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. 

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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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5 Minutes Out of My Day

I was just out buying groceries at a store. As the cashier was checking out my items, the kid bagging my groceries was chatting me up. He had special needs, not physical like my daughter(CP), but social. I could see the looks on the people’s faces, waiting in line. They had that pained, oh God, we have to deal with this slowing us down look, one even left our line and went to another one. Even the cashier looked annoyed and sighed as my groceries were backing up.This kid was slow, he definitely added some time to all our grocery experiences, but let me tell you, what a way to brighten up my day. He asked me a bunch of questions to make sure he was bagging to my specifications, he asked me what I was doing for Valentine’s day and excitedly told me he was going to send his girlfriend flowers, he told me about his favorite new movies and he complimented me on my nose ring, we talked about how cool it must be to fly planes ( my husband is a pilot). All with a sunny smile and a lot of laughter.
To all the people who were waiting in line behind me. Yeah, you will lose 5 or 10 minutes of your day, but man, you will open your heart to the beauty of this world.
I pray that when the world deals with my daughter, they will take a few minutes to treat her like a person and in return,I promise, they will get a warm heart and beauty to add to their lives .

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Meeting that someone…

Today after I dropped my daughter off for camp, I stood around and chatted with some other moms. We spoke of our kids, our life, our normal. It got me thinking about support.

That feeling you get when you meet another person who knows what you go through. It is a revelation, wow, she gets me, she lives my life. It is such a relief to know you are not the only one out there. That you are not crazy for the way you feel or behave with your special little one.

It is a life changer to be talking to another mother and not have to smile when they compare their hardships to yours, because it really can be compared. I always try and be supportive to my non special needs mom friends , because everyone, and I mean everyone, has hardships and difficulty, but there is something freeing about talking about my problems with someone who lives in my shoes.

We are in a life that can be isolating. When friends ask what is going on with me, there is that moment of hesitation while I weigh telling them “fine” or really let them in. It is a heavy life and I have had experiences of letting people in to either see their eyes glass over or get a ” oh that’s rough, guess what happened to me?” . True empathy is rare and we are all so different that we all need different support. I don’t expect anything from anyone , but I am careful about who I let in, because it can lead to resentment. Resentment kills relationships, so I just realign what kind of support I can expect from different people.

That is why is so amazing to have mama friends in the same normal that I am in. I don’t have to watch my words or expectations and more often than not my expectations are exceeded.  From them I gather strength, love and acceptance.  We are a resource to one another, helping to give the best to our children. I am very lucky to have quite a few mamas I can rely on to call or write to in a tough time. Although we live far from one another , we are sisters in arms. For that I am grateful.

Feelings, Emotions and Logic

Wawoo just started a 3 week developmental summer camp. It is amazing and she loves it. I love seeing her work hard and developing skills to help her become independent.

The only downside is seeing that she is the most severely disabled child there. All the other kids have better body control and are more independent than she is. Logically, I know that each child is different. I know there are no comparisons when it comes to disability. I know each child’s situation has pros and cons.

I know all these things, but my heart is not on the same page.

My heart is a tender little thing, it sees what my child could be, where we are working towards, but aren’t yet. It sees these other children communicating with their parents. It sees them walking in their  walkers on their own or with minimal help.

It sees all this and it tightens with pain.

Big sweeping waves of pain, of wondering if you are doing something wrong or not enough. Guilt and doubt are never very far away in the land of special needs parenting or perhaps parenting in general.

Luckily, it’s just me who is feeling this. Wawoo is smiling brightly at all her new friends and laughing and crying with them as they all push their little bodies to the best of their abilities.  She reminds me to feel what I feel,but then to let it go. To hold onto the joy of her getting what she needs, surrounded by people who encourage and love her.

This is a lesson for life itself. Do your best and see the best in everything you do.