Living lifelong human care, development, education, learning and service for all.
Disability Inclusion and Inclusive Education
I struggled for about 8.5 years about disability inclusion and inclusive education. I think so much of it was really about encountering my inherited cultural and personal expectations, and then unpacking these one at a time, on a platform that has to be built on the go.
It is the most terrifying place to be, if we are unsure and expect certainties, and the most exhilarating and liberating, if we recognise the freedom which we have suddenly been bestowed with and increasingly, have always been endowed with.
Freedom is terrifying, because suddenly, the boundaries are gone.
You wonder what to do. Nobody can tell you what to do. All your old paradigms no longer hold. Society around you, your family around you, don’t know why you are unhappy. Why you are dissatisfied. They don’t understand what you see. They can’t see what you see. And you feel so frustrated. And suddenly it hits you, you are isolated.
In a free space, you feel the total isolation of the lack of a common ground, with another. This is historically characterised as disengagement.
And you suddenly start to second guess yourself. Oh, have I been too bold in my visioning? Have I been too naive? Have I been too presumptous? Am I out of my mind?
What is it that I have become so piqued by – what is the silent rage that storms whenever I am least aware? That I spend day and night thinking about it. Thinking about the analysis, the solutioning, the navigating, the making it possible. And the iterations. And the failures. And the getting up. And the failures. And the failures. And the failures. How many failures can one tolerate in a lifetime?
All my family and friends watch me. Watch over me. I had no idea so many people cared. I do, yet it didn’t sink in, exactly how much they cared.
And exactly how much they are also agonising with me. Yes, the agony and frustration of – yes, I agree – there is still so much work to do in this world, towards a truly fully inclusive society and a truly enabled and empowered inclusive and joyful living.
I had kept trying to frame it. Is it like this? Is it a programme? Is it a service? Is it a curriculum? Is it modelling? Is it a school? Is it a home? Is it about workplace? Is it about a dedicated village? Is it architecture? Is it design? Is it a code? Is it in our DNA? Is it art? Is it free space? Is it silence? Is it contemplation? Is it full participation? What is it?
I kept asking what.
I kept missing it.
I kept feeling frustrated.
Until yesterday, it suddenly dawned on me. Something suddenly dawned on me.
WHO is at the centre?
I asked this question aloud, because I was listening to Henri Nouwen, about vulnerability being at the centre of a true community.
Who is at the centre of the community that I am trying to build?
So I went, yes:
It turns out, as I examined this deeper and truth starts to hit home, and this is frighteningly vulnerable:
I am the one in need.
And everyone who is in relationship with me. My husband, our marriage, our family, our extended family. We are in need.
Because I have not been able to be fully present to my loved ones, to their hearts. To a full participation- the disappointments, the growth and the celebration of our lives.
And those who have stood by me, by us, on this search, is my community, who have, despite all my wanderings and searching and questioning, and non-fruition of anything tangible, have not stopped believing in me. They did not think less of me, when I did of myself. They did not mock me, when I did of myself. They did not put me down, when I did of myself. Yet they also could not build me up, when I couldn’t.
A friend and work mentor from nearly 16 years even turned up in my life and asked me pointedly – who is it that is saying no to you?
I was battling my own inner fears and insecurities. I was afraid – I needed certitudes. I needed a model answer to apply. But dear, dear, dear – life isn’t a model answer.
My husband chuckled lovingly and teasingly one evening – are you still looking for an answer?
I looked up from my ruminations and I went – yah. QED.
Full Inclusion – By Way of Questioning
So after countless of writings, thinking, prototyping, testing, discussions, dialogues, debates with everyone I encountered on this search for full inclusion, I suddenly figured it out.
It was the questioning. I have been living full inclusion – by questioning.
I never stopped asking. And that was my good work. I never stopped asking these questions:
Because how you interpret any of the above, is how you truly are living. It doesn’t matter what you do. If you interpret it one way, you either live it that way or you live it the other way, or you don’t live it (meaning you live in indecision).
Resolutions of conflicts and contradictions, within and in larger society, takes time. A lot of time. Because it involves unravelling a lot of pain and confusion. It requires the faithfulness of commitment and integrity, to allow a new way to emerge. To allow a new voice, a new language, new grammar, new vocabulary. A new way of dialoguing.
A New Meeting. A Meeting of Vulnerable Hearts
For me, it is in the heart that I have met so many beautiful people. The heart is that place of longing for goodness, for love, for kindness, for truthful living, for an honest dialogue of fruitfulness. For more equitable and safer places of not just belonging, but being, living, participating in a real society that allows meaningful interactions, engagement, caring, supporting, growing. A society that supports and builds, and one that waits. With a bit more patience, and a lot more loving, understanding and encouragement.
Thomas Merton alludes to such a place as “the school of life”. He also calls it “the school of humility.” Poverty is also often another word associated in this context.
So each of us is at the centre and all of us are mutually holding each other’s heart, as we journey through life. As we each encounter ourselves and others, sometimes tentatively, sometimes confidently. Mostly, until we trust, we are a little scared.
Life has its ups and its downs. Both define life. If we are unable to confront the ambiguities of either, we are not really able to be in full engagement, to be in community, yet. And that is fully valid. That I have come to know as the “free space” (after Henri Nouwen). The space of hospitality. The space of pause, silence, solitude, inner transformation. What we are growing in such circumstances, is a tenacity for holding ourself together, and ourselves together, which I now understand as the meaning of peace-making.
Full inclusion involves the opening up of this “free space” – of non-labelling, of non-rejection, non-fight, non-panic, non-knowing. Of faith, of trust, of complete acceptance.
Of vulnerability. (Of death of absolutes or the edge of all-or-nothing thinking.)
Dialogues of Silent Waiting in Harmony
Because full inclusion involves us not being right all the time, standing up for when we know we are right, speaking countless dialogues, holding limitless welcomes, because full inclusion means – for all, for all time. And it necessitates a space of waiting, of tolerance, of non- conversion but authentic changes of minds. It is the highest faith and the highest self-control, because, in the midst of true conflicts where sides are stretched to the individual limits, the engagement sustains through one way only – mutual withholding, mutual outreach, together we exercise non-violence. We practise Love. Maybe it is external, but I believe, such a space grows a person beyond his or her own original limits, so altruism is birthed only when you care enough about the other and the whole and the future. When one truly matures beyond one’s own worldview and when one truly cares that the future cannot be the same past patterns of conflict, prejudice, and dominance. Full inclusion is birthed only when the internal values change, and it has to meet another’s heart and mind and actions, fully. And uniquely, in unique expressions. Because language cannot be made identical or the same; language is individually unique – life, if it is to cohere, to hold, and approximates language expressed, is only sung in harmony. Even if it is to be discordant, there is still a connection, a space for the discordance to be part of the greater harmony. The song of life. Every time different, every time new, every time with an ancient rootedness. Every voice unique, every choir different, every moment surprising – the same song sung over and over unceasingly. The song of living hope in motion.
Or perhaps, it is heard, only in silence, and in stillness.
The silence and stillness of non-words, non-language, non-dualistic cognition. The silence and stillness of pause, of kireji (in haiku). The moment of inner reflection.
This I have come to know as contemplation, and today, I understand this to have the same meaning as prayer.
Truthful Reflections: The Bridge of Sighs
Perhaps the journey of full inclusion is not a journey to full inclusion, but a journey of being in hopeful full inclusion. It is a journey of reflection. Where the water of stillness mirrors, not others, but our self. Our own distances, our own prejudices, our own hatred, our own frustrations, our own anger. Our own wanting to control. Our own insecurities. Our own inner pain, of our helplessness and our own loneliness.
Perhaps that is my answer to Down syndrome.
The third chromosome is the bridge. The bridge of sighs, where we can pause, to take a breath. The one true breath of life.
Which is the only breath that we can take for our self and our selves:
Take a living breath. After you hit a wall and it collapses, take a breath, take several, take as many breaths as you need, reflect. Be still AND carry on walking.
As courageously as we can. Every moment.
And I recall Monet’s bridge. The painting of a beautiful garden.
There is a lotus pond. And there are many lotuses in bloom. When we are at the apex of the bridge, we necessarily take a pause and breathe in the beautiful view, and when we are ready, when we’ve taken enough breaths, and when we’ve shed all the tears we need to shed, there will come a moment, a point, when we will say – yes, I can. Yes, I can. Yes. I Can.
And we will be ready to continue on, always remembering that once we have seen the whole garden, we will know that life is a crossing. A crossing of many inner and outer thresholds, and if we give ourselves time, time, time, time, time, kindness will surface, and we will know this deep, deep kindness and gentleness. And then joy will bloom again, and we are healed. Our broken heart is no longer broken, and we don’t even know how that happened.
So on the bridge of encountering Down syndrome, I discovered and experienced this deep inner experience, what I articulate, the meaning of:
The simple grace that is right before our eyes every moment that is present to us, without any “rhyme or reason”, without need for poetry or for science, without explanation, without need for articulation:
a gift. a simple gift. an unexpected present. an inexplicable mystery.
The saving grace is in seeing myself in the mirror of silence, and myself in others – both the sadness and the sorrow, the joys and the triumphs, but mostly, the vulnerability – the humility of simply being human.
And daring to look hard at it long enough until it speaks my own truth and until I can see the deep beauty of my own heart and everyone else’s, and how we are all the same inside, beyond the externals. Beyond right and wrong, beyond words.
And it is in the truth of that deep uncertainty of quiet that connects us. The truth that we don’t always know. That we don’t have always have an immediate answer. That in the ultimate, we may not know for sure. And it is in that admission of that difficult yet profound and simple honesty inside us – that we can’t know for sure. That knowledge isn’t concrete. It is fluid. That knowledge isn’t the answer. Something else, that we can’t put a word to it. Yet we continue – and it is that space, the actions, the commitment, the choices, the discernment, the self-control, the silence – that holds the I don’t know – that truly defines and undefines us. That gut feeling that gets us up everyday. That gut feeling that says – I won’t give up. That gut feeling that keeps asking – what makes sustainable peace, what are the conditions that will flower full inclusion, what will take this inner pain in my heart away? Endless, ceaseless, questioning. And suddenly, there is a turning point. Something looks back at us.
me. I see me.
I see my self. I see my humanity. I see my humility. I see my courage. And I see my self reflecting back at me. And I see my self looking at my self. And I see my original self, without the reflections.
And suddenly, something happens.
I feel myself. I feel my inner pain. And I don’t flinch. And I don’t judge and I don’t condemn and I don’t comment. And I don’t panic. And I don’t do anything.
I just keep breathing. I keep breathing to allow the pain a place, a true place in my heart. The place that it has been denied. Instead of the place that I had designated the pain as a no-go area – of shame.
I keep breathing and breathing.
Then my body relaxes. My beingness, my trying to define, relaxes.
I just keep breathing and breathing. One breath at a time. It feels excruciating at times. But I allow it to process. In silence. I allow my pain to be known, to be felt.
I feel all the sore muscles, the tension in my body. I feel the pain being rejected, I feel the pain being accepted. It’s excruciating. I allow it to be felt. I felt the pain asserting itself in triumph, I allow it. I feel the sorrows of the pain. I feel the pain of the pain. Ouch. I don’t give it any names, explanation, no labels, no reasoning. I just let it have a go at me. For denying it for so long. And then the pain exhausts itself. It runs out of steam, and it acquiesces. It has been heard. And that was all it is to do. It has done its job. It has finally succeeded to communicate with me. To get my attention. To let me know that I am in pain and to take my own self and life seriously enough to really address my own needs. And my life direction. To wake me up from slumbering through this beautiful life, as if I am at war, or in a swampland of endless nothing of non-reality. To wake me up from my inner sleep. From living life from my mind’s eye and mental projections and countless interpretations.
It goes on in iterations, until, finally, I hear it. I see it. I get it. Such is the resistance of fear of change. The barrier of fight. The barrier of survival. The barrier that had formed my sense of self to date was a barrier of survival. An instinctive defense mechanism. The barrier of earlier formations. How do we let down our guard now? And trust life? And trust that feeling pain will actually heal our wounds and grow us? How can that be? It is so counter-intuitive.
As time went on, I began to feel every part of me accepting, and being accepted, being embraced, embracing, being allowed and allowing, to be. To just be. To exist, as is. No more definitions. No more demarcations of good and bad persons. Certainly no more pronouncements of success and failure. No more idealisations of bad and good. Of this way or that way. Of finality. The wrestling goes on until this drive to reconcile is depleted. Completely flat out. My inner challenge within suddenly no longer has a need. I am no longer even able to fight life. I have nothing of my old formation left in me to even muster up a challenge, much less fight. Nor do I even have a need any more for this constant tussle. I don’t try to dress up my pain anymore. With theories, with knowledge, with excuses, with dogmas, with frames or scaffolds, with charades, with inner theatre.
I suddenly went, I am at the edge of my self. The end of the road. Let me see another way. OK, show it to me. If I don’t take this road, I am in complete agony anyway. I can’t get out of this by my self. Help me. I have no deities. I have no archetypal deities. I can’t pray. I don’t know the rituals. They don’t make sense to me. But all I did was admit this to my self. I don’t know how to do this.
It was me meeting my humility. My shame met humility. The key out.
There is no shame
In not knowing something or how to do something or not having an answer or not being able to prevent suffering or not being able to save a life or not being able to right all the injustices in the world or not being able to help someone feel better or not being able to make everything whole again or not being able to explain what life is about to a child or not knowing who God is or not knowing whether the sun will rise tomorrow or not having enough faith or not even getting the grammar right or not even being able to read or write or being able to make a living. And certainly there is no shame when we can’t make something better. That we can’t fix the world. That we can’t fix ourselves. Or that we are broken. Or that the world is broken. Or when we can’t even get out of bed or when we can’t even love more. Of simply feeling like crap.
There is no shame. Shame does not exist.
Shame only exists in our mind’s eye of the limited defines of conventional cultures of what constitutes honour and a subsequent place of glorification in society. It is a feeling of inadequacy. A place perhaps of restitution, a means of peace-making. But peace is not and cannot be brokered. Peace can only be offered from a deep place of for(-the sake of all of us for all time-)giving. So places of restitutions are not to be an entombing, not a death place. It is not even a death passage. It is just a momentary place of repose. Of deep seeing, understanding and gifting:
humility. The poverty of heart.
Of formation: the secret key through the relinquishing of the old divisive and controlling strongholds of perspectives.
Humility is the birthplace of grace. Without humility, how can one receive help that is not related to our inner and outer boundaries of formations of sense of worth and worthiness and honour?
The very code that holds societies together is the very code that divides. How very peculiar.
Without this paradox, there is no living. There is only coding and machination of what we think is living.
Life has a certain flair and audacity to it that completely defies all means and needs for power, control, dominance and crystallising of knowledge into paradigms or dogmas. When we depart from this deeper design that encapsulates true freedom – natural, good, noble and healthy for all of us, is when pain surfaces, and reminds us, and points us, towards our truer and more humble and non-possesable humanity: a simple loving kindness, generosity of heart and daring openness which requires the highest trust to love everybody, without recrimination.
That’s when I started healing. Suddenly, the pain is released. It works through one final scream, the final cry of agony and yet of triumph. The vocalised cry of pain. I am no longer afraid of that primordial argh. I am no longer afraid of the silent cries of deep, deep, deep, deep destitution of – denial of my fears and insecurities. I am no longer afraid of hearing my cries of self being released from my own entombment of my valiant self (who did not give in to the fear of conformity).
I am free through my fearless and endless questioning. I had dared to ask the uncomfortable questions and was not afraid to counter the easy and convenient answers and glaring or condescending eyes of those who think they are in their own safe havens nor the concerned, embarrassed eyes of those who are seeking to please those who think they are in a good, safe shelter.
The storm of life isn’t and cannot be contained in safe houses. It is right in the heart. If you don’t look at it, it only rages until you wonder why it is that you are so torn, so tired, so trapped, so worn, so helpless, so bitter, so angry, so disconnected, so frustrated, so unworthy, so addicted, so unstable, so empty, so dead inside. It is a container of your entire life experiences. And it can’t be contained. It is meant to be free. Not as a storm, but as a voice of freedom, as a gust of fresh air, for when the world is too dusty and too sorry, and don’t yet know how to breathe in the full fluxes of life. For when the world is too scared, too frightened, too unprepared, to breathe in the entirety of sadness and accompany sadness until it converts the inner storm into beautiful vestiges of peacemaking and lasting joy is released in silence as the true fragrance of full inclusion or recovered wholeness of life in one breath.
That’s my inner order.
Am I good enough? Do you love me? Could you love me if I am exactly who I am? If I am not this or that or doing this or that or being this or that or having this or that? Can you love me if especially when I am nothing? When I have fallen? When I have made a mistake? When I have been dishonourable? When I have been cruel? When I have been aggressive? When I have been hurtful? If I am poor and destitute? If I am so depleted, and non-functional, that all I can do, all that is left of me is a bucket of tears ready to just pour out my entire heart of pain? If I am just walking pain? Would you take me in if even in just meeting me you have to care for me and I stir up this pain in you? Do you have enough love to carry me and bear my pain, for a little while, or even for endless time?
I recall Michaelangelo’s La Pieta.
That to me today, is the wholeness of care. Caring love. That in my dying, in my entire brokenness, you can bear the pain, the grace of healing, the grace of mercy, the grace of wholeness, to uphold the entire dignity of my life.
We can’t be a part of reality until we can embrace reality in all its multitudes of experiences – both joyful AND sorrowful. It’s one movement, one and the same. The wholeness cannot be dissected. And when joy is converted to sorrow and sorrow is converted to joy, the beauty of completeness remains. A wholeness sustains. It sustains itself anyway. It was not created, it was and is always there. It is all about the seeing. Perspective.
And so I heal. My health returned. My energy started to flow with ease and my stamina and strength increasingly restored itself.
I could release my own inner false imprisonment of my inner pain.
It wasn’t the pain that I had to release. It was the inner prison or trappings of my own mind.
With that release, through loving allowing of the voice of pain to be spoken and heard, the voice of indignation, the voice of the pain denied, of unprocessed emotional pain (which became unprocessed physical pain when suppressed and which no one acknowledged or knew how to treat), I took the first steps out of that gate of unworthiness, of unbelonging, of fear and control of the unknown, and chose to share my vulnerable heart. I was no longer afraid to show my own broken heart. To show its open wounds. Not to parade its gore, but to unbandage its unaddressed wounds.
And to realise that this deep inner poverty is what makes us human. That the bleeding heart is the true heart of humanity. And everyone carries it too. And everyone continues to live the wounds, and heal, or not, with the grace and the dignity that they can to their own limits, however we perceive the externals. And it is not the externals which define grace and dignity.
But the fact that we all bear a part of this grace. Not disgrace, but grace, as well as we can bear it.
And I started to understand. And I grew. And once I understood this, I was no longer angry. I was no longer alone. I was no longer alone in bearing this poverty of heart.
And I started to truly heal.
And I become whole again.
I began to reclaim back my whole life (prior to even before the arrival of trisomy 21) and my entire future became restored, in this one moment of grasping shared always-existing-incontaminable grace.
In 8.5 years, I grew the courage to look at my own pain, my own anger and my own shame, and suddenly, in one moment of gazing, I saw my own beauty. I no longer look at my own tears and vulnerability with disdain, but I look at it and I could see the moments where my anger had turned into such bitterness and so much rejection, that I understood the seed of rejection, and then I understood Down syndrome. It was not my son that society had rejected. It was the vulnerability that his presence triggers in others, that they could not handle, that they had to shut it out. Shut it out of their hearts and shut him and his friends out of their lives. Society couldn’t handle the pain, the tenderness that arises, when truth arrives at the doorstep of our hearts.
When I understood this, I finally let it rest. I finally let it rest. My anger started to leave me, my pain was released. Believe it or not, all I wanted to know was not – Why Down Syndrome, but why did Down Syndrome become this big wedge, this big barrier, to simply love a child, and welcome him or her FULLY and WHOLLY to the world. With open arms. With love and welcome and celebration.
So now I can. I can embrace that pain in others. I can hold the tears.
And in that embrace, I am able to embrace myself. I can hold my tears.
I can let my tears fall freely, without shame. The tears are our celebration of lives in conversion – from stranger to a friend, from a friend to a sister or brother, from love to love!
I can now weep openly and in full freedom of this wondrous gifting of liberating tears.
And that is how I crossed that bridge of sighs.
With a full face of tears streaming down my face uncontrollably and no longer needing to wipe it dry. I no longer need to define courage as smiling prettily and assuredly at the world and professing that I had crossed this bridge by doing this or that or because I had overcome this or that. The truth is I cried throughout this whole journey of growth. I cried through it all. I bawled like a baby. I cried so much I wondered why and how can anyone cry this much, without any reason, without any respite. I came to the edge of myself trying to cross this bridge of sighs. And I am no longer afraid of the crying of these wondrous glittering tears because every single drop was a drop of truth that I would never otherwise have been able to see and treasure and be renewed. And be free to walk my life, without my inner or outer encumberances.
The gift of Down Syndrome is the gift of my true life, my free life. And it is birthed, inexplicably, through tears.
The bridge dissolved.
The islands of doubt are no more.
The gift of Down syndrome for me was to free me from my fear of vulnerability. My fear of the unknown. My fear of not knowing. My fear of non-certainty. The loss of control. And my fear of the cruelty of confusion, fear, rejection and isolation. And the fear of my own inner pain. And the tyranny of my sure self, my inner dogmas. The freedom came with an unexpected gift.
The freedom in vulnerability births courage.
The gift of courage. So that now the gift of sighs has a voice. One that can speak this clearly and without confusion. With full understanding, inner peace, reconciliation, lovingkindness and joy. And without anger. And without defense.
I can mix metaphors without wondering if somewhere in the darkness someone will let out a scream or throw me a rotten egg or hurl me an emotional insult and assault. Whether or not I need to shield up. Or call upon some invisible authority that can placate the crowd.
And this was my inner pain. My pain was bearing, withstanding the deep pain of rejection. The entire sting of historical rejection of trisomy 21 in the human evolution. And the effort within me, grown inside me for 8.5 years, to respond to this inexplicable gift of trisomy 21 had required everything of me, to not respond in more distance, but to respond with patience, kindness, gentleness. To close the gap. The gap I was fighting was my own anger at this senseless rejection. And I tried everything to close it. Bandaged it, analysed it, contained it. But anger has a voice.
But I didn’t want anger to speak. It becomes destructive. So I was holding anger. And it was hurting me. The suppression became a voiceless inner pain. Like being trapped. And when one is trapped, one is shut down. And one flares up like fire with just one dry straw of inconsistency. Anger cannot tolerate inconsistencies. Anger is angry at everything. So my anger consumed my very being, until I was just exhausted.
And when it died down, because there is nothing more to burn, to blame, the work truly began. Who am I blaming?
And so when it became clear to me that it is I – who is most vulnerable, most volatile – I stopped the blaming patterns. Because eventually, I will blame me. I will turn anger around at myself.
And so I stopped it. I found it within myself to see the truth of truths of my pain- my rage. And that was all it took. To stop feeling helpless. To stop being powerless about vulnerability. To learn to just be still. And trust that something else is happening inside me. That I am maturing and that the inner pain is part of the process of growth.
So I was growing love. Me allowing me to grow me.
And I, the tyranny of self-defence, my mind, was finally, ready to allow my broken heart, my brokenness, to heal.
Because, I cannot heal in parts. I can only heal in whole. Because healing necessitates the mutual meeting of all brokennesses and the sealing of all brokennesses, without recrimination. Without division, without analysis, without blame, without favour.
Healing is about second and third and multiple chances. It cannot lock us in a place of static numbness or worse, a dogma of unreality. Healing is not hypnosis. True healing is very deep work of the mind, the heart, actions, daily living, daily responsibility.
It comes back to a whole self that is finally a responsible person. To exercise the self-control of safety, of moderation, of peace-making, of a beatitude, an attitude of a natural, spontaneous responsive truthfulness that does not belittle nor humiliate. But one that lifts and builds, and hold spaces of calm and gentleness and also non-denial. Spaces of deep reflection and resultant, real living. An actioned learning. A real human person. A compassionate, understanding, accepting, kind person of deep, deep humility and empathy. A feeling person and a friend (a me-too person). Not a stilted poster boy or girl. Or a preaching person.
A real human person is fully human. And the divinity is not in the recognition or claims of identified signs of the sage or theology or philosophy or science or poetry or the mysterious divine as claims of authority, but in the truthful and open living, of – it can’t be anything, if you really think about it, but – PURE HONEST VULNERABILITY.
Courage in love
Love is borne through painful growth. Seeing and feeling inner pain grows our compassion, our deep care and understanding, love and respect for ourself and another. It is a continuous deepening of our understanding of life. It matures us.
So that we are not all-or-nothing persons but all-encompassing persons and humanity. And we need voices. We need dialogues. And we need silences.
And we need to be very patient. To be very still. To be very calm, when responding to growth in action. And to be very understanding and comforting. To be nurturing. To be able to give good counsel. And to allow investigations, and to allow free spaces of hearts, minds, actions, convictions. And to have enough courage to bear the uncertainty of the unknown and bear the pain of the struggle of identities and one’s purpose and meaning in life.
This is the very same response that is required of me to respond to my children in their daily struggles.
Because I have grown as a person, I am now more prepared to love my family and the world in a more mature response. From a reservoir of deeper peace and deeper tenacity, and knowing and trusting that all is a meeting of
a grace-filled life.
Walking the Rose
Ultimately, nobody can give you the peace you seek but yourself in union within or reconciled. The release you seek is permission to grieve. Once you’ve had a satisfactory grieving, satisfactory meaning, once you’ve understood it, once you’ve had a good go at it, once you’ve gone the distance, perhaps we’ll all be dancing in the freedom that Down syndrome has come to gift in our hearts and lives.
I now understand that the grieving was for my own lostness, the loss of countless framing of minds, the loss of all my mental formations, my own destitutions, my own poverties, my own emptinesses, my own nothings and my living, is in seeing that the loss was necessary. So that I can finally be calm and have quiet enough to see myself in my simple honesty without any conditions. That in that emptiness, I am still able to love my poorness. That love isn’t about things, the whats, the definitions, the moments of strengths, or permission or authority or law or divinity. That glory isn’t all that. That true glory shines when you shine, when I shine. Exactly as we are. That also there isn’t any need of glory in dignity. That the truest dignity is in us being able to love ourselves as we are always loved, always held: without any conditions. Without any need to prove the worthiness of our existence and to never trivialise any life, just because we don’t understand it. True humility is in meeting everyone with full respect, and without any reactivity about our mutual lostness. Because in that meeting, we are no longer lost. And we see each other. Exactly as is. No more veils. No more blindednesses. No more need for posturing, or elaborate substantiations. And you can show me your dance move and I can show you my dance move, and we can dance, and we can sit and talk, and dialogue a little, about things that make us sad, and things that make us glad. And everything that makes us very glad. And then we shall sigh and smile at our own sillinesses, and let out a deep sigh of relief. And suddenly, it is daybreak and it is time to live bravely. We are ready to live forward. We no longer need to be afraid of our loneliness nor hide our inner sadnesses. Nor do we need easy nor any answers.
We are free.
To live with just the simple basic decency of being human, empty of the crowd and yet filled with the ever arising overflowing joy of freedom in a container that has a sealedness that can never be broken again. Because it knows it can always mend. Because it has internalised the healing of its broken heart. Because it has now become a walking healed heart. A healed heart has different eyes. It cannot see the world as broken. It only knows to see the world as perfect. Because it sees with the eyes of the heart.
May I hold your heart and sing you a soothing song, while you grieve to the fullest of your heart’s content. While your eyes glisten with the dewdrops of morning glory, may I celebrate your courage, your choices, your liberation and your living beauty.
April 9, 2016
(revised April 10, 2016)
(revised April 11, 2016)
(revised April 12, 2016)