Light

One of my favorite things to do during this season of giving and thanks is to simply drive around and admire the lights. Even as a little girl, even when it wasn't Christmas at all, I would beg my mom to take me out to see the lights of the night time... even just the lit up grocery store signs would make me giggle and smile.

For the very first time this year we will be celebrating Christmas at our home in Texas rather than traveling to Atlanta, so I couldn't wait to put up our very own lights to join in on the season. Something about light still brings warmth and joy to my heart, and as I ponder this phenomenon, I realize that my own journey has many "lights" that lift me up when I am having a bad day, and bring a sense of ease to my soul when I let fear or darkness ease in a little too much.

The brilliant and beloved Martin Luther King once said "But I know somehow, that only when it is dark enough, can you see the stars." Lately, I have been using this blog as an outlet for my feelings when I am having a hard or dark day. Most of our days are actually good, and I am delighted to say that even amidst that chaos, I have found a peace in the day to day experience of being the matriarch of my beloved family of 5. But I must say that I am truly grateful for those "darker days" as they allow me the opportunity to practice patience, to practice that art of maintaining an attitude of gratitude, and to have a much greater appreciation of the many lights in my life that bring color and brilliance to my family, my perspective, and my overall life experience.

I have to say that most of the "lights" in my life come in the form of people. People to help me choose laughter over tears, who demonstrate love and encouragement in their words and actions, and who, like me, can see the love and light in Avery's eyes. All three of my precious daughters are a huge source of light to my soul. Each of them, in very different ways, afford me the opportunity to learn and grow as an individual every single day, and I am so grateful to be so lucky to be their mom, and watch them change and develop into their own very unique little people. Disability or not.

Earlier this week I had the chance to meet another beaming light. It was a quick encounter, but it came just in time to illuminate a dark day, and I want to share it with you. I was in the waiting room at Avery's OT appointment and I met a handsome little boy, about 10 years old or so. He was playing and communicating with his babysitter, but not in a way that you might think. I realized that he was non-verbal, and had Autism... and was then so excited to see him use his electronic device to be able to express social gestures, wants, humor, and needs. It was a touch screen device that he could type in or touch a series of pictures. Then it would "talk" for him, allowing him to verbally communicate without saying a word! Very cool, right!? I thought so, and I can't tell you how much hope and light this brought to my day!
Avery is doing great on her touch screen ipod and ipad. And we have purchased several app's that should do this same thing for her one day. She is pretty preoccupied with her games, songs, and videos on it right now, but I am very hopeful that in time she too will be able to use her very own device to communicate with us in some capacity or another!

Sharing my fears, thoughts, anxieties, heart and soul on this forum has it's pros and cons. I can't please everyone, and that certainly isn't my purpose. I write on here because it is cathartic to me, and because I have family and friends who love Avery and our family and want to hear about our journey. If you know me at all, then I hope you know that at the end of the day, I love my life... the good parts, bad parts and ugly parts. They weave together to form a colorful, beautiful, warm and empowering experience that I wouldn't trade with anyone's. Even disability and disease can't weaken the bonds or limit the love, and through the darker days, I am able to see more light than I ever imagined. We have each other, and that is the brightest part of all.

Maybe

I don't know exactly what it is.

Maybe it's the time of year. Maybe the hustle and bustle of Christmas, the smiling, hopeful, children anxiously awaiting Santa, the many family activities and traditions all around me... maybe that's it.

Or maybe it's the 4 and a half year mark. I remember hearing in grad school that the critical language development is almost over by the time a child reaches the age of 5, and that if a child hasn't developed some form of communication or language by then, that the chances of language acquisition in the future are very small.

Maybe it's the astoundingly astonishing skills I see my 2 year old perform on a daily basis that I am so incredible grateful for, but that are also a constant reminder of what "normal" is and what my precious older daughter may never be able to do.

Maybe it's the wonder, fear, hope, and almost agonizing and overwhelming feelings I have when I worry about the future of my adorable 3 month old baby girl. As I fall more and more in love with her, I can't help but wonder if she too will one day drift away. Barely looking at me, not noticing that I am even in the room, being painfully silent and indifferent, and completely unaware of own actions and her impact on the world around her.

Maybe it's the stories I read as I do hours of "Research" on Autism treatments, testimonials, therapies, and so on. Stories where children "finally" learn to talk and connect with their parents, some even learning to say "I love you." Maybe just maybe it's too painful to read when my child doesn't say a word. Not a single fucking word. Maybe I'm too selfish to read these stories without feeling even more sad and alone when all I am really looking for is some hope. Some glimpse that one day this will maybe just maybe get easier. Maybe I know that it won't and that scares me to death.

Maybe it's the hormones. The euphoria I felt right after having sweet Presley is fading I guess... And there certainly has to be some chemical/brain component to explain this rut.

Whatever it is, you can obviously see I am struggling.

Maybe I shouldn't be writing this post... but maybe some of you reading it have been here before... and maybe it will help you in some way not to feel so alone.

Don't freak out... I'm not on the brink or anything, just having a hard day.

I have a hard time seeing the "end" of all this, maybe because there is no "end" to this particular crisis.

I know some people certainly have it worse. Things could always get or be worse.

I also know that I have PLENTY to be grateful for. And I am. But I am also entitled to be a little pissed every now and then. To be real and raw and up front about how unfair life can be. About mastocytosis. About Autism, and about missing my daughter who used to light up a room with her smile.

So maybe I should spend my time counting my blessings rather than my hardships.

Like my loving, supportive, helpful husband and extended family.

Like my fiesty, healthy, most of the time happy toddler and smiling, gurgling, adorable baby girl.

Like my health.... a huge one...even though I would happily trade my life if it meant hers could be healthy.

Like my beautiful home.

Like my supportive friends.

Like the times when Avery hugs me.

Like the times when she smiles in pride when we praise her like crazy for occasionally going potty on the toilet and not her diaper.

Like when she catches my eye, even for a split second before looking away.

Like her laughter.... her spirit, her smile. Her generally happy, albeit disconnected, disposition.

And my precious life so far that has shaped me into someone who maybe, just maybe can come through this stronger and better. God I hope so.

I really can see the good despite the bad.... but I must say that I had no idea how hard this would continue to be. And she is only 4. geesh.

Maybe our story can be a wake up call to someone else. Maybe it will help someone like me not feel so helpless, guilty, sad and isolated. Maybe the good is right around the corner, and we just have to keep plugging along to reach it. Or maybe it's staring me right in the face and I just have to keep looking to find it.

Lot's of "maybes."

A few certainties, or "things I know for sure:"

I certainly need to look beyond language. I certainly do and can continue to find ways to connect with and love my daughter, that extend beyond words and gestures.

I certainly can see how her life and disability create balance and beauty by the lives she touches and the hearts she manages to open.

I certainly will find a way to give her life purpose and meaning.

I will certainly have hard days, uphill struggles, but I will also have amazing days, and will be able to find hope and possibility in the tiniest of successes.

I certainly know more about love, joy, courage, hope and heartache than I ever understood before.

I am certainly better because of Avery. And because of her precious sisters, who I certainly believe will also one day benefit tremendously by the way of compassion, tenderness, and unconditional love.

I certainly feel better after writing this post... so maybe it wasn't such a bad idea after all.

Blissful ignorance

If someone had told me when Avery was first diagnosed with Autism that she would still be non-verbal at 4 and a half I wouldn't have believed them. After all, before this all happened, she HAD words. She HAD gestures and social skills.... I was CERTAIN that it was just a matter of time before they came back. Boy was I wrong.

I remember struggling when I would see neuro-typical kids doing cute and normal things, responding to their environment, to their parents, and participating in daily activities. My heart would just sink. I was sharing that with my dad at the time and he advised me to stop comparing... and if I had to compare, to compare her to other children with Autism... because he, like me, assumed she was high functioning, and only mildly impacted. In fact, when we first went to the neurologist and the developmental pediatrician, they were both reluctant to diagnose her... then by the follow up visits they both said "PDD_NOS" or mild Autism. Now we have a "moderate to severe" case. So we were gradually eased into this world of disability. And even though we have ALOT of therapy and routines in place, at times I still feel like I am drowning. Some mornings I still wake up and can't believe that our life has turned out the way it has. I can't believe that after the tens of thousands of dollars spent, prayers said, and therapies tried... that she is where she is. It is mind boggling.

I have written time and time again about finding the silver lining, about focusing on the positive, about altering the way we think and perceive our situation and about the beauty of disability and the light I STILL see in my beautiful daughter's eyes. And I still stand by those posts... but it's also important to share that even when things don't necessarily "get better" that we are still able to march onward. To find happiness and hope within the precious moments even when the whole thing seems agonizing and unfair.

I wish that I could tell you that I have figured out how to completely let go of the "what if's" and the "why me's." I haven't. It still sucks, and as my sweet non-verbal four year old gets older and bigger, I fear that our challenges will only get more difficult and complicated. I guess I am glad that I didn't know where we would be today when she was first diagnosed with Autism. And the truth is, I don't really want to know where we will be four years from now. Having hope and optimism is part of what keeps me going. I can appreciate the smiles, occasional gazes, happy sounds and simple attempts to communicate. Things could always be or get worse... but thankfully we have an army of supporters to lift us up when times are hard. To remind us that we are loved, and I know that we are.

The lessons I continue to learn about myself, about the love and generosity of others, about the strength of a heart and the importance of compassion and endurance are what enable me to keep getting up day after day and working hard to help my daughter. I accept that she has Autism, but I haven't and won't give up on her. I once heard a mom say that if all her son could learn to do was ride a bike, then she would help him be the best bike rider he could possibly be. That's how I feel about my sweet Avery Grace... whatever she can do, I want to help her do it as well as she can. Whether she ever talks or not.... I will figure it out, and I will empower her to be all that she can be. I will make sure her voice is heard... even if you never hear a sound.

Walking Again...

For the first time last November, I decided to invite some friends and family to walk with us in the Dallas/Ft. Worth "Autism Speaks" walk. We were able to raise some money for something of vast personal significance to us, but more importantly, we were astounded beyond words at the loving support of our dear friends and loved ones who took time away from their own busy lives and agendas to come help us BE Avery's voice.

Autism can take on many different faces. For some kids, the disorder is mild, and even hard to distinguish with enough time and therapy. For others, like Avery, the disorder seems to take over. Impacting every moment of our every day.

Avery is very disconnected and almost always completely in her own world. She has trouble with every aspect of development, from large and fine motor skills, to body awareness, to even the most simplistic forms of communication. Climbing stairs, using utensils, walking with coordination, and imitating even the most simple sign are very very challenging for our precious four year old. She (and we) work tirelessly to join in her world and to help her find her way in ours. We won't give up. And we will continue to be her backbone, her hand to hold, and perhaps most importantly, her voice, until she can find her own.

So this year, again, we will walk for her. To support and encourage her on her journey. She didn't ask for this, and she deserves more.

Avery deserves words of support and encouragement even though she can's speak them. Avery deserves attention even though she often can't seek it out. Avery deserves personal rights and advocacy even if she doesn't know it, and Avery deserves compassion, love and awareness... lessons she teaches us everyday in her own unique and special way.

She deserves more.

When I read words like "every 20 minutes another child is diagnosed with Autism" my heart sinks. I literally feel a lump in my throat and a pulling at my heart. When we heard those words, though we already knew it, we became different people. In that instant.

She deserves more.

As we drive her to school at the crack of dawn, then onward to therapy every afternoon and even on Saturdays...

She deserves more.

As we dispense countless medications, supplements, spend hours in a hyperbaric oxygen treatment chamber, search for diapers large enough to fit her, and time and time again help her remember simple tasks like not throwing her sippy cup and trying to use a fork.

She deserves more.

As we long to connect with her. Wait for her to look us in the eye. Make attempt after attempt after attempt to "play" with her, and one day... maybe one day, hear her words again.

She deserves more.

She deserves to be heard. To be understood. To have the same benefits and rights that healthy kids have. To have fun. To connect with us. To share with us.

So I invite you to check out our team page on the Autism Speaks website. I am going to walk for her. It is so simple, just a short walk, but at least it gives me one more thing I can do for her. To do right by her. It gives you all something too. Even if all you do is look at her team page, and remember how devastating it can be to lose your child into this neurological disorder...it gives you knowledge. So next time you see a little kid having a tantrum, not following directions, not responding, wearing diapers though he seems to old, or not looking or talking to you... you will remember. Remember Avery. She deserves that.

Autism Awareness is why I will walk. Avery deserves it.

Please visit www.walknowforautismspeaks.org/dfw/averysarmy or click here

Evolution of a dream

When I gaze lovingly at my sweet newborn baby girl, it's difficult not to go back to the first time I had a baby, and the hopes and dreams I once had for her. Back when I was a brand new parent, I was naive with optimism, and held the same assumption that most new parents maintain... that my precious baby girl would be smart, happy, and.... normal. Her dad and I both hold post graduate degrees, we come from educated families, athletic backgrounds and in many ways, sheltered and "charmed" upbringings. Why wouldn't our new daughter be anything but perfect? I had dreams of playdates, dance classes, soccer and basketball games, gymnastics, honor roll, school plays and so on. I had already picked out her preschool, and chosen carefully where we would live so the public school system would be optimal for her certain niche for academics. What a jackass I was.

As my beloved first born began meeting her developmental milestones, I was charting them one by one, videotaping with pride and documenting dates and skills. I can honestly say with 100 percent certainly that for the first blissful 12 months of her life I had NO worries about cognitive skills, neurological impairment, autism, apraxia and so on. Given my profession working with these kiddos and families, I was sure that since I had no indication of anything wrong by 12 months, that surely we were out of the woods... so my dreams for her continued, and I think Bryan and I even discussed opening a college savings fund account.

Even now, when I look back at pictures of Avery's first year, I can't help but be nostalgic about how "happy" we were, and how her diagnosis and subsequent developmental nose-dive have forever changed us... in every way. And how even now, how having a child with a disability colors the way I perceive almost everything, including my relationship with my two other daughters... and everyone else for that matter.

Then as time marched on, and I became slightly more aware of what was really happening to my precious golden child, I thought... ok, so maybe she will need an extra glass of wine to get through social events when she get's older... or, maybe it's just a matter of time before her understanding and language "takes off." Afterall, I had seen other kids with Autism tread beautifully through their toddler years becoming quite verbal and capable of many skills. Then a little later, when we were still waiting for the ever illusive "progress" I remember seeing a young woman of few words bagging groceries at our local supermarket... and I began to hope and dream that one day Avery might be able to do that. More time has passed, still waiting for the big leap in "progress" and my dreams are even more simple. I dream for one or two words. I dream that maybe she will understand, even if just for a fraction of a moment how much I love her, that she may be able to dress and feed herself, that she may one day brush her own teeth, or stay with us without wandering off, or understand to be afraid of pools, traffic, lakes and so on.

Slowly and steadily my dreams for her have drastically evolved into something I NEVER imagined. But I still have hope... it just takes a different turn every now and then. And believe it or not, my two other girls, especially my 2 and a half year old who has exceeded all expectations, and developed beautifully into a neurotypical preschooler... make me feel whole again, and better about myself as a mother, and a dreamer. They have renewed my sense of peace in a manner of speaking, and helped me realize that despite disability and differences, Avery is amazing, special, beautiful, and gifted in her own way... just as all children are.

So, the important lesson is that I haven't given up. Maybe I have "given in" to truth and acceptance, but I still have to believe that Avery is here for a purpose, and that I can handle the challenging life that lies ahead of us. I will still look into my precious newborns eyes as a dreamer, but it's a little different now. How couldn't it be? But with her birth, I have yet another renewed sense of hope... hence her middle name, and I can't wait to be a part of her journey as well... no matter where it leads.

Welcoming Hope

Presley Hope Beeson blessed our crew with her early arrival on August 30, 2010 at 9:43 am, joining her loving sisters Avery Grace and Kaylin Joy. The three weeks since her delivery have flown by, and the dust is just now beginning to settle. After a routine c-section, Presley had some respiratory issues and spent a couple of days in the NICU, which was harder than I expected, but she was where she needed to be.

Having one already medically fragile and disabled child puts moments like that into perspective, but also lets in a little more worry and anxiety than the average optimistic new parent likely experiences. As I did with my second daughter, I am sure I will have more than a few sleepless hours pawning over every tiny rash, fever, developmental milestone and so on.... but in the end, I feel extraordinarily blessed and happy to be the mother of three precious girls.

It's funny because growing up I always imagined I would have boys... since I have three older brothers and lots of nephews it seemed the norm. But I think we get what we are supposed to have, and I for one couldn't be more at peace knowing that Avery will have two sisters by her side as she grows up, and that they will learn tolerance, patience, acceptance and unconditional love first hand as they experience life with a disabled sister. I am certain we will face more than our fair share of challenges... but I remain pleased and euphoric about our little family and it's journey and purpose.

6 days after Presley's arrival, we were able to gather with some loving family and close friends to celebrate my dad's 70th birthday. It was a surprise party he didn't expect, and seeing his face as we shared in his special moment ranks at the top of my favorite family memories. It's hard for me to talk about my wise and loving dad without getting a little teary eyed. He is quite the force in my life and his critique, unwavering support, constantly evolving self awareness and world view inspire and amaze me. I feel so lucky to be his daughter and to get to learn from his words and more importantly his example. So celebrating his 70th brought lots of joy to my soul.

In these BIG life moments, it never ceases to amaze me how friends really can and do come through for us. In many ways it is like we have three kids ages 2 and under, so adjusting will be a bit challenging. The calls, notes, emails, meals and gifts are all so overwhelming and appreciated. We feel showered with love, and your support and friendship mean the world to us.

Finally, I can't close this post without a big shout out to our biggest supporter and helper... my mom. My sweet and helpful mom took a MONTH, yes folks, a month off of work to come be here and take care of my big girls. I can't just leave Avery with anybody, and my adoring mom burned the midnight oil with us, made lunches, meals, endured carpools, therapy, doctor visits, and so much more. We may never be able to repay her for all of her hard work and love, and we are forever grateful and humbled.

So now here we are, the five of us, getting adjusted to our new lives. All I know for sure is that it is now and will be chaotic... but I love it, and I am surrounded by generosity and support, which is such a gift.

You may have noticed our BLOG ADDRESS changed and is now: www.gracejoyandhope.com

Please check back from time to time if you get the chance... I'm sure I will have plenty to share when I get the chance!

Is she really that Different?

Without a doubt, the question most people ask me when checking in on Avery's progress is whether or not she is talking yet. I would say that it happens about once a week or so. It doesn't bother me, in fact, it usually gives me the opportunity to share a little bit about how Autism effects Avery specifically, and about how we have learned to let go of unreasonable expectations.

Long before I had a daughter with Autism, most of you know that I was already in the "business." I had completed graduate school and worked with countless families and children on the autism spectrum. Whenever I run into an old family that I haven't seen in a while and share Avery's story, they usually leave open-mouthed, astounded at the irony of it all. Believe me, I am equally astounded, and I have been dealing with this for over two years now!

Anyway, the knowledge I have about Autism and child development in general isn't always the blessing you might imagine. I can tell you that Avery is a LONG way from talking, because in order to verbally communicate, dozens of developmental foundations have to be in place first, and for Avery, we are still working very hard at those foundations that Autism has taken from her. She had them at one time, and one by one after she was about 14 months old, she lost them. She has yet to regain most of the relationship, social, and communication skills she had as an 11 month old. Sure, she has made some progress in other areas, but this is a marathon not a sprint, and if I know anything at all, I know that we will be fighting for her to come back to us for a very long time to come.

Another unknown to many about Autism is that as a brain disorder, it CAN (and does in Avery) impair MANY functions of the body and immune system. Most of the research you read now points to Autism being a systemic disorder, and I can assure you this is true for Avery. Nothing she does is "normal." From eating, to walking, to responding to any sensory stimuli, to comprehending, to awareness of herself and others... she in incredibly impaired. Even how she responds to illness, pain, and how she sleeps... it is all VERY different from a neurotypical child. She needs medication to sleep, can slam her fingers in the door and/fall flat on her face with only a whimper... she would wander off in a heartbeat if we let go of her hand, and she has no awareness of how her actions might impact another person. Autism, especially when paired with her autoimmune disorder, (and having mastocytosis made her 10 times more likely to have Autism according to new research) makes fighting illness incredibly difficult, and having seizures during her lifetime probable. The whole package can be mind boggling and completely overwhelming. I know more now about the body, immune system, mitochondria, and so on than I EVER imagined I would.

Another question posed to me all the time is whether or not I believe vaccines had anything to do with Avery developing Autism. This is such a touchy subject. I usually skirt around my answer, and say something about how I believe vaccines are safe for 99% of the population, but that for a kid like Avery, whose immune system was already compromised, that fighting the live viruses and preservatives present in a vaccine was very hard on her body and brain. She would ALWAYS run a high fever for days after a vaccine, and her body would ALWAYS be covered in hives. Not to mention that by the time she was 1, she had been on 17 rounds of antibiotics for constant ear infections and strep throat. So my answer is that I don't know. I DO know that most kids do fine with vaccines, but that for my kid, it could have been a part of her downfall. I think the jury is still out for kids like Avery who start out with a crummy immune system. I will tell you that Kaylin has yet to have the first shot, and when we do start them this fall, she will only get one at a time and only a select few. She is 100% healthy. I absolutely believe that vaccines are not a one size fits all kind of treatment. Just as some kids can't have penicillin (like Avery for instance) some kids are GOING to react to a shot... it says so when you sign the waiver. The risks are right there. Just weigh your family history and tread carefully.

So there it is, no, Avery is not talking, and yes, I think vaccines (the huge number at such a delicate developmental point in life) may contribute to Autism in some way. I also think just as some of us are genetically prone to develop diabetes, some of our kids are genetically susceptible to developing Autism... and some environmental insult, be it a vaccine, a virus, an environmental toxin or whatever can push them right over the edge... shutting down a protein necessary for brain function or whatever. But I DO NOT believe that Avery was "born" with Autism. I wish you could have known her as a baby. I have awesome video that I RARELY watch of her meeting all of her milestones and connecting to others beautifully. When she began to drift away a part of me went with her. And I can also tell you with certainty that it is NOT something you just "get over." As our children age and their peers blow by them and continue to thrive, the wound keeps re-opening, and sometimes the pain and sadness seep in again.

It does "get better." Not necessarily the "autism" but the way we cope anyway. New challenges ALWAYS present themselves in everyday life, but we move forward. We learn how to manage and remember that as parents, our love is absolutely unconditional.

Everyday I am BLOWN AWAY as I watch my 2 year old daughter develop normally. She talks in LONG sentences, can tell me about her feelings and her pretend play. She stays with me physically and mentally, she took all of one weekend to potty train, she runs and jumps and protests and manipulates. And thankfully, she evens me out from the overwhelming grief I was enduring before her presence. Sure, she is hard in her own ways, but not emotionally. It is my hope that her strong will will continue to lead her in the right direction, and one day help Avery. She too loves her sister, despite her sister's inability to reciprocate. I hope that she too will learn the magic of unconditional love and the importance of tolerance and support.

Avery is THAT different. She is also a beautiful and amazing little girl who has touched countless hearts. She is so much more than her disabilities. She is pure love.

The daily grind

I find myself counting down the days until the end of summer. I never want to wish time away, but the heat, the end of the pregnancy, the lack of structure and long days seem to be dragging on and on. I most certainly didn't pick the ideal place to live given that I prefer a cooler climate, but in many ways Texas has become home to me, even though I still miss Atlanta from time to time.

Home is no longer where I come from, but now is who I have become. The life Bryan and I have created is precious, and though in many ways this life is not what we would have chosen or expected, we cherish it nonetheless, and are trying like hell to make the most of it.

Since the time my life has been forever altered by my beautiful daughter's disease and disability, I have been working really hard to focus more on the "big picture" and not the daily struggles. I write about the big picture all the time. When I speak of gratitude, abundance, perspective, and even grace... I am able to see beyond the daily grind, passing frustrations, moments of overwhelming sadness and helplessness, and see the beauty in the life I lead. The beauty in disability. The beauty in relationships, and the joy resulting from heartache. This focus has enabled me to cope, and find meaning and purpose... but it doesn't mean I don't still lose it from time to time.

Afterall, I spent 30 year or so projecting my future and living for tomorrow... so learning to live for today, not borrow trouble, and give up trying to control the unknown is a hard habit to break.

The only thing I know for sure is that I don't know much at all. I can live and grow and learn from my experiences, and for the most part, I can choose my attitude. I can try again and again and again if I don't get things right, and I can create hope and live in peace as long as I keep my perspective in check. The struggles my daughter and I face, and will continue to face will surely be there to meet us, and I can keep going, or give up. For her sake, I will not give up. I don't have all the answers. I don't even know all the right questions to ask. I don't know how to rid my anxious mind of worry, doubt and sadness... but I will keep trying to replace it with the lessons bestowed in the "big picture."

Not all our days are good ones. In fact, it seems lately everywhere we go we get more stares and glares. Avery now outwardly appears different and disabled to all who encounter her, and that has been a little tough to swallow. But day by day I am learning not to let the small stuff... or the "what she can't do's" ruin my precious time as her mother. I suppose in many ways this is all part of acceptance. I accept that Avery has many limitations... but I also accept and love her no matter what the day has been like. Whether she has moved forward or backwards. Whether she has suffered from another unexplained fever, had puzzling lab results from bloodwork, is covered in "spots" or mastocytomas for some unknown reason or not. I can't control it. I can only work hard to maintain sanity, search for answers, and love my family with my whole heart and soul.

So as the summer days drag on, I am optimistic that within them I will share thousands of precious moments with my two daughters, before they become three. I stay so busy at times I can hardly see straight, but within the daily grind there is always time to be grateful for the positives. I spend far too much time worrying that I am not doing enough for my girls... and my mission for the next few weeks before our family expands is to try to let that go, and just continue to do the best I can and let it go at that. It's harder than it looks, but surely I can do it.

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.

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.

A little bit Crazy

Pregnancy doesn't exactly agree with me. Don't get me wrong, I KNOW this is a blessing, and that we certainly want three children... I just feel like a sick, anxiety ridden, over-reactive, not to mention fat version of my former (fairly sane and put together) self. Thank GOD this is a temporary state... I am already counting down the days till I can resume normal coping meds and the nightly glass of wine to ease my stress! I can assure you that my husband and children probably are too! The overabundance of hormones in my system have taken over. So I guess you could say, at least for the next few months, that I have gone a little bit crazy... so I apologize in advance for anything I might do or say that seems a little over the top. Again, thank GOD this is temporary. I like the normal me much better, but I remain extraordinarily grateful.

Grateful for my husband who tolerates my moods and my anxiety, grateful for my two cool kiddos... disability and all! And grateful for my extended family and amazing network of friends who "get me" and can laugh and cry and share in my life however crazy it may be. I found a quote that I love describing gratitude and it's power. It is as follows:

"Gratitude unlocks the fullness of life. It turns what we have into enough, and more. It turns denial into acceptance, chaos to order, confusion to clarity. It can turn a meal into a feast, a house into a home, a stranger into a friend. Gratitude makes sense of our past, brings peace for today, and creates a vision for tomorrow." (Melody Beattie)

Of all the attributes one can acquire, perhaps the most important when dealing with a sick child, a bad day, disability, and even death of a loved one is gratitude. Like anyone in a situation similar to mine, I have days when I see friends who seem to have it all (healthy kids, steady finances, support, attractiveness and so on)and wonder why MY life has to be so hard in comparison. My competitive nature has NOT been a benefit in the last few years, so I have worked really hard to let it go... and instead adopt an attitude of gratitude.

I am so thankful for the gifts in my life. Even the ones that may not seem like gifts at all. Maybe not in a moment where I am a little bit crazy... but for the most part, Avery has given me clarity. One more gift from my sweet little non-verbal miracle. So at the end of a particularly difficult day, or hour... I try really hard to close my eyes and step back for just a second, take a deep breath and remember to be grateful. Grateful for GRACE, JOY and soon to be HOPE in my life. This pregnancy is a means to an end... and at it's finale... we will have a third beautiful daughter who will add so much love to our growing family... and not to mention HOPE.

Celebrate

Yesterday our sweet Avery Grace turned four. This year we made a great effort to keep it simple, and celebrate Avery for all that she is and for what she CAN do... and for all the love, wisdom, joy and grace she brings to our lives. I spend quite a bit of time on this blog documenting my journey with coping and acceptance. I initially intended to be writing about the great strides Avery would surely make in overcoming the challenges of Autism and mastocytosis, but the journey never quite goes as planned, and ours has been a struggle I never imagined would be so arduous. But yesterday, even if it was just for a moment, we were able to put aside our heartache and worry, and celebrate our precious daughter... just as she is.

At four years old, Avery is still doing great on the potty. She is not 100% yet, and can't initiate that she needs to go, but as long as we put her on there every 45 minutes or so, she does an excellent job, and is even learning to pull up and down her pants! She is a wiz at her iTouch, and it has been an extraordinary vehicle in her success in communicating and showing us what she knows. Avery is pretty good at puzzles, and loves to hold hands and is gaining motor strength all the time. She can almost climb stairs without assistance and loves to climb all over the furniture in the house! Avery can use a spoon! She loves to eat and is becoming much more independent at feeding herself. Avery seems to really enjoy going to school. She has amazing teachers and therapists who enrich our lives and have opened their hearts to Avery and our family. Avery has a precious disposition. She is happy and content most all of the time, and perhaps most importantly, she brings awareness and hope to those who know and love her.

Whoever dreamed that my most influential teacher would be a sweet, disabled, little girl who has no idea of her impact? Who may never know how she gave me purpose and brought meaning to my life. There is alot that Avery cannot do... and may never be able to do... and that is hard..... very very hard... to wrap your mind around. BUT, through gratitude, love, acceptance and awareness, I can see Avery for the amazing little girl she is. I hope you can too... I hope that her life and her story brings you awareness, perspective and most of all hope.

Happy birthday to our precious angel. We love you always and forever.... and to the moon and back again.

Permanent: Coping

It may be the first time in a month that I have a completely quiet moment to myself. It is early in the morning, and the rain is softly drumming the roof, and all in my house are sleeping, except for me and the dogs.

Kaylin will likely be up any moment, and when she is awake, there is never a dull moment. She always has something to say, and amazes me daily at her ability to communicate and understand. The blessing of a first born who has a disability is perhaps having the awareness to really appreciate and value what comes naturally to most children. I take none of it for granted.

Avery and Bryan will hopefully sleep in. Avery has had a very hard time sleeping lately... a common occurrence with children on the Autism spectrum. Even though she is medicated, her neurotransmitters just don't work the way yours and mine do, resulting in crazy sleep cycles and many restless nights. Bryan took over last night and they didn't get settled until after 3 am. So I am on Kaylin duty this morning as soon as she awakes.

Our day to day life has been very routine lately, and as I am now into my second trimester, I have a little more energy and am maybe a little less sad and overwhelmed. We had a level 2 sono of the new baby as well, who so far looks healthy thank god, and who the doctor thinks is a boy. All good news.... Uh oh, Kaylin woke up... which means I may get in one sentence per hour today. :)

I'm back... but it's another day all together! Oh well... ANYWAY...

Lately my thoughts have been circulating around the idea of permanence and how it relates to our journey with Autism. Most things in life are not "permanent." The great reality of the human experience exists in the unique ability we have as individuals to change our circumstances. Sure, that is not always the case, but more often than not, "permanent" is not really something we have to deal with all that often. Even for us, though Autism is "permanent" the challenges we face related to it and it's hold on our family as a whole and our little girls' beautiful mind, are likely to be ever changing. The whole journey has evolved for me personally, into something I hoped was "mild" and only really "hard" initially, to something I now understand to be quite severe and likely, difficult (though changing) for the rest of our lives. I don't think I could have wrapped my head around that in the beginning. But over time, my understanding of how Autism effects Avery specifically, and even our family, has become something I am learning to cope with daily, if not hourly. And if there is one thing I am sure of, it is that the hard parts are no where near "over."

Every week or so, I read another story of some miraculous child who beat the odds and has become "almost indistinguishable from his or her peers" or has all but "recovered" from Autism. Frankly, I am sick of such stories. I guess they didn't have the kind of Autism Avery has... because if there was a way to treat/recover her, I promise you by now I would have found it. Surely. Not that I have completely given up hope. I still believe in the possibility of medical or even holistic breakthroughs, and I remain optimistic that one day, Avery will be able to function at a much higher level than she does now... but as we are weeks away from her 4th birthday, and she is still non-verbal and very very very disabled in every way... my initial hopes of "recovery" are long gone. It saddens me beyond anything you can ever imagine, but I fear it is our reality, and that Autism is one permanent factor in my life that I cannot change. The guilt is overwhelming. My words could never even begin to describe it.

Which brings me to my purpose. Not the purpose of this particular blog entry, but my overall purpose... at least for the moment. How can I turn something so devastating, so completely maddening and life changing into something at all positive or productive? I can do this. I can use our story and share it with people who may need to hear it. I had a great opportunity a few weeks ago to speak at a few mom's groups in the area about sensitivity to friends and family who may have a child with a disability and about what it's really like when it happens to you, or your friend, or someone in your family. It was very therapeutic to me... much like this blog is, and like my job which includes helping parents through the hardest time in their lives... I feel that providing that support and spreading my own message may just be my purpose. My life purpose.

So what else can I do? I can talk to other mom's going through diagnosis, I can unite them and more weathered mom's together in well deserved "mom's night outs" and I can spread awareness, and hope, and share sorrow and pain. Better mom's than me are out there lobbying for insurance coverage, are trying to change laws to better our disabled children, and are really attacking some of the bigger issues... but here at home with my soon to be three small children, I have to find a way to bring some sort of meaning to my situation. To create a silver lining, and to make Avery's life and existence valuable and important. I am her voice after all... and it is up to me to make sure that her message, whatever it may be, is heard.

I am trying to figure out, little at a time, how to do that. How to somehow make lemonade out of rotten lemons. I may spend a lifetime trying, but since I can't escape our permanent circumstance, I guess I have a lifetime to keep at it.

Now for the positive spin.

Autism may be "permanent" for us, and it's resulting challenges ongoing and ever changing... but also permanent are my deeply rooted feelings of devotion, love, respect, adoration, and passion for my child who may never be able to show me any of those things in return. I am forever committed to her. To help her be all that she can be, and to provide her with every opportunity I can, including a family who loves and supports her... no matter what. I am permanently committed to protect and adore her, until the day I die. And find some way to provide for her even after that. Another life purpose.

I always felt like I was made to be a mom. I never knew how hard that would become, or how much I would actually love my children, but I knew it was meant to be. I can't say the same for Autism. Our kind of Autism is devastating. But I'm trying. I will never give up. That is permanent too.

Big News

I've written a dozen blogs in my head over the last month, but have failed miserably at trying to actually sit down and document my thoughts. I am swirling with emotion at this time in my life, and frankly, have been a little down in the dumps, which doesn't make for much of an uplifting read... but it's the truth. I have gotten a fair amount of acclamation from friends and family, and even a few strangers, for my strength amidst adversity... so when I feel weaker than usual, I am admittedly a bit hesitant to be the open book that I normally am. But this is life. We all have our moments, and maybe now more than ever I NEED to post on here. If for nothing more than free therapy.

Part of my mixed emotion comes from the fact that in 6 short months, Bryan and I will welcome a new sweet baby into our home and hearts. Some of you may think we are just plain crazy, or glutton for punishment... but we actually WANT this blessing... even though the timing may be a bit sooner than we anticipated.

It's not that our life isn't hard enough at this very moment with our very disabled, precious almost 4 year old, and our spunky, free spirited, totally typical almost two year old. Trust me, it's challenging. It's more of a "big picture" wish.

Even before I had a child with special needs, I wanted a big family. But once we became aware of her disability, and accepted the fact that she will likely always live with us and need special care... I wanted even more to surround her with the unconditional love that sometimes only family can provide. Siblings who will love her no matter what, and hopefully be there for her in ways and times that I can't. It is one of my many hopes for her, and for us as a family. I also didn't want Kaylin to feel the burden all by herself... I didn't want her to one day be making decisions about Avery alone. She deserves support too.

So though I KNOW we will have several difficult, chaotic years ahead... in the big picture, I also KNOW that this is the right thing for our family. That we will love and adore this baby no matter what... just as we do our two very different, very special little girls.

As you can now see, my plate is full. I have another two years or so to panic about autism again, and don't think I will be able to take a deep breath until this baby is two and hasn't shown any sort of regression. During my pregnancy with Kaylin, I was only just beginning to learn of Avery's struggles... and I can say with certainty that it was THE hardest time in my life.... so this time around, which will more than likely be my last... I am hoping for a little less anxiety and stress.... but the jury is still out on that one.

Most of the time I am able to cope in a pretty healthy way. I am able to see our difficulties through a lens of positivity, and have become fairly adept at living in the moment. But for now, when I feel nauseated every minute of every day, and I can't sleep because Avery still wakes up almost every single night, and my hormones are out of control and I am getting fatter by the second... I am having a hard time with my perspective. I am exceptionally sad about things that I have long ago learned to "deal" with. And the worst part is... I am not enjoying any of it yet. I feel too crappy, and can't take anything to take the edge off for fear of damaging my unborn baby.

I know "this too shall pass." I get that. Thank god. But, the only thing that I am certain will pass is my perspective, my nausea, and my pregnancy... I am NOT one who actually likes to BE pregnant. The babies I LOVE... getting there, not so much. What won't pass is our journey with Autism and mastocytosis. Our constantly evolving issues, hours of therapy, and struggle with disability. It is lifelong. And at times, when I really feel like shit, that seems almost unbearable to me. Still. I guess I am NOT over it. I don't know if I ever will be.

So what now? We march onward. I suck it up, and try my hardest to focus on the happy moments. I go back and read my previous posts of gratitude. I remember my MANY blessings, and simply cope. Thankfully, I have an exceptionally supportive husband, amazing friends and an outstanding extended family. See. I feel better already. Free therapy I tell you. Writing this blog is free therapy.

2010

How we measure success depends largely on our own upbringing, our own place in various sociological races, our temperment, our personal outlook, and so on. For most of my life, I have thrived in a world of competition, stayed the course, been rewarded for hard work, years of study, and perseverance. As my Dad would say, most of my life had been pretty "charmed." He doesn't say that much anymore, but I would venture to bet that he knows that in many ways, it still is.

So, from year to year, I would look back and be proud of various accomplishments, and look forward to the year ahead with eager dreams. Always knowing without a doubt, that if I worked hard enough, surely I would reach my goals... no matter how lofty. Call it arrogance. Call it blind naivety, immaturity, whatever... but it was a nice place to be. A place where no matter how difficult the obstacle... success was sure to be found.

Though I don't live in that place anymore, I do reside in a much more real, raw, and bittersweet location. Maybe motherhood in and of itself would have paved the way, but the real vehicle for the transformation has been having a child with a debilitating disease and a significant disability. It has changed the way I live, the way I see, and the way I perceive almost everything. It has colored every aspect of my life, and every single day I am reminded of how incredibly hard, yet lovely, life is when you have a child who is challenged in almost every way.

The last few years have brought me wisdom beyond that which I ever imagined, strength I never dreamed I could have found, and love that sees beyond words, gestures, and literal meaning. It wasn't my "plan," but it has become my purpose. I have lost my competitive edge, and certainly don't sweat the small stuff. But I am happier for it, and certainly more evolved.

So now, as we start a new year fresh... I am learning to let go of the hopes of years past that fell short. The goals yet to be achieved and the dreams that fade a little each passing year. My life, my husband, my children, my family and my friends are what matter, and the lessons they bestow upon us when we are graced with their presence. Perfection is not the goal, and neither is "progress" or whatever that means. Moment to moment living...coping, realizing your blessings, and understanding your own personal purpose. That is my new dream. To never quit learning, evolving, and finding new, breathtaking moments within the struggle.

It's not that I have lost hope. Rather, I see hope in a different way. I will remain relentless in finding ways to help my child... but I won't let her progress or lack there of determine my happiness or shape my attitude. I can't. I won't survive this if I did. And it's not as though she hasn't improved in some ways. Every month I feel like we have broken through just a little bit more.... but it still burns that my child has yet to regain most of the skills she had as a 12 month old. She is almost 4 after all. But in between the difficult moments... there is peace. So I will keep my focus on that... and move on.

As we enter this brand new year, it is my prayer that it will be full of blessings. Progress will certainly come, and we will be grateful, but my happiness and contentment surely won't depend on it. So cheers to 2010. May it bring you love. May it bring you joy. May it bring you truth... and best of all, may it bring you peace.

Our 2009 Holiday Letter

Peace. It does not mean to be in a place with no noise, trouble or hard work. It means to be in the midst of all of those things, and still be calm in your heart.

I choose to think of it as another year wiser, or another year stronger rather than just another year older. Thankfully, this year, we are also another year calmer. More at peace, and more open to what life has enabled us to behold. Ours is a life that in many ways I wouldn’t wish on anyone, but it is also a life I cherish, and wouldn’t trade with the luckiest of families. Lot’s of people face illness, disability, financial woes, emotional hardships, lost dreams and difficult hours. We are learning to face our trouble with peace... and with a new perspective given to us by two very special little girls. One whose life will be harder than most, who has yet to find her sweet voice, and who fights illness and disability every day of her life with a smile on her face and a longing to hold hands and give hugs. The other whose voice adds a new beat to our melody, and whose spunky, feisty and fun personality brings us joy beyond measure.

It has been a year of mountains and valleys. A year of arduous realizations, and a year of awakening to new possibilities. We can say with confidence that Kaylin is healthy and neurotypical. She speaks in sentences and can relate to others beautifully. She can run and dance and laugh at jokes. It seems miraculous to us. We also understand now better than ever how mastocytosis and autism have impaired Avery’s brain development. But Avery will not be defined by her disability. And her presence can be felt in the hearts of many, as her story of grace and inspiration ricochet throughout our community. She is a constant source of rhapsody and joy, and has enabled many to see beyond language to find unconditional love through simple, pure human connection.

It has also been a year of gratitude. Our extended family and friends continue to astound us with their support and encouragement, and we are blessed to be able to be the parents we need to be to our children because of their benefit and guidance. Avery spends 25 hours a week in school and 15 extra hours a week in therapy... and it is because of the compassion of others that she has made progress at her own pace... and in ways we may never have been able to provide.

And finally, we are at peace. Though we may never “get over” some of the hardships we are blessed to endure, we can also see the beauty only found within the element of adversity... and we are better because of it.

We wish you all a magical holiday season and an abundant 2010. May you all find happiness within, and live in peace as you travel your journey.