey song with Carly again this year. Just like we did last year.

Despite my feelings toward the holiday this year. And despite my broken heart, I wish you all a Happy Thanksgiving. And remember, life has no guarantee's. Take nothing for granted.

Monday, November 22, 2010

How are you?

I get that question quite often these past several months. Sometimes, people don't ask and I can feel them 'eying' me. Trying to look into my eyes. Trying to figure out by the look on my face. Often times, they don't say anything. They just look. Study. Which is okay, but I'd much rather be asked than have others try to surmise for themselves. Although I do realize that some people are scared to ask. No doubt, fearing the response I may give, or just not knowing how to ask how I'm doing.

When the question is asked, I'm not always sure how to answer. Do people really want to know? Are they ready to hear how I, really am? More often than not, I know people aren't ready for what should come out of my mouth. I should be matter of fact with that question. But, I find myself often times beating around the bush. Not always, but quite often. I think I fear what their reaction will be as much as they fear my reaction to their question.

One thing I know through this whole grief process, is that I am suppose to tell it like it is. So say the "professionals" Tell people how I feel when asked. The truth is, if I did say just how I was feeling...I'm quite certain it would freak people out. But I do tell it like it is...every once in a while. I feel like I'm the one walking on egg shells, trying not to upset someone with my feelings. Doesn't that sound a little off? Aren't other people suppose to feel that way? Weird...but it's true. I feel as though I have to watch what I say to people so they don't get scared and run with their tails between their legs.

Here is one way I have described how I am, "Carly was the center of our family, she was our rock solid center. Now, our center has been dropped out from under us, leaving us hanging by threads." That pretty much sums it up. Some people don't understand that. And that's okay. But for us, Carly was our little surprise. Our second family so to speak. Well, I guess when you think about it. Two people who remarry after being divorced for 7 years and have another child, I guess it pretty much is a second family! Everything in our lives revolved around Carly. EVERYTHING. From loving her, to playing with her, teaching her, advocating for her rights, to nursing her back to health through many of her major illnesses. For 8 years...Carly is all any of us knew.

Paul and I attended The Compassionate Friends group recently. This group is geared toward parents who have lost a child. Any age of child, not just a small child. We went to our first meeting last week and it was very emotional. We shared our story with 10 other people. We passed Carly's picture around as Paul and I spoke of her. There was not a dry eye in that room. As our story wrapped up, we were asked "how are you doing now?" I answered, "I feel like part of me died with Carly." And honestly, that is how I feel and I do believe it to be true. Anyway... a newly bereaved mother pipped up. "Well you didn't die. You're still here." This mother went on to really preach to me. Almost pissing me off. But then I realized. This poor mother is still numb and very much in denial. It had only been 1 month since the loss of her youngest son, who was 18yrs old. I realized that she's still numb from her loss. Her son and his girlfriend were killed in a car accident in October. I was familiar with the accident because it was on all the local news casts. The leader finally spoke up, letting this mom know, in a very tender way, that I was in fact feeling like I died along with Carly. That I'm at the part of grief and mourning where that's how I feel and that we all grieve in a different manner. Some quicker than others. Some take longer than others. Most of all, grief never ends. I was thankful that leader spoke up. I could have easily gotten very angry at this mother. So yeah, I KNOW I didn't die. But I'm quite certain, part of me did.

It's a hard thing to imagine losing a child. Who even wants to imagine that? Any child at any age is just WRONG. Nothing is right about parents meeting a couple times a month talking about the loss of their child. Nothing is right about parents having to seek one on one counseling, due to the death of a child. This is not the natural order of life. It is not suppose to be this way. But this is the way it is for us now. It sucks. It sucks really bad. But, ask us how we are if you are wondering. If we cry, then we cry. We are suppose to cry. It's not a bad thing. It's actually a good thing when it comes to the grieving process. Crying is healing. Although, we will never really "heal" from this,,,(that's my personal opinion) we will however, find a "new normal". A "new normal". I HATE the words "new normal" I suppose it goes back to always hearing it from our doctors and nurses at UofM. Having a heart baby was a "new normal" Having a child going through chemo for 26months was a "new normal" Having a child finish chemo after 26months was a "new normal" Life after the death of your child is a "new normal" I'm so sick of "new normals" But, it is what it is. Who said I have to like it?

If you really want to know. If you really are concerned. If you are unsure about asking, just do it. Ask me, "how are you?" I just can't promise you tears will be absent from my answer. But I really don't mind being asked. In fact, I like people to ask because I like to talk about Carly. As awful as it was to lose Carly, she is still and will always be, my daughter.

Wednesday, November 17, 2010

I find myself wondering...

I find myself day dreaming quite a bit these past several months. Most recently, I day dream about how Carly would be today. Today, right now. November 17, 2010. Wondering how much she would have changed. How much she would have grown. I do this quite often. Sometimes I shouldn't, because I do it while I'm driving. Thankfully, I don't really go anywhere. Just to counseling every week and to the cemetery and to my parents. That's about the extent of my driving. Probably a good thing too, because of my day dreaming I've been known to cross the center line, hit the curbs while driving down a stupid main road of the town I go to counseling in and drive slow as a snail, only to speed up like a speed demon. Ashleigh can attest to my driving. I've been told, that people who are going through the grieving process, "should be extremely careful while driving.

The following is only a glimpse of what goes through my mind every single day..

how tall would Carly be today?

how long would her beautiful hair be?

how many new words would be in her vocabulary now?

what Carly would be doing today?

what would Carly's favorite TV show be now?

what would her favorite book be now?

what would her favorite toy be now?

would she be learning to read more words?

would she have taken off with her math skills?
as predicted by her teachers

what would she be learning at school?

what would she want from "Ho Ho" aka; Santa?
probably EVERYTHING advertised on TV!

would she have wanted to sit on "Ho Ho's" lap this year?
she wouldn't last year, she stood back and observed him!

what would her favorite song be now?

how would her looks have changed over the past 6 1/2 months?

but,

mostly

I'm

wondering

how

to

go

on

without

her

over

the

next

several

weeks...




Friday, November 12, 2010

Words from a bereaved parent.

I received the following from my cousin via email. One of her facebook friends shared this with her after the loss of that friends child. Number's 1-17 are the original words written by "a bereaved parent". I added 18-21...because I had more to add to the list! I then realized, as I finished, that I had ended at number 21. Which is interesting, since Down syndrome is a third copy of the 21st chromosome.

1
. I wish my child hadn't died. I wish I had her back.
2. I wish you wouldn't be afraid to speak her name. My child lived and was very important to me. I need to hear that she was important to you also.
3. If I cry and get emotional when you talk about my child, I wish you knew that it isn't because you have hurt me. My child's death is the cause of my tears. You have talked about my child, and you have allowed me to share my grief. I thank you for both.
4. Being a bereaved parent is not contagious so I wish you wouldn't shy away from me. I need you now more than ever. I need diversions, so I want to hear about you; but I also want you to hear about me.
5. I might be sad and I might cry, but I wish you would let me talk about my child, my favorite topic of the day.
6. I know that you think of and pray for me often. I also wish you would let me know those things through a phone call, a card or a note, or a real big hug.
7. I wish you wouldn't expect my grief to be over in 6 months. These first months are traumatic for me, but I wish you could understand that my grief will never be over. I will suffer the death of my child until the day I die.
8. I am working hard on my recovery, but I wish you could understand that I will never fully recover. I will always miss my child, and I will always grieve that she is dead.
9. I wish you wouldn't expect me not to think about it or to be happy. Neither will happen for a long time, so don't frustrate yourself.
10. I don't want to have a "pity party" but I do wish you would let me grieve. I must hurt before I can heal.
11. I wish you understood how my life has shattered. I know it is miserable for you to be around me when I am feeling miserable. Please be as patient with me as I am with you.
12. When I say "I'm doing OK" I wish you could understand that I don't feel OK that I struggle daily.
13. I wish you knew that all the grief reactions I am having are all very normal. Depression, anger, hopelessness, and overwhelming sadness are all to be expected. So please excuse me when I am quiet and withdrawn or irritable and cranky.
14. Your advice to take one day at a time is excellent advice. However, a day is too much and too fast for me right now. I wish that you could understand that I'm doing good to handle one hour at a time right now.
15. Please excuse me if I seem rude, certainly not my intent. Sometimes the world around me goes too fast and I need to get off. When I walk away I wish you would let me find a quiet place to spend time alone.
16. I wish you understood that grief changes people. When my child died, a big part of me died with her. I'm not the same person I was before my child died, and I will never be that person again.
17. I wish very much that you could understand; understand my loss and my grief, my silence and my tears, my void and my pain. BUT, I pray daily that you will never HAVE to understand.......
*18. I wish that others would not try to compare their loss of a parent, sibling or spouse to the loss of my child. I don't compare my loss to yours.
*19. I wish others would stop telling me, "it gets easier in time."
*20. I wish others would stop saying, "life goes on." My life ended on April 23, 2010 at 12:05pm; or at least, my life as I knew it ended.
*21. I wish people wouldn't assume my daughter was "sick" and that's why she died or because "she was born with Down syndrome and they don't live long anyway", because she wasn't sick and Down syndrome doesn't kill you.

Wednesday, November 10, 2010

I am...

...exhausted

...frustrated

...aggravated

...devastated

...pissed off

...full of rage

...annoyed

...sad

...looking like I've aged 10 years

...wondering why my child

...wondering why not someone else's child

...wondering why not a sick child

...wondering why now

...wondering why not during one Carly's illnesses

...missing my sweet girl

...missing waves goodbye & the blowing of kisses
each morning as the bus drove away

...missing my girl jumping from the top
step of the bus into my open
arms EVERY SINGLE afternoon

...missing those little arms wrapped around my
leg everyday after school

...missing her constant yelling, "MAMA"

...missing my house being a mess with toys

...missing reading to my girl

...missing rocking my girl

...missing giving my girl baths

...missing combing her long beautiful hair

...missing her sweet smile

...missing her silly little laugh

...missing her laughing at me every time I
have the hiccups

...wishing it hadn't been my girl

...wishing it wasn't my family going through this

...wishing others would STOP telling me they
know what we are going through

...wishing others could understand that
NOTHING
compares to losing a child.
NOTHING
.


















Thursday, November 4, 2010

November 4.

Today, November 4th, our middle child turns 21 years old. This is unreal to me. I can not figure out how time goes by so fast. Sure wish I could flip a switch and slow it down.

This will be a hard birthday for all of us to get through. The first birthday of Carly's siblings, without Carly. The first of many that we have to figure out how to get through. My heart breaks that she will not be here to join in with the birthday cake and ice cream. She loved her "bubba" very much. And cake and ice cream were a big hit with her too.

We will face today as we face each day; walking through grief, as there is no way around it. We'll eat cake and ice cream and sing to our middle child. Just as we always do. Although it will not be the same. We will do it. We have to.

Today is Brad's day. The focus, on him today. Happy Birthday Brad!


Here's Brad on his 1rst birthday.


And here he is today...well, recently!

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