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.


Saturday, December 8, 2012

Judging moms? I'm judging the media


As I am starting chemo this week (week 4, round 2, day 3) I am having major mom empathy.  I passed a curly haired girl moving her IV on our floor this week.  She looked out of place here.  I think she knew it too.  Based on the kind of lost expression on her and her mother's face I suspect they have only recently learned of their cancer.  My emotion took me by surprise.  I felt so bad for them.  Which is strange considering that we are on this floor for the same reason.  I rarely feel bad for us... sometimes it can even feel a bit normal.  Cancer, chemo, get it done, go back to our lives.  This family will hopefully get their groove too, but for now I just hope these first weeks go by quickly.  It seems learning your child has cancer is one of the worst parts of this whole process.

So you may have heard about this mom: Mom takes girl with leukemia out of the hospital.  Read the article, but withhold your judgement.  Chemo is crazy dangerous in and of itself.  And this poor girl also lost a large portion of her arm.  The ignorant comments by the police chief are rather infuriating.  I don't know this woman.  She could be some sort of horrible being, but I suspect her and her daughter are living a real nightmare.  She didn't know how to stop it, because saying "please stop it hospital" is usually not an option.  So she left.  I realize she could have done a few things better, but the media portraying this mother as an asshole is likely inaccurate.

Mass media is the worst.  I think we can all agree on that.

Here is article #2 I would like to share with you: Parents stopping chemotherapy for Michigan 10-year old cancer patient is 'death sentence', state argues in court appeal.  Unbelievable.  What a poor use of the laws that are supposed to protect children.  The child himself said he wanted to die.  Many parents are not afraid of the death as much as we are afraid of the suffering.

Can anyone love a child more than a parent?  I would trust most parents seek to do right by their child.  If or when they do something from the outside that seems completely insane we need to take a closer look.  How insane is it that our number one best effort to putting cancer in remission is to put more toxins in your body.  Toxins so strong that, at minimum, they limit your body's ability to fight additional infection and increase your risk for additional cancers!  What the hell.  I believe when all is said and done our cancer "cure" will not take the chemo form at all.  Future generations will look back at this as we look back at lobotomies, with great horror and shock.

Isla and I are at an amazing hospital.  Certain professionals view me as an important part of the team.  Others label me the "difficult" mom.  I am trying to work with them, but if ever I get the sense that they aren't giving me their best effort or that her care would be better managed from home, I would leave.  When all is said and done, my daughters health, happiness, and well-being will determine every decision. I look forward to a day when this will determine every decision a hospital makes.  In my dream world all adults working in the pediatric's hospital are exceptional at working with children (not just that they knew a couple) and they all understand the importance of sleep and happiness.  We need time to get our chemo and blood and fluids and so forth and so on.  But we also need time to be rocked, time to have uninterrupted sleep, and time to play with our friends and family.

So we are still here.  Going along with our assigned protocol.  It seems like the best option as of yet and she is handling her chemo like a champ.  Our quality of life is good.  Honestly, I can't tell you a time when things have been so clear for me.  We are a one-goal family right now.  We are enjoying the company of family and friends and making life the best we can.

Haha - and because this was originally started as a crafting blog I will post a bit of those too.










Sunday, November 25, 2012

Feelings...




So my baby has cancer.

I want to write and share about it, but I am certainly not sure how to begin.  With my emotions?  With the chronological order to which it happened?  With my advise to the next people that may encounter such tragedy?

So I will ramble.  It will make little sense, but I promise it will be honest.  

I think that I am still in shock.  It has been exactly one month since we found the tumor.  Her third birthday was noted most significantly by the amount of hair loss we experienced today.  Other things to note - it was a day I did not have to administer a shot, she pooped twice, and everyone who visited promised me they were healthy and washed their hands.  Life certainly has changed around here.

I am out of control.  The entire situation is beyond my capabilities to fix.  Taking control of the moment to moment needs has worked well for me as a coping mechanism.  The big picture rips me apart.  Focus on the little picture.  She is handling the chemo well this cycle.  She eats only a little, but she does eat.  Oh! There is a daily poop - we don't have to administer the poop medicine today.  Small victories, but victories never-the-less.  

I am one of those exceptionally lucky people who is surrounded by love from my family and friends.  Everyone wants to help, but I have to keep explaining that there is only so much to do.  We may be perfectly fine when all is said and done.  We may not be at all.  Either way it is out of my control and their's as well.  My parents explained that we are "living every parent's worse nightmare".  I would agree.  So I know my fellow mothers are like me and want to fix this.  We can't.  It isn't that I don't have hope, but rather I know where my capabilities begin and end.  I can't cure cancer.  

I love my daughter.  Like any good toddler, she willingly participates with most hospital procedures because her parents tell her too.  She may be afraid, she may say she doesn't want to, but she does it.  She trusts us.  It is no different to her than the first time we tell her to let go at the top of the swirly slide.  She trusts that while it may be scary, a safe landing is in store at the bottom.  Her parents said so.

I HATE that I cannot promise a safe landing.  I hate that I give her those trust-me-it-will-all-be-okay eyes and that I can't deliver.  I want her to feel strong, comforted, and loved.  These are the things I, as a mom, can do.  But I can't promise we are okay this time.  I must throw endless love and energy into a situation that may totally blow up in my face.  Some days I can handle it.  Most nights I can't.  This is a crazy heavy situation.  

We have a great "chance" of beating this thing.  But when you are one of only 20 children in the US who even get this cancer type a year, you stop believing in "the odds".  I believe what I know to be true.

- We are loved.
- We are at a top hospital
- My girl is tough as nails
- My girl has excellent health with the exception of this gargantuan tumor
-  Nobody is taking this news and tucking it away.  We have meals being made, drugs being looked into, cleaning being completed, cancer research being reviewed, etc.  This cancer will not be beating us because we didn't know better.  We will know all we can.  We will advocate on her behalf.  And when we have done all we can in a day, we will relax and we will sleep (because that is important to).

We have a lot going for us right now and I pray that it will stay that way for the rest of our days... or at least for the rest of hers.  She is my beautiful baby girl.  Here's to you lovey-dovey on your third birthday.  You continue to teach me so much.  I am so unbelievably happy you are a part of my world.  Stay with me girl.  We can do this.  We can do this.  We can do this.







Thursday, June 28, 2012

Teresa's Baby Booties

Isla sends these off to Morocco with love.


It took me forever to truly finish these because I do not know how to weave in ends for crocheting.  If anyone knows of a good tutorial you should share.  The small vintage rose buttons were given to me from a crafty friend (who loves buttons I should add, we spent one whole craft night just going through her button collection).  The booties were made from leftover sock weight wool yarn and I just love the way they turned out.   The pattern is called Crocodile Stitch Booties by Bonita Patterns.  Very fun to crochet.  Crocheting is new to me, but I am now convinced of its quickness and beauty.

I made this top too, although mine is not as cute as hers.  You gotta practice this stuff right?  I will try to post a pic of that soon.

I have been doing a big craft project which is kind of a secret until September - which sucks because it is pretty awesome and I want to share now.

Also worked on getting all the invites made and out for my little sister's wedding.  She liked them a lot which is all that matters.  Maybe a post on that to come too.  We will be rocking out some etsy bridesmaid gowns too. 

And in our spare time we are completing the Summer of Fun 2012 LIST!  I was sick on missing out on Michigan's summer awesomeness just due to busy work lives.  We are treating the weeknights like they are vacation days.  We are swimming, we are growing veggies, we are going out a lot to the ice cream parlor... and I couldn't be happier about it.  Maybe I will post that list soon too.  Because there is still a lot of time to fit that fun in too.

I will leave you with this awesome picture from our Mom's Group outing today.  The planner hosted an International Mud Day Party.  What a riot.  You may be suprised how many children do not like getting muddy.  Have a great week.  We are off to the lake!




Friday, May 25, 2012

Mittens in May

I think these were actually finished in March or something, but you get the general idea.  They were made out of leftovers from a library book pattern.

Unlike the sweater I knitted her - she actually wanted to wear these.

In fact, I couldn't get her to take them off even though she was just inside watching sesame street.  This face is what happens to us when the TV is on.  Not "us" as in the general population of humans... "us" as in myself and my daughter.  It is a strange and embarrassing drone-out of everything.  Everything but the TV that is.



Details: A real quick knit up with worsted weight wool yarn.  From the book Soft and Simple Knits for Little OnesRavelry link here.


Thursday, April 26, 2012

"There is no bad weather, only bad clothes!"

I enjoyed a wonderful morning today feeding the ducks (not feeding the invasive mute swans - as always they were being inappropriately aggressive) with some Isla aged friends and some moms.  It was not particularly warm, not sunny, and had the potential to rain.  I called one mom prepared to tell her we could cancel if she would like and we can move it indoors.  Her reply, "Oh we would prefer some outside time if you don't mind.  Max loves wearing his rain gear."

"So does Isla!  Great!  We will see you there."

Another Mother showed up who initially thought we were a bit crazy, but then agreed the outside time would be good.  She had just watched a short documentary recently about Kindergartens in Norway that are almost entirely outdoors.  I found the film and wanted to share it.  Inspiring.  To think I was going to pass up an outing due to the chance of rain.  These kids show it is our fears keeping them inside, not theirs.



I have outdoor expeditions to thank for much of my confidence, my close relationships, and my love of nature (and I didn't camp or pack until I was 14).  I have personally witnessed very young children overcome amazing challenges (both mental and physical) as an outdoor educator and facilitator.  The great outdoors provides creative learning experiences that cannot be mimicked in the classroom.

At one point in this video you will see the instructor teaching the five year old how to use a match, at another point how to use a hammer.  Risk can be managed so that it provides an atmosphere of learning and growth.  Trying to "protect" our child from every little thing, may present more harm than good.

I love this video.  It embodies many of my beliefs as a parent and also just as a person.  I hope you like too. 


Winter gear babies enjoying that snow at 0, 1, and 2 years of age!  Doesn't really add to the point, I just like seeing that daughter of mine.
Speaking of the "no bad weather, only bad clothes" line... I have so many Michigan friends that do not have good winter gear.  I know we aren't northern Norway, but it gets cold here!  It is much easier to embrace the wintery outdoors with some comfortable and warm boots.  Plus winter gear can be as fashionable and warm as summer gear.  I LOVE these mukluks.  Still waiting for the day I can afford them.  :)