Avery Grace

Avery Grace

Thursday, December 10, 2009

What really doesn't matter.

In the early days of "what the hell is wrong with my kid" I started to withdraw a bit from social activities where my friends kids would all be laughing, playing appropriately, acknowledging others, talking, and so on. Every time we would go, it was like a dagger to the heart, and I would usually leave a bit early feeling a little more sad and afraid than I did when I got there... so naturally, it got easier to avoid the get-togethers than to drudge through them with a fake smile and less than believable positive attitude. In some ways, time and more time have made such gatherings easier to bear, and certainly, having Kaylin to bring along makes the hard moments with Avery a little more tolerable. Some friends may have gotten sick of having to edit their conversations with me, and censor their bragging rights as parents, but more friends than I would have thought stuck in there with us, and weathered the storm.... often holding the umbrella or at least giving me a dry place to escape to every now and then. It has been one amazing lesson in relationships for me and many around me I must admit.

Which brings me to the point of this post. For a long time I felt utterly alone. Like no one could possibly understand how it felt to lose your beloved child into a neurological disorder. To see her developmental milestones drift away one by one... along with most of the early abilities she had to relate and communicate. To really share experiences with others. To be left with a puzzle that keeps getting harder and harder to solve... with no one who really "gets" what is like to live in such uncertainty and with such a seemingly severe disability. Sure, along the journey I have met a few mom's who have kids with special needs, all with varying degrees of severity, but even then, my kid always seemed the MOST impacted. The most difficult to figure out, and the one kid who couldn't seem to make progress. So even then, I felt alone.

But the truth is, I am not alone. Just because someone else hasn't walked in my shoes, does not mean that they can't find a way to relate to me. The even BIGGER truth I had to realize, is that I have to find a way to relate to them. If I am to be a true friend in return to those who have stuck by me through thick and thin, I have to figure out a way to overcome my own issues... and learn to celebrate their lives, their kids, their triumphs and their milestones.

Sure, some days it may be easier to stay home. To avoid the obvious differences between my significantly disabled child and your perfectly normal, or slightly ADHD, or vision impaired, or whatever child. But I am going to try to make it work... because you have tried so hard to make it work with us. It really doesn't matter that my kid can't do what your kid can do. She is a blessing. We adore her for all that she is. Right now. There are moments that are really hard for us, and I may need to skip a few events, but we will keep trying. Everybody will have "stuff"happen in their life that they didn't plan for. Didn't expect. Didn't ever dream they could handle. Our "stuff" just happens to be lifelong... and happening at this moment. So thank you for your patience. For your perseverance. And mostly, for your compassion. Because when it comes down to it... we are more alike than you may think. And when your storm comes, I may just be there to hold an umbrella for you.

Thursday, December 3, 2009

My Dad sent me this today:

Heaven's Very Special Child
Copyright © 1981 by Edna Massimilla

A meeting was held quite far from Earth
It was time again for another birth,
Said the Angels to the Lord above-
This special child will need much love,
Her progress may be very slow,
Accomplishment she may not show,
And she'll require extra care,
From the folks she meets down there,
She may not run or laugh or play,
Her thoughts may seem quite far away,
So many times she will be labeled,
different, helpless and disabled,
So, let's be careful where she's sent,
We want her life to be content,
Please,Lord, find the parents who,
Will do a special job for You,
They will not realize right away
The leading role they are asked to play,
But with this child sent from above,
Comes stronger faith and richer love,
And soon they'll know the privilege given,
In caring for their gift from heaven,
Their precious charge, so meek and mild,
Is heaven's very special child.


Tuesday, December 1, 2009

Why not?

Even in the worst moments of fear and desperation in our journey over the last two years, I have always been able to pinpoint the positive. To share my overwhelmingly intense feelings of love and adoration towards my family and even my circumstances. Sure, there are several times a day when my heart beats a little bit faster, and my teeth clinch at the thoughts of the unknown... but we march on. What choice do we have? When life starts spinning out of our control, many people will turn to anger, sadness, resentment, pity, fear, and depression. All feelings I have certainly dabbled in over the course of this experience. The experience of having a sick and disabled child. My firstborn, and so by definition the center of my universe for quite a while. But how can we see through these feelings, overcome them, live in hope while at the same time accepting life as it is right now, and embrace it? I wish I had the answers, and for me, this blog has been the most therapeutic part of the journey, because it affords me the opportunity to sit down for a minute and reflect, then pause before moving on. So for that opportunity it has lended, I am forever grateful.

Now that Kaylin is 19 months old, and doing all of the things neuro typical children do, it is even more blatently obvious how severely impacted Avery is in every way you can imagine. I don't resent Kaylin, and in fact, I am over the moon elated that she is so healthy and "normal." It just paints a clearer picture, and again makes me so thankful for BOTH of my lovely daughters and the lessons they bestow on me daily... if not hourly.

But as I watch Kaylin desperately try to win her sister's attention (a virtually impossible task) and give her kisses and tell her she loves her.... (despite nothing in return) I must admit I have a few moments when I let the forbidden words "why us" eek in and steal my serenity for a moment.

Why do we have to watch our daughter's suffer because of Autism and mastocytosis? Why do we have to go broke looking for new treatments, medications, and alternative approaches? Why do I have to stay up at night on the internet for hours at a time doing research on how to help her, why do we spend all our free time driving to and from therapy, special school, and doctors appointments? Why can't we just do playdates, go shopping, bake cookies and read books? Why do we have to listen to screaming and crying in the middle of the night, and not have any clue as to how to help? Why? Why? Why?

Well, why not? Why not me? What makes me and my family so much better than everyone else that we wouldn't have hardships, tearful nights, and gripping anxiety? I am as equipped as any, if not more so given my education and training. But sometimes, just sometimes, I find it hard to be grateful. But it only takes a moment. A brief second to snap me back to optimism. And even when I am not looking for it, I can see the beauty in a stolen glance, and in an excited smile when I lay in bed with Avery or pick her up from school.

So I remember. I remember that within her diseased body and damaged brain there is a beautiful, loving, sweet, happy little girl. My little girl, my first born, who I would walk through fire for. I remember that through this circumstance, I am stronger, better, more driven, have more purpose, and more joy in the simple things than I EVER would have been able to without all of this. So then I am thankful. Thankful for all of it. I am blessed to be Avery and Kaylin's mom. I have so much to be grateful for, and I learn more about the countless reasons every single day.

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

Bittersweet Trick or Treat

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

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.

Monday, October 26, 2009


When I began writing this blog, I envisioned it as more of an instrument to share successes than the journal of intimate feelings that is has evolved into being. I hoped, and maybe even believed that by this point, my sweet daughter would be making all sorts of noticeable progress, and that you all would be amazed at her triumph over her autoimmune disease and autism. But life is not a fairytale, and despite thousands of dollars, and a whole lot of therapy and effort... Avery remains in her own world most of the time, and is still very much impaired, non-verbal, and held back in many ways by her diagnosis and disability.

In fact, if you would have asked me a week ago if Avery was on the verge of any big gains, I would have smiled and politely told you how much I love my child unconditionally, and how she has enabled me to understand how to happily live without expectations, but that, no... nothing was right around the corner. She was still a long way from making any giant leaps. I love when I am wrong.

All that being said, I am very proud to announce, that Avery is using the toilet. If that doesn't seem like any big deal to you, then you don't know Avery. Because, this is HUGE news. Avery cannot use a fork. She cannot pull her pants up or down. She cannot say a single word consistently. She cannot respond to most verbal commands. She cannot run, or jump, or skip, or drink from an open cup.... but she CAN and IS using the potty. It's not 100% yet, and she can't initiate that she needs to go. But miraculously, when I put that sweet little girl on the toilet... she knows just what to do! Elated, shocked, overjoyed, and astounded don't begin to describe how I feel right now. I should make up a new word.

At first I thought it was a fluke. One of our many therapists was here and Avery walked into the bathroom and touched the potty. I checked her diaper and she was dry but I knew she had had quite a bit to drink, so I said "maybe she needs to go potty." The therapist didn't miss a beat, and said, "let's put her on there." So we did and within a minute, Avery peed! I immediately teared up and started laughing. Shock. We alarmed Avery we cheered so loud, and promptly gave her a whole book of stickers. I hadn't even attempted this before as I saw NO signs that she was anywhere near ready. Again, I love when I am wrong. That day she went 4 times, and is doing better all the time. She is starting to go on the potty at school, and even went in public three times while we were out of town this weekend. Unbelievable.

I know I say it all the time, but I am so grateful that I have Avery to help me learn not to take things for granted. Every look, every interaction no matter how seemingly small or insignificant, every skill learned, every sound... I am appreciative. And not just for the gains Avery makes. Watching Kaylin blossom is so much sweeter, and knowing how it can all be lost makes me soak up every minute.

So finally, something isn't impossible. Every single day Avery gives me at least a moment where I see a glimmer of hope. That hope looks different today that it did two years ago when I prayed that by now she would be "on track." Today that hope lives in the moment. It exists in the present, and enables me to love and adore Avery for who she is right now and the amazing things she CAN do.

My heart still aches from time to time when I project long term, but I am so delighted to be able to have clarity. To see beauty in a glance, in the slightest noise, and in the softest tinkle.

Monday, October 12, 2009

Another Piece of Her Puzzle

It's here again. That ever gratifying surge of hope and excitement that envelops me whenever I feel like I have uncovered another piece of my sweet daugther's mysterious medical puzzle. It has become my purpose. My number one priority as I am certain that I know more about Avery specific brain and body functions than any one of her many physicians.

I only know a few things for sure. I am sure that Avery's autism and mastocytosis are linked. ( I have read dozens of research studies to lead me to this conclusion.) I am sure that she suffers from excessive neuroinflammation. And I am sure that neuroinflammation has contributed to the whole immune response condition that is Autism. So, what next?

Yesterday I watched Dr. Oz on a news program describe Autism as a neuroinflammatory response. This may not seem like a big deal, but in traditional western medicine, most physicians have not yet ascribed this inflammation as a primary contributor to a child developing Autism. Most physicians have also not made it their mission in life to figure out a way to get their effected child back. Anyway, this led me to my search for natural ways to treat such inflammation. This is WHY hyperbaric oxygen therapy is HELPING Avery. It treats inflammation and improves oxygenation of the brain and other inflamed organs. So what else can we do???

Dr. Oz, and most DAN doctors will tell you to look for certain triggers that cause an inflammatory response. Well, for my daughter, her whole body is an inflammatory response. Mastocytosis, especially extreme cases like Avery, is by definition a constant reaction. So, at all times, her excess of mast cells and mast cell tumors are releasing cytokines, which in excess are neurotoxic in that they create a vicious cycle of inflammation which her body never has the chance to recover from. Inflammation can be a blessing or a blight. It is a critical part of the body’s immune response that in normal circumstances reduces injury and promotes healing. When it goes awry, however, the inflammatory response can lead to serious physical and mental problems. Mental problems like AUTISM.

Now, knowing that almost anything can cause my daughter to have a masto reaction, how can I impede or prevent the inflammatory response in several types of cells outside the central nervous system? This led me to several research studies examining how to treat brain inflammation resulting from other autoimmune disorders such as parkinsons, Alzheimer’s, diabetes, and multiple sclerosis. My research led me to several brand, spankin' new studies that indicate specific flavonoids, luteolin, quercetin and rutin, are reducing inflammation and improving cognitive function in brain inflammation!!!!! Woooo hooooo!

Following my discovery, (at midnight I might add) I immediately found out how to get such flavoniods absorbed into Avery's body, any side effects and so on. I know it seems silly, and by no means do I actually believe we can CURE Autism... but if we can help her brain, even just a little bit, so her quality of life can improve, then I am all for it. I will research until the end of time. It seems like every cell in Avery's body is impacted by Autism. Her central nervous system, her neurotransmitters, her significantly impaired motor, language, social and cognitive skills, her feeding, her sensory system, her health and so on. It is astoundingly overwhelming.

As much as I write on this blog about the unconditional love Avery has shown me, about how Autism has changed us for the better, and how regardless of her capabilities I will love and support her all of my life.... not a minute goes by that I am not aching and desperate to help her. To see that light come back in her eyes that started to dim when she was one and half. Call me crazy. Call me obsessed. Whatever you want... but I am figuring it out. Little by little, one puzzle piece at a time, I am figuring it out. God help me... but mostly, God help her.

For a link to Dr. Oz's description of Autism please go to

Thursday, October 1, 2009

She Deserves More

I decided last night to form a team in Avery's honor to walk for Autism in the Dallas/Fort Worth annual Walk for Autism Speaks. I vacillated as to whether or not to legitimately create a team, as I didn't want to seem like a charity case or bother too many people to donate money.... because if you are like us, most people are barely getting by these days. But in talking to some dear friends I decided to bite the bullet... and do so in the name of support and awareness more than fundraising. Not that Autism doesn't need all the fundraising it can get... but like I said, most of us are barely getting by these days.

My decision was swift once I really sat down and thought about it. 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. Her severity has moved from "it looks pretty mild" to "well, maybe she is more on the severe side" as she moves forward, lost more developmental skills and drifted further into her own world.

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 formed a team on the Autism Speaks website 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.


Tuesday, September 22, 2009


Throughout each day, I come up with several ideas of what to write about next in this collection of thoughts and feelings. Most of the time, the inspiration leaves me as quick as it came, and I am left still wondering what I could possibly say that would be interesting for others to read, and therapeutic for me to document. It's not that I am trying to convince myself that my words speak truth, but more that in writing them down, I find a sense of clarity and relief. Regardless, this week I am having a hard time deciding what to say, so I decided to take a moment and talk about guilt. It's not a feeling I am particularly fond of, and I actually find it quite useless, but as a mother of a child who was at one time developing normally, then took a drastic turn... it is a feeling I have unfortunately had to deal with as I search for answers, reasons, treatments, and serenity.

It sounds cliche, but if you haven't lost a child in some sense of the word, you may not be able to comprehend the level of helplessness and grief that envelops your entire being during that process. "Desperate" and "lost" doesn't even begin to describe how out of control your world feels, and part of the process is determining what you could have possibly done differently to have determined an alternate outcome. I can't tell you how many times I have said the words... "if I only knew then what I know now" or how Avery's body and environment created a "perfect storm for neurological damage"... but you can't go back. So why bother torturing yourself with the impossible. BUT she WAS normal... and now she's not and will never be... so guilt was an inevitable evil that I had to overcome to get to a place of peace. A place where I am happy to report that I am getting closer to everyday.

Maybe I have written in this blog too much about the need to stop projecting and stop dwelling on the past and to just live for today. To relish each blissful moment you have with your loved ones and to take it all as it comes. But I have probably written about it so much because I need to hear it. I need to live it. I need to share it so you can help me. I don't know a single mother on this earth who doesn't feel a sense of guilt from time to time. It is natural to want the best for our children, and we are all flawed and imperfect, so we all fall short from time to time. But it doesn't mean we can't learn from it, be aware of the feeling and try to do better.

On Sunday evening I was fortunate to be surrounded by an amazing group of women. I invited almost everyone I know who has a child with special needs to come to my home and let loose for a bit. There was wine, laughter, sharing of resources, a few tears and mostly a well deserved break from the grind. Between various therapies, treatments, doctors visits and so on... most of us don't have time to come together, free from judgement and critique to support and love each other. I am glad we made time though. And I am delighted to have gotten to know some other mom's in my boat a little better. Collectively, I think we all need to give ourselves a break, even if just for a few moments. A break from stress, a break from sadness, a break from anxiety, and a break from guilt.

It's really ironic because though I wouldn't wish Autism, mastocytosis, or for that matter any delay or disability on anyone's child, I also am learning to really value and appreciate the lessons, relationships, and eminence that having such an experience has enabled me to procure. I am led to continue to put faith in the conviction that Avery's life, just as it is, is changing me, and those around me, for the better. It astounds me that such a little, unknowing, unperceiving little person can have such an impact. How fortuitous for me that I get to be her mother, and I get to see life, in all it's glory, as I am living it.

Saturday, September 12, 2009

Avery's Medicine Madness.

One constant in my journey of having a special needs child for the last three years has been a fierce and eager desire for answers. I have always believed and stood by the assumption that knowledge is power, and that the more truth you discover, the more you are prepared for the inevitable curve balls life throws at you. Well... that may or may not always be true, and sometimes the more I know, the more confused I become.

I don't claim to be an expert, but I do acknowledge that it is likely I know more about how my daughters brain and body works than most of her many doctors do. I have made it my business to know. I can tell you ALL about mast cells, methylation, neurotoxins, central nervous system inflammation, thrombophilia, apraxia, sensory profiling, neurotransmitters, oxidative stress and the list goes on. I can also tell you what pharmaceutical medications help with each of these conditions, and which natural supplements, amino acids and enzymes and various therapies can lessen her suffering. I have heard one mom say she got her PhD at Google University, and I can tell you I spend about 10 or more hours a week trying to figure out what else we can do or try to bring Avery back. It is exhausting but worth every minute and every penny we spend on a new approach. You can't put a value on hope. And each time we start something new I feel a little rush of excitement thinking maybe just maybe this will help her a little bit.

Not that most of you are interested, but for those who are I will give you a run down of the various medications and supplements Avery takes on a daily basis. Everyday she gets the following: Juice Plus fruit and veggie gummies, ThreeLac (probiotic), cod liver oil gummies, olive leaf extract, A drop of detox, vitamin D, vitamin K, TMG, an injection of M B 12, Low Dose Naltrexone (LDN), a transdermal glutathione, acetyl L carnitine, L carnosine, CoQ10, turmeric, quercetin, folinic acid, ketoconozole, l methionine, singulair, zantac, zyrtec, clonidine, namenda, and good old vitamin c. phew. Obviously, we are monitored by several doctors with each of these things, and each one was introduced slowly and one at a time to regulate any adverse effects. Poor kid. But she takes it ALL like a champ. I really don't know what she would do with a regular drink since most of the time we hide these things in juice or lemonade. I am hopeful that as she gets older, and her body heals, we will be able to back off of many of these things.

My newest ambition is to get Avery in to see a Rheumatologist. Our oncologist recommended we see one about a year ago to monitor her Mastocytosis, in addition to her dermatologist and her immunologist. Rheumatologists specialize in autoimmune diseases which can impair bone and joint health. Given Avery's medical history I don't think it could hurt, and again, maybe just maybe they can help her. If all else fails locally, I will try to get up to Boston to see the #1 mast cell expert in the US. Surely he can help us. We have been in contact with him via email for research purposes as he and several of his colleagues are the physicians who discovered the link between mastocytosis and Autism. I'll say it again, you just can't put a price tag on hope.

I am also VERY proud to report that Avery is now the very lucky recipient of her own hyperbaric oxygen chamber. Thanks to the help of very loving, doting, and amazing grandparents on either side of the family, Bryan and I were able to negotiate the purchase of a used Vitaeris 320 HBOT system. We have continued to see benefits as have her teachers and therapists, so we really couldn't be happier to have this in place for her. We don't expect miracles, but this has been a very positive intervention and she happens to LOVE her time in the "bubble." I'll keep you all posted on her progress!

As you can probably guess from previous posts, and even from reading the above... it is easy to get overwhelmingly wrapped up in helping your child get better. At times it can really be all consuming. But at the end of the day.... when school, therapy, and medication administering is over... we really can relax and enjoy being a family. To us, our family is totally normal. This is how it is and we are doing just fine on the journey. Sometimes I wish we could live in our own little world where no one "evaluates" Avery, judges or tests her. Where no one compares her or defines her by her disabilities or what she cannot do. Obviously, I want her to be all she can be, but I think I have also made it abundantly clear that I love and adore her for all that she is right this minute. She makes me and Bryan VERY proud, and full of hope, love, and not to mention plenty of grace and joy.

Monday, August 31, 2009

It couldn't have happened to a better person.

Most of you who are regular readers, or who know us well, know that when Avery was 16 months old things were just beginning to go awry. She was still holding on to some developmental skills, but slowly we were beginning to realize that she was not moving in the direction she should, and that she was not going to BE the child we thought she was. Who knew how the child she HAS become and is becoming would be so instrumental in our own personal growth, healthy perspective and understanding of unconditional love.

Same old story... only NOW we get to experience parenthood from a whole new perspective. Like those of you who are blessed to have one boy and one girl, and to experience the vast innate differences each gender sets forth, we too are blessed to have one sweet, yet neurologically impaired child, and one sorta sweet, feisty, albeit typically developing toddler. We aren't over the hump of worry yet... I think until Kaylin is 2 and half and hasn't shown any sort of regression I will continue to have a lump in my throat... but for now (fingers crossed, knock on wood) she is doing just fine.

But what most of you won't understand is that even if she wasn't, I would still consider myself doubly blessed. You see, the gift of time, love, heartache, and simple joy has enabled me to really "get" what is important. YES... it is incredibly important to me that my children function at their best, BUT, if Kaylin's best were similar to Avery's best, I know that in time, that would be okay too. Most important are the tender moments we share. The simple connections we make and the love we can express in whatever way possible. Avery SHOWS me she loves me in several ways, while Kaylin can just happen to tell me so.

Now I am finally able to see what many of my friends experienced with their first children... which involves the joy of spontaneous language, not having to "teach" a baby to use a spoon and fork... (they just pick it up), kids who understand what you are saying, and who can follow directions. I remember hearing friends talk about the funny things their kids said and feeling my eyes well up with tears... but now Kaylin says funny things and I realize the vast importance of celebrating what each of our kids CAN do. It's all about how you look at it.

Regardless, one thing I was thinking about today is how when Avery was first diagnosed with Autism and Mastocytosis, SEVERAL people made comments about how it couldn't have happened to a better mom. At the time, I would politely smile and socially I understood... but I still wanted to kick them in the shin. (sorry if you are someone who once said this to me!) Afterall... I was an autism "expert" (bullshit unless you have a child with Autism, but before I had one I thought I knew it all), and I had the "training" (again, bullshit) to handle this. I was so wrapped up in the sadness and desperation of it all that I was way to raw and bitter to see that maybe, just maybe these well meaning bastards knew what they were talking about. Now, almost two years later, I am beginning to understand. Avery may be lucky to have me as her mom because I will love, research, fight, sweat, bleed and cry for her in anyway I can.... but I am the really lucky one.

Like I said before.... we "get" the gift of having two very different, yet very challenging and even more rewarding kids. Our challenges may be different from yours, and seemingly simple things may be mountains to us... but we get to travel this road while being inspired by one very special, very disabled little girl. We get to reveal her unique gifts and unknown potential, and we can do so with smiles on our faces. Sure, sometimes I still have moments of "WHY AVERY??!!" but those moments are less and less, and while I know life may not be as "easy" for us, I can sit back and relish in the fact that my adorable daughter has had an impact beyond measure... not only on my heart, but on many. I have no doubt that her impact will continue to ricochet as her precious life continues.

Monday, August 24, 2009

Another new start

Today was the first day that the Frisco Early Childhood School opened it's doors to serve our community of young children with special needs. Avery was part of this momentous first day, and we are elated that she has the same wonderful teacher that she started with last year, and is in a very small class of 4 (she is the only girl) with her special ed teacher and 2 assistant teachers. As part of her day, she will get speech therapy, occupational therapy, physical therapy, music therapy and behavior therapy. Her first day report was great, and I am hopeful and excited for a terrific year. The brand new school is really state of the art, with excellent playgrounds and motor labs, and we feel very fortunate that Avery will be a part of such an important program within our school district. The hardest part of the day was after dropoff when Kaylin yelled "Avery Avery Avery" the whole, lonesome, ride home... wondering where her beloved sister was. She will adjust along with the rest of us, but it sure was sweet to know that she missed her.

We had a very fun filled summer and Avery is finally on an upward trend with her progress. Her teacher noted some significant gains and we have every reason to believe that she will continue to make strides in the right direction... but given the fickle nature of Autism, we can be assured that there will always be a few bumps in the road and unexpected regressions. Regardless, we are extraordinarily proud of her and her daily fight to feel good and connect with the world around her. Almost every moment of every day Avery teaches me something new and spectacular, and I remain forever grateful for the amazing impact my little, sweet, loving and very disabled girl has on my heart and soul.

Thursday, August 13, 2009

Embracing the chaos

"Welcome to the club that nobody really wants to belong to." Those were some of the first replies back I got when I joined a few online support groups for families impacted by Autism, and then later, when I joined groups online connecting those of us impacted by systemic mastocytosis. I remember laughing it off a bit, and trying to roll with the punches... but in those first few months when you KNOW something is WRONG with your baby, your first baby, and thereby, the love of your life.... rolling out of bed was hard enough, and I could barely stomach rolling with the punches.

Realizing I was part of this dreaded club... the "crazed mother of a sick and disabled child club" initially made me want to vomit. And even though I knew better, I still went through the same grief pattern as everyone else, including denial, bargaining, anger, sadness and so on. I have written before about what "acceptance" really means to me, and how that applies to our circumstances as they are today, but one thing I don't think people truly "Get" is that within this roller coaster ride, the grief keeps coming as the depth of your child's disability continues to reveal itself over time. For example, Even though it has almost been two years since I realized Avery diagnosis, I never imagined that today she would still be unable to master skills she easily performed as a 9 to 12 month old. I never dreamed she would still be non-verbal, and no where near being able to be toilet trained, and unable to jump, coordinate stairs and even curbs with ease and so on. So even though I "knew then" there were still so many unknowns as there still are today.

One of these "downer" realizations occured to me last week when I was able to see that she really can't hack it in a typical preschool anymore... even with a full time shadow. Well, that's not fair, she can hack it, but she is turning more inward as the kids become more different from her. So, again, I was pretty overwhelmed with sadness because my sweet baby girl can't go to the preschool I wanted her at.... the one I picked out long before she was even born as I was working as a developmental therapist in the field. It was just one more blow. But don't get me wrong... I know that in the big picture that this is just one little bump in the road, but trust me, I agonize about the big things too. The realization that we will likely have to help Avery for our whole lives. I won't even go into the stress I feel when I consider her life without me and Bryan. Another big one is when I ponder that, given the nature and complexity of Autism, Avery may never know empathy, or compassion, or how her sweet disposition and even how her disablity itself has forever changed me for the better. I want so badly for her to know and understand the immense and forever love that Bryan and I have for her. So we will just keep trying to show her.

My point is... I thought by now this would be easier. That we would have the hang of having a child with very special needs. Unfortunately, it doesn't seem like we ever will. But I will tell you this, we are better than we were. We are becoming experts in treatment options, latest research, medical breakthroughs and begging God for some relief. We can be open and honest about Avery's deficits and about her angelic presence in our hearts and souls. We can share our story, and listen to others as they walk their own journey. And we can love her. We can love her with every ounce of our beings and know that within that love, she will feel whole.

Tuesday, August 4, 2009

Fingers Crossed

Most of the time I am able to add to this website when Kaylin is sleeping in the afternoons, or when Avery is at school, or when the kids and Bryan have long been snoozing, but lately, we haven't had a whole lot of down time. Avery is in school less for the summer, and when Kaylin naps, Avery and I have been able to share some quality time together. Additionally, we have begun a new treatment for Avery that takes up about 2 more hours a day... on top of ABA, RDI, Speech, PT, Neurofeedback, biomedical supplements and medications. I have been hesitant to even write about it, but now that we are 14 sessions in... I want to share with you some of the "why's" and "what's."

At the urging of our immunologist, and following countless hours of research, we rented a Mild Hyperbaric Oxygen Chamber for the month. Shortened as HBOT, we decided to try it given the latest double blind studies published earlier this year regarding it's effectiveness in treating some of the symptoms of autoimmune diseases and Autism. Here is the idea: (specific to Avery). When your body has an autoimmune disease, one of the unpleasant side effects of this is brain inflammation. For Avery, her body produces too many mast cells, cells responsible for producing histamine in allergic reactions, hives, and inflammation in your organs, namely, the skin, GI system, bone marrow and brain. Inflammation of the brain results in a lack of oxygen reaching various parts of the brain, impacting connectivity and all functions of the brain from physical, emotional, language, immunity ect. What HBOT does is put the body in a position (through pressure similar to being 12 feet underwater) to which it can soak up the oxygen being pumped into the chamber, thereby improving blood-flow and cellular function. HBOT is often used in hospital settings following surgical procedures and injuries to speed healing and reduce inflammation. Lately, it has been used for many children with Autism, yielding promising results... even from government funded studies.

So, Avery has done 14 "dives" so far, mostly with me, a few times with Bryan and we are already seeing some really fantastic changes. Initially, she was a little more "stimmy." She was walking WAY up on her tip-toes and mouthing everything in sight. Right away she was making more noise. Her eye contact is improved, and for the first time in her short life, she is able to run. To really run. Her motor skills have been so shaky, and her apraxia so severe, I was beginning to question whether she would ever have the balance and coordination ready to master this skill. I attribute this jump in progress to HBOT. Additionally, Avery's receptive skills are noticeable improved, and today she said FIVE, yes, count em, FIVE words! Also today, I asked her to "get Diego" and she brought me not one, but TWO diego dolls that were on the other side of the room. For those of you who know Avery... you know this is HUGE for her.

So, as you can see I am really pumped up about this. I wasn't born yesterday, and I am not expecting miracles, but already I would say this treatment has been worth every penny. Everyday I read more testimonials, and today I was reading scientific animal studies showing HBOT reducing mast cells in mice and rabbits. If we continue to see the rate of progress we have seen so far we will do whatever we have to to to actually purchase one of these machines. I don't care if we have to take a second mortgage out on our home. This really could be THE thing that helps Avery be all she can be. I am so elated to be with her on this journey, and to witness with patience and perseverance her coming back to us.... little at a time.

Tuesday, July 21, 2009

Defining Moments

I have been thinking a lot about the moments in my life that have really shaped me as a person. Moments and events surrounding them that have enabled me to become, more or less, who I am today. Some of these moments involved revelations, some extreme sadness or loss, some were brilliant and breathtaking, others less memorable but equally astounding in their impact. There are big ones... wedding, child-birth, graduations, deaths, first days, new jobs etc., and smaller ones... all of them incredibly important in building my character, my humor, my stamina, my heart, my strength and my soul.

Some moments come quick and hard... others build up to an "ah ha" moment, or a moment when you finally "get" it. Whatever "it" is. Learning to appreciate these moments, however devastating or exhilarating they may seem at the time they occur... is a work in progress for me. So, reflecting on these moments is a great way for me to build self-awareness and better perspective.

One particular moment I will share with you I remember vividly... as if it was yesterday. It was actually almost two years ago. Avery was coming up 18 months. Eighteen months is a significant age around here, as she had started her developmental regression and I was in a panic. Knowing what I know... I was well aware of what was happening, but when it happens to you, I can't even begin to describe how heartbreaking it is. Anyway, we had taken her in to a new pediatrician who was intrigued by her mastocytosis, (the very rare autoimmune disease she was diagnosed with as an infant.) She sent us to a lab for blood-work to gather more information. At the time, I wasn't all that concerned, just following orders.

To make a pretty long story short, her blood-work came back with some alarming results that indicated Avery's Mastocytosis was likely systemic, and has probably infiltrated her bone marrow. I had read about this as a possibility, but learning that your beloved child may have mast cell leukemia was a very big "ah ha" moment for me. At that very moment, and for the hours, days, and weeks that followed... I virtually "forgot" about my autism panic. I remember the moment I bargained with God and said "I don't care if she EVER talks, just PLEASE keep her with us. Please help her to be okay." I was rocking Avery at night... I was crying, and I said it out loud over and over and over again. I begged. I meant it. I really did.

So, as most of you who know us well know, she did not have mast cell leukemia. She does have systemic mastocytosis, and will always have major health issues including various cancer possibilities, but for right now, she is doing okay.

That moment in the dark rocking Avery I made a decision. I decided that her life and presence was way more important than meeting milestones. Neurological disorder or not, I wanted her here. I wanted to fight with her, love her, and mostly, be with her as much as possible. I still feel that way. And when I get anxious to hear her words again... I am able to remind myself of that moment. The moment I decided that Autism was the better option. Even though I know it wasn't a choice.

Time marched on and in many aspects, we have come a long way. We have had a few more "defining moments" in our journey, and we all work tirelessly to help Avery heal. But what a gift that moment, as awful and unbelievable as it seemed at the time, has been with regard to our outlook and attitude. The hardest moment of my life has been the best lesson of all.

Wednesday, July 15, 2009


I have had several people ask me lately how Avery is doing. I never quite know how to answer this question. In some ways, she is doing great. For the most part, she is a happy, silly, pretty even tempered child who loves to snuggle, play with her characters, swing, hear her favorite songs, etc. But I am pretty sure this is not what they are asking for.

Most people wonder if she is learning to talk yet. Well, not really. She has had and lost words throughout her toddlerhood, and currently has none. One year ago she was EXCELLENT at puzzles, now she isn't so into them anymore. She has gained and lost pointing skills more times than I can count, and though she understands some language, for the most part, we have to guide her by the hand to help her comply.

HOWEVER... in any given moment in this journey thus far, I can always identify several "strengths" within her. Collectively, looking back, this must have been a stretch at times, but always... I am able to find her hidden talents. Her special gifts. Her simple, yet wonderful positives. Right now, Avery is responding to her name quite a bit. She is pointing at lots of pictures in books, and babbling to us and back to the TV when it asks her "questions." Such as in Dora, at the end of the show it always asks "What was your favorite part?" Avery always answers... we just have no idea what she is saying. Avery can play several games on my iPhone. She has been able to show us yet again that she knows several things... including colors, shapes, numbers and letters. Amazing how technology is allowing us a glimpse at her potential. That silly iPhone is hands down the best investment ever. Bryan and I both have one now, and we are considering getting Avery her own iTouch for Christmas because there are actually several apps that we can download that may help her communicate with us through pictures, choices and so on. Very cool.

So, in the big picture, if you test Avery, or spend just a few minutes with her at a time, you may think she is really severe. Pretty isolated and in her own world. But we know better. Just as she points at every single detail in a magazine or book for us to label, if you get down to it and want to get specific, Avery's little "details" make up for one very special, unique, happy and lovely little girl. So as we continue our journey and she gains and loses skills, comes and goes as far as her connection to people... one thing remains steady...our pure and abundant love for her and all that she is, and even for all that she isn't. So stop and slow down a minute... pay attention to the details. Sometimes brilliance lies within them.

Saturday, July 11, 2009

Catching Up

There is so much to write about that I don't know where to begin. Seriously, I could have posted everyday over the past few weeks and I still wouldn't be able to share everything that I want you all to know. If only I had more time. I think any mom out there can relate to not having enough time. When I finally DO have time, after kids are in bed, pumping is over, face and teeth are clean, it's usually somewhere around the neighborhood of 10pm... and for a gal who only gets a few full nights of sleep a month, getting in to the sac is just about the only thing on my mind. But I digress.

We have just returned home from a whirlwind trip to Atlanta to visit my loving and supportive family. I love the escape from our everyday reality. Avery and Kaylin get to be spoiled rotten by Grammy, Granddad, Aunt Jenna and Uncle David, and Bryan and I get refuge for at least a few hours to go and just be a couple. For a few days anyway, I am able to let go of my anxiety and just relish in the memories I adore making with my kids. We were able to swim, see fireworks, play in a bounce house, go to a park on the river and see lots of ducks, eat great meals at my parent's country club and at their house... and just relax. Bryan and I even went to the movies and watched two more on pay per view.... a record for us since we have had kids! It was fantastic. All of it. Even the the travel part, which wasn't without glitches, was fine. Hard, but manageable.

Luckily, we were only home a day and we got to spend some quality time with more family. My brother Stuart, his wife Darsi and their kids Sydney and Maddox stopped by on their way back from a family vacation in Austin. All four of these individuals are so incredibly special. Bryan and I can't get over how they are able, all of them, to connect to our kids. Especially Avery. Avery is HARD to connect too, yet, somehow, without too much effort, she really loves the four of them. It is evident in her approach to them, how she wants to just "be" around them. In the smile on her face, and in her attempts to "play" with them, or at least near them. It really warms my heart. It is magical for me to see.

Finally, on Friday, I had Kaylin evaluated by some buddies of mine who are still working full time in Early Intervention. Since she broke her arm and was casted for several weeks, I wanted to make sure her wrist was functioning properly, but I also wanted to make sure my "mommy eyes" weren't missing any red flags in her development. By the time Avery was her age, she had started her massive regression... so needless to say I have been a complete wreck about this lately. Thankfully, Kaylin sailed through her assessment, and is actually above age level in every area they tested. We even counted and she was able to say 40 or so words. So, for the moment, I can breath a sigh of relief. I won't completely relax until she is about 2... but for now, I can finally enjoy the pleasures of watching your child do what they are SUPPOSED to do. It's unbelievable, and sometimes, slightly bittersweet. But I am thrilled.

So, at last, I can finish up this post for the day. It has taken 5 different times of me sitting down to get to it, but I can always write more later. I always have more to say. But for the time being, I want to just say thank you. Thanks to all of you who care to read this from time to time. Our journey isn't all that unique, but I hope it provides for some of you some sort of inspiration or perspective. Some sort of glimpse into our souls that hopefully, will move towards more peace, tolerance and acceptance. Life isn't at all what I thought it would be. It's better. In every way, it's better.

Tuesday, June 30, 2009


Okay, so I decided it would be a good idea to post again in case some of you were worried I may have jumped off my roof yesterday or something. Obviously, it was a bad day. A REALLY bad few hours... pretty tear filled and over-anxious, but as it always does, and did today, the sun came up again and we were able to start fresh. In the big picture, days like yesterday are pretty few and far between, and it's not really Avery that changes all that much, but it is how I perceive my circumstances, and how I am able to cope with the MANY challenges having a child with several health problems, including Autism.

Sometimes it truly does feel like my world is caving in. Like I can't get a grip. I think about life BA... (before Avery) and I am instantly snapped back to how much I adore her. How she lights up my whole life and brings me compassion beyond measure. It is manic how in a few moments I can move from being totally overwhelmed to focused and driven. But I am doing the very best I can, even though many days I feel like my children and husband deserve better.

On a positive note, Avery continues to make some (albeit very slow) progress. She is really much more aware of her surroundings. She is pointing out pictures in books and magazines all the time. She is responding to her name and to several simple commands or requests. She is smiling AT us, she is taking actual bites of food instead of stuffing or me having to cut every single piece up, she is making a few sounds, and she is climbing better and ALMOST running. All steps in the right direction. Looking back on the past two years, it seems with every step forward we have had two or three steps back that quickly followed. Hopefully, the progress she is making now will really stick. I remain hopeful. I am staying focused on today, trying to push out the anxiety and worry. It's a battle. Hour by hour, we are surviving this fight. We are moving on, and doing so with very precious cargo. Keep your fingers crossed that our perspective stays in check. Because our lives are truly enriched by those that need our help the most.

Monday, June 29, 2009

A Moment

I need a moment. Right now. A moment to curse, scream, hit a wall (which I actually did and think I hurt my hand) and just freak out for a while. I DO NOT have the patience, tolerance, willpower of whatever it is I need sometimes to get through hours like this gracefully. I just don't. It's not pretty. I keep praying for it. Praying for strength... but I feel like I am losing my mind sometimes. I really do. Just this minute I am coming off of holding my screaming, flailing, flapping, sweating, hysterically crying, not to mention exhausted 3 year old for two full hours. Two miserable, out of control hours. She is finally sleeping. Maybe she wore herself out from crying all day and most of the night last night. Or maybe the medication I gave her to calm down finally kicked in. Whatever it is, she is out. Finally. I don't care if she sleeps all afternoon. But with my luck, she will be up again in 15 minutes.

Sometimes, it's rare, but sometimes, I really think I can't do this. I wish I could have put her in her crib and walked away... but now that she can climb out, that's not an option either. And it's really not her fault. She doesn't have the skills to know how to regulate her emotions, her body, or her reactions. She can't tell me what is wrong. She CAN'T calm herself down. So I have to. I have to calm us both down. I just get so frustrated. I have to hold her tight, pin down her arms and legs, try to keep her still, while she literally SCREAMS in my ears. Almost unbearable.

Nobody should have to see their child in agony hour after hour. Nobody should have to guess at what is wrong with their sick child who can't tell me what's wrong. Nobody.

I don't have it in me to keep my sanity on days like today.

So I apologize for not answering the phone. For not returning email. For being selfish. I just don't have anything left in me after the last few days. Nothing except for the love, attention and care I have to give to my girls. Nothing.

Saturday, June 13, 2009


There is some difference of opinion in the Autism community when talking about "acceptance." Some parents may say they will never "accept" their child's Autism diagnosis, and others choose acceptance pretty early on and do little to navigate through the maze of biomedical opportunities and various therapeutic treatment options. I fall somewhere in the middle of this dichotomy, and am choosing to "accept" some of the "truths" of Avery's condition, while at the same time working as hard as I can to help heal her, and give her brain and body the best shot possible to help her be all that she can be.

Acceptance is a loaded word, because in no way am I totally "okay" with Avery's struggle, but I am beginning to recognize that through her circumstance we are finding hidden gifts that are unfolding qualities in our soul we never knew existed. The day by day, and let's face it, hour by hour ordeal of having a child with special and medical needs is cultivating virtues and talents within me that never could have come to be without this experience, and so I can certainly accept that and can be grateful. Grateful for the lessons in patience, TRUE unconditional love, tolerance, endurance, compassion and serenity.

Early on in this crisis, I didn't recognize that the crisis itself was actually a threshold for something much bigger in my life. It has been the greatest lesson in spiritual growth I have ever witnessed, less well experienced first hand. The crisis was in itself a crossroad. It marked the end of the world as I knew it, and through time, has helped me let go of fear, false concepts, misconstrued ideas and false identities. Gradually, I am learning to stop projecting so much, and start living for today. To really BE in the present. I don't want to waste my time and energy on the "what ifs" and instead, am trying to use that energy in loving my kids and husband. It doesn't mean I can't grieve, in fact, it means the opposite. It means that in feeling life deeply, I can really feel the sadness, but then in turn, I can also totally bask in the joy of what is working for me right now.

If I am going to survive this, and come out a stronger more true and complete individual, then I have to let go of the "why me" breakdown, and be in control of my own thoughts, intentions and actions. So I choose to accept the challenge. But rest assured I will do so with a ferocious desire to continue to heal my sweet daughter at the same time. She deserves that.

Thursday, May 28, 2009

For Good.

Many of you know of my love of lyrics. Perhaps my greatest, albeit, most useless talents is the thousands of song lyrics I know and can sing (badly) by memory. I was tuned into my ipod today in my car and once again a song randomly played that seemed to be singing to my heart. It was from the "Wicked" soundtrack, titled For Good. Below you will see the words I am referring to, and if you look to the right you can find it on my track list under "music."

"I'm limited
Just look at me - I'm limited
And just look at you
You can do all I couldn't do,
So now it's up to you
For both of us - now it's up to you...

I've heard it said
That people come into our lives for a reason
Bringing something we must learn
And we are led
To those who help us most to grow
If we let them
And we help them in return
Well, I don't know if I believe that's true
But I know I'm who I am today
Because I knew you

Like a comet pulled from orbit
As it passes a sun
Like a stream that meets a boulder
Halfway through the wood
Who can say if I've been changed for the better?
But because I knew you
I have been changed for good."

Avery, and specifically, Avery's challenges have changed me "for good." Sometimes I think about what our life would be like if she didn't have Mastocytosis. If she didn't have Autism. If she could run, talk, and relate to others. If she was just a typical three year old attending preschool and play dates. I wonder if I would appreciate the small feats, if I would understand how amazing a look, a hug, and a kiss are. If I would still be comparing, if I would still be wrapped up in insignificant worries. In every way, and every single day, autism has changed us. And I dare to say it has changed us for the better.

Before Avery, I thought I was wise. After all, I had worked with dozens of kids with Autism. I thought I understood. I thought in some way, I could relate to those families because of my vested interest in helping their children. In hearing their stories. And though I am sure on many levels I was valuable to their lives, I know now, how truly remarkable it is to see your child master a skill. How lucky for me that those precious families helped pave the way to my better understanding. The understanding of how you ache for good news, for positive outlooks and for someone to give you hope. How sad, how truly and painstakingly sad it is to lose your perfectly healthy child into a devastating neurological disorder. How heartbreaking it is to work at something day in and day out, and see no change. There was NO way for me to truly grasp these lessons until they happened to me. Now I get it. And hopefully, through your connection to me and even in reading this blog, you will start to get it too. Autism is changing us all "for good."