The Spirals

We got back on Monday from a 3-day weekend in Shasta (Upstate), and I must admit, a little change of pace from the every day routine felt like we had gone for a month. Zoé was a trooper in the car (she took a much needed nap during the drive)and I can foresee some wonderful vacations in a minivan through the National Parks we are eager to visit.

We were back at PIP (Parent Infant Program) before we knew it and it felt also good to be back with what I like to call: "My Extended Family" or the "Sisterhood of Special Need Caregiver Moms".
We are lucky to spend two hours weekly, one on Tuesday and one on Thursday to simply be together, without our kids to share thoughts, feelings, ideas, tears and peels of laughter.
On Thursdays, dads usually come, and I am one of the only moms with Marie to be there. I like the down-to-earth and grounded thoughts dads share, for we, moms are sooooo emotional. Well, I know I'm speaking for myself here...

So on Tuesday, we talked about what it feels like to live with the "look" of people, the look of pity, of "I don't want-to-look-but-I-do-from-the-corner-of-my-eye", the look of "I'm trying to be sympathetic", the look of people who simply don't know what it's like to live with what Suzy referred to as "the downward spiral of sadness", and I can so much relate to that spiral.

Sometimes, mine goes down and I feel sadness, fear, outrage, anger and ask myself "Why did this happen?" or "How did this happen?", and I let my feelings of grief permeate all my thoughts.
I'm glad I can also reverse that spiral, and then, I make it go up, full of hope and happiness, full of life and of all the teeny weeny milestones Zoé accomplishes every day!

We also talked about the fact that people who have "neuro-typical" children tend to take for granted what is so precious for us.
The first step, the first giggle, the first dada or maman, and even the first smile, which came so late for us. I tend to see all these things with so much perspective, and that is what helps all of us, caregiver-moms and dads, to keep going on. It's the perspective, the lens we need to focus on how much life has to offer, how much joy our children give us after all.

We don't need that pity, that "Boy, I don't know how you do it!", we do it, because we have NO other choice and we couldn't or wouldn't do it any other way.

I hope I won't offend anyone out there with "neuro-typical' kids, I am SURE that you value and cherish every milestone your little ones accomplish, as much as I do...it just helps to emphasize it, for me, anyway.

Suzy also mentioned something that struck a chord in me. This is how she put it:
"if we could, there is not one of us here, who would rather have what affects our children" and that just reminded me that what affects Zoé also affects me. I feel the symptoms creeping, but I try to let go of the fear. I must try not to let my imagination run wild. I must be strong for Zoé and David.

The hardest part for me is the loneliness and alienation I sometimes feel. Being so far away from home is the hardest, and being so far from friends, when I could use a little help...but I manage and when Dad comes home at night, that's when the load I've been carrying all day dissipates and I can then relax a bit, and unwind.

Regimented Life

Having a child with "special needs" means that you set really high standards of achievement on your child and yourself. I do think that sometimes, it's just too much.

we are so afraid that they will miss out on things, on life in a sense, that we want them to achieve everything at once.

I remember working on Zoé and her self-feeding at 11 months, working her body at 3 months, language development, crawling, stretching, hand signing, reading books, placing pegs on a mat, sifting through huge vats of beans to find tiny objects so that she can work on tactile receptors, working with fuzzy balls, again for fine motor sensory skills.

When will we just look at life without having this askewed manner of considering every day life activities. Why is it important to make sure that whatever Zoé does has to have a purpose. Is it to make her more astute, more aware, self-assured?
Our life is so regimented already, with schedules, goals, classes, sessions, therapies, assessments.

I'd like to have one day when all we could do would be playing, reading, snoozing, for Zoé to simply be a "neuro-typical child" (The more politically correct way of referring to a 'normal' kid!!) who can do whatever she likes when she wants. A day when we wouldn't need to rush out of the house, on a busy highway, kiddie music blaring in the car, a day when I could just relish the "now", savor the wonderful little girl we have who loves to slide and fall into her Daddy's arms, who loves to go on the merry-go-round with Mommy and ride her own car...
Well, I better get ready, time to hit the road, for another session of Physical Therapy.

New Sets of Goals...

New sets of goals for Zoé:
-validate what she's achieved
-work on her vocalization. Her low muscle tone prevents her from being vocal about her wants and needs.
-work on her interaction with other kids, being more "feisty", defending herself is good and she knows how to demonstrate her vulnerability when opposed to other children, but she also needs to show when she doesn't like something. For instance, if a child is too pushy, gets too much in her face, she needs to learn to "tell him/her" that she's not happy.
-work on her sign language. She now signs for :
cracker: tap on the arm. says 'cracky': cracker+cookie=cracky
water: finger to the side of her mouth.
more: says 'encore' or taps 2 fists together.(see the picture of her above)
monkey: she'll say the "houhou" while imitating the animal.
apple: fist on the cheek.
but we would like her to sign when she needs help, wants something specific besides water and snacks.
And most importantly, we must work on the idea that MMD does not define Zoé. She is a spirited, lively, fun-loving little girl whose legs are still not strong enough to carry her. She finds other ways of expressing herself and it is amazing to watch her climb up on the couch, slide off the wedge or the big slide, crash down on the bean bag and collapse into my arms at the end of yet another
fun day.

I just hung up with Kayla's mom, Lisa. It was wonderful catching up about our daughters, and sharing information. I am now a proud member of the "sorority" of "special mothers of special children". Lisa posted the following poem on the MYOTONIC.COM website and I thought I would share it with all of you guys out there!
It really resonates and makes me look at things in a different way. It's important to remember that I am not alone on this journey. The picture above is when Zoé was in the NICU; she was a couple days old. She has come a long ways since then...


To You, My Sisters

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 ultrasounds.
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, "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 inane
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 "A Trip 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.

By Maureen K. Higgins

Mother's Day

Mother: playmate, best friend, chauffeur, cook, caregiver, unconditionally loving (and loved), nurturer, fighter and advocate. Hallmark doesn't use these words in Mother's Day cards, so I thought I'd start this way.

This is my second Mother's Day and so much has happened since the last one. I think I should fill you in on advocacy though. Which if have to get better at. It's hard to defend something you truly want for someone for whom your love has no boundaries, while you try to keep your equanimity and composure. I tried being very diplomatic, without pleading nor being aggressive, but to no avail...

Last Thursday afternoon was our "clinic" appointment and what came out of it could have been predicted: "Budget cuts, waiting lists, good potential for growth and development, etc." In short, we didn't get any more services, but at least we didn't lose what we had: one hour of OT and half an hour of PT. We were told that Zoé is doing so well, that perhaps she doesn't need anymore time at CCS. I was told by the attending doctor that what truly matters is what we do at home.

So I know what my Hallmark card will say tomorrow: "Thanks Mom, let's take a break today and let's NOT exercise! It's YOUR day".

I was also told that if Zoé does reach a plateau, or doesn't progress they might increase the PT session.
It's like a double edge sword, for you want her to get more time, but you'd prefer for her to never stop progressing.
So we'll keep working.

When I look at Kayla's parents and their dedication towards her, I also see my own reflection. All the hard work pays. There is no other way of helping Zoé, and if she is where she it today, it's thanks to all the love, care, and never ending exercise we've been providing.
On the balls, on the wedge, off the balls, over the wedge, reaching high, reaching low, standing up, sitting down, ankle foot orthotics, helmet, glasses, stander, swing and bouncers.

Kayla's mom said that "your life is full of hopes and dreams, and sometimes it can change in the blink of an eye..." oh what wisdom I see there. Nothing is more true than that.

You are pregnant and envision a life of delights and wonders, and then, everything changes. But wonderful things happen in changes and I wouldn't do it any other way. The lessons I am learning are my invaluable, priceless wonders for my invaluable, priceless daughter. You don't get them in "Pregnancy for Dummies or Parenting for Dummies", but within yourself and your strength.

I also get much help from all the mothers I have met on the way, my own to start with and all the moms in my support group, so I dedicate my blog to all of them for their inspiration and openness: to Suzie, Shettal, Carol, Margaret, Melissa, Irene, Celana, Marybeth, Karen, Trish, Mom, Julie, Gwen, Anne, Odile, Alicia, Magali, Caroline,Gina, Elena, Gerry, Sibylle, Ginny, Lise and if I have forgotten some they will know who they are.

And to Kayla's mom, Lisa, for her inspiration...to keep working on my blog and to invite you all on our wonderful journey with Zoé.

From our side of the blog we send our love.

Clinic Day

Tomorrow is "Clinic", we are going to see Dr. Pico, the woman who decides how far Zoé has come, if her goals have been met both physically and cognitively, if she can still benefit from California Children Services (CCS), if the services rendered will be reduced or not.
It's going to be nerve wracking to see how Zoé's "case" will be handled. These clinics are quick and to the point, but should be an open place to communicate and I need to advocate for Zoé. In this day and age, it's tough to ask for more services, knowing that many families are on waiting lists, knowing that our governor is cutting budgets due to the recession, etc.
It's strange how I never thought that being a mom meant advocating for your child in such a place...but here we are, and I need to be strong and fight for what has made a difference in Zoé's life. She has grown and developed so much. I am so proud of who she is right now and how she is handling the challenges that have been set before her.


> http://vimeo.com/moogaloop.swf?clip_id=2539741

Ok, as I am still a novice in blogs and the world of Bloggers, I don't know how to insert a video yet, but do check out the link above....it is truly amazing...and in keeping with how much help I will need tomorrow.

till then, we send our love from this side of the blog ;-)

Swinging, sliding, singing...

Sorry if the picture isn't clear, but the swing was moving and I used my phone to take it.

This is where Zoé works on strengthening her abs, her torso, her trunk control.

Kitty is her occupational therapist, a wonderful and compassionate woman who always reminds me to never doubt Zoé's abilities. She has so much faith in Zoé, it's amazing to work on a weekly basis with therapists.

Kirk, her physical therapist, sees Zoé once a week, and Trish sees Zoé twice a week for physical therapy as well.
Trish is amazing, she knows Zoé's body by heart and when we have a session it is ONE hour long. Imagine when we go to the gym and are exhausted after 45 minutes, Zoé still keeps it up. She did, however, fall asleep on the mat one day, literally dead beat. She looked so sweet as she was sound asleep, dreaming away...

In New York, we had other therapists who did a tremendous job and taught me everything about how to stretch Zoé's body and strengthen it. These lovely ladies were Tara, Lucia, Anne-Marie and Alma, for PT, OT and Play Therapy.

We also have one monthly visit with Marybeth, she is another PT who works at the "School" Zoé attends twice a week. She comes to our house and lends us toys, wedges and ideas!

They have taught me so much, about endurance and believing in one's self.

I just looked at my daily planner from last year and realized that Zoé has been seeing therapists since February 28th, 2008. So for 15 months, four times a week she has been and is still working on her body. She has so much determination and is so proud of her accomplishments that it is truly delightful to watch.

On the off days, when we are home, I keep it up, using techniques, ideas and tools the therapists have shared. Till our next posting, we send our love.

A True Inspiration

I've been wanting to write for the longest time and simply did not find a minute to do so. Zoe is in bed for a short nap and I jump on this opportunity. I have to share the most optimistic and positive news I got in the past 10 days.

I met a little girl, a true inspiration that has lifted my spirit. I am starting to see a beacon of light in the distance.

This wonderful little girl named Kayla is 3 and a half and was also diagnosed with Myotonic Dystrophy at birth. Just like our little darling Zoe. Kayla has more repeats than Zoe, but that is not the point. As her mother said: "she is beating all odds" and with true love and dedication anyone can pull trough. Kayla started walking at the age of 2 and her mother said that doctors had very grim news about her prognosis, and yet, 3 years later, Kayla is here to testify that her hard work is paying off.
I shared a few thoughts with Kayla's mother and I will keep in touch so that we can help eachother out and share ideas on how our girls can learn from one another.
Kayla's parents started a foundation: www.myotonic.com and their logo are two connected hands, even though they explain on their website that the logo shows the type of hand testing neurologists perform to tell whether a person is affected with MMD, it also shows hands connected to help, to give and receive, and I believe to hold on to when things get tough; when you have doubts and fears that come creeping up on you.

I have been watching You Tube a lot as one can see Kayla's milestones being met: her first giggles, her first steps and I cried the first time I saw her walking 12 tiny steps towards her mother.

Since last Wednesday, April 29th, Zoe has changed in so many ways: she is now eager to climb onto everything, little tables, chairs, couches, stools,etc. She held onto our bed standing on her own for the first time on Saturday.
She loves cruising through tunnels, sliding off on wedges, climbing to get toys kept up high. I will fill you in on our next posting. Till then, be well.