Avery Grace

Avery Grace

Saturday, January 24, 2009

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."

Friday, January 16, 2009

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.

Thursday, January 8, 2009

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.

Sunday, January 4, 2009

Holiday Letter

There is a great song in the theater production of “Rent” titled Season’s of Love that asks the question, “How do you measure a year?” The song goes on to describe the importance of measuring the year not in events or things, but in love. We have learned a thing or two about that in the last 12 months. Most of you reading this know the ups and downs the Beeson’s have endured, but for those of you who don’t know what I am writing about, I will recap.

The absolute highlight of the last year was the birth of our precious daughter Kaylin Joy on April 28th. True to her middle name, Kaylee has enriched our lives tremendously, and brought so much light and happiness into our home and hearts. She is such a blessing.

We also feel equally and incredibly fortunate to be the parents of our special angel, Avery Grace, who is now two and a half. Avery has had a rough 12 months, but what has remained steady is her delightful disposition and ability to give us all the insight to truly understand the power of unconditional love. Last January we had the scare of our lives when doctors feared Avery’s Mastocytosis (an autoimmune disease we already knew she had) had turned into Mast Cell Leukemia. Several tests and sleepless nights later, we were incredibly relieved to find out that she does not have leukemia at this time, though she will continue to be followed by her oncologist and several other specialists. Another complication of this autoimmune disease is that it makes kids who have it 7 times more likely to develop regressive Autism. Avery had developed beautifully her first year of life, and now has a diagnosis of full blown Autism. She is in several hours of therapy a week, as well as on a strict regime of biomedical treatment. The team of professionals dedicated to help our sweet toddler is the best of the best, and we are in a place where we are finally feeling hopeful for what is yet to come. Avery is so much more than her disorder, and we are so proud of her and all that she is. We choose everyday to praise, love and adore her for her spirit and her abilities, rather than focus on her disability. She makes me and Bryan better parents and better people. We have learned SO much from Avery, and we have so much hope for her as she continues her journey.

Bryan has been doing great at his job with Current Energy as their client services manager. He even won a big award a few months ago and gets lots of praise and acclamation for his hard work. Most importantly, he is also an outstanding husband and an amazing dad, which won’t come as a surprise to those of you who know him well. The love he has for his daughters is flawless and pure. He has taught me so much about how to stay calm in the midst of a storm and find goodness, hope, and optimism in the darkest of hours.

I am proud to say that I recently completed a certification in Relationship Development Intervention (RDI). I have been working on this for three years. Ironically, it is a certification specifically designed to treat children with Autism and their families. There are only 8 of us in the state of Texas at this time with this specialized training, and it is obviously an area of study of which I am extremely dedicated. I have been working in Early Intervention for almost 8 years now, and am grateful for the lessons I can now apply to my personal life! I do some contract work part time, and spend the rest of my time toting Avery to various therapies, breast-feeding Kaylee, or on the computer doing Autism research.

So as you can see, our year has been a busy one, full of emotions and rich with blessings. Our immediate and extended family has really come through for us, and the friends we have are the salt of the earth. So all things aside, if we measure our year in love, it has been the best year of our lives. But, we have come through it stronger, more fulfilled, complete and happy to be living for each day as we have learned to appreciate the little things in life that make it all worthwhile.

Happy Holidays dear friends and family. We hope all of you have a magnificent season, and a spectacular 2009.

Fresh Start

It's that time again. Time for new beginnings, resolutions, promises, and good intentions. Like most everyone, our holiday break went by too fast, and we are home again after an extended stay in Atlanta. It was a true break... a break from work, school, therapy, interventions, chores and worry... (well not a complete break from worry,) and I must say we needed it. Now begins a new year, and one of my MANY resolutions this year is to write more diligently... every week I hope... as it is my sanity, and my documentation of how far we have come, even if we are just in the prelude of our journey.

Kaylin had a fun first Christmas. She returns to Texas spoiled rotten and louder than ever, but her personality is really beginning to shine through and she lights up our lives and adds lots of noise to our melody.

Avery also returns spoiled with stickers and her beloved TV shows.... she will have a rude awakening come tomorrow when therapy and school resume and she is expected to "perform."

With a new year I see a time for hope. It is my prayer and my effort that this year will be a year where Avery makes progress, and stops regressing. Where the word "Autism" doesn't haunt us every minute, but makes us who we are and is simply a part of our family and something we cope with exquisitely. 2008 brought with it so many sorrows and a few joys. The ultimate high was the birth of our sweet Kaylin, and the devastating low was the diagnoses of Avery's multiple conditions. But all in all, we are optimistic. I don't think I will ever get over losing my perfectly normal baby into this heartbreaking disorder, but I am in a much better place to move forward and be the best mother, guide, teacher, and support that my children deserve. Bryan often says "she is who she is." I hear that, and I am getting better at coming to grips with it... but I also say... " I can't wait to see who she will become."