Previous month:
June 2005
Next month:
August 2005

Thankful For the Rain

Dsc00466_1

This is the landscape behind my house. A natural piece of desert that exists just outside the fence of our backyard. In the morning, I sometimes try to slip outside with a hot cup of coffee just to take a look.Only two months ago, it was blooming and unusually green. Now, tired and thirsty- it is stark and compelling in the morning light. The monsoon season is here and I imagine the desert is thankful for the refreshment of rain.

In brief, the kids and I had nine appointments during this past record- hot week. Six of the appointments were Zoe’s regular weekly therapies plus three doctors appointments (one bloody ear infection, 2 cavities and one continued bout of asthma). The week ended with new prescriptions, sleeplessness and a middle of the night illness. Then it started to rain.

Looking back at the week, I began to measure my successes. I was able to accomplish some tasks for my business. Some days the guilt and pressure of what I am challenged to accomplish is heavy- but the pleasure of small accomplishments can be so sweet.

And although the appointments this week were taxing- Zoe is making slow but steady progress in her therapies. Some moms I know battle their concience questioning how much therapy is too much. But for Zoe- it is working.

And for the first time in over a year- Zoe battled a nasty infection – that did not send us to the hospital. The doctors were kind- the medicine efficient and her body is strong. Olivia’s asthma seems to be improving with the new treatment plan and it is a relief not to hear her coughing.

Yesterday I was reading a compelling blog that referenced a “best/worst moment”. Defined as a time or incident that you viewed as “bad”- that in fact turned out to be good. Next, I read with interest an email from a special needs mom asking the question “Am I in denial because I don’t view my child as severely delayed?”

All of these things were on my mind late last night, as I watched the rain coming down on the desert behind my house….My week…- including the memory of my husband bathing Zoe in the middle of the night,…. that “best/worst moment” blog, the mothers’ questioning email.

At that moment, I could feel the heat of the desert. I could feel the tired, dry desert embracing the refreshing rain. That’s when I realized it’s about perspective. All of it. The best/worst moment, the mother looking at her child, my week.

It is our choice..We can feel barren,dry , even tired like the desert or we can just be thankful for the rain.


You Are Not Alone

Side by side, my husband and I enter the double-doors. We are, as always when we come here, hand in hand. We make our way through the foyer and into the double doors of the church. We move single file down the aisle. I am following behind him .He stops at our regular pew, and steps aside. I briefly genuflect and move past him to take my seat. He kneels in prayer before sitting. We are in God’s house. And here, hiding from my own thoughts, masking my emotions is impossible.

My faith has always been a quiet constant in my life. So quiet and so natural- that somehow along the journey with my children and Zoe’s illness- I had almost forgotten about God.

I pray- saying the maintenance type of prayers you learn as a child. At night when I fall asleep, before Zoe’s medical procedures- the standard, memorized prayer here and there. But that is all.

I am focused on other things. Making a difference with my children’s care. Being an advocate. Finding answers.Maintaining my business. Managing my emotions and the reality of our discoveries. And in the midst of all this- there are times when I feel overwhelmed, exhausted and very much alone. In these times especially, I have forgotten about God. It has never occurred to me that he is there. Waiting for me, willing to offer comfort and strength.

I am not good at asking for help. In my world, it is the last resort and never my first thought. In times of crisis- my first thoughts are how can I fix this? What can I do to make it better? I look for answers and concentrate on actions. Something unseen like comfort and strength- and God’s omniscient presence appear too passive in these moments.

Sitting in church, the music begins and I know. There is too much quiet- too much empty space alone with my own thoughts, emotions and fears. Not enough distraction. We have shared many special memories in this church. My husband and I, newly married, worshipped here together before our girls were born. We celebrated their baptisms here in this church- with family and friends. When life was simple. Before we knew.

On this day, across the aisle- there is a little girl, about 3 years old. Her hair is a fine blonde like Zoe’s and she is wearing a dress similar to the many that hang in Zoe’s closet. This little girl is fidgety. Fidgety in the way I wish Zoe was .This little girls muscles are strong, her body is healthy. She is energized in the way Olivia hasn’t been lately. This little girl is kneeling down and standing up. She is walking across her family up and down the pew.

I hear the scripture, the Deacon reads the gospel and the new pastor gives the Homily with the message “do not fear”, Sometime before communion there is a song with the words reminding me “you are not alone”.  I see the tear stains on my blouse, and my fingers wipe away the wetness on my cheek.

My husband places his hand on my knee. I realize then- the very resource I had forgotten all about. God. Seeking comfort and consolation- from God. Putting my trust, my frustrations even my fears in his hands with the hope of finally finding peace.

There in that church I began my own prayer. Not the simple memorized verse of childhood- but something for me.

My God, I began. Be my strength and my comfort. Bring peace to my hurting heart. And teach me how to ask for your help. – Amen


Mothering & Missed Milestones

Dsc00458_edited_2

I was in the shower. Trying to deep condition my hair for the first time in months .Olivia my oldest was 3 and suddenly her nose was pressed against the shower door. Her voice rising above the pounding hot water insisting “Mommy, milk!”  In the few minutes of quiet, while I hurriedly finished, I realized with absolute certainty that I was right about Olivia’s little sister, Zoe. She was very delayed.

Zoe was 15 months at the time. In that stage of development where some children pull ahead and do more- and some children do less catching up closer to the two-year mark. But it was in those few minutes, standing in the shower that I knew for sure. Zoe should have been approaching the start of high maintenance toddlerhood. The “I WANT IT NOW” stage. It wasn’t just that Zoe wasn’t walking or talking, or that she had just started to crawl a bit. It was her inability to express her needs. In that way, she was like an infant.

That is when I began studying the “milestone” charts with real purpose. These charts mark a child’s early development not only by gross motor skills, but also fine motor ,social and language skills. In a way, these charts served an important purpose, reaffirming my belief that the doctors should listen and pay more attention to my concerns.

Later in our journey ,these missed milestones, and Zoe’s continued delayed development confirmed her need for therapy services . These charts , my perseverance,and Zoe’s continued delayed progress did make medical and therapy professionals pay attention and treat her appropriately.

Without even realizing it, I eventually grew tired of the process of measuring missing milestones. I even stopped  looking at the charts and let my mothering experience take over.I started making my own record of new accomplishments, no matter how small or subtle.

When I would see a specific positive development- that was my mark as to her progressing development. She wants to wear a blue t-shirt every day! (Her sister preferred princess dresses, but the desire of preference began about age 2).  She is using pretend play by herself! Watching her play ponies exchange hello's. Zoe saying she wants to watch Dumbo- ( again!) These cues combined, told me she was progressing to the two year mark. It didn’t matter to me that she had just turned 3, I was celebrating her successes.

This is a much kinder, gentler way to live. I know my child is delayed, and other Special Needs Moms know this truth about their child too. Once this reality is known, is there really a need for us to measure? Isn’t it so much better to celebrate their success- encouraging their progress?

Zoe has many positive personality traits- qualities that are not easily measured on milestone charts. She is motivated, she is affectionate, eager to learn, happy and in her own way.. confident. Her therapists see this too. I think in some ways it helps them bond with Zoe which results in more effective therapy sessions.

But for the first time, these positive self attributes, the gifts that God gave her- came through and were part of a professional evaluation. Zoe's child psychologist completing her annual evaluation confirmed that she is 10 months behind developmentally- slightly further behind than last year. However, she gained IQ points and although still markedly delayed, this professional saw beyond her clinical scores and milestone charts.

She used many positive words to describe Zoe’s potential. She embraced Zoe’s personality, her spirit, her will, her motivation. Confirming these attributes can affect developmental success as much as an intelligence quotient. She told us stories of low functioning intelligence children progressing in mainstream environments- because of their personality and will.

As a special needs mom- my efforts to improve my daughter’s intellectual ability are limited.

I encourage her cognitive development. We practice therapy approaches in our home. We stimulate- we encourage. But there are structural limitations within her brain.

But as her mother- there is no limit in developing her spirit. I can encourage her confidence. I can positively influence her social interest, affection, behavior and nature. I can model tenacity and pray for her developing courage to continue. I can reward her will and effort each day. I can celebrate the gifts God has given her and teach her to celebrate her own accomplishments, just by being her Mom.


Writing These Stories

Night after night, I found myself standing before my large bookcase. I was searching for the right book. I have an extensive collection of noteworthy resource and educational books on the issues that affect Zoe.. Understanding the Special Needs Child, books about Epilepsy, Neuromuscular disease, sensory disorders, inclusive education, behavioral and cognitive issues. All of these books were helpful. They helped quench my thirst for knowledge and build my confidence. They taught me many different things about helping my child. Very few of these books were heartfelt, and none of them really made me feel less alone.

I found myself re-reading the forward and introduction to these books. I was even scanning the bio on the book jacket, looking for clues about the author. I was eager to find someone like me. Few of these books addressed my emotional needs. The desire to feel understood, less alone. The feelings of separation that a special needs mom might feel in a circle of typical moms. I was craving the common bond- with another mom, living a similar life.

Across the country right now, there are women discussing the subject of motherhood. They are connecting with this common bond. In the produce aisle at the grocery store, in the waiting room at a pediatrician’s office, at the hair salon.

They are experiencing feelings of affirmation, understanding even comfort if it is warranted.

Initiating a casual conversation about my daughter’s special needs is not easy. Finding someone who understands our life even more difficult. After a long day, in the dark of night and in the privacy of my own home- I was looking at my own bookcase searching for this type of solace.

This led me to write these stories, confident that other mothers would appreciate the words of understanding. That late at night, after a long day, these stories would comfort, and inspire and help these other special needs moms feel less alone.