Ray of Hope

70 Days-10 Weeks

The reality still hits hard every day. I keep waiting for a sign. Something that is undeniable. Still haven’t gotten that. Still searching for a why.  Still haven’t gotten an answer. I am searching for proof of what I never doubted, till the God I believed in, without need of proof, for my entire life, took My Beautiful Ashley. I do not think God, if he exists, made Ashley Sick. Our world did that. The need for Power & Money at WHATEVER Cost did that. My Daughter and many others, are called Collateral Damage by those who are after the power & money. People who are willing to use anyone, including children, to get what they want in life, to make a name for themselves. How pathetic is our world?

~ I wrote this following poem today. Took about 10 minutes.

Every day is filled with tears & pain, and feeling like I am going insane. The sun may shine in everyone else’s sky, but my days are grey since you said goodbye. I constantly think of all that went wrong, after you had fought so hard to live for so long. People tell me to talk to someone to get through the pain, but each of our situations are different there isn’t two of us the same.  I lay in bed at night unable to sleep, thinking of and missing you so much, so I lay there and weep. For all of this pain I do not see an end, because living without you means my heart will never mend. I miss your smile, I miss your voice, I miss goodnight hugs & kisses and hearing you say, I love you. Every day without you is a day almost impossible to get through. I count each day until again we meet. Until then, my heart will yearn for you My Sweet.

Today I went to the Cemetery and Visited with Ashley and read for about an hour. Mike and I usually go together when he gets home from work, so today he headed there straight after work since he knew I already went. It started to rain pretty heavy, so I went to the cemetery to bring him an umbrella. When the rain let up a bit, I could see the sun in the distance. So I told Mike that I wanted Ashley to Bring Me a Rainbow. Mike went to visit with Ashley and I sat in my car texting my sister and told her that I asked Ashley for a Rainbow. A little time went by and Mike was heading back to his car. I looked up and he pointed in the sky behind my vehicle. I turned and there was a rainbow. There were actually two, but one was very faint and hard to see. Coincidence? Maybe, Maybe Not. Still searching for answers.  Still doesn’t change that my life is incomplete and my heart is aching without My Beautiful Ashley here. Maybe I will find answers in the book I am reading, “Soul Proof”. Maybe I won’t. I just know that the pain has been increasing, but that there are little ray’s of hope coming through with the little things like asked for rainbows. I just hope that the “Hope” turns into proof that I will See My Beautiful Ashley Again.

ASHLEY FOREVER…………

69 Days

Nothing Will Ever Stop The Pain

I Want My Ashley

Day 68
Today was a really bad day. I have been crying on and off all day. Each day, the reality that Our Ashley is Gone hits me. The reality that her life here with us is over. The reality that I have to spend the rest of my days in this world without My Ashley.  Some days, like today, the pain is so intense that I cry to the point that I can barely breathe.  The tears flow heavily,  like I have never felt before in my life.

This is my life. A Life full of constant agonizing pain. A Life that will be spent yearning for My Ashley for the rest of my days.

I just want My Ashley Back.

You Are My Sunshine

Day 67
The Pain hasn't changed, the tears haven't stopped. I keep searching for answers. I keep waiting for signs that are convincing. But No Answers, no signs.

I ran 4 miles. Mike and I biked 6 miles on the Mokena course. But none of that makes me stop thinking about My Ashley or the fact that I Miss Her so much and that I want Her still her with me.

I used to sing the song, "You Are My Sunshine" To Ashley, Michael and Jake when they're were little. I was singing that song to Ashley the last few weeks of her life.

You Are  My Sunshine, My Only  Sunshine,  You Make Me Happy When Skies Are Grey, You  Never Know, Dear, How Much I Love You, Please Don't Take My Sunshine Away. Please Don't Take My Sunshine Away. Please Don't Take My Sunshine Away.

My Skies Are Forever Grey, Because God Took My Sunshine Away.......

Can't Find A Reason

Day 66

It has been 66 Days of Torture. 66 Days of Begging God to Give Me Back My Ashley. Each day is harder and harder.  With Each Passing Day It Hurts A Little More. I Want So Badly To See, Hear, Hug, & Kiss My Beautiful Ashley. 

I had about 4 1/2 hours sleep last night. My crying finally exhausted me to the point of falling asleep.

I can't speak for anyone else who has lost a child, but this is not going to get easier, I am not going to get used to this. This is a Forever Pain.  

I am still trying to understand how a God,  that is supposed to Love His Children With All His Heart, Can Sentence One Of His Children to Death (Ashley) and One To A Life Sentence Of Heart Wrenching, Gut Twisting,  Mind Torturing, Pain. (Me). I can't speak for Mike, Michael or Jake, But I Can Guess That They Too may Feel like They Have Been Sentence to a Life of Pain & Heartache. 

Is this a test of our faith? If so, what they hell kind of a loving father, would inflict that kind of pain on his children To Test Them?

I Had faith in God My Entire Life. I put all my trust in him. I preached his word and praised him. Ashley Had faith in and trusted The Lord.  So this is our reward? 

I want to understand.  I want to believe more than ever, more than I ever did before, that God and everything I have believed in my entire life is real, is true. 

As much as it hurt, I accepted my Dad’s, My Mom’s, My Step Dad’s, Father-In-Law’s, Mother-In-Law’s, Grandmother’s Deaths. As much as I Love them & Miss them, I accepted them. I accepted them because that is part of life. Sure My Mom, Dad, Step Mom & Father-In-Law were younger than some when they died and could have been here with us longer, but they lived their lives. They got married, had children, had grandchildren, careers, fun in their life. They followed the natural order of life. The way things should be. I buried my parent’s. I am supposed to bury my parent’s and grandparent’s. There is nothing abnormal about it. But I am not, nor is any other parent, supposed to bury a child, MY DAUGHTER, MY ASHLEY. There is NOTHING NORMAL about that. NOTHING NATURAL about that. Ashley did not get to have the fun in her life that she should have. She did not get to go to College Like she wanted, have a career, get married, have children & Grandchildren and grow old with her husband. All that was taken away from her and I cannot find a reason for that. I Cannot understand, Any Reason, God Could Have, To Take A Kind, Caring, Loving Selfless Soul, Like My Ashley, From Her Family, From Her Life, That She Loved So Much & So Badly Wanted To Live. NO REASON.

The past

I have thought about Ashley's life non-stop. Memories have been so vivid.  I Close my Eyes and I can see myself pregnant. I can almost feel her moving inside of me. See her little hands and feet move across my belly. I can feel the anticipation for her arrival. As I said before, I called her Ashley before she was born. I never found out she was a girl, I just knew. I couldn’t decide on a middle name. Then one day, while at the doctor, I walked past the board with all the baby pictures and names and the one that stood out was Elizabeth. I said, “Ashley Elizabeth, so beautiful.” And so Elizabeth was to be her Middle name and Obviously Montgomery her last.

Ashley was born on Thursday, September 5, 1991 at 5:24am. There was the Most Beautiful Sunrise.  From that moment on, I was forever changed. I was no longer Maureen, I was Ashley Elizabeth Montgomery’s Mom and she was the first of three of the most precious gifts I would ever receive. On that day, the Pillar of Our Family Was Born. She would end up teaching all of us about life. She would raise us. All of Us.

I never knew the meaning of Ashley Elizabeth until after it was given to her. Ashley means from the Ash Tree ~The Ash Symbolizes Sacrifice, Sensitivity and Higher Awareness. Elizabeth Means “Oath of God” Meaning “God’s Promise to Humanity.” Montgomery means, “The Power of Man.” I knew my girl was special even before she was born. Little did I know just how special she would be and how fitting her name would be in defining who she was.

Grief

Day 65



I Shared the words at the end of this post, about grief,  a year ago on my Facebook page. It's funny how we think we know things, how we think we know how things will be for people in any given situation. Just because we may experience a situation one way, doesn't mean that someone else will experience it the same way.





Each of us is unique in how we think, how we feel and how we respond to any given situation.





My entire life, I have always been a person that feels the pain of others intensely. I can't really explain it, but it Is a deep pain that causes me great anguish, many tears and loss of sleep. I have always been like that and as I said it is something I can't really explain. I mean, I even feel great pain for people I have never even met, but learn of their loss.





Now I am living with my own pain and I also carry the pain of my husband, my children and my family. Living with that as well as the fact, that My Beautiful Ashley, Who Fought So hard, Who was Willing to Endure Whatever Pain and Suffering She Would Face Because She So Wanted To Live, Had That Taken From Her. She was taken from all of us, that loved her in a way that many may not understand.





If you knew Ashley, I mean really knew her, Her Heart, Her Kindness & Caring For Others, Her Outlook on Life, Then You May Understand that We Lost So Much More Than Our Daughter, Our Sister, Our Niece, Our Cousin, Our Friend. Ashley Is The Most Unique Young Woman I have Ever Known. A Rare Human Being. But Ashley Is More Than My Daughter, She Is My Best Friend. She was my Co-worker and Fellow Board Member. She was part of every part of my life. When She Left this World, I Lost The Most Precious Gift a Human Being Could Receive and SO MUCH MORE......





So please do not judge my grief. Please do not tell me how it will get better. Please do not say, "At Least she is not suffering anymore." I know that everyone means well, but sometimes certain words cause more pain.





I can see that people have fade away. They don't want to hear it anymore, the think you should get over it, etc.... But until you have been in someone else’s shoes, experienced their exact way of how they experience pain, or know the depth of their relationship with their child, you will never understand what losing their child is like for them.





So giving all of that, we should not judge peoples length or way of grieving or tell them how the should grieve. Just be there to listen, give a hug and let them know you care. Most of all, let them know that you haven’t forgotten that their child is and always will be their child, even if they are in heaven. Hearing you talk about Ashley is both painful & comforting at the same time, but it lets me know that she hasn’t been forgotten, that all that she did for this world, will never be forgotten. I have 3 Children and Always Will……





Just a little insight.........

Grief may be a thing we all have in common, but it looks different on everyone. It isn't just death we have to grieve, It's life, It's loss, It's change.

And when we wonder why it has to suck so much sometimes, has to hurt so bad, The thing we have to try to remember, is that it can turn on a dime.

That's how you stay alive. When it hurts so much you can't breathe, that's how you survive. By remembering that one day, somehow, impossibly, you won't feel this way. It won't hurt this much.



Grief comes in its own time for everyone, in its own way.

So the best we can do, the best anyone can do, is try for honesty.

The really crappy thing, the very worst part of grief is that you can't control it.

The best we can do is try to let ourselves feel it when it comes.

And let it go when we can. The very worst part is that the minute you think you're past it, it starts all over again. And always, every time, it takes your breath away.



There are five stages of grief. They look different on all of us, but there are always five.



Denial.

Anger.

Bargaining.

Depression.

Acceptance

Day 64

Things are the same. I Miss My Beautiful Ashley More Each Day. That isn't going to charge.  I need to start writing.

A Prisoner

63 Days-9 Weeks

It Is Endless Torture.  It Is Not Getting Easier, It's Getting Harder. I Am A Prisoner, Trapped In A World Without My Beautiful Ashley. It Is A Life Sentence.

Just imagine, just try to imagine, your daughter, your Son, being taken from this world and you spending the rest of your days on this earth without them. Now you're just imagining. Now take the pain of that thought and multiply it by infinity. The pain cannot be described.

If you think the pain of losing a parent, even compares a little bit, to that of losing a child, think again. Not even close.

It is the worst possible torture that could-be inflicted on any human being.

No amount of therapy or drug is going to help me get through. This is my life now.
I get to live in non-stop pain for the rest of my life.

My Ashley was a Big Part of My Life, My Michael & Jake Are. Getting Over It or Getting On With My Life Without My Ashley or Michael or Jake, Is Not Possible. I am Subjected to A Never Ending Life Full Of The Worst Possible Pain You Can Think Of.

A Silent Scream

Day 62

I woke up this morning and as usual, the reality that Ashley being gone, is not a nightmare, hit me. But this morning was one of my really bad days. The tears started rolling and they wouldn’t stop. As I do every day, I begged God to please wake me from this nightmare. Please just give me back my Ashley. The intense pain, that hits me throughout the day, each day, is almost impossible to truly describe.

I wake up with a pain in my gut that feels like something inside is twisting my stomach, then I feel like I am going to vomit. Then as the reality of Ashley being gone is replayed in my head each morning, I want to scream, but it’s like I can’t and at any second my head will explode from everything going through my mind. Then I get angry with God and ask him how he could take her. How he could let My Beautiful, Kind Caring, Selfless Ashley be taken so young. Why did she have to suffer? Why didn’t she get to have a normal childhood? Why was so much taken from someone so Beautiful Inside & Out. I want answers and I don’t get them. I don’t understand why I was not taken instead of her. I do not understand how God can allow a parent to be left in this world without one of their children.

I just don't understand and I want to. I do not like that I am doubting God's Existence. If God Doesn't exist, then an after life doesn't, then it means I don't get to see my Ashley ever again. So that tears my insides up.

I recently came across something that talked about the Book of Job explaining why we suffer. I have decided that I am going to read it. I need to know. I need to Understand. I need to find that faith and belief that I had my entire life, but has slipped away. Slipped away because I cannot find any reason for My Ashley being taken from this world, from us. I need to know that there really is a God, an afterlife. I need to know that I didn't spend my entire life believing in something that is not true. I need to know that I will see my Ashley again.

I will try and get through the day by keeping myself busy with foundation stuff, but that doesn’t help because the foundation is Ashley. So that makes me cry. Then when I am doing something with Mike and the boys, they may say something that would make me laugh or smile and my reaction will be to start to laugh or smile, but then it’s like a switch gets flipped and the laugh instantly stops and the smile turns into a frown. An overwhelming feeling of guilt hits, like a panic attack and my mind tells my body that I shouldn’t be laughing or smiling. How dare I do that. My Ashley is gone. She doesn’t get to laugh or smile again. She doesn’t get to live the life she wanted to live. Why should I get to? How can I do that, when she can’t?

I can't listen to the radio, because if I hear a song Ashley liked, the overwhelming pain floods my body and a sense of panic sets in. The same thing happens with anything that reminds me of Ashley, past or present or hearing something from a time when Ashley was with us. It hits me over and over that she is not here. It's like a non stop panic attack and there is nothing I can do to stop it. I can't even watch TV shows we watched together. I watch General Hospital (Ashley watched this as well, but it usually wasn't together) But I do catch myself wanting to tell her something about it and then the reality hits and makes me cry. I watch reruns of Friends and Fox News. That is it. I have no desire to watch anything else. I have lost 14 pounds in 2 months. I am not trying to lose weight. I eat as much as I can eat, but lately it has been a pound a day. I am getting out to run a couple times a week. I use to run with friends, now I just want to be alone. I will run with Mike, when he can. I spend 99.9 % of my time at home. I go to the cemetery everyday. I usually only go to the store if Mike is with me, because going to the store sets off panic attacks. But other than that, I don't really go anywhere or do anything.

I Just Miss My Ashley So Much and I Don't Know How To Exist Without Her. I Don't Know If I Will Ever Figure That Out. I am trying, but I just can't grasp the concept of living life without Ashley. I can't because it is not normal for a parent to outlive their children.

2 Months of Hell Without Our Beautiful Ashley

2 months of pure hell. 2 months of the most excruciating and unbearable pain I have ever felt. I wake up every morning hoping that this has been some horrible nightmare, only to discover it is not. I have a constant pain in the pit of my stomach. Everywhere I look,  everything I do, reminds me of my Ashley, reminds me that she not here. If you could feel my pain, see what goes through my mind, understand my relationship with my daughter,  you would understand why a parent is not meant to outlive their children.  Not only is it the most painful thing a human being will endure, it is the saddest.   To see a happy, fun loving family forever changed, is heartbreaking.  It is all truly hard to describe and understand. I hope you never understand.

I Miss You So Much My Sweet Beautiful Ashley. More With Each Passing Day.

Sleepless Nights

Day 60

Couldn’t sleep last night. Nothing new.  My mind started to wander back in time to when I was pregnant with Ashley. These memories I have are so vivid. Memories that are so precious, have become memories that cause me so much pain.

I have been doing a lot of work for the foundation. You would thing that it would occupy my time and keep my mind off of my heartache, off of missing My Beautiful Ashley. It does the opposite. Everything about the foundation reminds me of Ashley and the fact that she is not here. The foundation was inspired by Ashley, named after Ashley and it was Ashley who helped run the foundation. She designed the website, our flyers, helped me with so much. She was the face of the foundation, the spokesperson of the foundation, the heart of the foundation. The Foundation was Ashley, is Ashley. All the work that I do, so that Her Legacy Lives On, creates so much pain and makes me miss her more and more.

Ashley is not someone you can forget. She is not someone you get used to living without. You can’t. She in unforgettable and her absence is felt in a profound way. My life without My Precious Ashley, consists of nothing but heartache and tears. The only thing that gets me through is my love for Michael, Jake and Mike.

I Am No Longer Me Without Ashley

It has been 59 days and for 59 days I have cried every morning, throughout  the day and every night.

I try the best that I can to get through each day without Our Beautiful Ashley. But I am Forever Changed and I hurt for My Boy's as well. They didn't only loss their Beautiful Sister, they lost the Mom I Use To Be. I guess I can also say, Mike lost the wife he once knew.

Child loss does not just take a Precious Beautiful Child from this world, long before their time, it crushes the souls of that Child's Parents, Siblings and Family. It takes happiness and makes it sad. It takes your memories and makes them painful to remember because they are a reminder of what once was and no longer is or will be. It takes all the hopes and dreams you had for your child away from them, away from you. It is like everyone else around you is moving forward in time as they should, but you are moving in slow motion. The pain that fills your body, your heart, your mind, is weighing you down, preventing you from moving forward with the rest of the world. You are stuck, longing for the past when your precious child was still here.

We go to the cemetery every day. Haven’t missed a day. We facetimed when we were out of town. We visit with Ash and then sit on the bench across from her monument. Every day as Mike and I sit there, I try to wrap my head around the fact that Ashley is no longer here. That My Daughter, My Best Friend, My Ally, One of the Three Most Precious People in My life, will not walk beside me, creating more memories and happy times. She will not be here with me, till the day I die, as she should be. I cannot grasp this. My heart will not stop breaking and the tears will not stop falling. Because I do not know how to live in a world without Our Daughter, My Ashley.

My family is not complete anymore and it never will be. My children define me. ALL OF MY CHILDREN. They Complete Me. I am forever incomplete. Is a car a car, without an engine?  Is a plane a plane without one of its wings?  Is a House a house without doors and windows? Everything must be complete to be what it truly is.  So, I am not me without My Beautiful Ashley. Nor Will I Ever Be.

Maybe Some More Of The Past Tomorrow………

Day 58-My Baby Girl

Day 58

The pain never decreases, it intensifies each day. Each day that we are without Our Beautiful Ashley, there is a never ending yearning to see, hear, feel and live a life that includes Our Ashley.

Yesterday, someone said to me, “You just need to learn to live that new normal.” I know that people mean well, but there is NOTHING NORMAL ABOUT LIVING IN A WORLD THAT YOUR CHILD WAS TAKEN FROM. Living A “New Normal” is something you learn to live after you or someone you love is diagnosed with cancer. It is something you learn to live when a parent, or a grandparent, who lived a long life, leaves this world. It IS NOT something you learn to live after your child is taken from you. There is no “New Normal”, because it is NOT NORMAL for you to out live any of your children. It is NOT NORMAL for a BEAUTIFUL, KIND, CARING, SELFLESS, HERO LIKE OUR ASHLEY TO HAVE HER LIFE TAKEN FROM HER. It is not normal at all and I do not understand and I never will understand.

I continue to look for signs. Anything that will let me know Our Ashley is Okay. Let me know that she is here with us. I do see signs that people have said are signs, but I am not convinced. So I know we all look at our phones multiple times throughout the day, but the time on our phone does not always stand out or have significance to us. The week before last, I happened to pick up my phone to go to my email and the time was 09 05. The time is displayed on my screen stacked. So the hour is on top and the minutes below and there is always a zero before the single digit times. So then later that afternoon, I grabbed my phone again to go on facebook and the time displayed  04 21. For those who do not know, 09/05 is Ashley’s Birthday and 04/21 is the day she left us for Heaven. Coincedence? Maybe, maybe not, I am just not sure. It happened a couple more times after that. But still not convinced.

I know that Cardinals are supposed to be a sign. I have seen a Cardinial in our yard quite frequently over the last several weeks. A lot today. I heard it and then saw it in the tree. Then it flew away and a few minutes later came back and sat on a wire about 20 feet away. Then it flew away again and a few minutes later landed on a wire above the garage. Then it flew away, I went inside for a few minutes, came back out, and I said, if that is you Ashley, come back, and it flew over the pool, landed on the wire for a second, then flew away. Then Mike came out and we saw it sitting on the lower part of the fence at the end of our yard. As I sit here typing I have heard and seen it multiple more times. The other day, when I went for a run, a Cardinal flew right in front of me. If someone heard me, they probably thought I was a nut. I said out loud, “Ok Cardinal, I saw you fly in front of me, It doesn’t mean you are My Ashley trying to reach out to me. Ashley, if that is you, I am not convinced, I need more.” I am really not convinced about the Cardinal. We do live in the state of Illinois after all and the Cardinal is our state bird, so it would not be uncommon to see Cardinals. Now, if I lived in a state that Cardinals are not commonly seen, then maybe I would be convinced. I just think we have a couple Cardinals living somewhere within the few houses surrounding us.

I need a more concrete sign, something undeniable. I am in so much pain and it is not lessening at all with each passing day. I don’t think it ever will. In fact, it seems to increase every day. I Miss Our Ashley So Much That It is So Hard To Function Day To Day. Knowing How Bad Ashley Wanted To Live, Knowing How Hard She Fought makes my heart hurt more. Lately I Keep Seeing and Hearing Over and Over in My Head, That Unprofessional, Rotten Doctor of Ashley’s Sitting on the side of Ashley’s Hospital Bed, Saying to Ashley, “You do not qualify for anymore treatment because you need to be stronger. Ashley, you do know that there is no cure for you.” I can see the look on my daughter’s face, I can hear her say to me after that witch left the room, “What they hell did she say that for, what the hell is her problem.” Then I remember Ashley wanting to exercise and I told her that she could walk back and forth across the room. Then when we finished that, I look over and see Ashley doing squats. After being in bed for so long, starting 24 hours later, those squats caused Ashley intense pain. It made it harder for her to move around. It then caused her to compensate with her arms, then causing them to be in pain. It made it harder for her to walk so her lungs could expand. Thus causing fluid buildup in her lungs and eventually leading to her being air lifted to the hospital. That Witch Exposed So Much Negativity to Our Very Positive Ashley. Those words made Ashley want to get stronger, want to work harder so she could get her cure. That is how badly Our Ashley Wanted to Live. That witch of an UNPROFESSIONAL, HEARTLESS Doctor, should be nowhere near children. That is all she ever did. Her, the fellow and her nurse practitioner, were nothing but negative. We told them over and over not to be that way. We told them that Ashley didn’t like that. That Ashley was positive. But they didn’t listen. It was like they were trying to bring her down. Then when they found out we were taking her to Seattle, the tried to do everything to make it so that wouldn’t happen. Just like they did when the Boston Doctor called them. We were getting things set up to go to Boston, then the doctor talked to that WITCH and all of a sudden the doctor calls and tells us that it is probably not best to bring Ashley. She needs to be stronger. But the Seattle doctor told us that Ashley will not get stronger till we get the AML into remission, so if you are waiting for her to get stronger, it is not going to happen. Ashley’s Chicago doctors asked me if I wanted them to talk to the doctor in Seattle. Asked if maybe he had something they could do there. I said NO, We are going to Seattle and there is no need for you to talk to the doctor there. I have been talking to him. They wanted to ruin that too. But instead, they filled her full of fluid, and never removed any. They said her lungs were fine and then 5 days later, she was being air lifted because of her lungs. It is like the didn’t want her to make it to Seattle. Like they played God with Ashley’s Life. They thought she shouldn’t fight anymore and it didn’t matter to them that Ashley wanted to.

So you can maybe understand that this is way more difficult than anyone can comprehend.

The Past-My Baby Girl   

I told a little bit of my story yesterday. I did so to try and help you understand my utmost belief and faith in God. It also was to understand that from a very young age, my purpose in life was to be a nurturer, a mother. Being a mother meant everything to me, it means everything to me. My children are my life, they define me.

Age 10- Now Fast forward 12 years to age 22. Prior to getting pregnant with Ashley, I lost two babies. I was afraid that I would never have children. Then I got pregnant with Ashley. At first, I did not allow myself to get excited about my pregnancy because I was afraid that I would lose this baby too. As the months past and everything seemed to be going well with my pregnancy, I was very excited about the fact that I was going to have a baby. I started to call her Ashley when she was in my belly. I never found out whether or not the baby was a boy or girl. I didn’t need to. I knew she was a girl and I knew she was special before she was even born.

More later……..

Day 57- The Journey Begins

Day 57

It is not getting easier. Every day without my Ashley is harder and harder. Her short life continues to flash before my eyes every day, multiple times a day. I keep going over and over in my head, that Ashley would still be here, if only I didn’t agree to give her that Gardasil vaccine. I am angry with myself, angry with her pediatrician. She insisted Ashley needed it. She insisted Ashley was at greater risk of developing this cancer. But what she didn’t tell me, is that the only way Ashley could get this cancer, was to develop HPV through sexual intercourse. Ashley was always with us. She wasn’t dating. There was no way she could even contract this HPV. If I would have known that, then I would have said no. But she played on my concern for the fact that Ashley already had cancer and insisted I give her this vaccine for her protection. You see, as the years went on and we went for normal office visits, I learned that our pediatrician’s daughter was a hand full from the things she told us. She once told us how her daughter would take her car in the middle of the night. So she assumed, that just because her daughter was that way, that Ashley was that way.  She had even run a pregnancy test on Ashley without asking permission. She was practicing medicine as if every teenage daughter was like hers. She once even said, “We don’t know what our children are doing behind our backs”. I told her that I knew my daughter very well. She said, “we like to think we do but we don’t.”  The more I think about it, the more I see how totally unprofessional she was and the fact that she allowed her daughter’s actions, to influence her opinion on other teenage girl’s and on how she practiced medicine, is messed up. Well maybe she needed to be a better mother and pay more attention to her children and be a parent to her child, instead of trying to parent everyone else’s children or assume everyone else was like her daughter.

I have to live with the fact that the Gardasil Vaccine is very likely the reason my daughter’s cancer came back the 2^nd time. I have to live with the fact that I failed my daughter, by allowing her pediatrician to play on my emotions, my concern for Ashley’s health and thus agreed to that vaccine instead of going with my gut and not giving it to her. But I also believe that she needs to live with that fact. So, I sent her a message telling her so. This vaccine was new to the United States. There was no way she knew the side effects it could have. She didn’t know enough to be pushing this vaccine, especially on someone like Ashley. There is no way her or the pharmaceutical companies knew the effects it could have on healthy children, let alone children who currently had or had cancer in the past. She just pushed it because the pharmaceutical companies said to. I know at on time, doctors would get incentives for pushing their drugs and vaccines. So, I asked her what her incentive was. I asked her what my daughter’s life was worth to her. I hope she loses sleep every night for the rest of her life. She needed to be made aware. So, I made her aware. She is unprofessional and quite frankly, in my opinion, as I sit here and write this, I believe she was being unethical as well. She didn’t know and still may not know, how to separate her personal life from her professional life. But like so many other’s in this world, it’s all about Money and Power.

I Miss My Beautiful Ashley More Each Day. She deserved to live the life she so wanted to live. She didn’t get that chance because so many people failed her. Her pediatrician, most of her doctors and her NP’s in Chicago. I even failed her. I failed her by not going with my gut. I failed her by trusting doctors. I have to live with that for the rest of my life and it eats me up every single day. But they need to live with it as well. So, I let them know that they failed her. I am sure that it will roll of their shoulders, after all, the cold heartiness I saw from many of them, was sickening. But not all of them were that way. She had some amazing residents. Some of the oncology doctors were great, Dr. Yu, her infectious disease doctor and his Fellow were amazing. Her 6^th floor Nurses were great and even her sedation and clinic nurses. But there was so much lack of knowledge in that ICU on how to care for a patient with no immune system, how to care for patients that had transplant. Same in the ER. That lay’s on the head of the man that is in charge of that hospital.

Dr.Yu and his Fellow Emily, were the only ones, of all of Ashley’s doctors, that took care of her through the last three years, that sent a card of sympathy. They genuinely cared about Ashley and you could see it. She wasn’t just a patient to them. She was a person. An Amazing Young Lady, that showed them that there is more to this than medicine. Someone who taught them so much. Dr. Yu once told Mike, “Us doctors like to think we know everything, but the truth is, we don’t. We are learning so much as we go.”

I wish that after we were referred to St. Jude, that we would have just kept all her cancer care there. Dr. Merchant never failed Our Ashley. St. Jude, never failed our daughter. I had heard from doctors and nurses, when we complained about all the inadequacies at U of C, that you will find this everywhere. Well, in 16 years, we never saw it a St. Jude.   I also wish I would have just kept my children’s pediatrician up north. All of my mistakes, will haunt me till the day I die.

The Past:

I have been contemplating for years, where exactly to start this story. It is after all Ashley’s story. I guess I need to start with me, since my faith plays a major role in our lives.

Both my grandmothers were very religious. The prayed every day. I think my Grandma Mary was a little more religious, as she was a faithful church goer. They had a big influence in my life, as I can remember back to being very little and having conversations with God. My mom thought that I had an imaginary friend and that I would go in the closet to talk to my friend. But I was talking to God. I would talk to him often, as something inside me, always new that life was not going to be easy. There was no doubt in my mind that God Existed. Those doubts didn’t come till much later in life.

When I was about 8, I remember my parent’s arguing a lot. I must have learned or heard of divorce somehow, because I remember I would go in the bathroom and pray to God and ask him not to let my parent’s get a divorce. I begged him. I thought for sure he was answering my prayers, as we ended up going on a family vacation to Disney World. Little did I know at the time, that it would be our first and last family vacation. That is exactly what it was intended for. To try and make the divorce a little easier. Several months later, we were at Grandma’s house, like we usually were on Sunday’s, but Mom didn’t come with this time. When we got home that evening, Mom wasn’t there. Dad sat us down at the table and told us that Mom had moved out. He told us about the divorce and that we would be living with him.

I couldn’t understand why God didn’t answer my prayers. I was so upset. I thought I must have done something bad that God would do this. But I never lost my belief or faith in God.

In the beginning, we would see Mom every other weekend and a day or two during the week for a couple hours. Not too long afterwards this woman, whom we had met once at Marquette Park, came into our Dad’s life. Our lives too, because see ended up eventually moving in. Mom ended up getting remarried to the man who became the most amazing step father to walk this earth. I liked him from the minute I met him. Dad got married a month later, to that woman, that would end up creating so much pain in our lives for years to come. She had her moments, mostly when dad was around. She did cooked dinner every day, I will give her that, but she was not very motherly and it was clear that she was not a fan of mine or my brother Pat’s.  But through her marriage to my Dad, we did get an amazing step brother who treated us so very good.

I was 9 when my parents got divorced and 10 when they both got remarried. Before the divorce, Mom always took care of us and everything around the house. We were just responsible for picking up our toys and not destroying our bedrooms or the house. As I said I was 10, my Sister Julie was 6 and my brothers were 11 and 12. We didn’t know how to do laundry, or clean bathrooms and living rooms and kitchens. But we were about to learn how. My Dads wife made the 4 of us clean the house and do our own laundry. At 10 years old I was smart enough to know that we were a little young to be doing that and that Julie, at 6, was definitely too young. I thought to myself, “who makes a 6-year-old do laundry and clean a bathroom. A toilet. A Tub. A Sink.” I told Julie to put a whole can of comet in the tub and just make a big mess of the bathroom. My intention was for the step monster to stop making Julie clean the bathroom and make one of us do it. It worked. She got angry and must have realized that a 6-year-old was maybe a little too young to be cleaning bathrooms. She gave the job to me.

I would do all of Julie’s jobs because I didn’t think a 6-year-old should be doing those things. I did her laundry, I cleaned our room, I cleaned the bathroom, I helped her get ready for school. I comforted her  at night when she was crying because she missed our mom. I became a Mom to my little sister at 10 years old. I guess you can say that my youth prepared me for what I was going to face later in life. I learned how important a Mom is in the lives of their children. I knew that if I ever had children, I was going to try to be the best mom I could possibly be and take the best care of my kids that I could. I learned a lot from my Mom on how to be a Mom. I learned how NOT to be a Mom, from the step monster. I guess I owe her credit for that. But I think that most of my understanding of what it meant to be a Mom, stems from always wanting to take care of other’s, because that is what our God wanted us to do. I believed that we must live our lives as God wanted us to. So, I became a nurturer.

More later………..

Trying to Survive In This Wolrd Without Ashley

56 Days Ago Our Precious Ashley Left us for Heaven. I have Spent 56 Days of Not Wanting to Exist In a World Without Our Ashley. For 56 Days, I wake up every morning and the reality that Our Ashley is not here with us, hits me. My day starts with excruciating pain and uncontrollable tears. It takes everything in me to get out of bed. Throughout the day I will start crying at any given moment, at any given place. Something or someone triggers something and the reality of Our Ashley not being here hits and the tears roll. Every night as I try to sleep, the tears fall. In the Middle of the night, I wake up multiple times, and the tears fall. The Excruciating Pain, is Always There. Most of the time I feel like I can’t breathe. I have panic attack after panic attack. A feeling of overwhelming doom comes over me. I feel like a prisoner in our world, a world that Our Ashley no longer exists in. It’s like I am constantly treading water, barely keeping my head above that water and just when I think I have reached land, a wave comes and pushes me back out to sea, out to the loneliness, the emptiness, the never-ending pain. Everywhere I go, everything I do, reminds me of Our Ashley. The daily realization that I will never see, hear, feel, hug, kiss Our Ashley again, the realization that she will never fulfil her dreams to be a Nurse, a Wife a Mother, the realization that I have to live the rest of my life without my Beautiful, Kind, Caring, Selfless Ashley is Excruciating, Endless, Pain.  The thought of being happy in a world without our Ashley feels like betrayal to her. How can happiness exist for a parent who is left in a world without one of their children?  Being left in a world that your child is taken from, is the cruelest most inhumane form of punishment you can inflict on a parent.


Since the time I was a little girl, I have believed in God. I have prayed to, praised, and preached God. I went to a catholic school from 4^th grade through high school. I was a religious education teacher for 5 years. Although not perfect, I have tried to live my life as best as I could, as a God Loving Christian Woman. I always believed that there was a reason for things. A reason that people came into our lives. However, I have never, nor will I ever, find a reason for a child being taken from this world. A reason for a parent to be left on this earth to live out the rest of their days without their child. Even with my complete incomprehension of how God could take a child from this world, I kept my faith in God. I praised God and prayed to him. I believed that he would heal Ashley. I put all my hope and faith in God and he failed me, but most of all, he failed Ashley. So I am angry with God and even doubting his existence.


Our Ashley is the kindness, most caring, most giving, selfless human being I have known. She cared so much about children fighting this monster. So much so, that she took a drug that she knew could potentially cause her to get a secondary cancer and did so because, in her words, “Isn’t that how we find cures, and I am willing to take the chance (of getting the secondary cancer) if it means other children may not suffer because of it.” Who does that? who is that selfless? Who? Heroes, that is who. Ashley, that is who. The True Heroes in this World. And Ashley is a Hero. A Hero who fought so hard for others and so hard for herself because she wanted so badly to live. A Hero who spent her free time volunteering her efforts to the foundation and St. Jude, to help children fighting cancer. She didn’t want praise or reward for her selflessness and dedication, all she wanted was the chance to live her life. But her reward for all that she had done for others, was her life ending at the age of 25.


I have begged and pleaded with God for 56 days. Begging him to give her back. I have screamed in anger to God, asking him how he could take Ashley from a life she so badly wanted to live, after all she had done for others. How he can take any child? How he can cause the cruelest most intense pain to the parents of the children that he took? Leaving them to live in excruciating, never ending pain, for however long they have left on this earth. God is supposed to be Our Father. Well as a Parent, A Mother, I would do anything to keep my children from suffering, from their heart hurting, from anything that could cause them harm. So how does the Almighty Father Allow So Much Pain and Suffering To Selfless People Like Ashley and Many others? To Genuinely Good, Caring People Like Mike, My Boy’s and Myself and So Many others? How Can He Allow That and Then Let Evil, Selfish, Cruel, Murdering People, Continue to Walk This Earth and Live Their Lives. I Never believed God Made Our Ashley Sick, But if He Is the Almighty, Powerful, Miracle Creating God that I Believed Him to Be For My Entire Life, Then Why Couldn’t He Heal Her? Why Couldn’t He Heal and Protect Other Children? Children who did NOTHING to cause their cancer. I was always taught that it is in giving that we receive. I never believed that to mean that we would get money or material things by giving to others. I believed that it meant, that if we spent our life giving to others, helping others, that in return we would live a long, happy and healthy life, a life with the necessary means to get through each day and survive. But apparently nothing I spent my life believing is true. If it were, then Our Ashley would still be here. I have begged Ashley to come to me and show me she is Ok. Show me in a very clear, undeniable way, that she is happy and that there is a Heaven. I search for that sign every day and it never happens. I beg God to show me and he doesn’t.



So I struggle every day. Looking for a reason, looking for a sign that God really does exists.  I have spent my entire life believing in a God that was Good. A God that Loved his Children. But now I am having doubts. I Miss Our Ashley So Much and I Am In Never Ending Excruciating Pain. It takes everything in me to get out of bed every morning. My Stomach Constantly Hurts. I eat, not because I am hungry, but because I need to survive. I have lost 10lbs, without trying. I am prisoner, trapped in the body of a person that no longer exist, screaming from the inside, wanting to be set free from the endless pain, knowing that the only thing that can set me free, is to have Our Ashley, here, with us again. I was a happy, fun loving, full of life, giving, caring, compassionate person. I appreciated every day that I had on this earth, everything that I have, and most importantly ever person that I loved. Every person that I was blessed to have in my life, with the three most precious, most valuable, most important people in my life, being Ashley, Michael and Jake. Ashley leaving this world crushed my soul, destroyed who I was, took My Precious, Happy Family and Destroyed it. You can’t take a Child Away from a Parent and Expect Life To Go On As If Their Child Never Existed and The Only Way To Go On Without Your Child Would Be To Forget That Their Child Ever Existed. I WILL NEVER FORGET that Ashley Existed. I am not, nor will I ever be the person I was before. That is truly sad that a God who proclaims to be our father, proclaims to love us, would allow his children to suffer such excruciating pain.


I am not looking for an explanation from anyone, a reason from anyone or a comment like, “We don’t know the answers, we will never know the answer till we meet our maker.” I have heard that my entire life and when I needed God the most, when I wanted God to Give Our Selfless Daughter a Cure, a Chance to Live Her Life, He Failed Her and Failed Me. He Failed My Family. Nothing anyone says is going to change how I feel. Only Ashley or God, if he exists, can change my mind.


But even through my struggles of my faith, of my belief in God, I believe that we are supposed to be good, caring people, even if there is no promise of receiving that long, happy life. But when I sit here in my daily daze of moving through each day and I see everything going on in this world, I am sickened. In fact, I have been sickened for a long time, because of the actions of so many people. This too, has been something that has brought doubt to my faith.


I am angry, angry because I see so much negativity, so much hatred, cruelty and disregard for human life. So much craziness and wasted time on things that are not important and not enough time spent on things that are important. People are acting like complete, out of control lunatics and it is all over the fact that the individual they wanted for president, is not president. It is beyond ridiculous that people are still throwing fits over the fact that Trump is our President. Well he is our President, like it or not. It must be accepted. It must be accepted if we ever want to see improvement in our world. All the fighting and hatred and violence is just creating a world even more dangerous than it already was. This is the world  that we are creating for our children. Our children should come first and instead of teaching them the right way to do things, we are teaching them the wrong way. We are teaching them that when we don’t get our way we should throw fits, spread lies and do whatever it takes, wrong or right, to get our way. Even if it means spreading lies or refusing to see the truth.


I didn’t like that Obama became President, but I didn’t throw a baby fit, I didn’t loss my mind and I certainly didn’t wish him to fail or wish harm to him. I prayed every day that I was wrong about him and that he was successful in running our country. For months the democrats/liberals, have been trying to do anything and everything to get Trump out of Office. To prevent him from doing his job. They have been trying desperately to prove a Russian connection with Trump or his administration and have come up with nothing. Many democrats have come out and said there is no proof. Yet they keep searching for something that is not there. They knock and put a spin on everything President Trump does and the lying liberal media sells it and so many buy it. There has been so much time and money wasted by our politicians, for hearings, to ask the same questions over and over, to come up with no evidence of any wrong doing, over and over. We did not put these people in office, to have the taxes we pay provide their salaries, so they can spend their days preventing our president from doing his job. To waste their time investigating the same thing, only to continue to come up with no evidence of wrong doing and to create rhetoric and constant chaos in our country.


For years I have and Mike has Fought Alongside Our Ashley Watching Her Go Through So Much Pain and Suffering. Watching as the Toxins of the Chemo Damaged her Body. Watch her try treatment, after treatment and get slammed by Negative Doctors Here In Chicago, with The words, “The Treatment Isn’t Working”, Time after time. But she didn’t give up, she didn’t become nasty to the world, she didn’t become mean and bitter and blame everyone for her suffering. She didn’t stop doing for and giving to others. She fought and gave, until an infection she received, from the inadequate care of certain individuals of an inadequately run hospital, took her life.



So each day, as I Miss and Mourn My Beautiful Ashley, I get angrier and angrier, when I see the individuals, who are supposed to be protecting our children and helping to build a better tomorrow for them, wasting their time on the same old bullshit over and over and preventing our president from doing his job. I get angry when I see time wasted on nonsense that is going nowhere, when that is time that could be spent on important things like finding funding and cures for our children. Time and money that can be spent on developing drugs specifically for our children so that they don’t have to receive drugs that were developed for adults and have those treatments cause other cancers or life threatening illnesses. So, why, in all these years, have we not develop drugs specifically for our children? Well the answer is, “Because there is no money in it”. There are not enough children with cancer to make a profit. HOW DISGUSTING IS THAT?


 My daughter is gone because her doctor, in Chicago, who was not very forthcoming about the side effects of an adult drug, played on my daughter’s kindheartedness and used her as a guinea pig.  Side effects that I had to find and tell my daughter about. But because Ashley was who she was, she was willing to take the chance to help others. All she needed to do was get her radiation at St. Jude and be done. It worked before. But her Chicago dcotor played on her dedication to helping others and got her to agree to take a drug that caused her secondary cancer and ultimately her being gone today. But let’s keep using our children to test adult drugs on, instead of finding drugs for them that are less toxic. Let’s not provide funding to do the research, to find a cause of these cancers our children are getting. Let's hate Trump so much that we force his son Eric, to end his foundation that supported one of the few Hospital's that is actually trying to find better cures for our children, trying to find a cause. St. Jude Children's Research Hospital.



This is the world we live in. A world that is getting worse by the minute. People are becoming crueler and crueler, greedier and greedier and a better future for our children is nonexistent. We worry more about money and power than we do about protecting our children, than we do about ensuring they have a future. THAT IS MESSED UP PEOPLE.


We put men on the moon.  We can send messages on a phone that can get to another person who is 2000 miles away, in a matter of seconds. We spent millions of dollars to sports players and actors to make movies and we call these people heroes. I can go on and on about the things we are capable of doing in this world. But We CAN’T FIND A CAUSE OR A CURE FOR OUR CHILDREN,. Not Just for childhood cancer, but other life threatening illnesses that our children suffer. These are our children, our future and we spend more time and money on unimportant BULLSHIT.



My Daughter Mattered and so do all of our children, all children fighting this monster and other monsters and something needs to be done. We need to focus our energy on our children, on their future. On the safety and care of all the people in this country, but especially our children, because WE are supposed to be there for them. WE are supposed to care for and protect our children. WE are the adults that are supposed to set an example for our children and the only example they are seeing is how to hate, how to be violent and throw fits if we don’t get our way. We are not preparing our children to live in a world where everything is not going to go your way. This will have a detrimental impact on them when something does go wrong. Our children will grow into adults that cannot handle anything in life that doesn’t go the way it should. I think our lives, Our Ashley’s life, is an example that life is not always going to be full of rainbows and happy endings. And half, if not more, of the children in this world, will not be able to handle the simple things that go wrong in their lives, let alone anything catastrophic, like their child getting cancer or some other serious illnesses.


I thought that the events, the  that happened the other day, the attack that targeted members of the Republican party by a man who hated Trump & Co and said they needed to be stopped, would end the rhetoric of the left and the liberal media and celebrities, but nothing seems to put an end to the chaos that some seem to feed off of.


How many of Our Children Have to Die, How Many Other Innocent People need to die, how much rhetoric and chaos will be enough before we get our heads out of our asses, act like adult’s, instead of a bunch of children, some whom are throwing fits because they didn’t get their way and start to focus on what is important. And please people, please quit looking up to celebrities and sports players and letting their thoughts influence you. These people live in houses that are surrounded by walls and have security and then preach as loud as they can about no walls and about letting everyone into our country. They are not really the characters they play on TV and in Movies. They think they are and some of their fans apparently think they are, but they are not. Also, Celebrities and Sports players are not Heroes because they have a talent to play a sport or act. A talent does not make someone a Hero. Ashley is a Hero. She sacrificed her life for other children fighting or who will fight this monster. The Military, the Police, Fire Fighter’s, the Capital Police and First Responders from the other day and anyone who risk their lives for others, those are the Heroes. So please quite with the use of the Term HERO for Individuals who ARE NOT HEROS. It is sickening.


As I spent the rest of my days in this world, no longer the happy, fun loving person, I once was, living as a prisoner in the body of that person I once was, My Energy will be focused on important things, not HATE.


I will focus on tying to function as the best Mom I can be for my boys while living with the constant excruciating pain, of living the rest of my life without our Precious Ashley, My Daughter, My Best Friend, My Ally. Living without her because we live in a world that does not put our children first. A world that does not think our children that are fighting this monster, deserve to have treatments developed for them because there is not enough money in it. I will work hard to push for a cause and cure for our children. I will do so because MY Ashley Gave Her Life for This Cause. My Ashley is gone because of the money hungry, power hungry, world we live in. Mike and I will Continue Her Work and Continue Her Legacy and Make the World Aware That Our Precious Ashley Is A Hero and Made A Difference in this World.


My Suggestion to all of you who have so much Anger and Hatred in You, is to find some love and caring within your heart and do something good. My Suggestion to everyone, is to realize we are all human beings and we all matter and that all the hate and working against each other hurts us all, hurts Our Children’s Future. And if you really care about your children, then you will not fight against each other but instead fight beside each other for a better future for each other, but most importantly, for our children. Just like Mike and I fought beside our Ashley. Our Precious Beautiful, Kind, Caring, Selfless, Daughter, Hero, Ashley. In the end, as hard as She Fought, as hard as we fought alongside Her, the greedy, money hungry, egotistical medical world, failed her.


As I said before, regardless of the fact that I question my faith, I will continue to live my life as if there is a God. So God Bless, and I hope everyone can open their eyes, open their heart and see that working against each other, working against our current government, is only going to hurt all of us. Anyone that wants a president to fail, thus wants our country to fail, and that is messed up. It’s not normal.


And if I may make a suggestion. If you want to support cancer research, do your homework on the charities that you are supporting. Support a charity or hospital that actually does something to find a cure, does something for families. As far as Childhood Cancer Research, St. Jude Children’s Research Hospital is an amazing hospital that does so much for our children. Not just the children that go there, but the children at hospitals throughout the world, that benefit from the treatments St. Jude Shares Freely with other hospitals.