Sunday, November 15, 2009
At the risk of sounding cliche, I must admit I am humbled beyond words after our weekend.
Another constant in the world of having a daughter with a significant disability is the feeling of loneliness and isolation that can overwhelm you. Early on, I shut people out, and much like my daughter, I found I just couldn't connect. I was angry, astoundingly sad, and drowning in a world I never wanted to belong too. Hours turned into days, days into weeks, weeks into months... and now I find myself a few years wiser and a few years stronger... all because of a journey I never wanted to travel.
But I am not alone.
The network of friends I have somehow maintained, and even formed recently, is like a pillar of strength, a blanket of security and love, and an ARMY of strength.
They stayed with me. They see beyond disability. And they have found a way to relate to me and my family, love us in our darkest hours, and lift us up when we feel too weak to stand.
Saturday, November 14th 2009 was the "DFW Walk Now for Autism Speaks." I formed a team because my daughter deserves more. I wrote a blog about it. It was one more small way I can help be her voice. And we were not alone.
An ARMY of supporters donated money and even more took time away from their lives to drive all the way to Arlington, Texas to walk with us. To surround us with their encouragement, friendship, hope, and understanding. They lifted us up, and gave Avery a gift she may never understand, but will benefit from her entire life.
We are extraordinarily grateful that you have stuck with us. That you let go of your own agenda, and for a moment, gave my family your strength and avidity. We are forever beholden, and truly blessed to be surrounded by such magnanimous and devoted friends and loved ones.
Thursday, November 12, 2009
I didn't expect to feel any particular wave of emotion on... Halloween. It's halloween for crying out loud, not thanksgiving where I can surely be expected to get a little teary eyed when I count my blessings or Christmas when I celebrate in the comfort of family and friends. So why on earth, might you ask, did that woman start crying right before her 18 month old knocked on the first door and quickly hold out her pumpkin bag saying "treat please!" Why the tears on a silly, carefree, seemingly harmless holiday? Well, for the first time, I saw the joy of a holiday in my child's eyes. I witnessed her light up when someone gave her candy, eat it with a big messy smile, and understand how to participate in the festivities. I am both happy and sad to say... it was a first for us. So the tears I shed were both tears of sorrow and tears of joy all blended into one blubbering mess of a mom. I got it together after I had a moment, and I am pretty sure no one was aware of my heartache.... but nonetheless, it was yet another lesson learned for me.
I try really hard to convince myself and everyone who knows me that this is all something I can handle. That having a special needs child is a blessing, and that it is her abilities that matter the most and not her disability. That Autism will not define her. And I really do believe that, but I would be a bonafide liar if I told you that I didn't take pause every now and then and realize the sadness of it all. That I didn't see the time lost, the stolen victories and the despair in certain truths. There are certainly times when I hate Autism and what it has done to my daughter, while in almost the same breath I can tell you how much better I am because of it. And of how Avery brings more light and joy to my heart than you can imagine. It is manic in every sense of the word.
So what am I to do with all of this? How am I supposed to compartmentalize my feelings and somehow make sense of them? I wish I had the answers. I don't, but there ARE a few things I know for sure.
I know that Avery IS special, and in her own totally different, fiesty and colorful way, so is Kaylin. I CAN celebrate each of them for who they are, and for what they CAN do and understand. I am allowed to be sad every now and then when I realize how incredible impaired Avery is, especially in comparison to her sister.... and it is also useless and idiotic to ever compare them. We are all better because of heartache... doesn't mean it doesn't hurt. My own personal happiness cannot come from anywhere or anyone other than from within. I have to work at it, and I really can alter the way I think and perceive. I can choose to be content. I can survive despair, and overcome it kicking and screaming. I can live in love, and wake up every morning and be grateful. It's up to me. It cannot be dependent on someone or something else.
I guess I am writing all of this as a lesson in self discovery. A lesson I am gradually, albeit, very slowly, beginning to understand. I really do "get" the big picture, but in the day to day stuff I sometimes have a harder time. I worry WAY too much, lose my patience more than I care to admit, and have tiny moments when I want to hide in the pantry. But if I step back, away from it all for just a second, I can ground myself again. I can gain a better and brighter perspective, and move onward. I have to remind myself all the time that this is a lifetime thing.... and it's a life I love.
My precious daughters were both butterflies this year for halloween. It may be the last year I get to choose a costume for Kaylin, as I am sure she will have an opinion from now on, but this year she truly loved it. She saw herself in the mirror and was beyond enamored. She left her "hood" on for 4 hours... and was totally in her element. It was beautiful. Avery was also glorious in her own right. She may not "get" it, but I think her costume was totally fitting because, like a butterfly who can fly way up in the air, Avery has a different perspective, and gives us a different perspective as well. She adds color and love to our lives, and dances to her own beautiful beat. I wouldn't trade my two butterflies for anything in the world, even with the unique set of challenges they may bring with them on their journey.
Even though halloween has come and gone, the memories we were able to create this year remain, and the days and hours we have with each other continue to enrich our lives and give us meaning and purpose. So with that, I wish you all a joyous fall, and hope that each of you are able to see the gifts you have in your life... and be serene.
Saturday, November 7, 2009
Five years ago I knew I was blessed. I had just married my best friend, and was eager, hopeful, optimistic, and a bit euphoric about our love, our life, and our future. Life couldn't get any better.... or so we thought. It still amazes me how time builds wisdom, and how passion and companionship can overcome life's toughest adversities. I'm just lucky I get to experience it all with one very special person who gets me. Who puts his family first. Who loves without conditions. Who patiently participates in my daily desire for hope and abundance. And who also happens to be the most loving, compassionate, and generous father I know.
On October 23rd, Bryan and I celebrated our five year wedding anniversary. Most of you can probably relate to the fact that in some ways the time has flown by, while in other ways I feel like we have been together for much longer. Regardless, our marriage has had to grow and change in ways we never expected, but like everything else in life, without struggle, we wouldn't get to experience the immense joy. Without heartache, the beauty of perspective and grace. We have endured all of the above and more. And thankfully, I am happy to report that we are still going strong. Still hopeful and optimistic. Still a bit euphoric, but now for different, more meaningful reasons. But we certainly understand a thing or two about sadness and loss.
So what is it that makes a marriage work when you are faced with such pain, and such sorrow? I read a recent statistic that stated 90% of married couples who have a child with autism will face divorce. So with those odds, what can we do to be in the lucky 10%? To remember why we came together in the first place and to continue to support and care for ourselves and each other as well as our medically fragile, special needs daughter AND our neurotypical daughter? How can there possibly be enough time in the day to meet everyone's needs? It is easy for me to see WHY these statistics are so high. The emotional stress, financial desperation, isolation from certain activities and events, daily struggle for seemingly simple tasks, permanency of the situation and so on.... but what about the joy. What about the simplicity of love? What about the incredible...and I do mean INCREDIBLE amount of self awareness that takes place when you get to a point where it's not about the race anymore. It's just about the connection we have to each other. Do these truths fall by the wayside? I'd be lying if I didn't admit that it scares me to death. I'd also be lying if I told you I had all the answers.
I write all the time about what it is like to be a mother... but also worthy, (perhaps even more so) of my attention should be on how to be a good spouse and partner. I am as flawed as anyone else, and perhaps a bit crazier than your average chick... but I know that. I know that I can be hard to live with, so if my husband is being hard to live with in any given moment... I can easily see through that. I am far from perfect, so I don't expect my children or spouse to be perfect either. It really is all in how you look at it. Everyday we have the choice to either be critical or grateful. To appreciate what we have, or to long for what we don't. There really can be a silver lining in the chaos, you just have to find it. I remain optimistic that we have what it takes to triumph. To beat the odds, and to do so with peaceful, loving, hearts.
Five years ago I was blessed. Today I am blessed even more.
Today I have someone to laugh with. Someone to cry to, and bitch and moan with when things seem too hard to handle. Someone who sees beyond disability. Someone who, like me, will go to the ends of the earth to help our daughter. Someone who supports me, tolerates my crazy moods and spending money beyond our means. Someone who rarely sees a dark day because he chooses to be happy. Someone who respects me and my needs, though they differ drastically from his. Someone who pours me a glass of wine every night because he knows our life is hard. Someone who sends me out to fancy dinners with friends because he knows I need a break. Someone who gets excited about the small stuff with me.... even when the big stuff is weighing us down. Someone who is selfless, non-judgemental, silly, and fun to be around.
Today I feel like the luckiest woman in the world because I get to share my life with someone who defines commitment. We are committed to each other. To our children. To their well being. To our family. And committed to only let crazy and sadness eek in every now and then... and then to pull each other out of it.