Friday, June 9, 2017

Life after Loss

A thought dump...
Recently, a close family member experienced a mini-stroke (or as best we can tell).  I couldn't believe how similar the symptoms were to grief and to baby brain.  That it was the first time he experienced a lapse in memory that strong.  I believe I've had that several times, but my brain is so fuzzy feeling I honestly couldn't tell you how many times.

I loss my daughter.  I then was a parent again to a child who is exceptionally curious.  The type you cannot take your eyes off of.  They type that make you believe if you aren't "on-it", you could loose another child.  Then I got pregnant again.  Then again.  I feel foggy.

I can't differentiate what of that brain fuzziness comes from age/experience, what comes from hormones, what comes from lack of good sleep, what comes from grief, and I find it disturbing.  I'm still waiting for something to feel normal or familiar.  I am three years out from the death of my oldest and a new normal is here, but it is so foggy and dreamy like.  I want it to be crisp.  Is that an option?  Will I get that?

I participated in a focus group with five other mothers who had lost their children to cancer last night. Powerful stuff.  The group alluded to this lack of good memory, but you could tell from the discussion that there was no lack of passion.

I have never felt stronger or more passionate about what is "right" and "wrong" in the world and I have never felt more limited in my ability to do something about it.  I am raising so many children.  Time and energy and headspace feel so limited.  I pray that I am putting that limited fuzzy brain to good use and that it honors my dear oldest.  That this time I am spending flopping around from to-do list to to-do list is actually getting something done.  That it all isn't in vain.  That I can stay grounded.  That I can differentiate between what is bullshit and what is real.  That I can find some patience in the fact that life moves slow and everything is changing all the time and things don't need to be perfect right now.  But is the path perfect?  Am I on the path? A path?

Limited brain capacity even for reflection.  Back to the to do list. :)

Thursday, December 31, 2015

2015 - Life carries on, exceptional moments come and go

My annual "no resolution" list.  Only reflections on what made this year different.

- First time vacation in the Smokey Mountains (not backpacking).  It was breath-takingly beautiful and we got a cabin much too big for just the three of us, but I don't regret it all.  An amazing winter trip.  Learned that my son is great at sleeping in the car.  Hooray!

- As a Fundraising Coordinator, exceeded both of my projected amounts for two major events... a local road rally race and also an international running group.  Both events raised more than they had ever raised before!  So happy to be able to help this non-profit in a way that is both fun and significant so they can continue doing the work they need to for those in need.

- First time trip to Jamaica (love).  First time organizing an international group trip.

- Started a book club for the first time with some friends and family.  Really enjoyed gathering and chatting books. Was able to read so many more books than I usually do!  The Nightingale and Winter Garden by Kristin Hannah, White Teeth by Zadie Smith, Orphan Train by Christina Baker Kline, Last Grave on the Right by Darynda Jones, A Tale for the Time Being - Ruth Ozeki, Get in Trouble by Kelly Link, and Breakfast with Buddha by Roland Merullo.  Honorable Mention to Say Yes by Amy Poehler and Furiously Happy by Jenny Lawson... both of which I read 3/4 of but really felt like they were strangely self-centered and somewhat obnoxious.

- First time we ever sold a house!  It was the year to do it too.  We received over our asking price which made it a very happy year as far as money.

- Speaking of money, started a peer to peer lending account.  I highly suggest this.  At high enough investment, so much risk is negated.

- With our baby in hand we moved to a new side of town.

- Became the treasurer of our local Compassionate Friends Chapter

- Sewed some children's aprons, a throw pillow, baby blanket, hair bandanas, purse for Katie and a bow clutch for Bethany

- Knitted some baby booties, winter hat for Gideon, lace fingerless gloves for Bethany, and a shawlette for me.

- Enjoyed a week with the extended family in northern Michigan.

- Found out we were pregnant with another child and we have been having a relatively easy pregnancy.  A real blessing when at one point we thought Isla would be our one and only.

- Watched over an amazing little boy.  He has become the toddler every parent fears.  Ridiculously adorable and also way too active and curious.  He has been so much work, but has brought so much joy.  I love this age.

That is all the big stuff I have for this year, at least for now.  Happy New Year everyone!

Saturday, October 24, 2015

Not that beautiful face

We moved Isla.  The realtor suggested that we take some of our more personal items out of the home to make it more inviting to potential buyers.  I removed your photos from the wall.  Now, as we begin to settle into home number two I ache ache ache to have to pull your pictures out and see that smiling happy beautiful face.  I miss you.
When I remember, it hurts so bad I can't even be of this world.  I feel floating above it really.  Like half ready to leave at anytime and half trying to stay here for the other parts of my life.  Sometimes it doesn't feel like there are other parts of my life.  Sometimes there is just you.
You will never not be the being that made me a mom.  Your birth alone changed me, but you didn't stop teaching us Isla.  You showed me how much my anxiety impacted the house.  When I would take a five minute break because I would be overwhelmed with the ins and outs of parenthood... you would knock on the door and ask if I was all done being mad yet.  You were sensitive too and it bothered you when anyone else was feeling anything less than perfect.  You snuggled in our bed until we were all ready as a family to go downstairs.  You were warm, sweet, and soft.  How I miss holding you.
Why do I have to stay here while you move on?  Why?!?!?  I don't understand why you got sick and I don't understand why you aren't here anymore.  I don't understand why I don't get to be the mom of a five year old daughter, planning her sixth birthday.  I loved being a young mother so much.  It felt like you and I were teaching each other so much.
You showed me that I didn't have control.  You showed me that I can stay in a home for weeks without leaving and that even pregnant and nauseous, I could carry 70 lbs up steep stairs and empty buckets of urine and feces without throwing up.  You showed me that everything is temporary.  Your life here, your happiness here, your suffering here.  I asked for help too Isla.  I really wanted things to be perfect for you, but they couldn't be.
I have this added compassion and empathy now for those that are sick and needy.  You taught me that.  But in the same floaty way of being half here and half with you, so many people's concerns seem so insignificant now.  If I know it is hard for them, but that they will come out okay on the other side, I can't be bothered.  So much of our life here is just not a big deal.
You are a beautiful soul Isla.  I don't know what else to say.  I miss you is all.  I am going to keep trying to be a good person and helping those around me until I have the opportunity to be with you again.  And if that time is a long long time from now, please let me find some meaning and value in the day to day.  Let there be some good moments.
And on a selfish note, I look like I have aged 30 years since you have gone.  Is that gonna reverse?  So much love to you my precious Isla bones.  You made life so good.  Thinking of you today and always.  Holding you heavily in my heart.  I love you love you love you.

Wednesday, July 15, 2015

I liked this "To The Grieving Momma" Post.

So much anger and sadness lately.  I have no idea what happened, but there is a rage inside that I can't even begin to touch on without fear of killing someone.  I started with a therapist two weeks ago to try and sort through some of this.  She said the first thing to do is to acknowledge what I am missing.  All that I am missing.  I thought that typing that out may be helpful.  The post above alluded to a lot of it.

I miss my daughter's curly hair and warm smile.  I miss her imagination.  I miss taking care of an older child.  I miss the feeling of proudness I received whenever out with her anywhere.  She made me feel like I was doing something right.  I miss the evening when she would be a goofball in our bed while her father read her stories.  I miss the mornings when she would open her door and come into our bed again and lay with us while we began to start the day.  I miss the cohesiveness of a healthy happy extended family, who isn't also burdened with such a significant loss.  I miss my friends that I had when I had a girl their child's age.  I miss the casualness that used to exist between me and everyone when everybody wasn't walking on eggshells.  I miss her singing.  I miss that I will never get the opportunity to get her involved in music (which I think she would have been amazing at).  I miss that she won't get to move with us and get excited about her new bedroom.  I miss taking her to the water, art fair, family gatherings, everywhere.  I miss her helping out with her little brother... he is so wild and we could use that third parent right about now.  I miss that I won't get to see her exceed expectations in school... she was such a little smarty pants.  I miss her humor.  I miss breaking down and having my husband respond as though it was serious.  Now the break downs happen so frequently sometimes he just has to watch because there is nothing to do to fix it or change it.  I miss feeling in control of my life.  I miss my brain being fully functional.  I miss having drive to make a difference and do great things.  I miss my short term memory.  I miss feeling capable of anything and being that energetic, ready for anything mom that I once was.  I miss teaching her things.  I miss holding her and giving her piggy back rides and reinacting the movie Brave.  I miss taking care of her.  I miss going on walks with her.  I miss taking her on bike rides to Barry's bagels.  I miss being in shape (the depression is making it very hard to get out and do that).  I miss the movement of the world.  In so many ways, I feel like it has stopped for me and now I spite that the earth keeps spinning.  I miss the future reactions from her I could have had when I have more babies.  I miss her and her friends growing up together.  I miss her being on the swim team.  I miss her giving me my first grand children.  I miss going on vacations with her and teaching her new things.  So much of her future was taken away.  I miss the Gloria Isla dynamic.  It felt pretty solid to me.

Monday, June 22, 2015

Sometimes I forget and sometimes I remember

I have been thinking about Isla a lot lately.  I am recognizing that I could probably use some help regarding my feelings about the whole situation... there maybe some post trama stress or maybe some depression or plain exhaustion at feeling so much so hard all of the time.
I forget so much specifics about her and it hurts.  And then sometimes I have memories so vivid that I cannot believe she is gone.
Tonight we went to the lake to swim.  I love to swim.  Isla loved to be in the water with me.  My husband and 2nd child not so much.  They will come in to the water.  But Isla wouldn't come out.  I was in the water alone.  It was dusk and the water was gorgeous and the trees surrounding everything was lit up by the setting sun and it was almost perfect.  I was only missing my baby girl.  When she was a baby I had taken her to this lake... just her and I.  She was only 6 or 7 months old.  I brought her into this chilly lake and she laughed and smiled so much.  She was shivering.  I debated when to bring her out of the water... she continued laughing through the chill.  We got out of the water.  Snuggled.  Ate.  Did it again.  It was the best.  Several of my favorite moments with her are in large bodies of water.  We shared that love of water.
We spoke at compassionate friends (a group for bereaved parents) this month about the fact you never heal.  Your world is different and less innocent.  You become more compassionate, but I would argue that I am also becoming less 'here'.  As cliche as it sounds, part of me died when she started throwing up on vacation and the doctors didn't take my concerns seriously and I knew.  A part of me died when she stopped being able to walk or hold herself up on her own.  A part of me died when she formally died.  And there is certainly some of me left, but it feels real beaten up right now.
I love my family dearly and I want to be the person I once was.  I do.  But I can't.  I don't think I can ever again and I am scared for what that means.  Like you slowly become the person you are (in my case 30 years).  And within a year I have become someone new entirely.  It was too fast and I don't know this new me that well.
I realize now that there are a few people that check into this blog every now and then.  You are welcome to read and comment, but please don't feel obligated to do so.  I seriously just need a place to vent sometimes and for whatever reason, pity is so frustrating.  I just want this to get better and I just don't think that is going to happen.  If it does I will be pleasantly surprised.
Also, what will that mean when it does get better?  I already feel like this life with Isla must have been a dream.  It does not feel real most of the time.  How can it get better?  How can it not hurt?  The only way I can see is if you forget that it happened.  I don't want to forget.  I don't want to forget how it felt to be her mom.  But it does hurt to remember too.  When you get something that wonderful, it hurts to not have it anymore.  Yuck.  Goodnight.

Sunday, June 7, 2015

I am an angry woman - where to write?!

Something has been noticeably amiss this week.  I have been mean and short tempered.  Angry and forgetful.  My patience is completely gone.
I am frustrated by my lack of available head space.  My short term memory loss is noticeable even to me and it makes me feel broken.  You can't be a talkative extrovert and not remember the punch line.
I am cleaning and purging in anticipation of a move.  Pissed that I have so much stuff.  Pissed that I have to go through it.  Pissed that half of the things are toys and coloring books and art supplies that are still in the wrapper because my daughter was never healthy enough to use them.  Half of them are princess related crap that I hate.
I keep reliving this very painful memory.  Isla gained so much weight with her steroids that she could barely move.  Changing her clothes was so hard for her.  She was also very warm being so big.  In the final months of her life she preferred to be naked.  She wasn't interested in much other than eating strawberry yogurt and our playtime simply didn't exist anymore.  I just fed her and carried her to the potty.  As my size increased too with Gideon, this carrying became increasingly difficult and I was moody and depressed.  One day she perked up and seem to want to play make believe.  I pretended she was the queen and that I would be her servant and go get her yogurt immediately.  When I came back up, I gave her a crown and a scepter.  She asked to see herself.  I hesitated, but liked to give her whatever she wanted in those dark days.  I turned the camera on my phone and put it in selfie mode.  Her eyes didn't light up when she saw herself. She didn't smile. I knew she couldn't recognize the girl on the screen.  She didn't know what she looked like.  We didn't have any mirrors in any of the places she was.   This was the end of our make believe that day.
I don't know what I could have done differently.  But I hate that moment.  I hate that she got that big and that she had to know it.  I hate the princess culture that suggests if you look cute with a crown than nothing else matters.  My daughter is amazing!  She endured more than most adults in her tiny life and with more grace than I could ever could imagine.  I wish she saw that.  I wish she saw herself the way I saw her.  She was beaming beauty.  And that fucking fat... she was so pudgy and overweight that her features were nearly pinched out.  I sometimes couldn't see the sparkle in her eyes.  I can feel the anguish in my gut.  It always is in the gut... like I was just sucker punched.  And then the strangest thing happens, the sadness and pain just stops, as though it doesn't run through me, but rather is just lying dormant for the moment so I can function.  Like I have some box with a lid on it in there, where all the sadness is just hanging out.  I want to vomit that badness out.  I want to remember only the good times, but there were bad times and I feel like I know too much.
I need an outlet... why do I not paint or play music?
I feel crazy... sometimes normal sometimes nauseous with grief.  I have found that I don't do too well with too much alone time with Gideon.  He is at a challenging stage and I just get so tired and frustrated... I have been filling the days with distractions.  Moving may just be another one.
This home I had with Isla was so special.  I loved it here.  But without her, it is a sad home.  So we are going to look for another home.  It won't bring her back.  But I won't have to go into a room she is missing from everyday and pick up a different baby who isn't her.  It is so weird.
I changed my job, changed my hair, will change my home... it doesn't matter... it still doesn't seem to be enough change to reflect the internal changes in my heart and it still doesn't bring her back.  I know she is okay and I will be someday, but right now it sucks.  I hate it.  I hate it.