Thursday, May 10, 2012

Still here...

It's been hard to blog and relive everything that has happened since Oliver passed.  I've been working on the same blog post about Oliver's visitation for over a month now.  It's so hard to go back there and bring up the emotions again.  Life has been difficult.  I've become more of a hermit because I just can't be around people.  I feel like I'm going to explode on some innocent bystander because of the intensity of all these mixed up emotions raging inside my head.  My fuse is shorter than ever and I just can't stand people's trivial crap.  I don't want to snap at anyone so I just tend to stay home where I am protected from hurt and I can't lash out at anyone... even if they do deserve it! 

People just don't understand death... especially the death of a child.  There are well meaning people out there that have been supportive and I cling to those people.  I think the only people that truly get it are those that have lost children, especially losing them to DIPG.  We share an unfortunate similarity in watching our beautiful children being slowly robbed of their ability to function in every aspect.  It is heartbreaking to know that you have absolutely no control whatsoever in slowing it down or stopping the progression altogether.  To witness your child start to stumble and fall and then lose all ability to walk, sit up and move.  To hear them start to slur their speech until you can no longer understand what they are trying to say, all the while watching them get frustrated because you can't understand them, until finally you hear nothing as they no longer can speak.  To see them choke on food, liquids and eventually their own saliva and then start to drool as they have no control over their functions.  To see their skin stretching all over their body and eventually ripping open and causing sores that won't heal because of the steroid that they have to take to keep the symptoms of the tumor growth at bay.  We had to watch them struggle, watch them be humiliated by having to wear a diaper and crawl on the floor to get around.  We had to turn our homes into make shift hospital rooms and watch as they breathed through oxygen tubes and wiped off seeping eyes that crusted shut.  Slowly... we had to watch them sleep more and eat less, knowing that they were soon to pass away and there wasn't a thing we could do, but to watch and pray that they weren't in pain and weren't scared.  It is sick.  I am heartbroken.  I am angry.  I am confused.  I am not the same person I was... nor will I ever be.  I have to endure a life of people trying to rush my grief.  I will NEVER get over this.  I can't.  My mind replays this journey and I have to relive some horrifying things.  I'm sick of people diminishing my grief by trying to fix me.  They trivialize my loss by saying the most offhanded things.  Don't try and FIX ME, just be there for me... listen to me... support me.  If I want advice I will say, "I need some advice..."  Everyone thinks they have the answer.  Everyone's journey through grief is different and I happen to have a mental illness which makes my emotions like 100 times more intense than normal.   A fellow DIPG mother recently said that when she is around happy people she feels herself withdraw even more.  I completely understand that.  Most people have no clue and tell you to just get out there.  They are what I like to call 'blissfully ignorant'.  We want to be positive and find the silver lining, but WOW... give us time to get there!!!  There is no timeline for grieving.  I will be grieving Oliver's death for the rest of my life.  Don't get me wrong... we celebrate him and think of him and talk about him every single day.  We know he's here... but he's not HERE.  I know that his spirit is around us, although I don't feel him near.  It is extremely difficult that I don't see his smiling face each morning.  I don't read to him or play games with him.  I don't hear his laughter or his silly one liners.  I don't see him sitting across from me at the dinner table.  I don't feel his soft skin or the weight of his body as we cuddle on the couch.  He was always my cuddler.  He's not here to participate in holidays -- which he loved.  Holidays have been really hard.  I've been trying to go back to church, but it is horribly difficult sitting in the same room where I saw my son's face for the last time and being around people who are so 'blissfully ignorant'.  It's hard to go anywhere... not just church because there are 'blissfully ignorant' people everywhere.  I used to be one of them.  Our society does not know much about death and grief and what life is like after you lose someone, especially a child.  It saddens me because so many people are grief stricken and are rushed to get back to normal.  There is no 'normal' anymore.  You can feel fine one minute and be a complete wreck the next.  Your mind becomes mush and you can't remember anything because the sadness takes up so much of your brain.  It's so hard to explain... I know other DIPG parents will 'get it'.  I hope that by sharing our journey, more people will 'get it' in a way that they can be more of a support to those that are suffering so much.  It's more gut wrenching than people can possibly fathom.  It really is.

13 comments:

Mike Fitzgerald said...

I get it. The past few days I have been dreaming about Saoirse, I hear her crying for me.

Carrie said...

People that tell you you need to snap out of it, or you need to get out more, or that you need to go back to the person you were before do not understand at all. Not saying I understand everything by far as I don't, as I have never lost a child or had a child. I have never had to watch them suffer and lose their abilities to DIPG. But I relieze you are never going to be the same as many of us don't expect you to be. Ollie was a part of your life for over 10 years, even though he is gone he is still part of your family and I also can't imagine that empty chair, or his beautiful smile and contagis laugh. I hope by saying any of this it doesn't come out wrong because I never want to say anything to hurt you because of my loss of words or saying the wrong thing thinking it was right. I love you all dearly and you are in my prayers day and night.

Michelle said...

Stacy, I have been following your story for awhile now. I just wanted to say that you and your family are amazing!! For a family, especially a mother, to go through what you have, I can't even begin to imagine. My heart has broken for you so many times, and this post made me cry. I'm sorry that you have to ever encounter someone who is "blissfully ignorant", and I don't know how anyone could ever think that you could get over the lose of a child, especially going through such a painful situation. I have nothing but sincere admiration for you, and hope that you will be able to find at least a little comfort. I will keep your family in our prayers, and I'm sending lots of love your way. I wish I could just give you a big ol' hug!!! Michelle

lisalisa said...

I am so, so sorry. I can't even imagine living through what you have just descibed. I think that I would feel exactly how you do, especially about the advice givers. Even people who are well-meaning have no idea how much their words can hurt. I know that this doesnt even compare, but when I was really struggling with my mental illness I went through similar (but on a much smaller scale of course). People would say "you have to be strong for your kids" and that was the worst. I wanted to scream in their face "I KNOW! I'M DOING THE BEST I CAN! MY STRENGTH GOT ME OUT OF FREAKING BED THIS MORNING, AND SO FAR I HAVEN'T KILLED MYSELF, SO I GUESS THIS IS A GOOD DAY!". I don't know. I guess people mean well and they jut want to feel like they have said something useful, but they have no idea how much words can induce guilt in someone who really is doing their best to just make it through the day.

XOXOLisa

stephanie said...

I wish i could change this and i wish your sweet son was still here.

Anonymous said...

Staci, you are right we don't get it and can't understand. I work at a hospice and you are right that people are uncomfortable and want to rush you. I teach a class on grief, and we go over the worst things and the best things to say. I truly can't imagine trying to get up every morning and function knowing a part of you is gone forever. Oliver didn't deserve this horror. Nor did you or your family. He was a gift to all of us who got to peek into the window of your life, and learn a little about what Life 's blessings really mean. I am forever changed by knowing him, and you. I have a child who is chronically ill, and I am always wondering what comes next. We learned to take nothing for granted, but I still have no idea the depth of anguish you feel. Please know from one mother to another, I am very sorry, and I wish you peace and life.
Take care, Elisabeth

Naomi said...

Stacy - thank you so much for sharing these emotions. I will never understand what you are going through but I feel reading your blog helps me understand how to help those in my direct circle of influence here in Idaho who are struggling with loss. Oliver's story and your example has taught me to cherish my time with my children even more. Whenever I'm having one of those days when I feel like pulling my hair out I think of you and others that I know who've lost children and it reminds me to take a deep breath, look deep into the eyes of my children, and remember how precious every second is with them. I love you very much and your family is in our prayers.

Rachael M said...

Love you, Stacy. Grief is SO isolating and painful and hard-- and personal. There are so many ways to experience it and cope with it. And you're right, it's a life-long process. How could anyone expect you to be feeling anything close to "normal" yet? Do you ever feel like just snapping at someone who thinks you should "move on" and say, "HEY! I don't feel this way because it's FUN, you IDIOT!" Or is it just me? ;) Anyway, you and your family are in my thoughts and prayers constantly. May God bless your broken and aching heart.

The Breckons said...

Thank you for posting the truth of what you are going through. I so appreciate you helping others try to "get it". Please know that many out there who do not know you are continuing to pray for you. I do not know how to help, or what to "say" for that matter, so I will continue to pray.

Krista said...

I know that most of us " blissfully ignorant " people will never live through what you have. I don't mind being called blissfully ignorant...I know I don't understand. I do love you and your sweet family. It is because we love you that we want to find ways to help you keep living life and find some happy days. We do not mean to rush, and I hope I have never made you feel that way. I love sitting and laughing with you, my dear friend! I miss hearing Ollie's laugh...I can still hear him when we go to a park, or when I look at pictures of him. He will always be in our hearts as will you and Ed and the kids.
*HUGS!*

stephanie said...

I hope some how you can feel better, although as a mom myself i cant imagine how you "go on" without your child. My oldest is 10 too, i have others,but would still be destroyed if he were gone. I dont know why these things happen to good people. Its cruel and unfair. I hope those who know you can give you the space you need. God bless your family and you.

Anonymous said...

I haven't been in your shoes as far as losing a child. I cannot imagine your pain and sadness. I do, however, know what mental illness can do to a person, especially when there's a lot of emotion involved. I am not here to give advice, but I just wanted to let you know that people, strangers, that have been touched by your family still pray for you to find a sense of peace.

Bethel said...

Praying for you and hoping you know you are normal and allowed to grieve in whatever way you need to and for however long. You don't "get over" a loss like this, you just "get through it." Love to you from someone who doesn't even know you, but feels for you on a very human, emotional level. Beth