Thursday, March 2, 2017

On Love and Loss

"I used to think time was a thief. But you give before you take. Time is a gift. Every minute. Every second."
- Alice Kingsleigh, Through the Looking Glass

I think love is a lot like time.  

Love is joy. It is happiness and light. It is gratitude and wonder. It is warmth and hope. It is living.

And, love is pain. It is sorrow and darkness. It is fear and anger. It is cold and sad. It is death.

Love is such that you cannot have one without the other - two sides of the same coin. 

Although I know my NanNan, is finally at peace and I am grateful that she is no longer suffering, there is still a hole in my heart.

The hole is there because of the love. It is there because of the forty years of memories I made with her presence. It is there because I loved her and because she loved me. Love is joy and love is pain. 

Despite the sorrow I now feel, I will not give back the happy memories: of standing by her sink in a Bugs Bunny costume, stealing the carrots she was pealing; of the way her eyes lit up every time I walked in her room; of her laughter at whatever joke my brother was telling. I will not even give up the memory of her very seldom admonishments. 

I will live with this hole in my heart because it has been worth it. Every second I feel darkness is worth every second I've felt light. I know the hole will heal. I also know the happiness will never be replaced in quite the same way. I am okay with all of it. Love is joy and love is pain. 

Perhaps this is the greatest lesson: To fully understand the good, we must be vulnerable to the bad. 

Even with a hole in my heart, I believe love is worth it. Love is a gift.
Nan's Legacy

Sunday, January 1, 2017

On New Chapters and New Hope

2016 brought with it great happiness and great sorrow; it brought excitement and fear; it brought change and sameness. And now, 2016 is behind us. We can close the chapter.

With the dawning of 2017, what lies ahead? We don't know. The first day of 2017 is a blank page in a chapter of 365 blank pages waiting for us to fill.

For some, those blank pages bring an overwhelming sense of fear. The unknown can be very frightening - not being certain of the outcome, of the risks involved, of all of the players in the game. When we look at it like this, we can feel powerless; defeated long before we get started.

Perhaps though, we can shift our perspective: What if, instead, we look at these blank pages, this new chapter, as an opportunity? What if we see the power in the ability to author our own futures? What if, with each page, we seek to understand the world around us? What if, with each page, we actively work to make the world better, to make one person's life easier, and to understand that we are all connected?

New Year's Day is my favorite holiday for just this reason. It is new hope, new opportunity, and new capacity to take action.

We get to write a whole new chapter, creating with each blank page our response to the world around us.

We do not yet know the lessons that 2017 will bring, but we can be determined to learn them well.

We know that each year brings challenge and joy, so we can choose to face challenges with courage and to open our hearts to focus on joy.

There is a great likelihood that we will falter along the way, so we can forge new friendships and make old ones stronger, thus ensuring we have support when we need it.

No one has yet told us we can't, so we can be confident in our belief that we can.

Life is always good - even when it is hard. Be open to possibility and start your chapter this year with hope.

I wish you all the best for 2017 - I am confident it is going to be the best year yet.

Thursday, December 8, 2016

On The Family I Picked

When I was 15 months old, I was given a powerful message: blood relation is not the only family that matters.

When I was 15 months old, my dad picked me (and my mom). Technically that makes him my step-father, but he is my dad through and through.

He wasn't the only one who picked me and became my family, though. His parents became my grandparents; his brothers and sisters became my uncles and aunts. Never once have I ever felt anything other than a great sense of belonging. I am theirs and they are mine.

So, it has been with this message, deep in my heart and on the surface of all that I do, that I journey through life picking people to add to my family. It is with this message, that I hope to provide my children a roadmap to forming their own families. 

And what an amazing family I have - it is wide-spread; it is diverse; it is filled with love. 

This family of mine has loved and supported me in my darkest times and in my happiest of moments. I am secure in the fact that they will continue to do so - just as I work to do the same for them.

Family is fierce in its loyalty, in its love and support, and in its ability to endure. The love of family cannot be replaced, but you can always add more.  

I may not see all of this family I've picked all of the time. Always though, they are in my heart. And always, I am grateful for their presence there. 

As the chaos of holiday season ensues, stop a minute... think about your family - not only the family you were born into, but the family you've picked along the way. Think about why you've picked them and be grateful for what they've added to your life. Be grateful for what you've been able to add to theirs. And, keep searching for that next member of your family. 

I wish each of you the happiest of holidays with the greatest family one could ask for, one made up of blood relations and those you've picked along the way. 

Monday, November 14, 2016

On What If I'm Not Enough

As we get closer to this day... the day that Simon is to be discharged from the hospital... this is a thought that keeps running through my mind: what if I'm not enough?

What if
I am not enough to help the boy I love so much... my first baby?

What if all the love I have to give doesn't make him happy, or healthy, or safe?

What if everything I've done up until now has been wrong?

What if I will never be able to make the world better, or safer for him?

These thoughts are self-defeating. And, these thoughts are real. I cannot pretend that I don't have them.

I would imagine that all parents must feel this at some point, for some reason. It seems a shame that we do not always seek to support one another during these times of doubt, but perhaps we have to admit we have these feelings in order to receive that type of support. So, here I am admitting these thoughts - these doubts so prominent in my mind.

And please know, I am so grateful for all the support we have received. I would not have made it through this without it.

I will allow myself these thoughts because even if I try to ignore them, they creep into my mind and make me ill with worry. What if I am not enough?

And then, after I have sat with this thought that makes me sick, I will let the logical part of my brain take over. I will remind myself that I can only do my best. I can only fight my hardest. And, I can know that I do both.

For both of my children, I will fight, not to make life easy for them, but to give them the tools they need to be successful and to teach them how to use those tools.

For both of my children, I will share with them the lessons I've learned, even though I know that the lessons heard mean so much less than the lessons lived. And, I will support them as they learn their lessons the hard way.

For both of my children, I will be an example of kindness and compassion. I will show them what it means to seek to understand rather than to judge. I will do this so that perhaps they will, in turn, do the same.

What if I am not enough?

Reality is, I cannot possibly be. No one person will ever be enough. I have to let go of the ideal. I will remember that I have so carefully and purposely constructed this network of people - this network that is my family's village. So, instead of wallowing in my self-defeating thoughts, I will add to my village.

And, I will hope and pray: that the kindness of others, that the support of those that love them, that access to resources, and that love surrounding them, will be enough to help them through this really hard thing called life.

Thursday, November 10, 2016

On Words

Words have power: the power to hurt and the power to heal. 

I actively choose to omit (most of the time, and even when it is really hard) the words that will do damage, those that have no purpose other than to make myself temporarily feel better. I know those words will not serve me well - they will not move me forward along on this path that is my life. 

Instead, I actively choose to use words that show love and understanding, kindness and respect; words that show my gratitude. I want to use my words and my actions to help others in their time of need, even when I do not know the exact words to say. 

Now, I want to use my words to thank each of you that have reached out in some way. 

You may not have words that will make all of my sadness and fear go away. You may not have words to fix this challenging time I find myself and my family in. Yet, you chose to speak anyway. 

Please know, your words are healing. Your words of kindness, compassion and support have allowed me to hang onto my thread - they have given me and will continue to give me the strength I need to keep walking forward along this very bumpy road I travel. They have picked me up when I have faltered. 

From the bottom of my heart, thank you. 

And please, never doubt the power of words. 

Monday, November 7, 2016

On The Hardest Thing Ever

This is hard. I mean really really hard.

I am not generally afraid to do hard things. In fact, I've done a lot of really hard things, Hard makes me stronger. Hard builds my character. Hard allows me to understand others. So hard, isn't something that bothers me - at least when it's something hard for myself. It's a different story when the hard thing has to do with my child. 

I am not totally sure why I am writing about this. Maybe it is partially because I currently cannot think of anything else and maybe, if I write it down, it will free my brain and give it some release. Or, perhaps it is a little bit because I know I can't be the only parent who has ever dealt with this, and so my sharing might help someone else. 

The stigma of mental illness looms heavily. I find it absurd that we, as a culture, can completely accept someone having a physical illness, yet cannot fathom accepting the illnesses we cannot see. So many individuals suffering from mental illness see their misery as a personal failure, a failure to be "normal". So many parents of children suffering do not know how to talk about it with them, or with others - they do not know where to turn for help. Everyone suffers in silence.

I do not want my child to go through life with this pervasive cultural belief hanging over his head. I want him to know that being autistic and having a mood disorder is not something he did or didn't do. It is part of who he is and he is a most wonderful person. He is a wonderful person who suffers in ways that others can only imagine. He is a wonderful person who fights, on a daily basis, to be able to do things that other kids do, to be accepted, to be liked. And, even in his darkest hours, he can always find a kind word for someone else.

I am tired of it being hard to talk about. And yet, still, it is. It is so deeply personal. And it feels like no one else could possibly know what it is like.

It is hard to talk about because I'm living it with Simon every day and so it is always fresh in my mind... and, painful... ALL.THE.TIME. It is hard to talk about because I do not want anyone to feel sorry for me, or for him. I want to express how I feel, my fears and concerns, and not see that look of pity on someone's face. It is hard to talk about because, inevitably, well-intentioned people that love me and love my child will ask me what they can do. And, it is hard because I know I need something. I know Simon needs something. And, I have no idea what it is that we need.

Not knowing; not being able to create a roadmap with which to travel; not having a solution to work toward - this is a completely uncomfortable place for me to be. I may be someone who runs toward chaos, but I do so because I can make it certain - I am generally confident in my ability, through my determination and with perseverance, to eventually find a solution, to solve the puzzle.

This situation is not like that. The chaos I'm running toward has not allowed me to make it certain. Instead, I have only found more chaos, worse than the chaos I've left behind.

On Friday, Simon jumped off my deck (a good 12 foot drop) and ran away. Fortunately, he was found by a kind state trooper and brought home. Fortunately, also, the state trooper understood that my autistic child was not in a state of mind where either of us could guarantee his safety. And so, he got Simon back into his car and we went to the hospital. I am glad that AAMC agreed to keep him until a bed opened up at Sheppard Pratt in their pediatric unit. And we are lucky, that I was able to hold it together, despite being absolutely overwhelmed and terrified by the whole process.

So here we sit. I have one child who doesn't understand why his mind is a scary place, jumbled with fear and uncertainty. A child who understands that decisions have consequences, yet cannot seem to stop himself from being recklessly impulsive. And, I do not have an answer for him. Other than telling him that at the new hospital they will help him, I do not know what will happen.

And my other child? Well she is scared by what has happened, and feeling like her brother is getting attention because he is being "bad." She doesn't understand, even when I try to explain, that his mind is feeling sick right now. He is making bad decisions, but he is getting attention because he is not being safe, because he needs help. I cannot find the words to tell to her that right now he thinks being alone or dying is a better option than what he's living in his mind. I do not understand it myself, so how can I explain it to her in a way that doesn't terrify her, as it terrifies me? When she asks when he'll be better, I have no answer. I do not know what to say.

I want so very much to help them both through this. I want to keep working to give Simon the resources he needs to live his best life. I want him to live a happy life, one where he is not afraid of what's inside of him all the time. I want Alli to always feel that she is important, too, even though her brother's needs are constant and continuous.

And, the very hard part is that I do not have the answers for either of them. Or for myself. It is this impossible situation that I am wading through, carrying my children on my back.

These days I feel as though I am barely hanging on by a thread. Sometimes I wonder why it all has to be so hard. I wonder why I can't, every once-in-awhile, have the easy path to travel...

There is simply no other choice though, not for me, and not for my children - I must hang on.

As long as I hang on to that thread, then eventually it will be okay, for all of us. And we will be stronger than we started. If I don't believe this - if I don't continuously remind myself that I believe this, I'll never make it through.

Monday, October 10, 2016

On Anniversaries... Part 3

How does three years go by so quickly, and yet contain a lifetime worth of changes?

As most of you know, three years ago, on October 11th, Emily and I hydroplaned into the back of a tractor trailer. I was driving. Weather made it an unfortunately unavoidable accident. Fortunately for me, I do not remember the accident or the immediate aftermath.

What I do remember from that time three years ago, is the kindness and caring that surrounded me: from family and friends, from medical staff and strangers, from people I barely knew that I now consider family. That kindness sustained me in some very difficult times. I will always be in awe of and completely amazed that my life meant so much that others exhibited such unwaivering and unending support.

Although I do not tend to focus on the accident or even the lingering challenges I face, I think it is important to mark this day as one of significance.  Because, this may have been a very bad day three years ago, and I may have had many more weeks of very bad days, but I can't overlook the wonderful things that have occurred as a result.

If I hadn't been in that car accident, and survived, I wouldn't have a clue how strong I could be. My children wouldn't have an example of resilience, perseverance, and determination. I wouldn't be able to watch them grow, learn, and change on a daily basis. I wouldn't have this amazingly strong friendship with Emily - one that I know will survive pretty much anything (because it kinda did). I wouldn't know that an entire extra family is in my corner, cheering me on. I wouldn't know what it means to be able to rely on friends and family and have them come through for me, day-after-day. I wouldn't be able to give back that kind of dedication to others. I wouldn't be where I am... in my career... in my life... if I hadn't lived through that very bad day.

And so, I am grateful. I do not want to ever take for granted what I've been given... what I've been shown. I want to continue to live my life celebrating each anniversary of the day I didn't die as I celebrate the day of my birth - with joy and gratitude that I am alive, living the exact life I was meant to live.

The First Two Years
So thank you to the staff at Shock Trauma for doing your jobs so exceptionally well. I know that every single one of you put your hearts and souls into what you do. You all make a difference, no matter what your job in the hospital. I'll see some of you tomorrow for my CAT Scan (that I am very glad isn't a cerebral angiogram this year).

Thank you to the friends and family who stood by my side each day, supporting me with love and caring.

Thank you to the strangers and mere aquaintenances that stopped their busy lives to say a prayer for me.

This Year
And thank you to Emily for celebrating with me. Once again, I am so glad that we are able to celebrate this milestone together - that we are alive to do so, and that we'll keep celebrating each year to come.