Tuesday, August 10, 2010

Open, honest...and vulnerable

I know, I know....two days in a row..what is up with that... some may think my kids have gone on vacation...but no, it's called good tv for them and lots to think about and say for me.
A month ago or so someone found me on facebook... a woman named Carrie. She had lost both of her boys to TTTS. I am always surprised at those who connect with me, especially those who lost both their babies...I am not so sure I could have connected with anyone who had both their babes saved so close to when the babies passed away.
Anyway, she, like me, is very open about her grief, about how she's coping, what she's doing and how hard and sad it all is. Today she blogged about tearing down the twin nursery. It broke my heart to see all the pics of all the twin clothes, toys, even shoes she had. It made me sad for her and sad for me...sad that I never had to do this...the few things we bought were dealt without when I was in hospital. I never took any pics of any of them.
But more than this her openness and honesty reminds me of how some people have always talked about the strength that people like Carrie and myself display. I am not sure it's strength so much as it is just how we cope...how we heal.
I found this quote on another blog...

"...there is not aristocracy of grief. Grief is a great leveler. There is no highroad out.
Courage is a first step, but simply to bear the blow bravely is not enough. Stoicism is courageous, but it is only a halfway house on the long road. It is a shield, permissible for a short time only. In the end, one has to discard shields and remain open and vulnerable. Otherwise, scar tissue will seal off the wound and no growth will follow. To grow, to be reborn, one must remain vulnerable-- open to love but also hideously open to the possibility of more suffering."

-Hour of Gold, Hour of Lead, 1932, Anne Morrow Lindberg

and I just loved how very true it is of all that I have done, all that I have become... all the I need yet to do.
I am open and honest...and very vulnerable. I've been chastised by a few people for that and I take it to heart, decide to change...be more quiet about Cole...maybe people will accept me more, like me better, visit or call more often (okay so maybe I have some other issues to work through here LOL!!!), I tell myself, because others have planted seeds, that I need to focus on my living children mostly, not be online so much, not be so TTTS focused, so angel baby focused.... but then a few days or a week will go by and I'll revert to my old ways...and then I read this.
I realize that this is me, I'm not going to change, nor should I. If I do, before I'm ready, then I know that my wound will never heal and I will not grow. Yes I am opening myself up to more hurt, to remembering and reliving...each and every time I share our story. Yes it can consume a lot of my time. Yes sometimes it does make me suffer, make me cry, make me ache all over for my son.
But mostly, it makes me feel proud of who I am, who I have become, who my children are...all 4 of them. It makes me feel like I have grown and it makes me feel I have a purpose from the tragedy.
It might not be what I chose for myself and I'm sure it's not what others would chose for me. But I am not here to judge anyone nor should anyone be here to judge me.
I have discarded the shield that others judgements have become, I will not let it set me back again. I have also thrown away the shield that remaining quiet about bad days, sad moments and wishful thinking is. It may not always be productive but it is part of this process.
I am leaving myself open to love, to live, to hope, to dream and to remember... won't you too?
P.S. In case you are a regular reader and are wondering...yes I did change the name of my blog...journey of hope, journey of healing seemed...well just not what I want to write about or focus on so much now.... but it is still a journey...

Monday, August 9, 2010

“Patience is the companion of wisdom.” - St. Augustine
“All human wisdom is summed up in two words - wait and hope” - Alexandre Dumas Pere
“Faith is not simply a patience that passively suffers until the storm is past. Rather, it is a spirit that bears things - with resignations, yes, but above all, with blazing, serene hope.” Corazon Aquino

I found these quotes when I was looking for something insightful to put on here on a topic that I am striving, for so many reasons, to embrace. Have you ever given any thought to how hard it is to be patient?
My struggle with patience covers a great many areas of my life right now. The greatest is with my living children....and I am quite certain I am not alone in my need for this in my life...any mom, especially those home with their kids all summer, must struggle with this from time to time (or all the time!!!). And if the above quotes are close to the truth...well then I think I might be struggling with wisdom lately too.
It is so very hard sometimes to just sit and wait...to not interfere, to not question, to not take over. I am sure, in my case, it comes from wanting to be in control and not being able to be at times. Now that's not to say that I let my kids be the ones in control.... though my husband might argue that with me. I try to give the kids credit, try to allow them their time to do what needs to be done. But it is so very hard to sit back and watch it all unfold...sometimes literally and not jump in and push things along, make things happen the way I want them done or nag them along to do it at my pace.
And I guess life in general can be a lot like that. Sitting back and letting things happen as the may, not jumping in to interfere with the natural order of things, not trying to control it all....well man that is hard.
I remember sitting with my social worker at St. Joe's and having this very conversation. I hated the lack of control I had over my life. I hated the unknown and I hated the fear. And maybe that is the worst part of not having patience...the fear. Worry breeds fear...or maybe fear breeds worry. Either way it's a heck of a life to live...being fearful and worrying about the things you have no control over.
I've thought a lot lately about those early TTTS days...heck the early twin days too. I have recently been contacted by a mom who lost her donor without even knowing she had TTTS and she has asked about our story. Retelling it is good...it keeps it alive in my mind which keeps Cole alive too. But it also reminds me of that fear, that worry, that lack of patience.
But if St. Augustine and Alexandre Dumas Pere are correct, then patience goes hand in hand with hope and hope, to me, goes hand in hand with faith. To have hope is to feel that what is wanted can be had or that events will turn out for the best...that it will work out for the best. And to have hope is to have faith.
Faith is one of those hard things... some believe that to be faithful you can't question. But to never question is, well not human I don't think. No matter how many questions are asked...and no matter how many just don't seem to have answers, if you have faith that God is all loving, all forgiving, all giving and all encompassing then you will find peace and...patience.
What a circle it can be....not an easy path but so much easier than having no faith no hope, no patience. No one said it would be easy to parent....to sit and wait for the listening to begin, the jobs to get done and fighting to stop. No one said it would be easy to live a Christian life...to question your choices, God's plan and the trials of life. No one and I mean NO ONE ever said it would be easy to lose a loved one, especially a child... I hope no one is that cruel. But many have said, and I believe many are right...trust in God, have faith, have hope and you will find that it is so much easier then to have the patience to wait for God's plan to unfold and reveal itself to you.