Avery Grace

Avery Grace

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."


I spend quite a bit of time wishing. Call it hope, call it prayer, call it projecting, call it dreaming... whatever it is, it helps me cope. I can't tell you how many times I shut my eyes a day and make a quick wish. Usually, I am wishing for Avery to make progress, for Kaylin to stay neuro-typical, for Bryan and I to retain the endurance to survive all of this.

Sometimes I even try to visualize what it might be like if and when Avery starts getting better. I try to hear what it will sound like when she calls me mama. It's hard to hear sometimes over Kaylin's voice, but trust me, I'll keep listening.

But the theme remains the same. In this world that has given me grace and perspective, I continue to keep it simple and remind myself of my MANY blessings. Being grateful when your life is going as planned is one thing, but I find it even more necessary now that things are out of control. If I start to get overwhelmed (which I often do) I take a deep breath, make a wish, and remind myself of the silver lining. Of the complete and utter joy I find in the sparkle of Avery's eyes or in the delicious sound of her laughter.

Avery IS getting better in many small and significant ways. She is much more aware of her surroundings. She is walking with us, and reaching out to make sure we hold her hand. She is actually GAZING at us with a smile on her face for longer and longer periods of time. She even pointed at something the other day and imitated some simple play actions again. It's been a long time since we have seen her do that. She seems to have been bored with puzzles lately and her new school hasn't even seen her do one, but at home she got them out again, and did several all on her own. Another thing we thought she had lost. So maybe my wishes are being heard. I have to keep hoping.

Wishes and dreams may be childhood fairy tales, and they certainly don't always come true, but they have a purpose in my life. When my faith is running low, I can escape for just a moment and throw one out there. Heaven knows we all need a little of that childhood innocence to guide us through. So I will keep wishing. Hoping. Praying. And I will also keep relishing in what TODAY brings me. Because when it's all said and done, living in the present is what it's all about. Enjoy your moments. Rejoice in hearing your child's voice. Her laugh. His look. Celebrate what they CAN do, and keep wishing that one day, maybe they can move mountains.

Monday, May 18, 2009

One thing after another

I am not sure I would want to be my friend anymore. Really. I am annoying myself. The constant drama... the quick transitions from one crisis to another... the stagnant state of sorrow mixed with hope, anxiety and a dash of joy... Truly. I think I would have had enough of me already.

Somehow, someway, we find ourselves continuously surrounded by the loving and generous support of our friends and family. God bless them.

When your child has cancer, or another well known devastating disease... people make you dinners, put you on prayer lists, etc etc. When your child has Autism, people generalize, critique, pity, and fear you a bit. They quickly judge you for fearing toxins, the overuse of antibiotics, vaccines, food additives. They see your child in the store and shake their heads.... thinking what little control you have over your "non-compliant" child.

I find myself wearing my "Hope to heal Autism" shirt more and more. It seems to help explain why we have to have highchairs in restaurants for our three year old. Why we can't let go of her hand when walking. Why she walks funny, can't run, stumbles on curbs, can't use a fork/spoon, sometimes drops things including food on the floor, can't look or talk to people, and laughs at ceiling fans.

With the lovely combination of Autism AND Mastocytosis, Avery has now, and will ALWAYS have many battles she is fighting both inside and outside of her body. Some of our most dear talk about "Avery's Army." Trust me, in my house we are at war, and trying to save her is the most complex and tedious thing we have ever encountered.

A few weeks ago we sent out 4 comprehensive tests of Avery's urine, stool, and blood to determine what is going on inside her little body. We have gotten two tests back, which indicate extremely high levels of fungus (yeast) in her GI system. Yuk. So, now she is on anti-fungal medication, several more natural supplements and is experiencing the pains of "yeast die-off." Several other "levels" were off, and we are heading back to the Dr. to determine our next course of action. No fun. Now she has a fever, and I think I may be getting one too. Double no-fun.

Despite all of this, we find our moments of perspective and peace. We remain so grateful for our lives, and that we have our children here with us. Grateful for our loved ones who stick by us day in and day out.... even when we are one big ball of stress/panic/sadness. Grateful for the chance to learn so much from someone so little, so precious, so unknowing. Grateful for the few who do understand how this continues to devastate us, despite time passing. Grateful for each moment, each look, each smile and each laugh.... even if it is at a ceiling fan.

Thursday, May 14, 2009

The raw and bitter truth.

I was talking with my very wise Dad the other day who advised me to, every now and then, lay it out there on this blog with the reality of our daily struggle. His point was, (and I think he's right) that it's not always bright and shiny around here, and it's okay to be angry and upset about it. We have bad days.... and days when staying positive and hopeful is really hard. I admit that several days a month I feel like shouting to the heavens... REALLY????!!!! THIS is my life!? How incredibly unfair. NOBODY should have to watch their child suffer like we do. WHY does it have to be this hard to learn such basic, foundations of human functioning. AND.... for example, when sweet Kaylee broke her arm the other day, I feel like screaming... "How much more are we supposed to handle at once!!!"

Patience is NOT one of my strongest assets. Never has been. I, like my precocious one year old, want what I want when I want it. I want Avery to get better. I want her to start making an inkling of notable progress. I want her to say mama, or hi or even to wave at me.... something! But I HAVE to find a silver lining in all of this. I have to believe that for whatever reason, this is the path that I am supposed to travel. This is my purpose.

But when Avery is on her fourth night in a row of sleeplessness, random squealing, laughing and cackling from her bed at 4 am.... I grow a little wary. I look around me and can't believe how much people take for granted with their healthy, happy, NORMAL children. I feel angry. I feel bitter. I feel cheated.

Thank god she is starting to look at me. Just look at me and sometimes really smile at me. That's something, right? I am holding on to whatever I can here. I am desperate for patience. Please give me patience.

I am off to take my anti-depressant. Clearly I need it today.

Sunday, May 3, 2009

Oh, What a Joy! Kaylin Joy Beeson turns 1!

This past week we had the pleasure of celebrating Kaylin's first birthday. I spend so much time on this blog writing about our journey with Avery, that I fear my spunky, noisy, fun and feisty second child may not get quite enough documentation!

When we found out we were having a second daughter, Bryan and I both whispered an elated "yessss" in the sonogram room as we watched her bounce around on the screen. We were in the midst of discovering how deeply Avery was impacted by Autism and Mastocytosis... and for whatever reason, learning that we were having another girl led us to breathe a sigh of relief as we were beginning to understand the importance that having a sister could have for Avery. A baby sister... not even here yet, brought hope, joy, inspiration, and fear all wrapped up into my swelling belly.

When Kaylin arrived, her introduction to the world was fast and furious. She immediately was loved beyond measure, and quickly became the flexible "baby on the go" as we shuffled Avery from appointment to appointment. Thank God for breastfeeding because I was doing good to pack a diaper less well worry about cleaning bottles on the run or mixing formula.
For her first nine months of life, we threw the "rules" out the window and let her sleep with us. I think it was our way of bonding with her since our days were consumed with Avery's therapy and appointments. She did everything pretty much on time... smiled, laughed, cooed, rolled over, played social games, sat up, crawled, and by her one year mark, was walking all over the house bringing us toys, talking, and imitating up a storm. She has several "baby signs" and she lives for attention.

When I try to describe the love I have for my daughters, I know I fall short on relaying just how much and how deeply I cherish them. I am sure you mothers out there can relate, but I must say that though I always knew I would love my children, I never knew how deeply rooted that feeling would live in my soul.... in my heart... and in my total existence.

I am eternally grateful that Kaylin graced our lives when she did. I think I needed her to ground me as much as she needed me in those first few months to survive. She saved me in more ways than I can count, and I hope that I will always celebrate her for the unique and wonderful individual she is becoming. Avery has taught me how to live, how to love and how to see better.... and Kaylin brings her own set of life lessons that I know I will benefit from for the rest of my life. So happy first birthday baby girl. I am so proud of you. Love you to the moon and back again.