Thursday, May 24, 2012

'Grieving' Mother's Day

Yesterday was the first Mother's Day without Oliver.  My first Mother's day as a grieving mother.  It was a difficult day.  It hasn't even been 3 months since his passing so of course I'm still grieving.  However, who's to say 3 years from now, 3 decades from now... I won't still be grieving?  Who knows.  Ed made me breakfast in bed and the kids brought in homemade cards and sat on the bed with me while I ate breakfast and read through the cards.  Ed made a card and said it was from Oliver... 'Three little birds' was the theme of the card.  It was Oliver's favorite Bob Marley song and I sometimes envision him singing it to me.  Reassuring me that 'every little thing is gonna be alright'.  Oh how I wish he could be here to make his own card for me to keep.  I sure miss that kid.

I have to work harder than ever to be happy on days like this and 'smile like I mean it' because I have three other children that I want to be there for.  I want to be present in their lives, but the grief overshadows so much of my life right now.  It just doesn't seem fair for the other kids to have to go through this and lose a part of their mom in the process.  I am so grateful for them and the love they continue to give and the laughs they elicit.  We still have many more memories to create together, even though Oliver is not here presently.  When emotions get the best of me I try to think that he is better off where he is.  The world is getting more and more wicked it seems and he will be spared from any more misery this life would have thrown his way.  My job, at present, is complete now that he has passed on into the next life and the next phase will resume once Ed and I meet him again.  I have to cling to this promise or I would be driven mad with wonder at what the next life holds.

It's been difficult just to be in the presence of lots of people, no matter where it may be.  I'm the most comfortable just being at home, far away from people.  Most people are well meaning, but just happen to say the wrong things almost every time I'm in public, so by staying home, I don't hear those things as much.  I have to shelter myself or I am a ticking time bomb and I'm afraid I'll let off some verbal diarrhea out on some random stranger that doesn't deserve it.  I just feel that I can't properly contain all of my emotions and want to explode.  I've been trying to do some deep breathing exercises and taking some time outs for myself to calm down and relax before dealing with certain situations before I snap.  I just don't understand people sometimes... especially their lack of common sense and compassion.

It was difficult going to church.  I wasn't going to go, but Eden really wanted me to because all of the Primary kids were singing for Mother's Day and I didn't want to disappoint her.  I went for her, but it was really hard being there.  I don't like being in the building where I last saw my child's face for the last time.  I can't go in the Relief Society room because that is where they shut the casket and we said our final goodbyes.  I just can't do it.  I talked to Ed and told him that I just feel like I can't do it anymore.  I'm at such a spiritual crossroads right now and don't know what to believe anymore and it is a horrible place to be.  It's not like I'm trying to do it on my own.  I would LOVE to have a strong testimony and feel the love of my Heavenly Father, but I don't most of the time.  I wish I did.  I think it would make things a lot easier.  I just feel lost and hopeless a lot of the time.  It is always hard watching the kids up on stage singing songs, especially today... when they are singing to all of the mothers.  My boy wasn't up there.  Saying 'he was there' doesn't help... it really doesn't.  I certainly wish it did, though.  Hearing about the scouts and father/son camp outs are difficult because he isn't able to do those things anymore.  The whole thing just sucks.  I'm jealous of other people... the people that have their kids and have no idea what it is like to be missing one of them.  I should be happy for them that they don't have to feel this intense emptiness, but I'm not.  Why is this MY TRIAL?!?  My son is DEAD!!!  He's DEAD.  My emotions are just all over the place.  I'm hanging on to the hope that this will mold and shape me into a better and more compassionate person.  The other option is bitter and hateful and I don't want to end up there.  So keep plugging away... that is what I do.

Anyways... I hope you truly were grateful to have your children this Mother's Day and realize what a true gift they really are.  There are many women out there that never married, can't bear children, lost a child to disease, accidents, miscarriage, war, suicide.  It IS a blessing to have our kids.  It IS a blessing to be a mother.  When someone asks you what you do for a living... proudly tell them... "I am a mother".  I've felt that I've had to try and justify my role as a stay-at-home mother many times.  People don't understand why I wouldn't work.  I'm grateful to have been able to make the choice to stay home with my kids.  We've sacrificed a large home, a nice neighborhood, boats and other toys, activities for the kids and many other things... but I was able to be with my kids and no one can take that away.  I was able to make memories with Oliver and all  of my other children and for that I am so grateful...  "My greatest blessings call me, Mom"... no truer words have been spoken.

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.