Self Portrait

Today, I looked in the mirror and saw the woman reflected back at me.

She was no longer in the bloom of youth, yet neither was she in the fall of her life.

She looked sweet , tired, content, sure of who she was. Yet, there was a sadness in the depths of her eyes. I could see a life well lived, although they numbered only 33.

I could see the joys she experienced in the lines around her eyes. Those eyes looked ready to crinkle at the slightest provocation.

I could see the tragedies in the solemn lines of her expression and the empathy found there. For how can she experience suffering and then not hurt for those who suffer around her?

She had wild curly hair. It seemed to reflect the tumult of emotions she carried around in her breast. Threaded in that hair of ebony, were strands of silver.

I saw her reflect on the dear soul who had left her life, suddenly and painfully. I saw that she had expected to tease him about the silver he was suppose to sprout one day.  How she expected to be an old woman surrounded by loved ones, peaceful in the knowledge that she was to go before him, but life is an unexpected beast at times. This soul was ripped away from her life. From the lives of those she loved, who loved him as she did. They were all left behind, feeling alone and forgotten. Like a child’s toy, once loved, but now sitting at the bottom of a toy chest.

In the mirror, I looked at this woman’s body. It was twisted and broken, strong and erect. Her body bore the marks of caring for her daughter. It showed her love of a soul trapped in a body that doesn’t work. It showed the strength of heart to continue to lift, cradle, and nurture a body well beyond infancy. I also saw the compassion she had, in the stoop of her shoulders. How those shoulders were rounding down to comfort her child against her breast. Never minding that her child was nearly her size. So, even twisted and broken I saw the beauty of love in that body.

I saw the toll of emotional stress on her body. How over the years she had put her needs behind everyone else’s needs. However, I also saw the signs of her pushing herself to the front. I saw her muscles defining themselves with exercise. I saw the leaner lines from the nutritious food she ate to nourish both her mind and body.

I saw in the mirror, a woman well loved. She looked content, a product of the support she received. I see her family and friends reflected in her slight smile, in the peace in her eyes, in the jewelry that marks her body. A ring from her beloved, a nose pin from her mother, a necklace from her heart sister.

Her features reflected her siblings and the love she carries for them. I see her sisters in her eyes. One brother in her forehead, another in her cheeky faces, and the other two in the length of her eyelashes.  Her mother and grandmother were the structure of her face. There is so much strength and love in those features.

Reflected in that face I can see her search for God. It is stamped in the clay on her forehead. I see her connection to God in the earth under her nails. That earth tells me she finds joy in the nurturing of God’s natural form. She admires it like no other part of Him.

I look at this woman in the mirror and she smiles at me, as I smile at her. We both take a sigh and, as one, turn away to continue on this path called life. I know I will see her again and she will be changed and different, but I will know her as she is, always.

Doing Typical Activities with Your Non-Typical Child in Your Community

Something has been ruminating in my mind for some days now, ever since our last family visit to our temple.

The amount of effort and emotional endurance that goes into taking your special little one to a typical function, gathering, activity, is a lot. For example, taking my child, who is wheelchair bound with cerebral palsy, to our local temple is an effort. Not only do I have to make sure I have everything to meet all her needs, preparing her for the overstimulation and having things handy to destress, feed,  and keep her cool, just to name a few. I have to also prepare myself for the ordeal of maneuvering her wheelchair around shoes, people, objects etc. On days where the temple is so full of people I can barely get her in and out, I wonder at my need to include her.

But there is a need. A need and a want to include her in typical activities, I want her to be a part of our community, our community needs to know her and accept her, I feel it’s important for both us and them.

However, it’s almost never a satisfying experience. I won’t be a negative Nelly and say I have never had a successful experience. The truth is, We have wonderful friends and they make sure we are assisted and welcomed wherever we go. No, I’m talking about the greater community.
I would like to preface my explanation with this: we are not a needy parents, we try our hardest to meet our chid’s needs without imposing on someone else. We are strong and resourceful , we only ask our closest friends for help and often they know us enough to know that we won’t ask for help, so they simply anticipate my daughter or our needs. We are blessed and fully appreciate their love and support.

When I say community, I speak more of acquaintances, or perfect strangers who see us from time to time in the temple setting. I would like to share with them my heart.

My daughter is in a wheelchair and might seem to not be paying attention to what’s going on, so maybe you feel she doesn’t need to be in the temple, taking up space, or up front to have a good view, but  she does. You see, she is over-stimulated by the noise and crowd, but she is aware, seeing and hearing everything. She is absorbing as much as you are and when you disregard her by asking me to move her out of your way, so you have a better spot, you are both breaking my heart and telling her she is not equal to you. But she is. She is a spirit soul, just like you, just like me. Her body might be broken, but we are not our bodies. Her mind and her intelligence are there, she is seeing how she is treated and that is molding my daughter’s perception of herself and how she can expect the world to treat her. Just like any other mother, I want to raise my daughter to be strong and confident. I want her to know she is valued, she is lovable and that she can reach for her dreams, despite her limitations.

So this is a request to you , her village so to speak, please allow her to be a part of this temple community.

This doesn’t mean you have to rush to help us, this doesn’t mean you have to give us priority. It simply means, please give us respect, allow her to have space to join in. Please don’t bump into her wheelchair as though she were a piece of furniture. Please don’t stare at her and then look at me with pity, we are proud of our daughter and her accomplishments. Please DON’T leave your shoes in the doorways and hallways where we have to fight to simple get her in the temple. Please DO say hello and smile at her. Please DO remember that she might not know you, and like any child will not smile back. And most of all please DO remember she needs her relationship with God just like you and I, please allow her to see the Deities, allow her to help in service, please don’t disregard her right to be there.

Thank you, Hare Krishna

Comforting Words During Grief

Dealing with grief is something we will all go through at some point in our lives. Yet, it seems like it’s the thing we are the most ill equipped to show comfort for. Our intentions are to give comfort, to show support, compassion and empathy, but more often than not it seems we cause more pain or hurt.

Why is it so hard to say the right thing? Why is it so easy to say something hurtful, even unintentionally?

Since my brother passed away, it feels like hell. Losing him, dealing with life, worrying about your family, trying to understand how and why this would happen. Then on top of all of that, bracing yourself to deal with people.

People who care, people who don’t, people trying to comfort with truisms and quotes, sad eyes and meaningful squeezes. It’s all from a caring place, but you kind of cringe and or get angry.

Those things are expected and a way of avoiding them is to keep to yourself. Stay away until you know you can handle it and see the love behind it.

However, there is something else that happens. Something that tears your guts out. Some people treat this tragedy, this life altering, heart rending loss as gossip. They call and ask awful, intimate questions about the incident and your family. They are callous about it, saying things like, ” yes, I dealt with : insert very low-key experience: , so I understand what you are going through”. It’s like saying  “I once had a cut on my finger, I completely understand what losing your arm was like for you.”

It cheapens the intensity of your feelings, you feel violated and defensive. It feels like they are telling you that they know and have felt what you are going through, when really they couldn’t possibly know and all they accomplish is reminding you that you are alone in your pain.

I recently read a post from a mother who lost her daughter at a young age, in a violent manner. She mentioned one of the most difficult things after her loss was how people felt they needed to comment on how she didn’t do the right things to prevent what happened. When I read that my heart squeezed shut. At a time when this poor women was dealing with the most horrific thing a mother could go through, people were tearing her apart, laying the blame at her feet.

It’s human nature to say and do things that make you feel better about a situation, you rationalize situations so you may feel safe from those random atrocities happening in your life, to your loved ones.

It doesn’t work that way, and in the process you are creating a situation where you are putting guilt where it will already lay. Loved ones left behind will always feel the burden of seeing what “could have, would have, should have,” been done. It’s a curse and unfair. Hindsight is truly 20/20. Why add fat to the fire? Isn’t better to give that person the comfort they are desperate for? Isn’t it better to simple hold someone, cry with them, soothe them by allowing them to express their great loss?

Today I went to visit a woman who has been in my life since nearly birth. She knows my family, knew my brother. She held me tightly as tears poured down my face, she told me memories about him and I when we were young. She shared in my grief and simply felt what my family was going through. She said not a word of “understanding”, she said many words of loss and love.

I hope that should, and when the time come in my life to be there for someone, I will remember to be caring enough to ask what they need, to share in their grief and to give them only love, not “understanding”. Hare Krsna

Grief

Grief bubbles up from deep inside you. It doesn’t have a schedule. It cares not for chores, or duties, or the million things that make up life. 

Grief is the love you can no longer give him, because he has moved on in his next journey. 

Grief causes you to pull over suddenly,on the way to the grocery store, because your eyes are blurred with tears of sadness, longing, and shock. 

Grief is the feeling of helplessness for those most hurting in your life. 

Grief is anger. So much anger. It swells your chest and causes you to lash out, break things. Anything to let it out. Then you sit empty and lost. 

Grief is feeling lost. Lost in the cruelty of this world. The seemingly madness of it all.

Grief is being scared of losing any memory, any thought, any reminder. 

Grief is suddenly realizing that anyone and everyone is temporary. Ah, the cruel side of love. This is what is meant by love in the material world being imperfect. It all leads to pain. 

Grief is willing he knew he was so loved and is so missed. 

Grief is the loss of that soul. He moved on, but we are left behind. 

Grief is seeing a stranger who has a physical feature similar to his. You stop on the sidewalk and watch the stranger walk by, remembering when he smiled and laughed just like that. 

Grief feels unending, and completely enveloping, and at the same time, gone all too soon. How can you feel ok? That feels wrong , too. 

Nothing is right. How can it be, without him? 

Grief is feeling like we can’t go on, yet we do. 

Time is cruel for it takes him away, but time is also our best friend, for only it can heal our hearts, left without him. 

Grief is struggling to find compassion for your loved ones, they are hurting, too. We all show it differently, we all live it differently. Sometimes, it hurts to see other’s methods of coping. We must show compassion, we must forgive and simply continue to love. Help one other continue on our paths. 

Grief is a many headed beast. Something we must live through. Live with. Something we must embrace to let go.

We must turn to Krishna, each other and loved ones, to make it through. 

Grief. 

Service and Choice

I recently heard someone, who was speaking on a panel about relationships and community, talk about his service towards connecting community. He used the words, ” chosen service”. I was immediately struck by that term. First of all, the simple beauty of its eloquence was very attractive for me. What a concise way to bring across a sentiment. Secondly, I admired the dedication behind someone choosing to render a service when it is dear to their heart, committing to something greater than their own self interest. It was inspiring, those two words, simple, direct, yet housing a host of feelings, of passion and surrender.

Right after I had this wave of good feeling towards humanity at large, I immediately felt resentful. It was just a twinge, but it was there. I felt the limits between having a service you choose and a service that chooses you. My life has been shaped by my daughter’s condition, and it is easy to feel like I had no choice in how I serve humanity from this seemingly limited life.

So this was in my head and heart for the next week or so, just sitting there ruminating and developing. I tend to not immediately squash feelings that I have, even when they are tending towards the negative. I find if I work through them, something will come of it for growth.

So as this was swirling in and out of my consciousness, I focused on the fact that I always strive to not let my situation rule my behavior, regardless of the control, or lack there of, I have over my actual circumstances.

And right there, that was the beauty, I too can choose my service. Perhaps, not the actual service, but I how I conduct myself will affect my impact on my community.

Someone very dear to me, and who I look up to in our own community, sent me the following quote. I have since referenced it in all the times that I have felt powerless and resentful.

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It helps to solidify my resolve to be a contributing force in our community, however small my contribution may be.

We have a choice, even when we don’t. Service has a way of finding us , but we always choose how we accomplish it. This is both beautiful and scary, but mostly beautiful.

It Takes a Village

So, the other day a mother of a special little someone wrote about how she was tired of being judged when she goes out with her son. He is just a wee little baby, and you can’t tell he has special needs just by looking at him. She went out, after spending time getting him ready for the trip, probably looking for a bit of normalcy in a crazy new life. She felt the stares from other people when he started to cry. Crying that is not so easily assuaged with the typical remedies. Cries that often start from things beyond anyone’s control. Even armed with this knowledge, she still felt the pain of those looks. Looks that said, ” why aren’t you taking care of that poor thing?” Looks that made you feel like a bad mother, when the opposite is true.

When she shared that, I was reminded of numerous times I felt the same. One such time takes precedence in my memories. Wawoo was 9 months old when we discovered she had hip dysplasia. She needed to be in a cast that went from her lower chest to her ankles. I cringe and break out into a sweat just remembering those hellish 6 weeks, dealing with a baby in a body cast, who had dystonic, writhing body movements, g-tube and in diapers.  The smells, the rubbed raw skin, the tears. Believe me,  I didn’t go out with her unless I really needed to. Needing to equated, doctor visits, grocery runs, or moments when there was desperate need to feel typical in a world turned upside down.

Each time I went out with my child in her cast, in her stroller, up and down grocery aisles, sitting in doctor waiting rooms, or trying to breathe in the sunshine on a park bench, I would look up and meet the suspicious eyes of someone. A mother with her children, a horrified grandparent, gossipy friends whispering behind hands, and I would shrivel up inside. I would feel shame and anger rush through my body. I would feel defensive of myself, my child, my situation. I would think it was none of their business, but still feel affected, after all, their narrowed eyes and sizing me up glances told me that they “knew” a child as small as Wawoo ( She looked all of 2 months) couldn’t possibly put herself in a cast. Someone did that to her. Someone in charge of her care. I remember going home angry, or crying, or belligerent. I remember complaining to her therapists about it and joking that next time someone looked at me like that, while Wawoo was screaming bloody murder, I was going to shake my fist at Wawoo and yell,” Shut up! Or I’ll break your other leg.” Just for the satifaction of seeing their shocked faces and knowing they were wrong to think that of me. I remember that made me laugh hysterically and then sob hysterically.

We all have that in us, that judgment. We look at a situation on the surface and somehow “know”. Know that the situation can be handled better. Know what that child needs. Know what the parent is doing wrong. Know so much. Or at the very least, suspect. When in fact, we know nothing.

We don’t know what that child is dealing with, or that mother. We don’t know  what is right. We DO know that we hate being the subject of that scrutiny, yet we take part in it nonetheless. What makes us so happy to jump to judgement? I suspect it is that we live with feeling a lack in our parenting abilities and so we gleefully think, ” well, she is worse.”

Instead we should really live that quote, It takes a village to raise a child. That doesn’t just mean we must all be there for said child, that also means we must be there for each other. For we all go through so much difficulty and heartbreak, so much joy and sadness. It is better to only judge that which we are sure of and to lift one another in compassion and empathy. Life itself is hard enough without the rest of us trying to knock each other down a peg. We can be the sunshine in someone’s life, even a stranger, even a friend, even a loved one, even for a moment, even for a lifetime,  even without knowing.

 

To Parents with Kids like Mine

Dear Parents with kids with my daughter’s condition,

 

How would I live without you? Today is a difficult day, Wawoo is sick, I’m tired, my mind is at its wits end. This is a vent I posted on a FB page for families who deal with my daughter’s condition, Kernicterus.

“I’m hiding in my bathroom for a few minutes of blessed silence. Actually the exhaust fan is on drowning out the noise beyond the door, which is the same thing as peace right now. Radhika had a cold all of last week and part of the week before. Fevers, stuffy nose, etc. She went to school all this week, well on her way to being better. Then the weather changed yesterday and she woke up completely stuffed up and feverish at 1 am. I nearly lost my mind. I woke my husband up and (I don’t clearly remember this part) ranted about reaching my limit and take your kid and I’m sleeping. Something along those lines, to his eternal credit he simply got out of bed and squeezed my arm and took her to another room. Then I’m up at 6am to take over. The sound of swollen adenoids and mucus and stridor, the clashing of teeth as she attempts to the clear the mucus while swallowing, the inability to breathe through her mouth and subsequently, the sound of strain as she forces air into her nasal passage and finally at the end of the breath inhaling through the mouth, is enough to put me in bedlam. I’m serious, at this moment I might lose my mind. I. Can’t. Deal. With. Another. Day. Of.This. Shit. Seriously. I just needed to put it out there. I just need a break for more than a few days, I need a break from illness.
Rant over, thanks for listening.”

The outpouring of empathy, love and understanding from other parents going through the same situation was a balm for my ravaged heart. They live my life, my love, my anguish, my happiness and my insanity. They commiserate, they crack jokes, they support, but most importantly , they tell me it’s ok to feel like this , in this moment. They remind me it will pass eventually. Not to say I won’t be right back in this situation in a week, a month, a year, but that I will get a break at some point.

This is so essential to us parents. We need to know that someone knows what our life is like and that they can truly empathize. Sometimes, that is enough to get us through the day. We need someone to laugh with us at the absurdity of the situations we find ourselves in constantly. Some of these people I have never even met in person, some I will never meet, but we are connected in a way that goes beyond time and space. We are connected by our love for our children. We are brought together by the very conditions we hate.

In case people were worried, I had a good sob after this vent and then swapped off with my husband for an hour of relaxing in the bath with lavender and chamomile oils, soothing music and the blessed exhaust fan on full blast.

I am ready for the next day, as my new motto states:

This too shall pass….

and then come back…again …and again …..and again…..

But, I will have my special parent buddies to help me through. ❤

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