Special Needs Mom

See Me Cry Everywhere..

Before I was a Mom, I rarely cried. Maybe when I fought with someone I
loved, I cried. And when I lost someone I loved, I cried.

But now, you can see me cry everywhere. At field day, I cried. I cried
for the amazing power of what other children can do, and how much it
is taken for granted. The way a second grader can throw his body
towards a finish line, running at high speed. I cried then for how
joyously Zoe worked just as hard, traveled the same route in her power
wheelchair, squealing and happy to be at play.

I cry at school performances, marveling at the other children’s
abilities, and the way my child performs with the same excitement,
always exceeding the expectations. I remember at those moments how we
once wondered if she would ever walk or even talk. Sometimes a tear or
two will travel down my face, embarrassingly because I wish that she
could do more- not for me, but for the thrill of it. To be like the
other kids, just once.

In classroom orientations- I cry. The first time, the day of Zoe’s
vision loss diagnosis. I sat that night in a first grader’s chair,
listening to Olivia’s teacher speak-  my eyes seeking every brightly
colored picture and poster displayed high on the wall and wondering
then how Zoe would function in a classroom like this. And again, I
cried leaving a parent teacher conference, proud of Zoe and her
continued progress but grieving over a difficult conversation with her
teacher about “ life math skills for community living” and  the
complex questions about her future ability to read. The idea that Zoe
may have limitations with traditional reading is realistic, but
heartbreaking. Books are like food to me, something I devour to
satisfy a hunger. Books have calmed and soothed my hurts and worries
away, since I was a small child.

But there are also tears that are of peaceful relief- like when I was
speaking to the principal of Olivia’s catholic school. Sharing with
her my appreciation for the nurturing environment they have created on
their campus. “Please” she whispered,  “ You are making me cry “ as
her eyes were filled with tears too.

There are even tears of comfort, as my husband will pull me against
him in the dark of night, speaking softly in my ear, the words I most
desperately need to hear.

And yesterday my eyes filled too,  as Zoe cried for me excitedly-
opening her arms pulling me into a hug, as I joined her for a surprise
lunch at her school cafeteria. Earlier that day I wiped from my cheek,
tears of wonder and joy- as I went to mass at Olivia’s school and I
was drawn away from my moment of sadness by her voice and
her smile, as she sang happily enjoying her place in the choir,
radiating pure peace- as she has finally found her place.

Making the most of it..

“ Sometimes I feel sad, when I pray for Zoe, I pray that she can do more things”-  

Olivia wrote this recently as part of a homework assignment. She will be 9 soon, and is beginning to realize there are many things that Zoe may never do..walk unassisted, ride a bike, a scooter. We have a diagnosis that Zoe will continue to lose her vision, leading to a complete vision loss. And although Zoe is learning Braille now, we don’t dwell on that eventuality.

I never knew that Olivia believed  Zoe would   develop these abilities in time. Zoe is 7 now, and it never occurred to me that Olivia was waiting for these things to happen. And to her Zoe is just Zoe. But it makes sense, kids watch kids grow up and watch them gain skills as they get older. And that’s what kids remember, how they have grown and accomplished more with each year of their life.

When I explained to Olivia, that helping Zoe “ practice” walking, may not change anything she had this look on her face that said “ How do you act so normal Mom?, how can you say that so easily – that she won’t walk by herself, ever?”

We talked about Zoe’s decreased muscle strength; how she can’t balance- stand unassisted for more than a couple minutes. I didn’t say that Zoe’s body doesn’t make the energy her muscles need, her brain needs, her eyes need, her kidneys need- all the things affected by mitochondrial disease. I didn’t go there because Olivia knows now, that her body doesn’t make energy correctly either, and we are trying to teach her to remember to eat and drink and rest when needed-as her body tires. What I don’t think Olivia understands fully, even though she is so smart, even though she and her sister share the same kidney medicine- is that she has the same deficiency. She was just luckier.

I am sure that conversation will come someday. I have it with strangers sometimes – someone asked me recently if the disease was progressive. Yes. And both girls have it?Yes. This woman gave me the same look Olivia did. Kind of a shocked look as if she was thinking… well how can you just stand there? How did you get dressed this morning? Put on make up?  How can you stand there smiling so calmly?  What about Olivia- she looks okay right now...

What I wanted to say was- yes I get dressed each day, and the reason I am wearing this bright pink t-shirt today is because it makes me happy, even thought it’s not trendy or in style.  And these are my favorite jeans, the most comfortable for loading the wheelchair, lifting Zoe, carrying the walker- running around throughout my day. And my makeup-well it’s not hiding much, not the tiredness or the lines, around my eyes now, , but that’s okay -. And I pray more now- for strength, for happiness, for peace and that’s what  keeps me calm. As mothers we make a choice each day, and it affects the whole family. I choose to make the most of today , whatever it may hold. 

Looking at the World Through Rose Colored Glasses

 

 “Sitting on the beach in Maui.” the text message read.  I had just checked my phone. I thought about how to reply to this life long friend. We don’t talk much anymore but we still remain connected. I put my phone down and grabbed the stainless steel mixing bowl I was holding... My reply would read “Sitting on the bathroom floor... Holding O’s vomit bowl !!  Maybe with enough exclamation marks, it would give her a laugh.

 

It’s hard to explain how I feel when friends of mine sympathize saying... “You have your hands full… “Because, really. I don’t. We are blessed.

 

It is true that I am always worrying about energy levels, watching the girls for flushed faces, fevers or just fatigue. Shadowing Zoe to prevent her falls, keeping an eye on her seizures that break through the medicine barrier. It’s true that O’s health issues have progressed, her anxiety, an unpredictable new issue. But really, we are so very lucky.

 

I know a lot about mitochondrial disease now. It was five years ago when an expert doc handed me a packet of info saying “Go home and read this. Clinical cases vary, so please don’t focus on the internet case studies.”

 

Back then, the disease was so newly documented, only the worst cases were published. And yes, I read them. Most were fatal, devastating descriptions about loss of vision, mobility, motor functions and eventually...life. Over the years, that’s why I have been reluctant to tell others where to go on the internet to read more about it. The information is misleading, depending where you go, what you read. Depending on how you look at the world. But here are the facts; it is a progressive disease. There is no treatment or cure. But here are the even more important facts: Every case varies. Patients can have periods of time where their health can stabilize. Managing good health, and avoiding metabolic stress or illness, can delay the progression of the disease. And most of all, none of us have the unconditional promise of tomorrow, no matter how healthy we are today.

 

Over the years, I have come to know other children affected by the disease. Children who have been cherished. Children who have accomplished much. The same children who have eventually lost- and left the lives of the family who loved them.

 

Last week, we saw the local eye doctor who confirmed that Zoe’s retinopathy is slowly progressing. For a moment I stood there thinking about how to make the most of her seeing years, however many there could be 2, 5, 10 years?  Scene after scene flashed through my mind, more painting, more play dough, pink ruffled dresses, more glitter lip gloss- promising myself not to waste a moment. But then the doc moved on and talked about the new glasses she needed. Her vision decreasing and requiring a new pair of enhanced lenses. And with her new glasses she would see even better than she was at that moment- improvement. So with the help of her sister, Zoe selected a snappy new pair of Juicy Couture rose pink colored glasses.

  

Yesterday, we picked them up. I drove home from the appointment smiling, listening to Zoe happily singing along to the radio.. I checked her reflection often from my rear view mirror. She looked pretty and so grown up as she sat looking out the backseat window.. Did she see more today wearing her new glasses, as she looked out the backseat window? How would she feel when someday she saw less..?

 

Her sister was at home with Daddy, napping on the couch, curled up in her favorite blanket . A trip to the doc had procured a medicine for her nausea and she was finally resting comfortably.

 

I felt the flush of warmth within me. For today, we are doing something. Being proactive we can keep them healthy.We are managing. Medicines can make the girls feel better. Glasses can help Zoe see more. We are choosing- to look at the world through rose colored glasses.

Another Common Bond

I know lots of other parents that compare their children, the curve of their face, the color and curl of their hair, their social differences.. " one that is silly and one so shy.." I never realized that I did this too, but in such a different way. Zoe, my youngest was "much more affected than her big sister Olivia" , Olivia was my " practically typical" child, although both have a diagnosed mitochondrial disease. Until lately that is.. until the last months that have led to the realization that Olivia just isn't as healthy as she used to be, that she can't walk as far as she used to, without some fatigue and that sometimes when she seems sad or overwelmed ...she is just not feeling well, is tired. There are more medicine bottles on the counter and in the fridge- and some of the everyday joy of being her mom has been replaced by  worry and sleeplessness. A restlessness and a pressing desire to know what our future may hold.

Each day we learn a little more. We find a different way to happiness, a new way to relax and recharge. Zoe inspires us all everyday , that even with challenges- you can succeed. Just the other day both girls were moved to dance- they began with Olivia leading the beat ,swinging her hips,.  Zoe  joined in too, doing it her way , tall on her knees rocking back and forth and moving her arms. Because Zoe  is unable to stand unassisted, this is how she dances sometimes, with pure joy and excitement , rocking to the music. I watched from across the room and soon they were standing holding hands, dancing together as partners, Olivia  holding Zoe's weight as she leaned into her. This was something new,  Zoe , quite smart, trusts few to hold her balance like this in an upright position and I had not seen her do this with her sister before, especially moving to the music . I realized in watching them, that they are not only friends and sisters who play dolls and Barbies and Pet Shop together, girls that make each other giggle and fall asleep cuddling and sharing secrets,  but they are sisters who get labs together, hold each others hands in comfort, even get sick together, I realized then for the first time , that this disease is just something else they share too.. another common bond.

My Heart Sighs

I sit and I sigh. In the quiet early evening, after my daughters are tucked into bed, the house is restored to order and the lights are turned down low,I sit and I sigh.

I sigh because I am weary from the physical act of being in motion all day- spread thin between appointments, a desk buried with work, a home that needs tending and my young daughters ' constant need for hands- on mothering.  I sigh , and with my exhale I shed my memories of the tears, and cries, and frustrations from the day. I release the stress of worry and tension with a sigh so dramatic,  I imagine it is heard for miles. But really it is soundless, or perhaps it is a simple "whoosh" of air, suspended.

I sit in the silence. I am amazed that my breathing is soft and even .Within me, my sigh echoes loudly shouting my emotion.

My husband is beside me. I am tired but I reach for his hand, and he gently opens his, accepting my tight grasp. We sit like this in the quiet .His eyes follow the images on the television across the room. My eyes still and closed begin to visit the memories of us in my mind. I can see days upon days, full of lazily spent hours. Sitting in the sun, reading,and napping, creating wonderful meals from complex and precisely detailed recipes. We talked , and talked .. Wasting the words and the quiet as if we had all the time in the world. But we didn’t.

Now those quiet and open opportunities for deep conversation are rare and simple treasures. I sigh, a short sigh of pleasure, grateful for the gift of his strong hand and our physical togetherness.

Now we have our daughters. And just when Ithink they are extracting every little bit of life right out of me- they burst into the room overflowing with smiles and excitement and fill all of the empty, open spaces with joy.Just when I think that life with them will surely break my heart- I am unexpectedly showered with their love and happiness , their desperate need for my presence- so much so that my heart feels as if it may burst with fullness.

I sit and I sigh.

Twenty Years of Food for the Soul

Her corkscrew curly brown hair falls carelessly past her shoulders and down her back. In the dusk of early evening, the champagne colored beads on her dress are shimmering in the soft light. She looks beautiful. She is smiling her silly, relaxed smile and her eyes are shining. She places one hand on her fiancé’s shoulder, while the other, gracefully holds her glass of champagne. Nervous and determined not to cry, I move my eyes away from her image and begin the toast I have written for her.…

“Jill lives her life with great passion. And, we have been so fortunate

To receive, the many gifts she gives us.

Gifts of loyalty love and support.

And now, a man who knows her heart,

her smile, her spirit. Has chosen her.

May he give to her these very same gifts, and more.

That she so richly deserves”.

The toast is finished, and I am watching her walk toward me. Her familiarness stirs something within me.I surrender my mind to the memory of when we first met, over twenty years ago.

She stood then, amidst a cluster of fifteen year olds. They were gathered around her, echoing her laughter, and following her animated gestures eagerly. Her voice , not yet the sexy purr that it is today, was fresh and fun and full of bounce.

I was a new student at a large public high school. She brought me into her circle of friends, and soon after, into her family. She fed me wonderful Italian meals and welcomed me into the warmth of her home. She accepted me, looked after me, encouraged me.

Today, she is a gifted primary education teacher. Each year, a new classroom of smiling, adoring little faces are thrilled to be in her classroom. Because she accepts them, looks after them and encourages them- like she did me.

She relates to the special needs of my children, and provides amazing insight to the challenge and care of raising them. And when Zoe is ill, and we have to go to the hospital , urgently and unexpectedly, she is the only friend that visits us.She comes to check on Zoe, and she comes to check on me. She wraps her arms around Zoe and makes her smile. She feeds me homemade spaghetti and words of encouragement. She brings me socks to warm my cold feet.

She has promised to be my children’s advocate, guardian and mother, should the day ever come.I know there is nothing she wouldn’t do for them.

And now, she has given me another gift of forgiveness, and understanding.

Soon she will marry, and I, her best friend will not be there.

Tonight, I invited her into my heart, so she could feel my troubled spirit, my weariness and worry. She felt the pain of my children’s illness. And when I explained how I could not leave them, to travel to her wedding. She understood.

And once more, she fed my soul with the love of her friendship- as she has for twenty years.

Looking For Rainbows

Zoe was standing right next to me in her walker, balanced and ready to scoot onto the sidewalk. Olivia, her big sister, was alongside her waiting for my signal to go. Turning my back for less than a minute,I grabbed my bag from the passenger seat of the car, shutting and locking the door. And at that moment, I heard it. “Wham!” .

I spun back around to find Zoe , slightly tangled , but unharmed, laying on the ground. She had fallen back on her walker. Olivia’s arms were outstretched beneath her, cushioning her from the hot, hard ground of the cement parking lot. “ I caught her, Mommy” said Olivia . Her voice was slightly shaken but she was grinning. She looked down into Zoe’s surprised face as Zoe reached out her arms for her big sister.

In my kitchen, on the refrigerator, hangs our medicine chart. There are 12 boxes to be checked daily. Twelve times each day that require discipline, patience, organization and a few minutes of prep. I used to be resentful of this chart, the intrusion and hold it had on my life. Until my mother pointed out that maybe I should instead,be thankful. That in the same way I appreciate Zoe’s 7 weekly therapy appointments,  I should be thankful that I can give my children something to help protect them from a progressive disease , to protect Zoe from experiencing more seizures, and protect Olivia from the symptoms of asthma. In that moment with my mother, it changed. And now I am thankful that I can do something to protect my daughters.

The other night, I was busy in the kitchen. My body in perpetual motion, my mind concentrating on the tasks at hand, when my husband called to me from the patio. A storm had just passed- he was outside grilling fish for dinner.“ Come quick” , he said. From the sound of his voice, I thought it might be a passing airplane or something to see in the desert behind our house. “ It’s a rainbow, come here.” He urged. Still distracted by the chores I had set aside, I went. I looked and just barely ,could I see the arc of colors streaking the sky. I went to grab my camera.

Later in the late night quiet , I studied the image of that rainbow on my computer screen. Just faintly, you can see the rainbow against the backdrop of the desert sky. I was thinking about Zoe’s fall, the conversation with my mother, the letter I had to write to Olivia’s school about her illness, the conversations about new tests and doctors appointments for Zoe.

I remembered then, something I once read about rainbows. How they only come out after the rain, and you have to be watching for them. That you have to be looking up, searching the sky.. because they are only visible for a short while.

I realized then… The moment I saw Zoe reach for her sister after her fall, the conversation with my mother, listening to her gentle reminder.. Both of these instances….. were like a rainbow.

A treasure, that I might have easily missed….. had I not been looking.

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

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.

Happy Mother's Day... A letter from your husband

This "letter" is a Mother's Day surprise..........YOU are much more than just the Love of my Life. You are a Mother. You say and do without question, you love and share without condition, you seldom rest even when weary. You are the light in our eyes, the warmth in our hearts and the wind in our sails. Olivia and Zoe will grow to admire you for everything that you have done for them. They will look to you for continued strength and wisdom and that smile which acknowledges their accomplishments. Your spirit will be renewed as you continue to love and cherish these "gifts" that God has blessed us with. Your faith in HIM will continue to provide you strength and wisdom. My love for you, "MOM", will be forever yours. WE love you, HAPPY MOTHER'S DAY.

bjp