WHAT WE WISH OTHERS UNDERSTOOD ABOUT THE LOSS OF OUR CHILD

By: Betty Baggott, Alabama Baptist BOD, her words are in black, mine are red.

-I wish you would not be afraid to speak my child’s name. My child lived and was important, and I need to hear her name. We have experienced this SO often. Brad's friend was so scared to say "Carly". Which I can understand,he's young and had no idea how to handle the situation... but I did speak her name and we all talked about her. He was more comfortable and so were we.

- If I cry or get emotional if we talk about my child, I wish you knew that it isn’t because you have hurt me; the fact that my child died has caused me tears. You have allowed me to cry, and I thank you. Crying and emotional outbursts are healing. Most often, I can keep my tears private, but many times.. I just can't. It's never because anyone made me upset, it's because...that's me now. Good days are few and far between...bad and sad days are much more frequent.

- I wish you wouldn’t “kill” my child again by removing from your home his pictures, artwork, or other remembrances. I know that my family still has Carly's pictures out. My parents still have a drawing or two on their fridge. I think they still have the magnetic letters on their fridge too,,they spell C A R L Y. :**(

- I will have emotional highs and lows, ups and downs. I wish you wouldn’t think that if I have a good day my grief is all over, or that if I have a bad day I need psychiatric counseling. I m fairly certain some people think I need psychiatric help...and some days, I wonder that myself, but rest assured, my doctor and my counselor have both confirmed that when I feel that way, it's a "normal" symptom of grief.

- I wish you knew that the death of a child is different from other losses and must be viewed separately. It is the ultimate tragedy, and I wish you wouldn’t compare it to your loss of a parent, a spouse, or a pet. We have had many, many people compare our loss to their parent and even a pet. Not having lost a parent, I can not relate to them, but I do know that most children out live their parents..and that's the way it's suppose to be. We buried many pets and our last two dogs were gut wrenching for us. We cried and cried for those beloved pets and trust me, that was nothing compared to this. Pets are replaceable..kids are not.

- Being a bereaved parent is not contagious, so I wish you wouldn’t shy away from me. We have had so many people shy away from us in the past 15months. We know it's because they have no idea what to say to us. Which is sad. And we also know that some may fear hearing about our loss. It may be overwhelming for them and they just don't want to hear about it. That's pretty sad too.

- I wish you knew that all of the “crazy” grief reactions that I am having are in fact very normal. Depression, anger, frustration, hopelessness, and the questioning of values and beliefs are to be expected following the death of a child. Most of you know that I m dealing with some major depression, anger and anxiety and I sure don't know what I believe anymore. It's like being stuck between a rock and a hard place...literally.

- I wish you wouldn’t expect my grief to be over in six months. The first few years are going to be exceedingly traumatic for us. As with alcoholics, I will never be “cured” or will I be a “former bereaved parent,” but will forevermore be a “recovering bereaved parent.” There is no time limit on grief. Please don't assume we are over it. We will never be over it. It just plain sucks to be known as "a bereaved parent".

- I wish you understood the physical reactions to grief. I may gain weight or lose weight, sleep all the time or not at all, develop a host of illnesses, and be accident prone – all of which may be related to my grief. Well, as of today, I'm down 27lbs! Not because I m not eating. I wasn't eating the first several months into this nightmare, but I m now. I actually joined Weight Watchers in mid April. And I love it. It gives me something to focus on and right now, it's the only thing in my life that I can control. As for being accident prone. I sure am. Just in the past month, I've had 2 grills blow up in my face. Thanks to my very 'un-focused' mind. My mind just does not focus on much these days (other than my Weight Watchers). I have to take medication just to get a few hours of sleep. And last week, I blew the gas grill up in my face and singed my eyelashes, eyebrows, facial hair, hair on my arms and fried the flipping hair on my head. A few weeks earlier I lit the charcoal grill and forgot that I had actually lit the dumb thing...so, I added a shit ton more lighter fluid and tossed in a match,,, BOOM, right in my face. Can't figure out why I haven't burned my face all to pieces. Thankfully, I haven't. Paul has warned me, "PAY CLOSER ATTENTION TO THE GRILLS"...

- Our child’s birthday, the anniversary of her death, and holidays are terrible times for us. I wish you could tell us that you are thinking about our child on these days, and if we get quiet and withdraw, just know that we are thinking about our child and don’t try to coerce us into being cheerful. No one has tried to make us be cheerful during any of these times. We have had a few laughs during these times, but we've had our quiet times too.

- It is normal and good that most of us re-examine our faith, values, and beliefs after losing a child. We will question things we have been taught all our lives and hopefully come to some new understanding with our God. Oh boy, do I ever question everything I've ever believed in. Things I had been taught throughout my childhood have all but been tossed out the window. No matter how hard I try to understand God, it's just not happening for me. I don't understand anything about God now, and I fear that I never will again.

-I wish you would let me tangle with my religion without making me feel guilty. Not many people object to my thoughts on religion right now. My head is just to messed up to think about it. And I appreciate the fact that no one is throwing it in my face.

- I wish you wouldn’t offer me drinks or drugs. These are just temporary crutches and the only way I can get through this grief is to experience it. I have to hurt before I can heal. No one but waiters and waitresses have offered me alcohol. As for drugs,, well unless they are prescribed by my doctor...that's not happening either.

- I wish you understood that grief changes people. I am not the same person I was before my child died, and I never will be that person again. If you keep waiting for me to “get back to my old self,” you will stay frustrated. I am a new creature with new thoughts, dreams, aspirations, values, and beliefs. Please try to get to know the new me – maybe you’ll like me still. I've been saying this long before I read the writings of Betty Baggott. I am NOT the same person and I don't like it anymore than anyone else. I find myself saying things to other people that I would never do before losing Carly. I don't bite my tongue and cower and let things slide, just to avoid a big time..maybe I should, but it doesn't happen anymore. I am NOT the same person. I didn't ask for this change in me. And most often, I don't even like myself..but, due to my life taking a drastic change for the worse,,,this is me now. Either like me..or not, I suppose that's the jest of .

I believe that instead of sitting around and waiting for our wishes to come true, we have an obligation to tell people some of the things we have learned about our grief. We can teach these lessons with great kindness, believing that people have good intentions and want to do what is right, but just don’t know what to do with us. We have had some people offer to help us out in some way shape or form, but for the most part people say, "let me know if you need help" or "do you want me to bring a meal? just let me know, call me" Well first off,,,,most often "we" the parents who are grieving, will NOT ask for help. We kind of have other things on our minds. You may mean well and that's a really nice thing, it is. But in reality, we (bereaved parents) are not likely to call you up and ask you for anything. Take it upon yourselves to help a bereaved parent. Their world, as they knew it has stopped turning. Step up. Don't expect to be called upon, it rarely will happen that way.

Pick your phone up and call us just to chat. Don't assume and fear that we will only talk about our child who has passed away. Some times a 10 minute phone call to just say, "hi, I was just thinking about you today" really means so much and can lift our spirits, if were having a rotten day. It also reminds us that people really do care about you..because more often than not, you believe no one gives a crap. One of my girlfriends called me today, just because. She lives in Florida now and even tho., we only talked about 15minutes, it was so good to hear from her and to know she thinks about me and my family.

About the worse thing you can do to a bereaved friend, is vanish from their lives. So, if at some point you find yourself in a situation knowing a bereaved parent, don't expect them to reach out to you...YOU need to reach out to them. Don't tell them to call you, it may not happen, their lives have been turned upside down. But YOU could pick up the phone and call them.

I've become friends with several bereaved parents, all through facebook. I belong to a group of bereaved moms. Most of those moms feel these very same things. However, we do try to understand that people kind of fear us now. Either they are afraid of saying the wrong thing or they are afraid of us saying something about our child and the thought of that makes them very uncomfortable. We understand that other people have lives, busy lives..we get that. But, our minds are a jumbled mess and we long for some sense of normalcy.

Closing in, on 15 months...

.....as July 23 approaches.

It is coming straight at us, just as every single 23rd of each month does. We dread the date. Hate knowing that 15months is closing in on us. 15months since I last held Carly in my arms. 15months since I've soaked in her scent. 15 months since I've heard her sweet little voice and her infectious chuckle. 15months since I've kissed her teeny tiny little nose at night, while she would lay sleeping between Paul and I. 15months since she greeted her "Paul" by running through the house yelling, "PAUL, PAUL!" and jumping into his awaiting, open arms each night after work.

As far as grieving our loss. Yes, we are still grieving our baby girl. We're still at that point; a point where I'm sure we will remain for many, many years to come - if not forever. Some days, I m fairly certain that we will not survive this. Sometimes, I hope to not survive this. Now, by no means am I talking about suicide. But being truthful, there are times that I could care less if I were here on this earth any longer....or not. Then I snap back into the here and now..and know that I long for Carly and always will, but I have a family who would be suffering two losses. And that's not okay with me.

Some days, I m sure that this must all be just a horrible nightmare and I just know that I'm going to wake up from it eventually. Except, that never happens. Most days, I m still in disbelief that this has happened in our lives. Yes, of course I KNOW we lost our baby, we buried her, I watched her die...I KNOW. But, this nightmare of losing our child, it's just way, way to much to bear. I think this particular thought all day, every day --- how can it be? This wasn't suppose to happen. It wasn't expected to happen. She was doing so good. She was playing at my brothers house the night before. None of us had any idea we would lose her the following morning. What the Hell happened? How did it end so fast? Questions that I m sure, will never leave us. Please, don't tell me, "it was Gods will".... I'm not gonna buy it. And FYI...grieving mothers Do Not Like Being Told, "it was Gods will". Trust me, none of us like being told that..so please refrain. Thank you.

I have realized, over the course of these almost 15months, that I have pretty much lost my identity. Carly was my identity. She was I all new for 8 yrs. I am completely lost without her. I don't know who I am anymore. It's scary not having your identity. You think you know who you are and BAMM...just like that, it's taken away from you and you are left to try and find yourself again. I lived and breathed that little girl. Went to HELL and back so many times with her. And that's who I want to be again. But of course, we all know....I will never be that person again. Ever. I am trying to find myself, but my gosh it's hard. There are so many road blocks, so many stepping stones, so many hurdles in my way. It's such a horrible struggle that most of the time, I m just not up to. I don't like having to find a "new" me. I liked the old me, the "mama" me.

Paul and I have been having an awful time the last few months. We argue. More than we ever had. Over the stupidest things imaginable. Paul and I never fight or argue. This is new for us. We may disagree, but fight and argue?? No. I guess this is due to the shitty hand in life, that we've been dealt.

Paul, however, has been having a terrible time. I worry about him. A few weeks ago, after a fight/argument, we both started crying. Crying because our hearts are broken and will be, forever. Paul needs to get some help. He just hasn't come to that point of accepting the fact that he needs it. And, he's a man...(most men tend to think it's a sign of weakness if they seek help). On that day, while we both cried our eyes out, he admitted to me that all he sees, every. single. moment. of. the. day., from the time he opens his eyes each morning, to the time he closes them each night, is Carly's little face while inside that ambulance.

For reasons unknown to us, Paul was placed in charge of Carly's care inside that ambulance. Such a heavy burden for him to carry with him for the rest of his life. The only training Paul has ever had, is basic CPR. He did ALL the chest compression and didn't stop. 20 miles to the nearest hospital and Paul never stopped! The EMT's completely freaked out when Carly went into cardiac arrest. Unsure as to why they freaked. They knew full well that she was a cardiac patient. But, they had no idea what to do for her. In fact, the only thing they did, was start a damn IV in our driveway and injected her with Epi, several times, directly into her IV. Their hands never even touched our sweet girl. Makes us sick. It was likely because they were so busy jumping around the ambulance pulling binders out of binder bins and reading up on what to do. That was precious time wasted. And, if they weren't trained to handle an emergency type of situation...what the HELL were they doing on this call?? Now, I'm no doctor, nurse, paramedic or EMT, BUT I've spent a heck of a lot of time in ER's and inpatient with Carly and I've seen her in big trouble - health crisis' - and close calls of near death - several times..and 1 thing I learned...the parents are in the way...the professionals take over. Sadly, that did not happen for Carly. What really sucks the most, was hearing her cardiologist (during a meeting with him a few months ago) tell us, "had they got her to us, had they followed protocol; which would have bought her time to get to UofM and into our hands, Carly's chances of surviving this cardiac arrest would have been about 70%." Nice kick in the gut eh? Please tell me, how in the world are we suppose to come to terms with all this now? Especially after being told this by the head of ped's cardio doc at Motts/UofM. Our poor girl was doomed in the hands of those EMT's on that horrible day. We often feel as tho we just tossed her to the wolves.

I finally had to get to the doctor a couple weeks back. Thankfully, doc made a change in my anti-depressants, (I think Paul needs a change in his too). I'm on Celexa now, and am getting a higher dosage than I was taking, while on Lexapro. OMGosh, what a difference this new medication is making. I m not on edge as much. I m not blowing a gasket at every single thing that happens. I no longer have that constant, horrible feeling of being suffocated, it's there, but not as bad. Do I like the fact that I have to rely on anti-depressants and anti-anxiety drugs? NOPE. But, I've come to realize, I can not function day to day without having them.

I realize I haven't been blogging in quite some time. To be honest, I just haven't had it in me. We've been having such a difficult time learning how to live without our sweet girl. A very, very difficult time. I'm still working on Paul, trying to get him to seek some professional help. I went for about 4months. Often times, I think I may have to start going again because as far as I can tell...this grief thing, is never ending. Closing in on 15months, SUCKS!

At night when I fall asleep she is all I dream of...
The one who holds my heart, my angel from above...
I want to hold her in my arms, comfort her when she weeps...
Be there to tuck her in at night, then gently kiss her on the cheek...
I want to tell her sweet dreams, before she lays her head to rest...
Then whisper softly in her ear, "to have you, I'm truly blessed"...
I want to be able to love her, prove to her that she's my world...
Then I wake up crying tears because I'm without my little girl...
My days without her hurt so bad, I wish I had her here with me, but

in my heart, she will forever be.

Fear and Anxiety..

...both reared their ugly head at me today. Actually, this week has not been a good one. Fear and anxiety have been hovering all around. It's been terrible. Some days, I really just don't want to get out of bed for fear of, well..fear.

Fear and anxiety are very similar, at least they are for me.

Fear:

noun /fi(ə)r/ 
fears, plural

An unpleasant emotion caused by the belief that someone or something is dangerous, likely to cause pain, or a threat
• - drivers are threatening to quit their jobs in fear after a cabby's murder
• - fear of increasing unemployment
• - he is prey to irrational fears


A mixed feeling of dread and reverence
• - the love and fear of God


A feeling of anxiety concerning the outcome of something or the safety and well-being of someone
• - police launched a search for the family amid fears for their safety


The likelihood of something unwelcome happening
• - she could observe the other guests without too much fear of attracting attention

Wednesday, Ashleigh and I drove up to Carly's elementary to drop off the books I purchased to donate to the school library. It was such an eerie feeling walking through those front doors of that school again. It was fear staring me straight in the face. Or was it anxiety? A combination of both I think. I could remember so well, walking in to pick Carly up for appointments or even after school. Carly would see me, as she walked toward the office, she'd get so excited and run and jump into my open arms. What I wouldn't give to have her jumping into my arms again. ugh. And so, we went in and dropped the books off at the office. No big to do. Just walked in, dropped them off, along with a retirement card for the elementary secretary, who saw all three of our kids (well,,except of course, Carly), through elementary school. Got a hug from the secretary, and then ran smack dab..face to face, into that awful 1rst grade teacher of Carly's. Oh my god..I wanted to smack the crap out of that woman. She just smiled and said, "hi!" The whole drop off took about 3 minutes. We didn't see any of Carly's classmates and I was thankful for that. Because I feared them. I feared, that I would bust out crying.

Wednesday night, I went with Paul to his doctor appointment. I mentioned the fact that I'd been having a terrible headache for several days. I ended up getting a shot of Toradol, for a 3 day migraine. It helped, for a bit. But, of course, my head is booming again today. I'll be back to the doctor soon. And likely back on my oral migraine meds. I haven't had to take migraine meds in years. I also found out that the anti depressants that I take, are soon to be, no more. Lovely. My doc informed me that he's going to have to switch my meds up. I HATE the thought of changing those meds. I don't like the side effects of new meds. I don't like the way your body has to adjust to new meds..especially these kinds of meds. I've been on this particular med since 2006. So now, I have all sorts of anxiety going on,,,just because of an upcoming change in medication.

Today, I had the mother of all panic/anxiety attacks. It was crazy. I was out mowing the yard and as usual, Carly was on my mind, but that's really nothing new. All of a sudden, I couldn't remember what size shoe she wore. It threw me into a tizzy. I just freaked out. How could I forget my daughters shoe size? What the hell is wrong with me? And why on earth would I even be thinking about her shoe size? Then I got to thinking, who would ever forget the size shoe that their child wore? I did..that's who. And it stung my heart terribly and then it pissed me off. I did eventually remember. She had just gone into a toddler size 9.

Now, I'm left wondering, is this the first of many things that I am going to forget? I don't want to forget. I want to remember every. little. thing. about Carly. Her pant size, her shoe size, her giggle, her pivot-off one foot as she pranced around the house. I want to remember her, "huh huh" quick little laugh she'd do when she turned the channel on the TV or cranked out her boom box,,even after being told not to do either. I want to remember, forever, the way she would sneak her food to her dog, Penny and the way she would wave her hand in front of her face, while wrinkling up her little nose and sniffing..when something tasted bad to her, or if something smelled. And just now, I remember how her underpants drove her nuts. Carly had no butt. I'm not kidding, she had a teeny tiny little butt. Which caused all her underpants to be a little baggy on her bottom! I constantly had to fix her underpants. Poor kid. As silly as the underpants memory is, I don't want to forget it. Ever.

My mind continued on, during my mowing. I thought about the last time I played with Carly during the month of June. Then I had chills running up and down my spine. It was the year before last. The freaking year before last. How can that be? Then fear came out..as I rode along on the mower. I was thinking, oh my god, before we know it, we're going to be saying..5yrs..10yrs..20yrs. And that takes my breath completely away. The more years that go past, make me fear that our memories will fade. And that really scares me.

The sad thing about fear and anxiety, for a bereaved parents is---you have to face both. There is no way around either of them. You have to live through each of them. You can't avoid either one. It sucks that both, will be with us for the rest of our lives. Sure, they both may fade a bit from time to time, but from what I have been told...both stay uncomfortably close, never leaving your side for very long.

Anxiety:
anx·i·e·ty

noun /aNGˈzī-itē/ 
anxieties, plural

A feeling of worry, nervousness, or unease, typically about an imminent event or something with an uncertain outcome
• - he felt a surge of anxiety
• - anxieties about the moral decline of today's youth


Desire to do something, typically accompanied by unease
• - the housekeeper's eager anxiety to please


A nervous disorder characterized by a state of excessive uneasiness and apprehension, typically with compulsive behavior or panic attacks

And so we went...

***this post was done a year ago. I knew I had done a post about our donating books to Carly's elementary school and to her classmates,,,but....I never actually posted it. Soooo, below you will see the post I did, a year ago. Followed by an updated post from today!***

**************************************

....to visit Carly's school.

Last Friday, Paul, Ashleigh, my mom and I (we couldn't get Brad or my dad to go) headed to Dansville Elementary School. It proved to be much more difficult than I had thought it would be. Actually, it was very difficult, for us, for the kids and the staff. Many tears were shed today. Carly is deeply missed.

Several weeks ago, we received a letter in the mail from the Elementary Principal, informing us that the staff and kids were really wanting to do something within the school, in Carly's memory. The letter stated that the staff had talked with the kids in Carly's classroom, shortly after Carly's passing. The kids were asked what they would like to do, within the school, to remember Carly. Well, the kids knew Carly so well and they knew her love for books was so great. When asked if they would like to "make a Carly's Corner" inside the library, complete with a primary size table and chair set. The kids were thrilled with the idea and all said "yes" And so, it was decided. Carly's Corner would be set up in the spot that Carly always sat and read her library books. The principal even had a name plate made and placed on the table. The letter invited our family to come to the school and view, Carly's Corner.



After receiving that letter, I knew that I wanted to donate some of Carly's books to the school library. I wanted to insert name plates inside of each book. Paul and I headed to Office Max, bought some labels and then hit my brother and sister in-law up for the project!! I probably could have done it myself, but my mind is a scattered mess these days.

We placed Carly's first grade picture on each label with a memorial message. After deciding to donate to the library, I decided that I wanted to give each classmate one of Carly's favorite books too. Carly loved those kids and they loved her. We had name plates made up for each of those books also, the message was just a little different.

When last Friday came, I was a nervous wreck. We walked into the school office where we met up with the school secretary, Mary Fran. Mary Fran has been there for 22 years! She saw both, Ash and Brad through elementary school. Seeing her really set the tears in motion. She hugged us each and cried with us. And then we headed down the hallway toward Carly's classroom. Oh my gosh, was that ever a hard walk. The tears were flowing down each of our faces. We tried to pull ourselves together before heading into the classroom. We tried, but didn't really succeed. Thankfully, the teacher had explained to the kids that this may be a very sad visit for us. Carly's aide, resource teacher and OT were there as well and cried along with us.

Once we settled ourselves down, I managed to finally speak to the kids. I told them how much Carly loved her friends and how she would be so happy that we were giving each one of them, one of her favorite books. I handed out a book to each child. The two most favorite books, went to Carly's two best friends; Hannah and Shanna. The kids were very happy to each receive one of her books. I pointed out the name plate that was placed inside of each cover. Their faces lit up when they saw Carly's pictures. One little boy kept saying, "look, it's Carly. It's Carly!"

One little guy asked me, "what's wrong with your eyes?" The aide explained that I was sad. The little guy said, "because Carly's in Heaven, and that makes us sad right?"

Hannah, broke into some horrible tears. She was a mess. The poor little girl just loved Carly. And when she found out that she had one of Carly's favorite books, the poor little girl just lost it. I sat and talked with her, hugged her and told her how good of a friend she was to Carly. She told me, "but I miss her so much." That broke my heart. Hannah was one of 7 of Carly's classmates who came to visitation at the funeral home.

Shanna, who has been Carly's friend since they were 3 yrs old, told us that she was going to take special care of her book. Shanna is the little friend who came to the funeral home and absolutely insisted, that Carly would come back from Heaven and play with her again. In fact, the class made a poster the day before the funeral and delivered it to the funeral home. Each child wrote something special to Carly and to us. Shanna wrote, "Carly, please come back from Heaven and play with me again." That almost knocked us to our knees..

*******************************************
6/3/11

One year later. Wow. I can not believe I never actually posted the above post. In fact, I discovered several posts that have yet to be posted. Oops. Guess I'm a slacker. I really do need to get several of them posted. Hopefully I will get on that, before another year passes.

We decided that we wanted to continue to donate books to the Dansville Elementary Library, each year. I went online the other day and ordered 10 nice new books. I placed a name plate in each one and we will head off to the school next week.

I went to Amazon and browsed several hundred books! I wanted to get a few of the "easy readers", which is what Carly was into. I also wanted to get some books that I knew Carly would enjoy having read to her, but were at a higher level of reading than where she was at.

The Big Book Of Bugs, would have been one of her FAVORITES. She would have flipped over this book! Carly was all about bugs, frogs, snakes, turtles...everything I disliked!!

She would have also loved having me read The Random House Book of Poetry. She loved listening to poems and fairy tales. I used to read to her, a book that my brother and sister in-law got for Ash, when Ash was a toddler. It came from England, where they were stationed while in the Air Force. That book was full of poems and fairy tales. In fact, one day while I was reading that book to her, she spelled her first word! She saw a toy box full of toys and toys on the floor surrounding the toy box, Carly signed to me, T O Y S! Anyone who knows sign, knows, you actually spell the word out. I almost fell off the couch.

These are all the books I picked out this year. I know that Carly would have sat and read each and every one of these books for hours on end. She loved her books! She had about a million of them. And I'm not exaggerating! She would ask me to get, "all books, all mama" then she'd head to the couch and I'd carry her a STACK off one of her book shelves. She would sit and look at those books for hours on end.

I hope the kids enjoy these books, as much as I know, Carly would have.