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.

Friday, March 27, 2015

One Year


Today marks the one year mark without my first born baby here with me, although sometimes I believe she is here in spirit.  I tend to forget dates of significant things a lot, but this March 27 date haunts me a bit. Lots of tears this week.  My anger mostly stems from her suffering.  I selfishly miss her of course, I love how I felt being her mother and caring for her... but I hate what she had to endure.  And I hate that because she died, she (and we) can't "make up" for the bad times with lots more good times.  I have been so busy with a new job and a new baby that I haven't always been putting my feelings about this to the forefront.

I forced the issue as I watched video after video of her, from newborn to age four, from aunts, grandparents, parents... she is beaming.  She is so beautiful and so beaming that everyone in the room with her... everyone... seems also to be beautiful and beaming.  She brought that joy to others in a significant way.  Of course I miss her, but I am also so grateful that her little life was placed in the hands of Kevin and I.  I am so happy that we got to be her parents and know her so well.  She has changed me forever and I can't wait to see her again and tell her thank you.

How wonderful is this video!?!

Saturday, January 3, 2015

2014 - A crazy ass year

So I would be lying if part of me did not admit to being happy to see 2014 go.  I don't like to take on the next year as some challenge to beat.  Especially as an oldest, I tend to push myself plenty enough.  So I like to use the new year as an excuse to reflect back on what happened in the past year and in what ways Kev and I have grown.

This year was awful, deep, and wonderful all at the same time.

- My beautiful first born daughter Isla passed away.  This is the first close death I have experienced.  It lead to many other firsts, like first memorial service I have planned, or first body I have cleaned, or first cremation I have experienced.

- My beautiful son was born healthy (as best we can tell).  He was birthed in a tub which was a first.  I learned that being a mother to a son can be wonderful in its own right and that I could love another child.  Unfortunately, his arrival does not replace Isla, but rather makes me miss her more.  He reminds me of her and I believe she would have been an incredible big sister.

- I didn't work all summer, which is a first.  Last year I didn't work either but I was caring for Isla.  This year I did nothing, but read, cry, work out, sleep, and craft.  I anticipated it being a wonderful healing time, but it was really a time of nothingness - I remember the spitefulness of a gorgeous day because Isla wasn't there to go outside and play in it.  Maybe I should note my first major experience with depression? You really learn what is important in life.

- I completed my first 1/2 marathon.  Pregnant never-the-less.  At the time it did not seem like that big of a deal.  The running was strangely comforting during Isla's hospice time.  But I just recently saw a photo of myself from a year ago.  I was in better shape than I have ever been in and physically I remember feeling like an athlete.  It was a wonderful feeling although I feel it is not sustainable under usual circumstances if you are raising young children.

- For several months, I met with my grandmother weekly to craft.  I think we both thoroughly enjoyed the time together.  She just loves visiting and crafting.  She spoiled me rotten with home cooking during that time.  And pregnant ladies (and nursing ladies) LOVE eating.  My grandmother is so full of life and young at heart.  It has occurred to me just recently that she won't be here forever.  I value my time with her.

- Lots of sister news this year.  A sister grabbed one of her dream jobs, a sister got cheated on and struggled with depression, a sister whooped ass on her certification test, a sister got married, another sister damn near experienced divorce.  While these aren't things that happened to me.  I feel very close with my sisters and these experiences definitely impacted my life this year.

- My first time to Savannah, GA, Phoenix, AZ, and San Diego, CA.  All beautiful places.

- I felt really good this year about helping a couple of people.  I crafted many children's aprons for Isla's old preschool and they sold enough to get the preschool a new wooden children's play kitchen.  Another woman I know lost her son.  I made five pillows out of his old shirts for all his sisters. I was able to be there for a close friend the very day that her son died.  That felt good.

- This is the first year in my life that I have confidently and comfortably said "no" to most things.  Time with people can be very taxing and this is new for me.  I used to be more extroverted.

- I left a corporate science job to be serving part-time in a non profit as an event coordinator.  We will see where that leads.

- This seems small to most, but this year was the first time in my life that I have cleaned the kitchen on a daily basis for five days in a row.  I am realizing how stressed out I get with dirty and packed spaces.  Cleaning really really helps.

- Lots of going with the flow, lots of seeing where everything is going to take me, recognizing my lack of control in my life for the first time.  Very very unnerving.  I have so much to learn.

Sometimes it just feels good to type or write this stuff out.  My goal this year is to see what happens and accept it.  Be open minded and get in a bit of shape again.  I think that will happen anyway though, because being rolly and not fitting into clothes sucks.  On that note, peace out.

Monday, November 24, 2014

Tomorrow is Isla's Birthday

My little girl would have turned five years old tomorrow.  She won't.  She passed away this year after a heroic battle with cancer.  She didn't want to go.  I didn't want her to go.  And yet go she did.

Her dad and I are still reeling from her death.  At first I experienced an immense sense of relief.  Her suffering needed to end.  Then, quickly, the grief stole the little peace I had.  My pregnancy stole the little physical comfort I had.  The depression mixed with excitement for the new baby coming was overwhelming.  I still feel that way even though he has arrived.  Deep gratitude and love.  Overwhelming anger and sadness.  Longing for what can't be.  A family of four where there is now only three.

I hear we are handling it all pretty well.  We get out of bed.  We even go to work.  We take care of our newborn's needs.  But I also cry and get angry at little things that are of no consequence.  That is all part of it so I hear.  I also hear it will get better.  Honestly, as a know-it-all oldest, I am impressing myself with my ability to believe others who have been there before.  I hope they don't let me down.  I need to know it gets better than this.

I want so badly to be with her.  This life is hard here without her here.  It is as though I had no life before she was here.  What did I do with myself?  Because now without her, most things feel meaningless.  She brought me immense joy.

I just want to know she is okay and that she knows I love her.  That I would take her place a thousand times over if I could.  That I am so sorry something so horrible happened to her.  That she deserved more than this life could offer her this time.  That she was a tremendously special little girl.  That while specifics are slowly drifting away in my broken memory, I am never forgetting how she made me feel, how she lit up a room, how she giggled, how she stared so intently at things she was trying to learn, how she always wanted everyone to be happy, how she made introverts feel loved, how happy she would be when she danced, how she commanded her little world and all of us lucky enough to be apart of it.  

I miss you Isla.  This month has been the hardest by far.  I want you here little girl.  I have to stay here right now and take care of Gideon.  He needs me.  But I can't wait to be with you again.  I have said it before and I will say it again, you made my life so wonderful.  I love you in a way I can't even express.  F the english language for not have the right words.  Please be at peace my sweetheart and know that we are celebrating your birthday tomorrow.  I think of you always.  I love you I love you I love you I love you I love you I love you

Sunday, December 16, 2012

It has been a great week for Isla



 We are still doing our chemo.  So far, so good.  During this round of chemo we received a new drug, etoposide.  I was quite fearful, however Isla is handling it okay again.  Without fail, she is amazing me again.  I am very proud of her.
Her extended family is such an intricate part of her comfort and healing.  

So for whatever reason this week seems good.  I am not so afraid.  I am feeling a bit more comfortable and confident taking this on.  Isla even took her medicine at one point this week and proudly proclaimed, "I didn't even cry!  It is working!  I am all better!"  

The horrific shootings in Connecticut on Friday have changed my outlook as well.  I am thankful for every day with my girl (even the ugly days).  We can't take back those events, but we can make sure our immediate world is filled with a little more patience and love.  Our current culture breeds this type of discontentment and purposelessness.  I think strong family and communities are the important base that so many people are missing.  Just feeling incredibly grateful I can be a part of a loving family and community.  

Thinking and praying for two other friends whose babes are struggling in the hospital this week.  Also excitedly awaiting the healthy birth of a friend's baby in the next week or so here.  Looking forward to Christmas.