I'll tell them you are disabled...

Well, that's it, the D. word came out.
How to speak about our condition? I missed the support group for people affected by MMD-Steinert. The main topic was going to be about how we can speak about disability, how we can let others understand what we go through on a daily basis. The hurts, joys and struggles of living with a crippling disability where you muscles are slowly wasting away.
Well, I guess it just came right our yesterday.
I took Zoé to her aquatic therapy and the water looked really enticing. I told the volunteer that I wanted to go swim a couple laps in the adjoining pool and let Zoé play Ariel (The Little Mermaid) on her own with her aid.
In order to be able to swim you have to be disabled. My friend there told me she would tell the lifeguard that I was disabled.
I thanked her and said I would do it myself and pay my $2.50 fee for access to the pool.
It felt so weird. I am disabled, I need to articulate it to fully grasp what it means.
I guess now the blue placard in my card has its place. The feeling of acknowledging that I am "disabled" seems even more tangible than the plastic card I place in my windshield whenever I am running Zoé to yet another therapy session.
I can't believe I said it. It feels so strange, so out of place in my language. I must get used to it.
It has to sink in.

Yesterday was also another emotionally draining day. I took Zoé to physical therapy and because the motor room was closed and it was an awesomely beautiful day in California her PT decided to do the session in the school playground. It has a wonderful structure with different slides, ladders, balance beams, etc. Zoé worked so hard that she couldn't even do her 45 minute session, we had to stop after 30 minutes. I feel so terrible about all the demands we make on Zoé. She is not even 3 and a half and ever since she was 4 months old she's been worked, in and out. Her torso, her legs, upper body, core, abs, etc.
I cried deep tears last night as I thought of that.
It was just too painful.

Today was a short wearing day, hot hot and sunny and we didn't hide the AFOs, Zoé wore them and her fun-loving personality out-shined the fact that she had these odd-looking shoes.

Kids in Motion

Zoé just started a gym class, on Saturday morning. I now you are all probably thinking that I am crazy adding another thing to Zoé's overbooked schedule, but hey it's good to have activities on the weekend, besides, her Daddy will be able to go with her so they can share QT (Quality Time), I can then have my own QT and David can see how well Zoé is doing in the class.
I was quite nervous the first time around, because I thought Zoé would be lost, in fact, there is a lot of free play, she goes around exploring, and then there is directed exercises such as the Beam bars, circle time with stretching and warming up, cartwheeling, jumping on the trampoline, climbing the parallel bars, etc. Now, obviously some of the things Zoé cannot do, but she is OK with that, she compensates and has fun, which is what I care about, for her to enjoy, laugh and run around.

Today we had "clinic"at CCS (California Children Services) and we are back with AFOs (Ankle Foot Orthotics). I had somewhat made the decision for Zoé to stop wearing them, for I felt that her feet everted due to the bulky shoes, but both PT, OT and the doctor decided that Zoé looked much better with them, so we are back in orthotics-mode until the next appointment with the PT, we'll then see whether we see a real difference.

It is so funny how I have become quite "blasée" about these clinic appointments. I remember when I was a rookie, and now I feel I have upgraded to the professional league, the mom that takes charge, that doesn't ask a million questions, because I know the answers, etc, so it went pretty well.
The hard part was that we had to eat a sandwich in the car on our way from Zoé's class to the clinic, for we had no time to stop in between places...I have come used to what Zoé likes to say "On picnic dans la voiture" (We picnic in the car), the problem is that Zoé is such a gourmet that she is not too keen on PBJ (Peanut Butter and Jelly) sandwiches, so she eats crackers and cheese, I end up eating her PBJ, which was actually what I craved when I was pregnant...

Well, I want to rest for a few minutes before the laundry machine beeper wakes Zoé up. We are going to go blow bubbles and draw with chalk in the backyard before the weather changes.
A bientot on the blog!

The picture: Zoé is chilling after a hard days work...loving Ariel, the Little Mermaid.

Fun Weekend in Santa Cruz and Mom turns 39...

Psychotherapy 101

A lot of things to share before Zoé wakes up from her nap.

The big news: I finally decided to see a therapist. After months of being in denial, "No, it's not me", "I will get over it", I decided that I needed to face and confront my sadness and many losses. It has been a slow road to recovery from having lost Dad and I feel as if time doesn't help. I know I have to face my grief and open myself to the big gaping hole that I feel in my stomach, it is like a permanent ache.

I told the therapist all that had happened since Zoé was born, and even before she was born: the three IVF cycles, the trauma of not knowing whether they would work, the fact that she was taken away from us at birth, the months and now years of therapies, the question of whether we will ever have another child or not, our fears, the loss of physical health, and then losing both dad and David's father.

I need to look at health and in it, I see HEAL, I am on the road. The therapist I saw was wonderful, she was open, she let me cry out my pain, and sadness and slowly gave me tips to recover. Her ideas are how to heal through creativity, how to build one's sanctuary, a sacred place to go into the grief, and to learn to disengage from everything. To build a shrine that I will dedicate to dad, to create it and to dedicate myself to it 10 minutes a day, so that for this short time slot I can close my eyes and feel what's going on in my body. Like meditation. I need to think about my regrets, write an ongoing letter to dad, letting him know how I feel. I need not be afraid of the power of grief, though at times I might be scared.
"Death is not the end of life, it is the beginning of a relationship".
I had an amazing dream this week, of finding old pictures of dad, but pictures that were taken from behind him, I could only see his hair, his back. I know what it meant. I want to see him but I cannot, yet from deep down in my psyche he came to see me, he is still in there, with me.
Where the psyche feels contained, I need to release the pressure. The therapist told me that dreams are like gold. As the alchemist working with dark matters, from within he can extract the gold. My dreams are my nuggets, I can, through imagery, find the way towards my journey to recovery. I have to meet my grief before I can move on.

I will never forget the day the doctor came into my room after having given birth to Zoé, the next day, when he said: I hate to have to say this, but Zoé is not going home with you. We don't know what she has, but she cannot go home, she must be sent to the NICU", I will never forget the feeling of extreme loss, as If I had just been pushed off a cliff. I felt helpless, hopeless and then gradually I adjusted to seeing her in the NICU, with the beeping sounds, the glaring lights, the smell of the soap we had to use to scrub our hands, the antibacterial gel we had to add, and there she was vulnerable, sleeping, limp, like a little doll, a rag doll. I think, once she came home, I didn't quite fully recover but I took charge, I got her into the early start program with therapies, at the hospital, in a private physical therapy clinic, and ever since that day I haven't stopped. Seeing that psychotherapist enabled me to pause and reflect. To see where I started where I am now and how I need to embrace all these raw feelings of loss and use them as transformative tools to become stronger.

On a different note, Zoé was invited to a birthday party on Sunday and it was a little ballet class, where the little girls swayed and bowed and rolled, and curtsied, and there was my Zoé, trying to follow the instructions, doing a good job at it and again a reminder that she won't be a ballet dancer, but nothing will stop her from moving her body, perhaps tap dancing, for she loves to emulate Happy Feet, the penguin, who is different from his kin and goes off to find his way.

He's probably Zoé's favorite hero! but then she is now into the princess mode...pretty in pink.

Well, I just thought I would fill you in on the latest, the big move towards my psychotherapy 101 course.
I am also reading a book one can find on the psychology/self-help shelf in the library "Losing a Parent" and it is quite enlightening as it highlights the many questions I have.

Voila dear readers, that is it for now. I was too eager to fill you in on the latest, I couldn't wait until tomorrow, my day off, to do so.
I wish you peace of mind and much love.

Yerba Buena Gardens

Another therapeutic essay...

You are back
through the lens of my computerized image
I crop you and edit you
sepia, black and white
blurred edges, antique effect
and for a split second you are back.
I feel that I can tweak you into reality
I can Google you and Facebook you
and you are there
frozen like a fragment in time
and then I shut the computer off and you are gone again.
Though I can revive you every time I see the Apple
the apple of life
the forbidden fruit I choose to eat
so that I can open the kaleidoscope of memories.
Beautiful day in the gardens of Yerba Buena
I can remember the music, the sights and sounds of that magical day
in time.
I miss your smile
your laugh, so discreet and humble
the twinkle in your eye
I am told I was the apple of your eye.
Now I am alone
left out.
Sadness seeps into me
like the dampness on a cloth,
oozing out in porous holes
into which I fall every time I try to bring you back,
for you are gone.

Spring Cleaning

We are already in March, springtime is around the corner and with each day another set of challenges. Zoé is sleeping, and I should probably do so myself. I feel that extreme fatigue is creeping, but then friends of mine tell me they also nap. Makes me feel good to know I am not the only one out there who desperately needs to catch some ZZs.

Zoé is doing well in school, and OT (Occupational Therapy) is smoothly coming along.

Physical Therapy makes me feel so aware of how much Zoé works, especially when I see how hard it is for her. Her therapist pushes her, and I am for ever grateful, but I do hope Zoé will manage to overcome her weaknesses and progress without being hurt. She often complains of her back, and how it aches, and her neck and her shoulders. I feel the same weak spots as well.

Today I went on a 5-mile walk with 3 other Piedmont moms and it was great to feel that I could keep along. Chatting about life in CA, our kids and our families.
And then while I was waiting for Zoé to be done with her OT session, I watched 3rd graders leaving the classroom onto the field for their Physical Education (PE) class. I could just imagine Zoé in an adaptive PE class. I wonder what it will be like, how it will make her feel, to be singled out, to be yet again, different.
These are little nuances I see and imagine. Being part of the uniqueness and the oneness of life.

For now she's my miracle and a driven, strong-willed little girl that doesn't get fazed by anything. Nothing seems daunting, stairs are hard but she manages to get up there, to the top. Speech therapy is another class that she makes fun by bringing a little stuffed animal. She has him do those bilabial sounds with her. At home we play with a toy microphone and I pretend to teach the fuzzy creature how to make Bs, Ps, and Ms, and how ARTICULATION is important to be well understood.

I guess I'll go rest in the sunroom with a good book and a hot cup of tea.
Enjoy what is left of the week and have a fun-filled w-e.

Poetry in Motion

As part of my therapy, I write a lot. On the blog, off the blog, poems, of things I see, hear, touch, taste, and feel.
I hope you'll enjoy...


Beggar

To think that in a small way I hold his destiny in the palm of my hand.
He looks like there is nothing he can do or say.
begging for a small token, a dime, a quarter, a penny.
Anything that will enable him to move on.
Dirty, cold, haggard, despised by all that see him.
In the warmth of my car,
at a red light I see his face
and then mine
and all the pain that he feels, in the split second it takes for it to turn green.
I move along
like the herd, but feel for him.
I could have handed an outreached hand,
a bill, folded and neatly pressed.
Instead I decide that time is pressing and I have no time to stop.
He has all the time in the world.
The clepsydra, the solar quadrant, the sun and moon are the only ticking devices
that define what his world is.
Nothing else matters in the grand scheme of things.
He haunts me.
I could have, should have stopped.
Volition that was unaccomplished.
His despair seeps through his body and soul,
and I feel it still today.
Why didn't I help?