I miss ...

I miss my daughter..I miss my friend.I miss her smile. I miss that twinkle in her eyes. I miss how her hand felt in mine.I will always love her. I will remember her. My heart will always ache for her.

Her friend Marissa sang this at the Johnston Memorial Service for her ... She sang it so beautifully I wish she could put it on youtube for me , to share with you all.

Traditions

I dont know where to start today , its been a busy couple of days so I havent done much writing. Done plenty of thinking but nothing for writing , even little notes to myself. Its kind of sad really. I have actually wrote memos to myself in my phone for random thoughts before and I havent even had the time to do that.

I was reflecting on Sundays post some about Thanksgiving dinner and it made me think about traditions. Ours changed a few years ago. Casey changed them long before her death. Maybe in some way she was preparing us for the future ? When she would be gone...

I am positive she had plenty of time to prepare herself for her death. I know I should have been more prepared but honestly as prepared as I thought I was for when that day would come, I never not really prepared nor can I tell someone how to prepare for something that horrible.

My ex husband and I split up in 2003 for the final time. For a few years we swapped kids back and forth for holidays ,each of us having our own celebration with them until Casey went into independent living. Somehow or another we all found ourselves with her , at her place Thanksgiving 2006. He with his partner and I with mine. We came together as a a family for the girls.

Pretty much every holiday , every kids birthday and major things we found ourselves together for the girls. It doesn't hurt things that little B loves the girls dads family either ,and they love him in return.

We still celebrate the holidays together , even though Casey is no longer here physically. She changed that. She showed us that divorces be damned we were all still a family. I remember her laying in the bed at hospice the night before she died when Christine told me that just because her brother and I were divorced she would always consider me her, her sister. All Casey did was smile.

I think in some way , Casey needed to know that I would have support for when she left this world since I dont exactly get along all that well with my own family. I love them all but really think several of them are very selfish and self centered so I choose to keep my distance from them.

Someone told me after her death that Casey was more worried about me after she died more than herself dying. I think she was afraid Id totally lose it. I think shes right , I came pretty damn close to losing it , it was one hell of a rough year , and a year and a half later I'm still clawing to keep myself out of that pit. Some days are easier than others.

Thanksgiving Day

I made it through the day without totally breaking down and crying. I did have tears in my eyes the night before knowing it was Casey's third Thanksgiving not with us. It was not easy stopping the tears, but I didn't want to have to explain to Bryce why I was crying making deviled eggs so I bit the tears back.

It was a very quiet Thanksgiving meal. Just D, Bryce, my friend Harry and myself. Abby and Ally both had to work. I silently questioned if all holidays are going to be like this once they go to college. I would hope they would come home from college for Holidays but one just never knows.

Today is our family Thanksgiving with the girls dad and his family. D's family , and the kids. My extended family couldn't make it..well the ones I invited anyway. Oh well. Maybe next year... I really wish Heaven had day passes for those who have passed on. I would love to have Casey home if only for a few days a year. Id like to have Grandpa Terry carving the ham. Some of grandpa Norbert's meat balls. Some of Grandma Shirley's Kahlua drinks , and aunt Nancy's chocolate bread pudding , and Uncle Kent's off color humor.

Can you handle a challenge ?

Happy Thanksgiving to all you wonderful angel moms, whether you actually celebrate it or not I want you to grab that Hallmark spirit of gratitude and hang on to it for this challenge.

Holidays can really freaking suck when you have lost people through the year or lost people around this time of year. I really wanted to try to organize something to redirect my own feelings of loss into something more positive, as I had advised someone else to do.

So I figured I could organize that something to include more people and serve a greater community, I could do it quickly and without a lot of drama, and by using the internet get the word out fast.

I hereby challenge and charge you to notice who is missing at your table and, for each missing, donate one meal to your local food bank. Or even just one single item if thats all you can afford. Maybe your missing family members favorite canned or boxed food item ?

You can either donate non-perishables (not last years unused canned yams either. If you haven't eaten them in a year nobody else will either) directly or go to your local grocery where they have the "tickets" at the checkout you can purchase to buy a meal for someone who, while they may be heartily grateful for what they DO have, may have far less to be grateful for than you.
 
Along with a basic canned or dry good think of maybe a box of cake mix for someone to make a birthday surprise for their child or some personal care goods as well. Food pantries will even take those jars of baby food , those unopened cans of baby formula. The partial bags of diapers are always accepted too !

You have until Monday to complete this challenge. Food bank donations have diminished greatly and many people right here in the richest country in the world go without every day. 

So I'll ask you again .. Can you handle a challenge ?

Remember me

To the living, I am gone. To the sorrowful, I will never return. To the angry, I was cheated. To the happy, I am at peace. To the faithful, I have never left. I cannot speak, but I can listen. I cannot be seen but I can be heard. So as you look in awe at a mighty forest and its grand majesty, Remember me. Remember me in your heart, your thoughts, and your memories. Of the times we cried, the times we fought, and the times we laughed. For if you always think of me, I will never have gone.

 

 

 

Dear Mom And Dad

Dear Mom And Dad,
I know this is a rough time for you. So I will be as gentle as I can be.
First of all, thank you for so many tears, particularly those shared with another that you love. They are a gift to me, a precious tribute to your investment in me.

As you do your mourning, do it at your pace only. Don’t let anybody suggest that you do your grief work on their timetable. Do whatever it takes to face directly the reality of what has happened, even though you may need to pause frequently and yearn for my return. Do this with courage and my blessings. Know that sometimes inertia is the only movement possible.

Give your best to keeping a balance between remembering me and renewing your commitments to life. It’s O.K. with me if you go through minutes, hours and even days not thinking about me. I know that you’ll. never forget. Loosening me and grabbing hold of a new meaning is a delicate art. I’m not sure if one comes before the other or not, maybe it’s a combination.

Be with people who accept you as you are. Mention my name out loud, and if they don’t make a hasty retreat, they’re probably excellent candidates for friendship.

If, by a remote possibility, you think that there is anything that you could have done for me and didn’t. I forgive you, as my Lord does. Resentment does not abide here, only love.

You know how people sometimes ask you how many children you have? Well, I’m still yours and you are still my parents. Always acknowledge that with tenderness, unless to do so would fall on insensitive ears or would be painful to you. I know how you feel inside. To be included as your child honors me.

Read, even though your tears anoint the page. There is an immense library here and I have a card. In Henri Nowens’ “Out of Solitude”, he writes, “The friend who can be silent with us in a moment of despair and confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not healing, and face with us the reality of our powerlessness, that is a friend who cares.”

 

Mom and Dad, I don’t know where you are spiritually now, but rest assured that our God is not gone. The still small voice you hear in your heart is His voice. The warmth that sometimes enfolds you is Him. The tears that tremble just beneath your heartbeat is Him. He is in you, as I am.

I want you both to know that I am O.K. I have sent you messages to ease your pain, they come in the form of flowers that bloom out of season, birds singing, voices and visions and sometimes through your friends and even strangers who volunteer as angels. Stay open but don’t expect the overly dramatic. You will get whet you need and it may be simply an internal peace. You are not crazy, you have been comforted.

Please seek out people bereaved longer than you. They are tellers of truth, and if they have done there work, are an inspiration and a beacon of hope whose pain lessened dramatically and one more wisdom before I close. There are still funny happenings in our world. It delights me to no end when I hear your spontaneous, uncontrolled laughter. That, too, will come in due time.

Today, I light a candle for you. Joined with your candle, let their light shine above the darkness.

Affectionately,
YOUR ANGEL CHILD
~ Authour Unknown

 

 

I am your Angel

Perfectly imperfect

Perfect ..Everything's perfect. Everyone's perfect. Do you ever stop and think and wonder why someone seems to have had a perfect relationship with someone ? Or do you often wonder if they are full of crap ?

I was sitting here tonight wondering in the silence of my house wondering if people think that..or just chose to not remember the arguments and the bad times..and only focus on the good times in life.

I cant be the only one who misses the hell out of someone that I loved dearly and remembers a persons qualities that I didn't always like but know they are what made her who she was and I will always love everything about her dearly because it is who she was. You can love someone dearly and not always like every single thing about them .

If you didn't know that or realize it wake up !! Life is too short - You don't have to love every single thing about someone to love them !! You have to take the good with the bad and indifferent and know they are who they are, and if you really love them you can see past the stuff you don't like.

My daughter was a spitfire. She had spunk. She was friendly. She was a smart ass. She had attitude. She had a good attitude and a bad ass attitude, and both served her well. They are what made her Casey, and to us , Casey was special because she was a fighter and wouldn't take anyone's shit sitting down, or laying down for that matter. She wouldn't back down because she was disabled.

Nothing pissed her off more than someone looking at her chair and passing judgement on her based upon her chair. She had to constantly prove herself to people that she was smart because of them ASSuming things about her because she couldn't walk.

Casey always tried to see the good in everyone but sometimes it honestly pissed her off to no end when people tried babying her because she had Muscular Dystrophy. Did I mention she had an attitude ? The "My attitude is YOUR problem" shirt I saw after her passing would have suited her perfectly...

That kiss my arse - watch and see attitude she had carried her far in life. Her lack of giving a shit what people thought about her carried her far. She was ALWAYS honest to a fault with people, but you ALWAYS knew where you stood with Casey. If she told you to go fuck yourself , you knew she really meant for you to fuck off. If you pissed her off , you knew it. She told you how she felt and didn't hold anything back. If she told you that she loved you , she meant it.

If she considered you a friend , you were blessed because she didn't take words or feelings lightly. She was passionate. She always stood up for her friends and family in every way she could. She had a voice and she had no problem with speaking up and letting it be heard !!

She didn't feel the need sugar coat anything or blow cotton candy up someones ass to make them feel better about themselves. She laid the cards out on the table and played the hand she was given. She didn't shit unicorns or piss rainbows of happiness, she was Casey. She was blunt. She was honest. She was real. She is loved and she is missed.

She gave me more gray hairs in the month before her death than one person should ever get that quick !! Reflecting back on those past few months , I'm sure she gave her favorite nurse M a run for her money too, not to mention the hell she put her aides through at times. She loved most of them and tolerated others. Honestly she could be hell on wheels one moment and sweeter than the sweetest candy you could find in a candy shop the next. She was stubborn as hell to boot !!

But she was Casey and we never expected anything less than her being herself. She was like a breath of fresh air with her honesty. She kept it real. She was very special. She was unique.

Everything about Casey is missed her faults , her attitude , her honesty ,her bluntness , those killer smiles , the twinkles in her eyes and her love. She wasn't perfect by any means but perfection is in the eye of the beholder. She was perfectly imperfect and she was perfect enough for me.

 

Better in time

This is the second song I heard after my daughter Casey died. I used to turn it off when it would come on the radio for the first 8 or so months after she died . I would chose to listen to Cd's over and over instead of the radio. There was no chance of the songs that reminded me of the day she died coming on if I wasn't listening to the radio.

I heard it by mistake almost a year to the day after she died. It broke me. I felt like the lyrics were speaking to me. It really was the longest winter without her. Every little thing reminded me of her. I could see reminders that she was gone everywhere. They felt like slaps in the face every time I saw a reminder. Like salt in an open wound to remind me she was gone.

Everyone told me things would get better and Id get over losing her. I can honestly say 2 years, and almost 8 months later , I'm not over losing Casey. Ill never "get" over losing her. Day by day Im getting through the day with losing her. There is a difference between getting through , and getting over.

Getting over her would be like pretending she never was here. Getting through means getting through each day and learning to accept her death. One day at a time. One hour at a time. One minute at a time ,and when needed one second at a time. Some days are better than others. I still see the reminders but now they don't make me cry like they used too. I miss her dearly but instead of seeing the reminders as she is gone and not coming back , I chose to see them as reminders that she was here and she would have loved it.

Do things get better in time ? No but you learn to accept things for what they are..and try and remember I'm trying to remind myself that she would want me to be happy.. but would understand that I am going to have bad days.Instead of crying all the time , I'm learning to smile again. I'm learning to laugh again. I even sometimes can talk about her and not cry. I'm trying to learn to live again without her.

One day at a time.

Bruised but not totally broken

I can really relate with this song .. all too well. For those of you who haven't listened to it yet please do.

"I said hello I think I'm broken" -  Bruised but not totally not broken, possibly just shattered, and I dont think Ill ever be able to have my bruised and broken heart fixed. Nothing can bring Casey back , all I can do is hope and pray that it mends over time and that remembering her and what joy she brought to our lives fills in the jagged edges of my heart when it shattered.

"For the life of me I never would have guessed how far the simple truth would lead ". Broken hopefully not beyond repair, although my heart will never be the same ever again. Im more cautious now than ever before. I have a fragile heart , as in afraid for the future in some aspects, and longing for the yesterdays.

"You knew how to heal that pain -No medicine can fix". Casey always knew what to say to make someone see the brighter side of things , and knew exactly how to make someone feel better even in the shittiest of situations. I often wonder what she would tell me , if she knew how heartbroken I was over losing her.

"Now I know God has His reasons but sometimes it's hard to see them when I awake and find that you're not there". I wanted more days with her , and have really lost a lot of my faith because I don't understand why murderers, rapists and drug dealers are given the freedom to do what they want with their lives , which is to murder, rape, and supply addicts but yet my daughter who was free spirited , outgoing , loving and compassionate is dead. She never would have intentionally ever hurt anyone and often went out of her way to help others. How is it fair that she is dead while evil still is allowed to live and hurt others? It just really isn't fair .. no matter how many times Ive contemplated this , it still isn't fair.I don't see the reasoning God had.

"I bless the day I met you and I thank God that He let you lay beside me for a moment that lives on and the good news is I'm better for the time we spent together and the bad news is you're gone." I am not the same person I was before Casey died. I used to laugh all the time. I used to almost always have a smile on my face. The fact of it is , I am more solemn now. I do laugh occasionally but I am not as carefree as I used to be. I do know that I am a better person just because of her though. She taught me so many things without me ever realizing that she was teaching me. Compassion for others. Empathy. Understanding. Unconditional love. Friends of mine have told me , I must have taught her these things, and that she reminded me of their meanings in her own ways. I really hope she knows how much I loved her, and will always love her.

Perspectives

Last night I actually slept through the night , it was a welcome change but I also missed my dreams. I know physically and emotionally I was worn out though. Perhaps a night of dreamless sleeping is what I needed to recharge myself for the upcoming holidays.

I will never stop wishing for one more day with Casey, and to be honest the holidays are some of the worst days because they are major slaps in the face that she is gone. Never to ask for more cool whip on her pie, some ranch dressing and her smile. An extra bite of cake. Yes the holidays, birthdays and anniversaries suck the worst.

Today I went to Hy-Vee and was talking to an older lady , who made a comment about Chicken Kiev and how it was so hard to cook for just one person since her children are grown up now with lives of their own. She shared with me that she hasn't liked doing all the cooking since they moved out , and shared that her husband died at 47 years old, from leukemia. My guess is she looked to be about 60 years old.She shared with me that he was the love of her life, her first kiss , her only boyfriend and the only man she has ever loved. She told me they just don't make love like that anymore.

She asked me if I had children and I said yes, and that my youngest was in kindergarten and that I have three older daughters. She laughed and told me to enjoy the teenage years with them since those will be the hardest yet most rewarding times with them. I kind of spaced off a moment just remembering Casey in high school and getting her ready for prom. She asked if I was ok ,and I told her yes. I just was thinking. She asked me how old my other kids were. I told her I have 16 year old twin daughters and a daughter who graduated high school in 2010.

That typically makes people quit asking questions but it didn't stop her, she seemed truly interested. She asked me if my oldest was going to college , married or working . I took a deep breath and told her , she had died a few days after graduation. I told her how we make blankets for hospice now in her memory. She told me thank you for doing that, that her husband and she had gotten good support from hospice in the days and months before his death.

She looked at me , gave me a hug and told me thank you for reminding her that people lose people they love everyday , and explained to me that today had been a bad day for her, with remembering her husband , and that I gave her a reason to be thankful , that she still has her children and that it put things into perspective for her.She said she would always try and remember that she was blessed to have them yet on the bad days.Im glad I was able to help her remember that it could be worse but suck that the reason why is that she at least still has her kids.

I still want one more day with Casey, and always will want more time Im sure. One more day to hear her and the twins laughing. One more day of I love you Mom . One more day to hear her voice. One more day of everything I loved about her, and one more day even if she was mad. Just one more day.

Sometimes...

The last few nights Ive been waking up in the middle of the night between 2:30 and 3:30 every morning after having dreams so vivid , they woke me up , hoping she was home to stay. Id wake up and the dream would be gone and reality would set in. She is gone from her physical body, freed from the confines that held her in a wheelchair here on earth.

It honestly made me want to cry. Cry for the selfish part of me who wants her back no matter what , and feel guilty because if she was still here on this physical plain with me , she would still be confined to her chair, she would have pain and be sick , but she would be here.

I dont like the fact that she is gone. I dont like the fact she isnt coming back to me in a physical sense here on earth again. I feel horrible for wishing for her because I know she really struggled to live life to the fullest with her illnesses , and fought so hard. Somehow knowing she is no longer sick , or hurting is comforting but it does not make me miss her any less, sometimes I just wish I could have her back for a day so I could tell her how much I love her and how much she is missed , and we could go do what we planned to do when she was an adult.

I have a real problem wrapping my head around the fact she would be 20 years old now, and in college like her friends. Some of her friends are getting married and having babies. I have to wonder would Casey be getting married ? Would she be starting her family through adoption like she wanted to ? What would she be like now ? I never got a chance to know 18 or 19 year old Casey. I wish she was here so I would know 20 year old Casey. I bet she would have been a wonderful 20 year old.

I wonder what advice she would have given to Abby and Ally about becoming an adult and being responsible. I know she would be as proud of them as I am for all they have taken on and done since they turned 16.. She loved them and Bryce dearly. She would be proud of who they are all becoming.

Forever Missed

Ive said it before..And I will say it again.

My daughter Casey was here. She was loved. She is still loved. She is missed every single day. Every single day I see something in her younger brother , and sisters that reminds me of her in some simple way.

I am forever thankful for those glimpses of her that I see in them. It reminds me of who she was and who she became. Her smile. The twinkle in her eyes. The anger that would flash across her face. The way her eyes spoke louder than her words could at times.The passion for people and things she held most dear. The love.

I see her fight in Abby . Lord knows they both have always loved a good argument. And neither of them back down very easily, and both of them have issues with admitting when they are wrong . Total divas to boot. Yes I can easily see , how they are sisters.

I see the compassion in Ally , how they both always like helping someone else out..and are patient and tolerant of others as well.. even when they are irritated as all can get at someone. It's like they take some sort of deep inner breath and explain it again. For them, I'm positive it feels like for the thousandth time and yet no complaints as they do it. Sometimes the looks on Ally's face reminds me of a time when Casey gave me that very same look.

Her playfulness in Bryce. The impish smile when he knows he is doing something wrong and tries to get me to laugh at him. The glee in his laughter when he is happy. The way his face lights up when he is excited. He is probably the child who reminds me so much of her in some ways , but I think that has something to do with her naming him , and how he always includes her in things even though she is gone.

He is probably the child I also feel the sorriest for because he will never know her like the rest of us did. He will never know how much of a fighter she was , how much she loved him, and the passion she had for life.  Oh how I wish he had his own memories of her to help remind him of her , and that he would have been a bit older when she died. He was only 2 years old. Only two years of knowing her, two years of being loved by her. Will those memories be enough for him to remember what she did tell him, and show him ?

We are the ones who shall have to teach him about Casey. It is through us , he shall know his big sister who loved him and the twins dearly. Lord, please allow my memories of her be enough that he knows her and how much she loved us all. Please let her sister's memories of her be enough to show him who she was also.

The song that often crosses my mind thinking about her is Garth Brooks, if tomorrow never comes. Id add the video but it isnt available on youtube. 

Quotes & Pictures

 

“He will wipe every tear from their eyes.There will be no more death or mourning or crying or pain, for the old order of things has passed away.“ Revelation 21:4"

How we survive

 

Credits to Mark Rickerby who wrote this after his brothers passing

What defines Normal ?

Normal is having tears waiting behind every smile when you realize someone important is missing from all the important events in your family's life.

Normal is trying to decide what to take to the cemetery for Birthdays, Christmas, Hanukkah, Thanksgiving, New Years, Valentine's Day, July 4th and Passover.

Normal is feeling like you can't sit another minute without getting up and screaming, because you just don't like to sit through anything anymore.

Normal is not sleeping very well because a thousand what ifs & why didn't I's go through your head constantly.

Normal is reliving the last few days continuously through your eyes and mind, holding your head to make it go away.

Normal is having the TV on the minute you walk into the house to have noise, because the silence is deafening.

Normal is staring at every young woman who looks like she is Casey's age. And then thinking of the age she would be now. Then wondering why it is even important to imagine it, because it will never happen.

Normal is every happy event in your life always being backed up with sadness lurking close behind, because of the hole in your heart.

Normal is telling the story of your child's death as if it were an everyday, commonplace activity, and then seeing the horror in someones eyes at how awful it sounds. And yet realizing it has become a part of your "normal."

Normal is each year coming up with the difficult task of how to honor your child's memory and their birthdays and survive these days. And trying to find the balloon or flag that fit's the occasion. Happy Birthday? Not really.

Normal is my heart warming and yet sinking at the sight of something special Casey loved. Thinking how she would love it, but how she is not here to enjoy it.

Normal is having some people afraid to mention my daughter, Casey. Normal is making sure that others remember her.

Normal is after the funeral is over everyone else goes on with their lives, but we continue to grieve our loss forever.

Normal is weeks, months, and years after the initial shock, the grieving gets worse, not better.

Normal is not listening to people compare anything in their life to this loss, unless they too have lost a child. Nothing compares. NOTHING. Even if your child is in the remotest part of the earth away from you - it doesn't compare.

Losing a parent is horrible, but having to make funeral arrangements for your own child is unnatural.

Normal is taking pills, and trying not to cry all day, because you know your mental health depends on it.

Normal is realizing you do cry everyday.

Normal is being impatient with everything and everyone but someone stricken with grief over the loss of their child.

Normal is sitting at the computer crying, sharing how you feel with chat buddies who have also lost a child. Normal is not listening to people make excuses for God. "God may have done this because…"

I know Casey is in "heaven," but hearing people trying to think up excuses as to why a fantastic young man was taken from this earth is not appreciated and makes absolutely no sense to this grieving mother. 

Normal is being too tired to care if you paid the bills, cleaned the house, did the laundry or if there is any food. 

Normal is wondering this time whether you are going to say you have four children or three children, because you will never see this person again and it is not worth explaining that Casey is dead. And yet when you say you have three children to avoid that problem, you feel horrible as if you have betrayed the one who is gone.

Normal is asking God why he took your child's life instead of yours and asking if there even is a God.

Normal is knowing you will never get over this loss, not in a day nor a million years.

Normal is having therapists agree with you that you will never "really" get over the pain and that there is nothing they can do to help you because they know only bringing back your child back from the dead could possibly make it "better."

Normal is learning to lie to everyone you meet and telling them you are fine. You lie because it makes others uncomfortable if you cry. You've learned it's easier to lie to them then to tell them the truth that you still feel empty and it's probably never going to get any better -- ever. And last of all...

Normal is hiding all the things that have become "normal" for you to feel, so that everyone around you will think that you are "normal."

 

Original poem by Tara & Heath Carey -(Adapted as needed for this blog)