Another month passes.

May is soon going to be over. I sit here and think..where does time go? I've said this many times in the past 13+ months, "I wish life had a re-wind button." However, I know that is only wishful thinking. It's not reality. But I still wish for it. And I probably will, forever.

This month has been very difficult. I'm glad is almost over, but sad at the same time. And, I worry what the next month and the months soon to follow, will bring. I seem to have many more tears falling, over the course of this month. Much frustration. Much depression. Much sadness. Much heartache..and yes, my heart still aches. It actually, painfully hurts. My chest feels like its caving in. I don't sleep any better, in fact I think I sleep worse in the past month or so, than in previous months. My mind never shuts off. And loneliness consumes me. Yes, I realize I still have a family. But, losing Carly last year...I lost a part of me too.

What I hate the most, other than having my 8yr old buried in a damn cemetery, is that I am forever a different person. I don't like this person. I liked me, 13months ago. I liked my life. I LOVED my life. Now, I dislike nearly everything about my life.

I'm so very angry. First and foremost, I'm angry at God. I want to believe there is a God, but what my family is going through, really makes me question whether or not He even exists. I try and convince myself that, yes, He does exist, because I want my daughter to be in Heaven. And she damn well better be there, if of course there even is a Heaven.

But then, I go back in time. Back to April 23 2010. I'm so pissed off on how that all played out. I have a son who suffers from severe depression and he had to witness the most horrific thing anyone could ever imagine. His baby sister dying on our living room floor. His dad frantically doing CPR on her lifeless, blue, body. His mom completely losing it and going into hysterics. I was so hysterical, I was ushered out of my damn house! And then, he saw her come back and be her spunky little self. I was told to console my son. Make him aware of the fact that Carly was back and she was okay. And I will be damned, if less than one freaking hour later, my brother had to come to my house and tell my son, "Brad, you need to get dressed, Carly died on the way to the hospital" That is messed up. And anyone who doesn't understand my questioning God,,well...I'm sorry, but that's my mind frame right now. What kind of God allows such a scene to play out? Thanks to that horrific day, my son has slipped further into depression and I seriously, do not know what to do for him. I used to pray for him and his illness. But now I see clearly, that all the praying in the world,,,often times, is of no use.

I've learned quite a bit in the past 13months. Life goes on. Like it or not. Life goes on. Life is NOT fair. Bad things happen to good people. People pass judgement on grieving families, "they should be getting over this by now." I know that's what people think ..all I can say, is step into my skin for a few minutes...then let me know your thoughts on "getting over this" I've learned that true friends are few and far between. Friends who you thought were friends, are no where to be seen. Which I can not figure out. Do friends disappear? Do they fear grieving parents? Do they think I'm going to sit and cry constantly? I don't,,,just so you know. Yes, I cry and I do it quite often, but...BUT, I try and cry by myself.

With all that being said, in the above paragraph. I do have a couple of, in real life friends who call quite often. They both live out of state. One in Virginia and one in Florida. But, they call. They leave messages..they don't stop calling. If they can't get a hold of me, they call again another day. Those are true friends. Honest to goodness, true friends. And I'm thankful they call me so often, even if I don't return their calls for several days/weeks. I know they care a lot about me and my family. And I'm very thankful for both of them.

My online friends have been so supportive to me and my family. I have the best bunch of online friends that a person could ever hope for. I get support from all over the world. And that, is priceless. I never thought people could bond, without ever meeting in real life..but you can! I have and for that, I'm thankful.

I found the following message on a parents grieving web site. Oh how I HATE having to make sure I'm not losing my ever loving mind. I actually research "grief" and "grieving parents" etc.. This message really struck me. It's a great message. Loud and clear. Please, take a few minutes to read the message below.

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Losing a loved one does not just disrupt a person’s life - it changes it forever. When someone you care about experiences the death of a loved one, it may be hard to know what to say or how to offer comfort and support. This is especially true if you have not yet gone through the loss of a loved one yourself. There are various ways to support someone who is going through this difficult experience.

Here are some ways you can give support to someone who is grieving.

Be a good listener. Sometimes the best thing you can offer to someone who is grieving is to listen. Assure the person that it is okay to talk about his or her feelings. Although you cannot erase the pain of the bereaved person’s loss, you can provide a great deal of comfort by being there to listen.

Respect the person’s way of grieving. There is no right or wrong way to grieve. Everyone grieves in his or her own way. The sadness of loss, however, is universal.

Accept mood swings. Be aware that a grieving person will have emotional ups and downs. Grief is often described as an emotional roller coaster. Someone who has just lost a loved one may feel fine one moment and overcome with emotion the next. This is a normal part of the grieving process.

Avoid giving advice. It is best to avoid making suggestions about what the bereaved person should or should not do. Such advice is usually well meant, but it may make the bereaved person feel worse. Instead, let the person know that you recognize how great his or her loss is. For example, you might say, “What a difficult time this must be for you,” or “How painful this must be for you and your family.”

Refrain from trying to explain the loss. Words that are meant to console the bereaved can in some cases have the opposite effect. Avoid saying things like “Your loved one is in a better place,” “It is God’s will,” or “At least she or he is no longer suffering.” Listening is more helpful.

Help out with practical tasks. A bereaved person may be glad to have help with activities like grocery shopping, preparing meals, making phone calls, doing laundry, babysitting, and so on. Rather than saying, “Let me know if there is anything I can do to help,” offer assistance with specific tasks you are in a position to help with.

Stay connected and available. There is no timetable for grief. People who are grieving need time to heal, so be patient. Let the bereaved person know that you will check in often. Even if he or she is not yet ready to talk or to be around others, simply knowing you’re there can be very comforting.

Offer words that touch the heart. It’s natural to struggle with finding the right words. Simple words are often the best. For example, say: “I’m so sorry for your loss. How can I help?” No matter how unsure you may feel about the support you are offering, what matters most is that you are genuinely concerned and want to help. The bereaved person will likely appreciate your sincere efforts to be supportive.

25 years!

Wow...25yrs is a long time! Although, looking back now...time flew.

I first met Paul in middle school...that was reeeeeeeeeaaaaaaaaaaaalllllllllllyyyyyyyyyy a long time ago! In fact-we rode the same school bus, which meant we lived very close to each other. We were friends all the way through middle school and high school, but we didn't start dating until 1984.

Paul and I were married May 24, 1986; for the first time! Yes, you read that correctly. We married, very young; as our picture below, is sure to prove. I was not yet 20, I turned 20 in August of '86. Paul was 20, and turned 21 in August '86. Guess you all know both of our ages now!!

Looking back on that day, we could have never imagined what life had in store for us. I think more often than not, people walk into marriage with blinders on. Suddenly, we had two children. Before we turned 25. Man, that's so young. But, as quickly as we married, had kids and started our lives..we ended it-with divorce.

We separated in 1991 and our divorce was final in 1992. We went our separate ways..well,sort of. Oddly enough, we fought worse divorced than we did while we were married. But, eventually, one day..we grew up. The fights were fewer and further between. We actually started being able to carry on conversations with each other.

In the mean time, our 2 small children entered grade school. Like any child, the kids wanted both their parents around for after school activities. And so, we started spending time together. Like a family. The four of us. At that point, we decided that we needed to try this whole marriage thing again. So..Paul moved in with the kids and I, in 1997. We lived together for two years before getting re-married, in December of 1999.

Fast forward to 2002. We completed our family with a very unexpected gift. Carly. We had talked about having another baby before I became pregnant with her, but at that point...we had pretty much forgotten all about it. We were busy with Ashleigh and Brad and all their after school activities. We were on the go. All the time!

Once Carly was born, we had no idea how we ever had gotten through life without her, always being a part of it. She was our third child, but somehow, she was our center. Our core. Even though she battled her way through the first 4 years of her life with more health issues than most of us will ever battle in our entire life time..SHE, kept US, grounded.

We walked straight through the gates of HELL with Carly. Two open heart surgeries..one of which almost claimed her life. 3 major and potentially fatal blood infections. One of those blood infections caused her brain to swell. Which in turn, left her left side in a palsy type state for many, many, many months. And caused neurosurgeons at UofM to sit on the edge of their seats, waiting, nervously to open our 3yr olds head up to relieve pressure off her brain. Thankfully, that did not happen. However, during that time, an old stroke(I say old, because it was calcified)was found on Carly's brain. At some point in her life, she had had a stroke. A stroke that would likely have gone undetected, had it not been for that one, really nasty blood infection. During all that stuff, leukemia hit in 2004, which took us by surprise. 26th agonizing months of chemotherapy. Dehydration from chemo, which left Carly with NO vitals, whatsoever. Hospitalized for burns from chemo. Burns on her little bottom. Yes..BURNS from CHEMO. Her burns were not from her skin coming into contact with any of her chemo drugs(those will burn the skin), but rather from her bowel movements. Those burns were so bad, she was placed on a morphine drip and Mott's called the burn team in to access her. She had 3rd degree burns on her entire bottom...all from chemo drugs. Every time she went potty...she was in such pain, she would stop breathing. Talk about a horrifying experience. That one had me a frazzled mess!

All the above experiences could never have been guessed 25yrs ago, when Paul and I first said, "I do" We never, in our wildest dreams thought we'd end up divorced..or re-married. Nor could we have guessed that we'd be running through corridors at Mott's Childrens Hospital, toward ICU because our daughter was dying. Not once, not twice, not three times...many times. We were so naive to think that life would be all rose colored glasses. It took us 24yrs to realize just how awfully hard life can be. Especially after all those horrifying experiences with Carly and the here and now.

When we first got married, we were just like everyone else. We'd be together forever. We'd have a happy family with plenty of money and a nice home. We'd live happily ever after. We'd have healthy, happy kids. You know, all that normal naive stuff?! Paul and I learned quickly, that that is not the case. Life hits and it hits hard sometimes.
We've been through so much together. It has not been easy. Not by a long shot. And I fear it's going to get harder as we go forward without our little girl. Our 25(plus)yrs together does put things into perspective..that's for sure. I can hardly type the following...but here it goes. I can't imagine life without Paul being by my side. You might wonder why that would be so hard to type..or even think. The reason being..is fear. Fearful of what may happen...just like with Carly. We couldn't imagine life without her. We were so happy. We were in a good place. Now, here we are. Finding out just what life is like without the very core of our family.

It's hard for Paul and I to wrap your brain around this stuff. For all the good given to us, came way more bad. And that makes us so terribly sad. Although, we are thankful for the 8yrs we had with Carly...8yrs is just NOT enough time. Nowhere near enough time.

I don't expect we'll do much celebrating today. To tell you the truth, we don't even know which anniversary date to even use!! HA! This one, or the second one!?!? All that matters is that we weather the storms, together.

Happy 25th Anniversary Paul, like I always told Carly..."I love you, bunches of O's!" (Carly liked the Honey Bunches of Oats cereal commercial..except she said "O's" instead of Oats. Therefore, I always used that phrase with her..and she would giggle like crazy)
XOXO!

The Clothesline.

Today, as I hung a load of laundry

outside on the clothesline, I cried.
I cried because of the sudden rush of
memories that flooded over me.
Memories that included Carly.

Carly helped me with nearly every
load of laundry, each Spring,Summer & Fall.
I wish I had a picture of her.
She took such pride with the tedious job of,
laundry.

As she would reach into the clothes basket
and pull out an article of clothing,
she would identify just whose clothing it was.
She'd pull out a shirt and say, "Paul".
A pair a jeans and say, "sissy" etc....
She did this with the entire basket.

When I would go outside
to take the clothing off the line,
she would be there to take the
clothespins from me and place them
back into their container.

As I stood at the clothesline today,
I just couldn't stop the tears.
They fell freely.
Lots of them.
I had to go sit down
and do some deep breathing.
The pain was so intense.
I really hadn't expected it.
It hit me out of nowhere.
Never saw it coming.
Out of nowhere, the tears came.
Odd don't you think?
Especially when all you are doing
is hanging clothes out to dry.

But last year. Well...
I was so numb last year.
It was almost a robotic action
when I'd hang the clothes out to dry.
Or anything I did.
Although I hadn't realized it back then.
But today, I see it clearly.
I was walking through
a fog. A terrible foggy mist.
I only went through the motions of each task;
such as hanging the laundry out to dry.

As for now.
The 'here and now'
That foggy mist is lifting.
And the bitter reality of LIFE,
has again, slapped me senseless.
And it sucks!

Trip to Californa and Back in High School

One of the best places we went while in California, was to Bakersfield, where we met up with Heather and Denise and of course, their sweet little girls. These ladies are so sweet. Kind and caring. They have HUGE hearts and I wish we lived closer. Just to many miles between us all.

Paul and I shed a few tears. At one point, we had Miss Zoey (Heather's) kind of concerned with us. Made her a little sad too. Our tears were short lived. And quickly turned into smiles on our faces. For some reason and we can't put our finger on it, but Zoey really reminded us of Carly. We were happy to meet her, but sad too because we missed our little girl so badly.

The following pictures are memories made that will be cherished forever. Love these gals and their girls. We are missing them very much.

Three mama's...Heather, me and Denise.

Zoey, really liked Paul!

Ella, Paul and Zoey.

Ella and Zoey...little hams for the camera's!

Miss Zoey, scootin' on her bottom...Just. Like. Carly used to do.

Paul and Ella, looking for some kind of critter...
popping it's head out of a hole, looking Ella in the eye!

Paul found a snake..and the girls couldn't get close enough!!

Zoey, styling Paul's hat!

Both girls with Paul. He was loving his time spent with the girls.

Zoey LOVED splashing in the little stream at the park.

Denise, Ella, Me, Heather, Paul and Zoey.

As I said, meeting Heather and Denise, along with these sweet little girls, was the highlight of our trip. We saw beautiful country..and I will be blogging about that too..BUT, we met these super great ladies and their awesome little girls. And that was the best part of the whole trip!

It really did feel like we were life long friends. We chatted like we've known each other for years. While Paul was in his glory, playing with the girls. And we kind of have..sort of. We all met, online, due to our children being born with Ds and the fact that our girls all endured Chemo. Although, Carly had ALL and Zoey and Ella had AML. Zoey also had heart surgery and suffered a stroke. Just as Carly had.

It was sad to leave our now, "in real life" friends. We can only hope to meet with up them again one day. Hoping some day they come visit us in Michigan!! Although we'd like to get back out there and visit the LA area! Maybe one day.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~


What are we,
back in
High School??

I didn't want to add this to the bottom of such a happy post.. but I don't want to keep having to put up a blog post about this topic..that some people will NOT let go of.

This is to address a matter about my previous blog post. Which I did shut comments down on.

I am appalled and can not believe what has snowballed out of my 1 comment regarding someones facebook status. Here's a break down: A lady wrote "I hate Ds and apraxia" and she opened the flood gates.. someone else took it and ran with it...saying, "I want a cure for Ds". Me, being a mom who recently lost her daughter, who was also been born with Ds..these facebook comments/status updates saddened me. SADDENED. And I voiced it. In fact, I DID comment that, it made me sad..I also tried to remind this lady and her "followers", that all kids have obstacles and struggles. Well..this lady jumped on the bandwagon, and even recruited some of her "followers" some of them of them have said some really nasty things to me.

I have received awful emails. Facebook-private messages and I am still receiving nasty comments right here on my blog. The woman who started all this, by saying "I hate Ds and apraxia" would NOT leave me alone. I unfriend her on facebook and then she blocked me. Good! I was glad. I didn't want to see the crap she wrote and her "followers" who agree with her!

A few days later, after all the facebook hoopla went on, I did a blog post about it; several days after it all went down. Mind you, I said several days after. Well guess what? This lady commented on my blog.. and I think she was behind the anonymous comments too! But, quite honestly, I haven't looked into it yet. I might, I might not! But seriously, I mean, really? You don't want to see what I have to say on facebook and you block me; or maybe she blocked me so I couldn't comment on her stuff..whatever! Yet, you come to MY blog. For what? To attack me? Yep, pretty much! I wouldn't publish the comment she left - with her name attached to it..at first, but then I did, so some could read it...and I deleted it after that. It was NOT appropriate. She scolded me, called me "angry" and "asinine" and was just down right nasty. Her..calling me names..how impressive of a grown woman! She's the one on the attack. She's the one who continued to seek me out.

However...I will give her some credit here..she is right, I am angry. Angry because my daughter is DEAD folks. I'm certain, you would all be angry too. If you think the anger subsides after 1 year..YOU are WRONG! If you think there is a magic number of days, to which your anger and sadness subside...there is not. The sadness consumes us. The anger is still very much alive. Most of you have no idea why I/we are so deeply angry. It's not only because of Carly suddenly dying..there are reasons that I have not shared here with any of you that is at the root of our anger.

I have gotten so many nasty comments from this ladies "followers" and no, I wont publish them. Once I addressed this "lady" and told her that I would not publish her comments on my blog. She then went to seek me out through email. Ok..who has the problem here? Me or her? Who is antagonizing?? She went above and beyond seeking me out. If she couldn't get to me one way, by god she found another way. Even after I asked her, "LEAVE ME ALONE" in my blog comment. She's nothing short of a bully. She has issues that I'm sure she has no clue as to what they are. I know my issues. I'm a mother who is grieving a loss. A sudden, unexpected loss, of a precious little girl.

I started my blog to write and share our trials, our struggles and our joy, along with our ups and downs with our daughter who was born with Ds. Sadly, it has turned into how we are "finding our way" without out our sweet girl..But never once. Not one single time. Did I ever say/type "I hate Ds" or "I want a cure for Ds". NEVER once. Not in 8yrs! Hell, I didn't even think it. Ever. But, I did have bigger fish to fry. Bigger than Ds. Bigger than evaluations. My problems and my focus was, keeping my daughter healthy. And for all my hard work and for all of Carly's hard work to stay healthy, look where it got us. So, shoot me. It makes me very sad (notice I keep saying "sad" ... not mad), that people would think their day was so bad that they had the right to say "I hate Ds" and "I want a cure for Ds" Shame on all of you,,,you are hating something that makes up the very heart and sole of your children. And THAT makes me sad.

To think that one lady, goes about, seeking someone out with the motive of being a bully, is sick. This is a grown woman who IS, bullying someone. Not to mention, messaging mutual friends on facebook and telling them to basically side with her or delete her. Who in their right mind does that? She wants people on her side..to defend her. I haven't asked for anyone to defend me. I don't need anyone to defend me. I didn't do anything wrong..other than say I was sad to read those comments on facebook. I should NOT have to be defending myself to anyone. You don't agree with my thoughts and my view..fine. But, YOU do not need to jump in on the attack. This lady is doing a dandy job all on her own. Oh, by the way, she ended up emailing me a second time, but I deleted it without reading it and then I had to block her from sending me emails! Like I told her, she is a "pit bull" who wont let go.

This is the LAST time I will address this topic. A topic I did NOT keep alive. You, who continue to comment with nasty comments/remarks..are keeping this going. If you want something to end..why on earth do you folks continue to comment and contribute to this topic with your nasty remarks? I was done with this, but get up this morning to MORE comments on the previous post. If it wasn't so sad, it'd be funny.

And remember..for all YOUR so called "bad days", my bad days are far, far worse. Because, at the end of the day, most of you can and will, wrap your arms around your children. I can't!

High School wasn't even this bad..for me anyway!

Remember, this is where it STOPS. I will NOT comment on your nasty remarks/comments/private messages regarding this issue any longer.

*** comments are through approval only, now. If you are negative and nasty or if you are trying to bully me, on my blog posts..you won't get your comment published, so please, don't waste your time typing. I don't need such nasty, negative people who are adult sized, bullies leaving me comments***

People do not seem to realize that their opinion of the world is also a confession of character. ~Ralph Waldo Emerson

Just going through my blog and see that I haven't updated anything since mid April. I have a lot to put on here and I will. Eventually.

Paul and I decided we needed a change of scenery and so, we headed to California last week. We went to Yosemite National Park and to Kings Canyon and Sequoia National Parks too. Walked for miles and miles and miles, up and down mountain sides, hiked to waterfalls and even spent a day along the coastal region of Monterey. It's beautiful out there. Fisherman's Wharf, Pebble Beach, and Carmel were every bit amazing and beautiful, as the mountains and the HUGE Sequoia trees.

However, I do believe the best thing that we were able to do, is meet up with 3 of my facebook friends..whom I've never met in person before! These 3 gals are proud mama's to children born with Down syndrome too. Yes, we met their children and we were thrilled and a bit saddened at the same time. I'll blog about the trip in a few days.

The reason I started this blog, was to write about the life our our sweet little Carly. Our struggles. Our health issues. Carly's achievements and her milestones; that many parents take for granted. As of lately, some of those parents have completely blown my mind!

Unsure where to go with this blog, from this point in my life. Part of me wants to keep it going, but another part of me thinks I should wrap it up. I mean really..who wants to keep coming to a blog that is so sad, with very little joy and happiness. But, I suppose, that's life. Life isn't a guarantee of "joy" and "happiness".

The other day, something took place on facebook, which hurt me very much. All because I called out a mama, well 3 mama's, of Ds children, who actually posted that they "hate Ds and apraxia" and "I want a cure for Ds". I mean, really? Seriously? To say you "hate Ds" pretty much goes against striving for acceptance from those who have no experience with Ds and would just as soon see no person walking the earth with Ds. And wanting a cure?? PLEASE... that's like saying you wished your child had not been born.

As I sat on my couch, I bit my tongue for quite a while and perhaps, maybe I should have kept my thoughts to myself. But, they opened the can of spoiled, rotted worms that really made me sad. Not mad..at first,,, although, now I'm pissed!

I sat in my living room that night, missing and wishing that my little girl, who was born with Ds, was here on my lap and then I read a facebook status that literally made my chin drop to the floor. I was suddenly very, very sad. Sad because one of these mama's, who I admired so much, felt the need to put something so insensitive of our children, on her facebook. It was there, in black and white..no excuses could cover the fact that it had been placed on her status.

After that, went on it lead me to do some thinning out of my facebook friends. I thought all us Ds mama's were on the same page. We want acceptance. Inclusion. But how can we get that, if Ds mama's say/type that they "hate Ds" or they "want a cure for Ds"? How does that differ from hearing someone say the "R" word? I'm willing to bet, if one of those particular mama's heard someone say, "I hate Ds"..she'd flip her lid.

Some may think I over reacted on this whole thing. My daughter told me to stay out of other people's drama..But I didn't do anything wrong here. All I did is try to explain how sad that that status on facebook made me. Especially since, their happy, healthy Ds children are ALIVE and mine is not. I tried to remind these mama's of the Down Syndrome Creed. The last line was my point. "I'll do it as YOU do, but at MY own pace" Sadly, they didn't get it and fired back at me with both barrels loaded. Whatever. I guess you learn a thing or two about a person.

We will continue to be "finding our way" as we learn to live without our sweet girl. It's a process that is never ending. My hope, from this point forward, is that parents WAKE up and REALIZE the gift you've been given. All children struggle and we all have obstacles to over come in our lifetime. Remember, you could be in my shoes one day. Don't hate Ds or wish it away. For pete, sake..embrace it!