Happy Birthday

Three years ago today, I was anxiously awaiting the arrival of my first born daughter. The room was set, clothes washed, toys and books waiting on shelves, and I could hardly wait to meet her. To see, hear, smell and feel her. In some ways it feels like forever ago. Life is different enough before kids, but before kids with special needs and potentially life threatening illnesses, your life before seems like you were living on another planet.

Tomorrow, our sweet and amazing girl will be three years old. I want to take this time out to celebrate her, for all that she is, and for the absolute and infinite love and joy she brings to our hearts.

Avery loves to hold hands. Several dozen times a day, she grabs our hand to take us to what she wants, or to take us to her toys to play. She also loves to snuggle... sometimes not at our favorite times (mid-night) but when you hold and rock her, she inches in close, smile on her face, hand in hand as we glide her gently off to rest. She LOVES birds. When she sees one, she lights up, and now the only stickers she likes are those with a bird or favorite TV character on them. Funny since she shows excitement by smiling and flapping. Maybe in her own way she can relate. Avery loves when Daddy gets home. When I tell her he is here, she moves as fast as she can to greet him, and grins ear to ear as he picks her up for a big squeeze. Avery also loves the carousel, the park, slides of any kind, swinging high, and climbing. She doesn't make a lot of noise, but she laughs every day... and the sound is like music to our souls. Even without words, she is easy to read, and communicates in her own way. In every way, she is special and worthy.

Life before Avery was so easy. Our worries were so superficial, our heartaches so mild... but our joys were not near as meaningful, and our celebrations nowhere near as graciously met. With every moment, she shows us how to love. How to be better... how to look past disability, and how to see perfection in imperfection, how to greet life with a new attitude, and how to throw judgement and expectation out the window. I gave my parents a frame last Christmas with a quote on it that stated " Though we teach our children all about life, our children teach us what life is all about." How true that is. She redefines my vision of a perfect family, because though our family is far from perfect, I wouldn't trade my life with anyones. So happy birthday, my precious daughter. I love you to pieces, and to the moon and back again.

Out of the Box

I am not sure I ever imagined I would have a child who couldn't talk to me. Not that she will always be non-verbal, but for now as we are a little over a week away from her third birthday, Avery has yet to develop verbal language. So much of how we connect to others is wrapped up in words. Being able to talk, is something everyone seems to be able to do, right? Wrong. I don't want to keep repeating myself here, or repackage the same message again and again, but when it comes down to it, this is how I find myself coping. How I manage to convince myself that in the big picture, my life is pretty grand.

Think about it this way. Sometimes our memories, such as those of a beloved grandmother who passed or an old friend we can't find.... are actually not "verbal" memories at all. They are images, feelings, senses etc. With Avery, since we can't connect through language, we have to dig deeper. Find a connection through a song, a touch, a picture, or an experience. I feel extraordinarily lucky that she has enabled me to look beyond words, and find meaning in the moments.

In each "evaluation" or "assessment" of how Avery functions, we hear alot about what she needs to learn. What about what WE need to learn? She is an amazing teacher, if you just look beyond what is "standard" or "normal." I know that as her mother it is my job to guide her, to show her the world and teach her how to live in it, but how amazing for me that I get just as much knowledge from her. She is here for a purpose. For those who know and love her, she is showing us how to think out of the box. To sit and be quiet as we watch her light up to one of her favorite songs, to walk side by side with her and experience her joy as she sees a bird fly by, or to realize how a simple hug can merge two souls together... even when there are NO words.

Hope

It is Sunday... arguably, my favorite day of the week as the pile of chores has been mostly attended to, and there are typically no firm commitments or appointments. Though, there are always exceptions. Coming off our week, I am even more grateful for the peace. Tomorrow we will resume therapy, blood work, collecting urine and feces for tests, but today, we can just be a family. I love it.

Both of my girls are taking naps for the moment, and I can actually try to catch up on emails, phone calls, etc. I just spent a fabulous hour doing homework on some of Avery's new medicines and treatment protocols, and feel inspired. I always feel a bit euphoric when we have a new idea of how to help her, and today is no different. I also spent some of this time on a fantastic website that documents testimonials of parents who have helped heal their children. Not all of them to the point of recovery, but healed their bodies nonetheless, and helped ease the Autism symptoms. The site is www.generationrescue.org . Again, I feel inspired.

I was speaking to a friend of mine earlier in the week who also happens to be a family counselor. She was impressed at how my outlook, mood, and overall demeanor has brightened. I was thinking about this today and why this might be. Then as I put Avery down for her nap, and blew her 4 kisses on my way out of her room, she giggled in a delighted manner, and I remembered. It's because I have decided to follow her lead, and love her absolutely unconditionally. We often throw that word around without really understanding it's depth. When I say without conditions... I really mean it. Without expectations, period.

So while it can be exhausting trying to figure out how to help her, and I will continue to fight tirelessly to her benefit, it doesn't mean I can't sit back on a lazy Sunday and simply relish in the joy she and Kaylin bring to my soul. None of us really know what lies ahead, and I am working really hard to stop projecting and start living more in the present. Knowing that it's the little things, like laughter from a few blown kisses, that make life worthwhile.

What a Week

Sorry again for my delay in posting. So much has happened over the last two weeks I don't even know where to begin. Thankfully, we have some new answers... and a new beginning on it's way. I think 3 is going to be Avery's year. Her year for healing, her year for progress, her year for hope.

After waiting over 6 months to get an appointment, we finally got Avery in to see a DAN (Defeat Autism Now) doctor who also happens to be an immunologist who specializes in Autoimmunity and allergies. We have several tests pending, and many blood, urine and stool samples on their way to yield results, but we finally have some renewed optimism. Some hope that this downward spiral CAN get better, and slow down a bit. This physician is looking to treat Avery in some new ways, and he believes we can really repair some of her brain damage and cellular deficiencies through a variety of medications and treatments. Call me nurse Jenny as I am about to be an expert on giving daily injections and taking HBOT plunges with her into an oxygen chamber 5 days a week!

We also survived Avery's first school district evaluation and parent meeting today. As expected, they are recommending a very intensive program for her that involves a variety of therapies, PT, OT, Speech and behavioral. We have some pretty tough decisions yet again to make, as we decide whether to send her the full day, or keep her half day and continue with our current battery of private, out of pocket, therapy that we really feel is benefiting her. I am hopeful the district will accomodate us with the half day idea for the short two months till summer break... but who knows. Sometimes I really wish we had a crystal ball to see what would be the best call... all we can to is dig down deep, hope and pray we are doing the best we can for our sweet and amazing daughter.

Thankfully, the army of "Avery Supporters" continues to astound me with their love and generosity. My mom has been here this week to help us get through, and you should have seen how many therapists and friends came through for us this morning for our school evaluation. They are nothing short of spectacular, and I will forever be grateful for their kind hearts and lifelong friendships. From babysitting to good thoughts/prayers, to actually being there... everybody plays a integral part in helping us get through these times.... and we are blessed. Beyond measure.

When it rains

It's a good thing that I have always enjoyed being a girl on the go. I think my kids are getting used to this lifestyle as well... since they have never really known any different. Everyday is filled with various appointments, and no two weeks are the same. Last week after a 3 hour visit to the ENT, we learned that Kaylin needed ear tubes, which we got two days later, Avery needs her tubes replaced, and her tonsils and adenoids removed, and I need a procedure on my ear to reduce pressure and hopefully bring back some hearing. sigh. Kaylee came through her surgery like a champ. Barely cried at all and we were back on the go that afternoon as we toted Avery to therapy. Avery's surgery will have to wait for reinforcements. Grammy will come help us out as putting a kiddo with Mastocytosis AND Autism under anesthesia has it's risks. They will have to pre-treat her with various steroids and antihistamines to ensure she doesn't go into anaphylactic shock. Scary. I have been putting off this surgery for her for over a year, and after talking with some of her therapists, I think it is time... and hopefully, when she can organize her respiration and swallowing patterns, we will start to see some improvement in her speech. I'm not holding my breath, but it makes sense that it could help.

Another thing weighing on my mind quite a bit this past week has had to do with Avery's treatment after she turns 3 years old. No longer sheltered in the birth to three bubble, we will now be entering the new world of "public school special education." On the DAY she turns three, she can start "school" and there she will get speech, OT, PT etc. I am pretty sure they will recommend full days after her evaluation in a couple of weeks, and I am also pretty sure I don't want to send her for the full day, everyday program yet. I know she needs intensive therapy, but she is IN intensive therapy that I have designed for her at outside clinics, home programs and so on. We'll see though. Bryan and I have to talk with several specialists, her current therapists, and tour the school before we come to any firm decision. But the idea of my non-verbal three year old (who I adore) being away from me all day everyday is a little more heartbreaking than you can imagine.

The old saying is true, "when it rains, it pours." But I am so ready for the rain to lighten up a bit! We have been in this storm for some time now, and we are all ready for some sunlight to peak through and give us a break. That being said, however, I will state that my life is absolutely fantastic, just as it is. Even with all of the struggles and heartaches, I wouldn't trade the joy we get from our girls for any of it. So, onward we march... umbrella in hand... smiles on our faces.

The journey

When you have a newborn baby, you are "broken in" to parenthood pretty quick. Gradually, they are awake more often and their needs become more complicated, but initially, when they first arrive... they are simple, pure, sleepy, hungry and cuddly. It is the beginning of a lifelong journey that twists and turns in ways you never expected, and that brings forth absolute joy, and vulnerability beyond anything ever experienced before. If you thought you knew of unconditional love before, now you are given a whole new definition. If you thought you knew fear, now you comprehend consternation.

I liken my journey into having a child with special needs to that of becoming a new parent without a clue.... though I had a clue, just not a clear and present, in my face kind of realization I have now. It started off easy... so she may just be a late talker. Her dad didn't utter word until he was 2, maybe she's just a bit delayed. After all, she was still social and funny, sweet and endearing. Then we thought maybe she stopped talking and pointing as much because she had been sick, and was mastering walking. That must be it. Then the dwindling eye contact, then the distant staring... and so on. Once we started seeking out answers, even the doctors were conjectural. Her therapists would go back and forth. She was still holding on to some skills she would only later lose. It was all so bewildering.

So after a while, some thought she may be "mildly" on the Autism spectrum. Surely she would make progress and work through these difficulties. Several specialists wouldn't even categorize her at all... until she hit 2. Second and third visits to the same specialists yielded new doubts, and gradually brought us even deeper into the diagnosis. No longer using words like "mild" or "maybe." Now in addition to Apraxia and Mastocytosis... we were hearing Autism.

I have heard some parents compare this type of journey to that of losing a child altogether... and though I wouldn't go that far, I would say it is close. So then came the panic. The utter confusion as of what to do next. Once settled in various therapies and biomedical treatments, the depression sinks in... and you are left to agonize over making the right decisions, fighting the system, warding off stares, and explaining away differences.

After some time, and I imagine that how much time differs from person to person, acceptance and gratitude begin to come into play. Do I still worry about Avery every minute of the day... absolutely. And do I still wonder how she could ever manage without me... every second. But at least now I feel like I can breathe again. Maybe next year I will relearn how to sleep.

But don't get me wrong. I am no expert in this field yet. We are still at the beginning of this journey, and we don't have a clue how the book is going to unfold. But I will tell you this... like any new parent... I am growing accustomed. I am learning how to love my sweet girls just as they are. I am gaining strength with every step, and I am preparing to live out my long life working to better the circumstances for my family and those like us.

A roller coaster can't begin to do justice to describing what the past 2 years have been like for us, but the ride is getting more bearable... and somehow, we are finding joy, abundance, and humility within the experience.

Giving Back

Several people have asked me what it is like to be a mother to a child with Autism. Within that conversation, inevitably, the comment or question always arises, "but it must be so hard because she can't give back." Avery can't yet tell me she loves me. She can't ask for me, or talk to me about what she likes or doesn't like. She can't reassure me that I am making the right choices for her, and she can't call for me in the night when she is feeling sick. Thankfully, however, this hasn't impacted the incredibly strong bond I have with my sweet daughter.

Most of you who know us well, or have read my blogs before, know that for Avery's first 15 months or so of life, she absolutely did not have Autism. We knew about the Mastocytosis, and we knew that her health was threatened, but ignorance was bliss as we did not yet know of the link between autoimmune diseases, specifically the one she has, and autism. So during that time when Avery was our only child, she was the focus of our attention, the light in our lives, the source of our happiness and fun. At that time, she could look at us, say mama and dada, laugh with us and at us, breastfeed for over a year, and share our affection. Only later did she start to drift away. That being said, the bond was already in place... and it was and is as strong as steel.

So, though it may be true that Avery can't "give back" now in the ways most are accustomed, she gives us so much more... maybe even because of her disability.

She gives us simplicity. We don't need words to communicate, she simply takes our hand, smiles, or giggles with delight.

She gives us courage. We never truly understood the power of this word until we have had to confront doctors, insurance companies, therapists and spectators.

She gives us understanding and patience. Never before Avery did we think we could "wait for answers," comprehend that some things may never happen, and be graceful in not knowing what lies ahead.

Avery gives us hope. Hope that all people may learn to love so deep. Hope that modern medicine will bring forth answers to our prayers. Hope that our children will be all that they can be, and hope that we can be the best parents we can to foster their growth and well being.

Avery gives us abundant happiness. Happiness that is not dependent on expectations. Happiness found in a look, a hug, a smile, a laugh. Happiness that is not derived from performance or demands, but that exists intrinsically in our souls and hearts.

And finally, Avery gives us love. She doesn't have to say it, but she IS love. She exudes love. She teaches us how to love.

She gives us all these things and more. How could we possibly ask for more than that.

Sisters of Special Needs Children

To you, my sisters of Special Needs Children

By Maureen K. Higgins

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores.

I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.

We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasound's. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed.
Something wasn't quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, and "the"" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and physiatry.

We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment
for our children with spinal cord defects. We have sued
municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line. We have tolerated insane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.

We have our own personal copies of Emily Perl Kingsley's "Welcome To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.

We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

Tough Calls

There is no handbook. There is no "right answer." There is no protocol. As I travel this road with a sick and developmentally disabled child, I realize more and more, that NO ONE knows what to do. February marks a year since we knew that Avery has Autism, and two years that we have known of her autoimmune disease. We are still searching for answers, hoping for miracles, longing for discoveries, and wishing for our sweet daughter to come back.... even if just for moments of each day.

In the last two weeks, we have had to make some tough calls. I have never been one for confrontation. I hate to "rock the boat." But as one friend of mine put it, "you are an autism mama now, so you have to stop being so nice." One of Avery's therapists just wasn't working out. I have known her for years, and feel so bad to have to let her go, but there was no connection to Avery, and what was for a time simply not productive, became counter productive, so I decided to make a change. We have already had a visit with the replacement, and I really feel like I made the right choice.

In addition, I had to let our babysitter who has been with us for almost 2 years go. There were multiple reasons for this one, one of which is that I just don't have enough hours in my week to get Avery all that she needs, work, be a breastfeeding mom to Kaylee, and a decent wife. I cut back my hours significantly at work, and am going to focus more on my girls for a bit. They need me right now... maybe even more than we need the paycheck!

More tough calls.

We are coming up on another milestone. Avery will be three years old on March 28th. Bittersweet. This will mark the end of her early intervention services, and the beginning of school district mania. Although she will be eligible to begin services, (PPCD or Preschool Program for Children with Disabilities) on her 3rd birthday, we will likely postpone her start date to the fall. Her current teachers, and the private therapies that we will continue are fantastic, and I am hesitant to move her mid year. We'll see though. I am scheduled to have several meetings, a tour and a big eval with Frisco School District all in the coming month. Yuk.

As for her Mastocytosis, Avery has started even more medications. She still has several dozen "spots" or mast cell tumors all over her body, and now she is also having flushing episodes several times a day. We are fearful of anaphylaxis, so we always have her EPI pen, and her doctors are at a loss. One actually told me this past week, that Avery is a medical mystery. Great. So now she is on six, yes, six different mast cell stabilizers. Poor thing is walking around like a zombie. In addition to her traditional medications, I have started her on more supplements to help boost her immune system. She is on 12 different supplements.

On a positive note, Avery is giving out hugs, kisses and the occasional "five" this week! She continues to drag us around by the hand as her attempt to communicate, and has been as happy and carefree as ever. Kaylee loves to stand all by herself with no hands! She is waving and starting to clap and point a little bit. I am delighted to see her make typical progress, but after seeing Avery have and lose all of these same skills makes me so nervous. I am trying to just enjoy it, but sometimes it's hard.

All we can hope is that we are informed enough, and that the professionals around us are informed enough to help us make the best decisions for our children. I continue to work tirelessly to be knowledgeable about the various challenges we face, and will keep doing my best to make the right "tough calls."

Crazy Life

I was listening to the Micheal Buble song, "Everything" today and was moved by the lyrics as I drove alone in my car. I rarely get a few minutes to myself, and when I do, it's usually in the car, and I love to pump the music up loud and get lost in the melody. It brings me back to a time when my life was uncomplicated and simple, but not nearly as meaningful or complete. Anyway, here are the words that sang to me as I traveled... I think you will see the connection here.

"You're a carousel, you're a wishing well,
And you light me up, when you ring my bell.
You're a mystery, you're from outer space,
You're every minute of my everyday.

And you play it coy, but it's kinda cute.
Ah, When you smile at me you know exactly what you do.
Baby don't pretend, that you don't know it's true.
Cause you can see it when I look at you.

And in this crazy life, and through these crazy times
It's you, it's you, You make me sing.
You're every line, you're every word, you're everything."

I have heard this song a hundred times I bet, and every time I hear it, I can't help but think of Avery. Of course, both of my children are my "everything" and our "times" sure are "crazy!"

Last night, after a long week of therapy, research and sleepless nights, Bryan, my girls and I got to hang out at home as a family, and roll around on the floor and play. Moments like this are what get me through the hard times. We were singing Avery's favorite songs, dancing, and acting silly... and Avery and Kaylee were both belly laughing. Avery is incredibly hard to reach, and under-reactive at most attempts to gain her attention, but when you get on her level, let her climb and twirl in circles with you, she really shines through. She is still there... she's just harder to find sometimes.

Earlier in the week I was working on putting short video clips I have saved on my MAC on You Tube. I started this project because sweet Kaylee started crawling this week and I have been videotaping her and Avery from time to time on my new FlipShare. I hadn't looked at the footage from Avery's first 18 months in a long time. I knew it would be hard to see my perfectly normal baby before her brain went haywire. But it was really okay. I think I was ready to see her again, and almost say goodbye. She was babbling, making "car" sounds, imitating "da da da," crawling, learning to walk to us, responsive to her name and to simple requests... totally, 100% interactive and on target. It blows me away that now, almost two years later, we are still trying to get back to where she can do some of those things. We aren't there yet... but we are still trying. It's a "mystery," as the song says.

2009 has started off with a bang. Not the way we had hoped, but most things aren't these days. All we can do is find solace in the peaceful, happy, family moments we get to share where the world that is judging us is locked outside our doors. Avery is our beloved, precious child, and to us, she is perfect... just as she is. I hope and pray for her health to improve, and maybe one day for her "developmental skills" to get moving, but regardless, she IS love. She IS hope. And she and Kaylee are our "Everything."

On the Mend

Well, one week later, the hives are down, and Avery is coming around again. For a few days there we were really concerned that she lost several skills... and though they are not all back yet, today at least she said a few words when pushed, and waved once. She continues to have days where she is more "off" than others, and the roller coaster ride called Autism continues to throw us for a loop. She will stay on all four mast cell stabilizers to help prevent further outbreaks.... and we continue to search for answers. We are looking into the possibility of an adult stem cell transplant, as well as other biomedical treatments both natural and pharmaceutical for her seemingly extreme case of Mastocytosis. It is all exhausting.

Personally, I feel like I have had my own regression of sorts as we move forward. When I was a naive therapist with no kids of my own, I once asked a family who I was pretty close to if they were "out of crisis mode yet?" The mom told me at the time that, with Autism, life is always taking you in and out of that mode... and boy was she right. Time will heal us, and acceptance of our lot in life will once again come to show, but when your kids are sick, money is tight and you can't sleep at night for a teething baby and a toddler with Autism whose central nervous system are all out of whack... sometimes it's hard to maintain that positive outlook. I will keep trying though. I am frustrated and angry at the lack of progress, but I am so incredibly grateful for the happy, easy, and gentle spirit in my daughters soul. She continues to be my greatest teacher, I am just so hopeful for some sort of break for her. Some answers to how to help her. An inkling of proof that she will start to get better. THIS is the ultimate lesson in patience and accepting the unknown. I just wish I could have learned it some other way.

I took some pictures this week of my sweet girls that I will attach to this post. Kaylee is 8 months old. She is babbling all the time, waving, imitating and almost crawling. Though she is a bit more feisty than her big sister was at this age, it is hard to believe that Avery was reaching all of her milestones on time at this point as well... in fact, she was already crawling by 8 months. Now she can't look up without falling down, still can't run, and has a major over all disability with motor planning, in addition to the autism and masto. Talk about brain damage. But both girls bring me and Bryan so much happiness, love and inspiration. Avery is BOUND to make some progress, but you know what... if she doesn't, if she forever is who she is right at this moment... I will still be so grateful for her and to her for all that she brings to my life.

Not our finest hour

Usually I can sit down and just write. Write from my soul, letting my feelings and emotions take flight. Tonight I sit here, tired, sad, a bit angry and empty, and I am not sure what to say. If you read back a few blog entries, you will see that it seems as though our perspective and outlook has brightened. Though the diagnosis, and lets face it, the progress, have been less than marginal, we march on. We march with hope. We march with optimism. We march with acceptance, and a hint of fear and despair. This week has been a trying one. Letting that fear and despair eek in and color our happiness a bit dimmer.

It started with masto mania. Avery had a HUGE reaction to something... I think an antibiotic she was on for yet another round of tonsillitis. She has hives head to toe, and is suffering from the inside out as her mast cells in her GI track, brain, and skin have gone haywire. From vomiting to refusing to eat, our poor toddler who can't tell us what hurts has been in agony. It's enough to make a mother go crazy. So I went into research overdrive, and stormed into the doctor with a list of pharmaceutical treatments to try to get her Mastocytosis in check. You see, when your kid has a rare disease that NO ONE in your big city is an expert in, you have to talk with doctors around the country, research your tail off, and become an expert yourself. I know her body/immune system is attacking itself. I know that, by definition, autoimmune diseases create inflammation in your brain. I know Avery's Autism is a result of this inflammation, and I am terrified that when we have an attack like this, our outlook is grim.

Thankfully, our pediatrician listens to me. Over two hundred dollars later, we now have all four prescriptions to fight the Masto. We start the fourth one tomorrow. Keep your fingers crossed for us.

On another note, today was a work day for me. Most of the time I look forward to the short escape from my own crisis, and today was no exception. I see six precious and fun kids, all right around the same age as Avery, and all but one fall somewhere on the Autism spectrum. The one who is likely not on the autism spectrum has mostly sensory needs and all six of them are making fantastic progress. It truly makes me happy and proud. I love sharing their victories and seeing their parents light up at the smallest of feats. In many ways I feel as if I was born to do this... but on the rare day like today, my heart hurts a bit and though I feel tremendous success as a therapist, I can't help but feel like a bit of a failure as a mom.

Two of my visits today were at different preschools/daycares. The mother of one child I see requested I attend her child's dance class to help with transitions, following directions etc etc.
9 darling girls, all exactly the same age as my sweet Avery, dancing about, tumbling on command, doing short obstacle courses and sitting patiently in their chairs to await instruction. Even the child I see did great. She was able to move from each activity, smile, sing along to the music and giggle with her peers. I felt like dying. Even as I write this I can't help but want to bury my head in a pillow and cry. ALL of the children I see are verbal or are becoming quite verbal. ALL of them more advanced than my child. I am happy for them. I am just sad for us. Yesterday at a little birthday gathering for a friend, Avery was clearly the outcast. Thankfully, she doesn't have a clue, but I do. I see that the kids are starting to notice her being different, and are starting to shy away from her. It is a glimpse into her future, and I hate it. Like I said... not our finest hour.

So at this moment, I REALLY have to work hard to be grateful. To remind myself to not be so selfish, to take things day by day, even moment to moment, and realize that in the big scheme of things, this is just a bad day. Avery is a gift. She is the greatest teacher I have ever had, and I am blessed by every moment she is with me. I just want more for her. Mostly, I want good health for her. Something we all take for granted.