Sunday Something to think about

"How wonderful it is that nobody need wait a single moment before starting to improve the world."

~ Anne Frank

You are my I love you

This book brought tears to my eyes. It was a gift to Ellie and Dave and me from a friend. It's very poetic. Ellie wants us to read it to her every night a few times of course. Because, and this is the 4 year old creed I have decided, if something is good once, won't it be even better 50 to a hundred times more? So share it with your four year old with caution.

You are my I love you
by Maryann K. Cusimano
Philomel Books, 2001

I am your parent;
you are my child.
I am your quiet place;
you are my wild.

I am your calm face;
you are my giggle.
I am your wait;
you are my wiggle.

I am your carriage ride;
you are my king.
I am your push;
you are my swing.

I am your audience;
you are my clown.
I am your London Bridge;
you are my falling down.

I am your carrot sticks;
you are my licorice.
I am your dandelion;
you are my first wish.

I am your water wings;
you are my deep.
I am your open arms;
you are my running leap.

I am your way home;
you are my new path.
I am your dry towel;
you are my wet bath.

I am your dinner;
you are my chocolate cake.
I am your bedtime;
you are my wide awake. (ain't that the truth)

I am your finish line;
you are my race.
I am your praying hands;
you are my saying grace.

I am your favorite book;
you are my new lines.
I am your night-light;
you are my starshine.

I am your lullaby;
you are my peekaboo.
I am your goodnight kiss;
you are my I love you.


Is that not the sweetest thing? Just had to share this. It's one of those things you only get to encounter when you have a little kid.

Faith in the changing nature of life

"Life is no straight and easy corridor along which we travel free and unhampered,
but a maze of passages,
through which we must seek our way,
lost and confused,
now and again checked in a blind alley.

But always, if we have faith,
a door will open for us,
not perhaps one that we ourselves would ever have thought of,
but one that will ultimately prove good for us."

A. J. Cronin

Is a disabled life worth living?

There is a discussion going on in several preemie centric blogs about whether the preemies should be resuscitated or not. The question has been raised regarding whether or not there should be limits (legal limits) or a cut off in other words. Should it be routine medical protocol to NOT resuscitate babies born below 21, 22, or 23 weeks? In all of these discussions ultimately the question of outcomes comes up. There is an argument that if parents were more informed of the high probability their preemie was going to sustain major injury and become permanently disabled that they would make the decision not to resuscitate. Over at Neonatal doc here there is the most balanced discussion I have heard between the different camps.

As a parent of a disabled, former 27 weeker preemie I can tell you that no matter how informed I could have been I still would have fought for Ellie’s life. One mother in the comments on this post captured my thoughts on this perfectly. She said that she thought parents fought for their preemie child’s life not because they were thinking they wouldn’t be disabled but because they were fighting for their child period.

An ER doc brought up the point as well that I have not thought about previously that in attempts to let preemies die (she actually said kill them) the preemies don’t always die and are further injured. That was a startling revelation.

Injured – that is another important point to bring up in this discussion. Preemies are people who are injured at birth. As people who are injured they are treated and current laws protect and entitle them to this treatment.

I also support parent’s choice.

In my experience with Ellie, she was so severely injured at birth that even with the vent and all that her amazing Los Angeles NICU had to offer the docs were still not sure she would make it through her first night, day, week, etc.

Now, four plus years later, we are parenting that same child who has multiple disabilities. If you ask me what her quality of life is I would say good. Yes she is in pain sometimes. But she is so loved. She is curious about the world. She has tons and tons of moments of each day where she is obviously (as observed by her smiles, laughs, giggles, and nuzzles) happy and having fun. I think if you could ask her, and as yet we can’t, she might look at you in confusion. She knows no other life. Ellie, I would hazard to guess, is sleeves rolled up, deep into the business of living life.

Do I think the disabled life is worth living?

I think that life is a sacred gift (and I DO NOT mean that in a Pro-life way as I am absolutely Pro Choice). I mean it in a true biological and spiritual sense. If we are only biological creatures, here by a string of random causes, then life is a sacred and fleeting thing that ends when we end. Ashes to ashes, dust to dust. If we are a soul who inhabits this body and will go on to other life times and other bodies life is sacred. It is a gift from god to unfold and learn to be more loving and compassionate.

When I first read Kay’s header on Gimp Parade I was astounded. It opened up my mind. I have worried quite extensively about Ellie’s quality of life and the wisdom of having fought so hard for each of the 133 days we were in the NICU and every day thereafter for her to survive. I worry about what will happen to her when I die. Then I read Kay’s header and started reading her blog and the blogs of other disabled folks and across the board I found a zest for life.

Here is the quote from Susan Wendell Kay has in her header on her blog you can find here:

The Gimp Parade
Not only do physically disabled people have experiences which are not available to the able-bodied, they are in a better position to transcend cultural mythologies about the body, because they cannot do things the able-bodied feel they must do in order to be happy, 'normal,' and sane....If disabled people were truly heard, an explosion of knowledge of the human body and psyche would take place. -- Susan Wendell, author of The Rejected Body: Feminist Philosophical Reflections on Disability

Would I have made different decision to save Ellie’s life in the NICU had I known she would sustain multiple disabilities? No. I asked Dave the same question and he gave me the same answer.

To do it over I would fight for her again just as hard. She has endured a great deal of suffering but who am I to say that it has not been worth it to her? If the soul theory it true, which is what I believe, then there is something very valuable that she has to learn from reincarnating into her situation this lifetime. The value to my own growth and development has been very clear to me since we left the NICU. Ellie and I were also very bonded before she was born. I even had a very clear premonition that she was going to have some sort of disability when we were one month pregnant. We were already knew each other when she was born. How could I not fight for her? I am so thankful she is here, even on the days when my back is killing me and I am exhausted. My life is more filled with love and I have become a better person from going through this experience.

That is our specific situation and my specific relationship with Ellie. As is obvious, there are as many differences in family situations as there are families.

I think that having a cut off is ethically a slippery slope. I can see both sides. I know that 21-weeker is facing many future and current medical hurdles. I also know that I would have been horrified if some doctor had said to me, “Well the cut off is 28 weeks and your baby is 2 days shy of that so by law we have to let her die.”

I think there is major UNDER reporting of the true outcomes of prematurity. Had I known the real statistics when Ellie was born it would only have better prepared me for our life together versus each disability being a new issue.

I think the inner growth and expanded capacity for joy that parents get from the experience of having things go differently than planned is missing from a lot of these discussions.

Do all parents feel the way I do about having a child with disability? I don’t think so. In our NICU we were in the minority of parents who were there every day. Some came intermittently others not at all. Would knowing the statistical outcomes of prematurity lead some parents to make different choices? It might.

Having accurate information out there regarding the risks and outcomes of prematurity is important to properly educate society. There were so many people who just wrote us off because they know a preemie down the street who is just fine. The miracle baby myth only dampens the willingness of society to support parents and caregivers of the disabled.

Parents of preemies need a lot of support. I would have loved it if, just once, when we had first moved to Boston, instead of frowns and stares from the crusty New Englanders at my baby, any one of them would have said, “Oh a feeding pump. She must have been born early. What a dear she is. How are you doing?” But all they could see is the pump and Ellie's misshapen head. We were frowned at and given dirty at the play ground because we were messing up people’s days with our presence and our 24/7 feeding pump.

This lack of support in terms of services and access to society is a BIG issue for the disabled and those who care for them. It is getting some play on the perifery of these discussions of resuscitations and in cases like Ashley Treatment and the 21-weeker recently sent home. I am glad the issue of cut offs has been raised in that sense. I do think it is a little off the mark in terms of what we really need to be talking about. There needs to be better representation of what it means to have a baby prematurely and the sequelae. The question needs to be answered regarding how can we help disabled children and adults become true members of society by providing access and promoting understanding of disability so that it is not looked on with fear as many disabled people are as mentioned in Jacqui’s latest post here.

I truly believe that a society without differences, without disability, is unrealistic. The real issue is society’s unwillingness to commit to embracing all of it’s members with respect, dignity and the intrinsic understanding that everyone has something to contribute, teach, give and learn to the betterment of humanity.

The abuse that many disabled people suffer is a perverse and primitive response to fear and ignorance fueled by this lack of understanding, inclusion and tolerance (as witnessed by the lack of access) of differences in our society.

Finding Hope

Hope is a thing that we must tap into however and whenever we can. Be it through a muse who inspire us, a loved one who encourages us, a stranger who enlightens us, or we simply find evidence contrary to our greatest dissappointment.

To this end I offer you this brilliance from Marianne Williamson (though in cybermythology this is often credited to Nelson Mandela):

"Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness, that most frightens us. We ask ourselves, who am I to be brilliant, gorgeous, talented, and fabulous?

Actually, who are you not to be? You are a child of God. Your playing small doesn't serve the world. There's nothing enlightened about shrinking so that other people won't feel insecure around you. We are all meant to shine, as children do. We are born to make manifest the glory of God that is within us. It's not just in some of us, it's in everyone.

And as we let our own light shine, we unconsciously give other people permission to do the same. As we are liberated from our own fear, our presence automatically liberates others."

From Marianne Williamson, Return to Love (1992, hardcover p. 165, paperback pp. 190-191): http://www.marianne.com/index.php