The Long and Winding Road
Posted by Mishi Methven on May 27, 2012
The Long and Winding Road
Lyrics: The Hollies
The road is long
With many a winding turn
That leads us to who knows where
Who knows when
But I'm strong
Strong enough to carry him
He ain't heavy, he's my brother
So on we go
His welfare is of my concern
No burden is he to bear
We'll get there
For I know
He would not encumber me
He ain't heavy, he's my brother
If I'm laden at all
I'm laden with sadness
That everyone's heart
Isn't filled with the gladness
Of love for one another
It's a long, long road
From which there is no return
While we're on the way to there
Why not share
And the load
Doesn't weigh me down at all
He ain't heavy, he's my brother
He's my brother
He ain't heavy, he's my brother...
I'm scared.
There has been a change in Stella over the last two weeks, and it's making my heart squeeze. Aimee and I continue to get up each day and greet our kids with enthusiastic smiles and energy, but it is forced. We are living with 100lb weights on our souls.
Stella is tired. Her body is tired, I can see it with my eyes. Eyes that have carefully watched this child grow, flourish, and now fade. Eyes that have been looking, waiting, watching for the changes-- no matter how subtle--her entire life. I remember watching for her first tooth, for signs she would start crawling, for her first word, her the first time she said "up" and wanted a hug. But I never thought I would be looking for signs of her body shutting down when she was still just an adorable little girl that should have her whole life ahead of her.
Of course, we don't really know 100% if Stella is just resting for a couple of weeks and then will bounce back for some more adventures, but I feel an uneasiness about it all. Every time a month or season changes, I become more aware of where we are and as spring fades into summer and the flowers start to bloom and the sun beats down on our bare arms, I sense that Stella is not present a lot of the time. Her body is here, but she doesn't have the energy to share her spirited personality with us much anymore. A couple of smiles a day and then her head falls back in exhaustion. A couple of bites of food and then her mouth slams shut and she refuses to eat anymore. A couple of attempts to focus, but then a fogginess overcomes her beautiful blue eyes, the left one which is now permanently droopy.
As Stella's cancer has progressed, more and more often I get people telling me that they don't or can't come onto this blog because, "it's too sad". At first when people said this to me it made me so angry…I felt like saying, "It's too sad for YOU!!!!? This is my LIFE, and believe me it's too sad for me too. Unfortunately, I don't get a choice". But now I've realized that I'm not really mad when people say that to me, I'm actually jealous. I wish I could just not have to think about it, could just choose not to come on here, could forget about what's happening for just a little while. It takes a certain amount of bravery to come to this blog--- to care about Stella, even knowing that she is only here for a short time. To tell your children about her and show her pictures. To keep showing up and calling and being our friends, even though we often can't reciprocate very much, and flake out all the time. To let the tears fall down your cheeks for a little girl who should have gotten to live. Who should be running around the living room right this second, loudly torturing her little brother and demanding to go to the park after dinner. But instead, she sits on the couch in heap of blankets and red hair with her eyes closed to the world, using every bit of energy she has to just stick her tongue out for "yes" when I ask if she is thirsty.
I am so grateful for the parents of other children who have died that have reached out to us, shared their stories and their children. It gives me comfort to know that others have walked this path of burning stones that sear your soul from head to toe, and have survived. I know that Aimee and I and our friends and family will get through this immense heartache and slowly learn to laugh again. We have no choice. But I also know this part of the long, winding road we about to travel is fraught with tears and will take a lifetime to truly understand.
For now, our focus has shifted. We are no longer trying to decide whether to take Stella swimming or to the farm, whether to bake chocolate or vanilla cupcakes. Our sole purpose now is to make sure Stella is pain-free, surrounded by our love and getting whatever she wants that gives her comfort. The focus now is on making sure she gets a few bites of food when she feels like it, a few sips of liquid, and a whole lotta kisses.
Aimee and I have spent three days straight on the couch in a tangle of arms, legs, curls and dreams. No one is complaining, we are just breathing in deeply the sights and smells of our daughter, taking pictures with our eyes and hearts of the freckle on her left hand, the long strawberry-blonde curls that frame her face, the nails painted bright purple, the cupids bow mouth turned up slightly at the sides, the soft rise and fall of her chest as she sleeps, her tiny hand resting lightly on my pregnant belly, her long eyelashes kissing the tops of her cheeks.
How long do we have left? No one knows…no one has really known all along…but there is a certain knowledge we all have that her time here on earth will now be measured in weeks, not months. That she will not ever bounce back to the girl who a month ago was horseback riding and painting with her mouth. Maybe it's four weeks…maybe eight…maybe more…maybe less.
Aimee and I are not okay, but we have both acknowledged that we are okay with not being okay. How could we be anything but hurting right now? All of us are aching silently in our own ways… our families, friends, anyone who has been moved by Stella's story. Together, we survive on love alone for now. Love is the only reality that wipes out all sense of time, overcoming all memory of a beginning, and all fear of an end.
We love you, Stella and whatever is coming, whenever it is coming, we will love you forever.
Stella and Sam play on the front lawn this afternoon:
Our Kids
Gracie and Stella sit under the tree together:
Our girl on her throne!
Comments (61)
Paige :
Jun 11, 2012 at 04:05 PM
I found your blog via a friend who lost a child with this same type of cancer a couple of years ago. I can't imagine the pain, helplessness, emotional and physical exhaustion you must feel to be going through this. But I would like to say that just from a stranger looking in, that you are all doing such a wonderful job. You are all absolutely wonderful people and it shows. Thank you for sharing yourselves with us and reminding us what its like to be selfless and how to be strong. Your family and your beautiful daughter will always be in my heart.
Lisa:
Jun 01, 2012 at 10:41 PM
I have never commented here before, but I have been reading Stella's blog since the fall. I feel compelled to write today since you mention people who say this blog is too sad. I beg to differ. To me, this blog is a testament to your strength and I love reading of how you make the most of your time with Stella. She is loved and living a beautiful life and you are giving her all you can, even as you acknowledge that her end will come. That is lovely and beautiful and worth reading. I feel as though I know and love you all. I am always thinking of all of you and I will always be reading.
Catrina - Cat the Dog Walker:
Jun 01, 2012 at 10:45 AM
Dear Mishi, Aimee, Stella, Sam & Flick!!!
Love you all. I learn life lessons every day I visit Stella's blog. Without evil, the goodness that is Stella wouldnt exist.
Please don't give another thought to those insensitive clods that find your blog 'too sad'. As many of your loyal followers have commented - just go away quietly if you can't honour Stella's journey with something positive to say.
(PS. I can always send Miss Lucy to have a "chat" with any offenders - she's not bitten anyone lately so is plenty hungry and ready to dole out any correction needed. :)
Your incredible family is in my heart and thoughts constantly.
Thank you for taking the time to share with all of us that can't be there in person. Hugs, Catrina, Lucy and The Gang.
Heather:
Jun 01, 2012 at 12:10 AM
Something quite profound and beautiful was said by a man who nearly lost his three children in the terrible tragedy in Qatar a few weeks ago (him and his wife decided not to take their three boys to daycare that day) He showed up to a candlelight vigil for the victims and their grieving parents. I'm paraphrasing but he said, I wish that everyone here who still had their kids could take on some of the pain from the parents that are suffering. If we all took a little bit then maybe they wouldn't have to feel the unbearable pain alone. I think that's why we all come on here. To listen and support you. Some of us know your pain intimately and some of us can imagine it. I think we continue to meet here in cyberspace and let you know that we love you because it's the least we can do! Because Stella's life and legacy is meaningful and important and if it were my child I would want people to know about her. Because if we were having our hearts slowly torn out, we would want someone to give a damn!
I'm hurting with you, crying with you, and even though we are in the virtual world, I hope you feel all of us banding together to try and light your way as you help Stella navigate her path. Love to Stella and all of you.
Julie B:
May 31, 2012 at 10:01 PM
I may not be in touch all the time, but you are certainly not far from my thoughts and heart. Hugs n prayers as you continue to travel down this sad and unfortunate road of life. God bless you Stella! xo
Colleen:
May 30, 2012 at 11:13 PM
While I have never met Stella or your family I check in each and every night since the first weeks of your journey. Stella has found a very special place in my heart. I think of her and her mamas often and ache for the path that your lives have taken. Your family is in my prayers each night and as I hold my little ones I am often humbled by the gift that Stella has given; my girls know a more patient and compassionate mom because I am reminded daily that today may be my last with them, that life can turn in an instant. Thank you for sharing your journey and Stella with us. We will pray with you and keep you in our thoughts.
David Layfield:
May 30, 2012 at 07:16 PM
Never has being left so speechless felt so loud!
As an extremely lucky and grateful Dad I already cherish every day that I was able to be part of such an amazing creation as my daughter...
Reading your'bleeding' it is impossible to not imagine the pain burning your souls heart...as it would feel if I were faced with your beautiful desperation...
The always present elements in your heart searing blog are always in my view dominated by two things.
Stella's enormous strength of spirit and character...despite the exhaustion life seems to give her she always has a smile with her no matter how rare it always comes...
...and your own astonishing love...it flavours all you do and all you say...
As you say (with typical loving forgiveness) that people have admitted to struggling to come by as the weight of the sadness is beyond them...so I feel that the eloquence that you are gifted with to express so absolutely how it is living in such an emotional storm, is so beautiful to read but then as you express things so well I share, albeit a minuscule amount, your sadness
I join with all your other friends and family around this crazy World we live in to send you love and strength - you are of course writing such perfect memories of these precious times
With hugs around the World David x
vanessa:
May 30, 2012 at 05:35 PM
I have been following your sweet Stella since i heard about her story through the website weddingbells (babybells). I want you to know i think of your family often and i read your entries through tears, i cannot imagine walking in your shoes every day. I wish you all well.
Fiona:
May 30, 2012 at 11:23 AM
I have been visiting your blog since my friend Sara from work, told me about little Stella. Every time you write, Mishi and Aimee, your honesty, your love for one another, your phenomenal strength, your love for your family, your heart wrenching eloquence, your abounding love for Stella and Sam, your amazing courage, your love seeps through. I do not know the pain you go through every minute of every day, but I feel it with you….
I watched my brother and his family in the US go through what you are. They kept vigil and waited with love, tears, hope, anguish, anger and despair for 43 days in 2011… I was with them for a lot of that time and felt their pain. I still do…
So I will keep coming to this blog, not out of curiosity, but because I care about little Stella and all of you. I send you all, heaps of love and hugs and blessings. And know that I will be here, always.
Bridgett :
May 30, 2012 at 08:40 AM
I have followed your blog from day one. I pray everyday for stella to be pain free and for some peace for both of you. As a mother of 4, my heart breaks for you. Yes, your blog is sad and painful to read but I am thankful for this blog. My children hear about stella all the time. We read your blog together and they often will ask me about her when some time laps in between your post. Your blog has brought my family closer together. You have reminded us of how blessed we are to have 4 children that are healthy. You have taught us how to appreciate the little things in life. You have taught us how to love each other through everything. So to you both, Thank you more than you know for sharing your lives with us. Thank you for sharing Stella with us.
Go to Comment Page 1 2 3 4 5 6 7