Avery Grace

Avery Grace

Wednesday, May 19, 2010

So this is Motherhood

We had the privledge of traveling to Atlanta for Mother's Day this year. It was lovely to spend the weekend with my mom, who happens to absolutely adore my children. It is fantastic to see the girls light up when Grammy comes around. She has made MORE effort than I ever imagined a long distant grandparent could make, and she manages to find a way to see them about every 4 to 6 weeks, so they know her well and the joy and comfort they demonstrate in her presence is obvious. We are surely blessed and lucky to have such support and family involvement. It can certainly make the world of special needs and disability easier to bear.

My mother, like me and so many women I know and love has redefined herself in her role as a parent, and now as a grandparent. When deciding to have a child, or in my case THREE, I am not sure we truly grasp the total impact these little beings will have on OUR life, on OUR priorities, and on OUR overall character and purpose.

I love my children, but sometimes I don't exactly have the same level of awe for the person that I am after having them. For most of us, the daily grind of caretaking will get easier as they age and become more independent. But for others of us, whose children will likely need a lifetime of care and assistance with the most seemingly simple of tasks, the role of motherhood shapes into something even more all-consuming and overwhelming. And as hard as we work to make sure our child(ren) is not defined by his or her disability, in the meantime, we too can easily come to be defined by our role as a parent of a child with a disability.

I still find myself saying all the time... "I never imagined I would have to ever do this" when I do things like get a handicapped parking pass, fill out forms for the state based medically dependent children's program, or still change the poopy diapers of my four year old. You would think that two years after diagnosis I would be used to it... but as our children age, their needs become less managable for one family to cope with and afford. So from time to time I can't help but see women my same age, out in the work force, going out for martinis and taking care of their pet fish... and I am admittingly a little bit envious. Even though I can fully admit that Avery (and Kaylin too for that matter) are my whole world and that all and all I am a much more authentic, aware, and true version of myself because of them.

Still... the me before them... the me who traveled and studied and read all kinds of fascinating books and lived on my own agenda... that me was pretty cool too... and every now and then I miss her. Just a little bit. And it's NOT that I am ungrateful or overly negative... maybe just a bit of a realist. God knows that I more than most can find beauty in even the most dire of circumstances.

So this mother's day more than ever I remain inspired by all the women who take on this role with grace. Inspired by those who work, who do it alone, who stay at home, who have perfectly healthy children and who have children who need a little (or a lot)of extra care... because regardless, it changes you. When you become someone's mother your life is forever different... and like anything, you can do it well, or you can fail. For MOST of us, it's probably not exactly what we expected. I am not sure you can even explain to an expecting mother how much she will love her child. It's a completely redefining kind of love. My hope is that somehow within the whole lifelong experience we can hold on to who we are... to what makes us awesome as individuals, and take some time out and away to connect with our own beauty. Because it's still there, even amidst the daily grind of carpools, lunch-making, diaper changes, potty breaks, spilled drinks, laundry, tantrums and cartoons... it's still within us. I know it is.

Tuesday, May 18, 2010

Connected at the Heart

One of the most attractive qualities I seek in other adults is self awareness. Being able to see, love and appreciate your authentic inner beauty while at the same time recognizing your flaws and idiosyncrasies. I love people who can laugh at themselves... and whose character is not a secret, but is out in the open for all to enjoy, and critique as they always do.

For the most part, I have been extraordinarily blessed to have found a few fantastic women to share my soul with. Women who don't judge me (at least I don't think they do) and who exude patience and encouragement towards me as I travel my own personal journey of revelation, joy, heartache, and transformation. Relationships are food to my inner peace, and I am so grateful to have some pretty outstanding individuals to call my friends.

The daily grind of motherhood... especially motherhood involving a special needs child, can be overwhelming and depressing to say the least. Feeling isolated and completely redefined doesn't help... and as I try to figure out who I really am and how I want to be defined in my sometimes chosen path is much more tolerable when you have someone who stands beside you, and holds your hand from time to time. If you bother to read this blog, you are likely one of those people who helps me feel sane, who reconnects me to the world beyond my own selfish interests, who shares in my life, if even only via internet. Everyone of you has a place in my heart, and I am so grateful to be able to acknowledge and appreciate you in some way, though I am sure it will never be enough.

Perhaps the greatest tragedy surrounding my daughter's diagnoses is that given the nature of her disorder(s), she may never be able to have the self awareness I speak of, or connect with others and feel the utter joy of sharing in someone else's ups, downs, and learn from someones experience other than her own. Autism is such an isolating disorder, and it saddens me beyond measure that she has no idea how much we love her, how important she is and how her presence has changed us, in every way, and made us better. I have written of permanence before, and that is such a tough concept to swallow. That she may indeed one day speak, and will likely make progress, but that she will almost certainly always be handicapped by her disability, handicapped in a way that socially inhibits her from realizing the abundance I write about when I acknowledge the relationships that make me whole. It is so difficult to wrap my head around... so I try very hard to live in the moment, and not borrow trouble that is most likely waiting for us around the corner.

Like each one of you, I KNOW that in some special way, my daughter has a purpose. She, if nothing more, teaches those of us whose minds DO work properly to have more patience, to stop placing unreasonable expectations on others, and to love in a way that is truly and completely without conditions. You see, she cannot tell me, and even has a hard time showing me, that she loves me and is connected to me. So I have become a master at finding even the smallest way to connect to her. Not with my eyes, or with my words, but with my touch, and with my heart. So though she may always be disabled in connecting with others, it is OUR job to learn from her. To learn how to love in the most simple of ways. She may not be able to speak of love... but to me and her Dad, she IS love. I wish for all of you, my dear friends and family, to one day see how beautiful that really is.