Monday, January 21, 2013

Nostalgia and the walk down memory lane

I have been thinking a lot lately about life and how it has molded our daily experiences. As we decided to de-clutter our basement, we started emptying boxes and revisiting the "past" , and what was supposed to be a cleaning, fresh-start-activity turned into a walk down memory lane, with old photos, baby clothes we still keep, Zoé's first little hat worn in the neo-natal intensive care unit after birth, her first onesie and the nostalgia of how far it all seems.

I am still working on the mourning of not having another child, the loss of the sibling Zoé will never have, the filial ties she will never know. By that I feel that she will be left alone when we are gone, and it now scares me more than anything. She depends so much on us, on our strength and our trust in her.

Zoé is a trooper and I don't write it lightly, she has come from so far. While I opened boxes, I touched the old helmets she used to wear, the old, tiny AFOS that kept her feet from touching the ground, the tape we used on her face and feet, the old toys, her first rattle, her first wooden toy. Nostalgia is hurtful at times.

I am still concerned about her hyper activity and her "disease" I call: Toucharia. Yes, Zoé needs to touch everything. We go to stores and she has this impulsive, uncontrollable need to touch everything. It literally drives me crazy.
I have to then go behind her to put everything back into order.
On the side,  a short anecdote about this mother I heard tell her two daughters in a store: "Now, remember girls, museum hands, please!!!!" I cannot even fathom taking Zoé to the Louvre ;-)

Lately, Zoé has been up every night, for no apparent reason, so we have a wake up call at 2:00 am, at 4:30 am, and then our snuggle bug manages to crawl her way into our bed....I love that part when it is 7:00 am or 8:00 am if we are lucky.

I just finished reading this book by Anne-Dauphine Julliand, Two Little Steps on wet sand (Deux petits pas sur le sable mouillé).  This amazing woman blew my mind. Her daughter was born with what is called:" leucodystrophie metachromatique", basically a disease that will eventually strip her daughter of all 5 senses and she will die within three years. Not only did the mother blow my mind, but her daughter who month after month loses her senses, they face adversity in such a graceful manner and it is LOVE that conquers all.

What their daughter, Thais, teaches them and taught me, is that with love one can overcome the worst. The daily struggles that the parents have to surmount are not those of the children, they know no other way.
Zoé, like Thais, doesn't know the when the how the what. They are two little girls that live their daily life cherishing every moment of it. This book also highlighted the chance of having Zoé and how far she has come and how far she will go. By her endless determination, her drive to conquer her daily obstacles, her will, her joy for life.

I highly recommend this book, it has been a true eye-opener. Life is worth living and one should not WASTE any time, live, run, cry, cherish, laugh, and most importantly LOVE for no one knows what tomorrow will bring.

I actually felt nostalgia after reading the last page of the book. It was a journey worth every word.

Till the next post, I send my love.

Friday, January 4, 2013

Happy 2013

I hope this finds you all well and rested after the holiday festivities.

May 2013 bring you all that you wish for, as well as health (most importantly), love and peace.

Our Thanksgiving - Zoé's 5th birthday - Hanukkah - Christmas and New Year's bash were wonderful and quite relaxed.
It felt good to stay home and enjoy the season. 

Zoé's big move was: a new room and a new bed. Since she is now officially a "Big Girl", we treated her to a new set up.

She is still working on potty training, but has gone to bed every night without a diaper, which has literally changed my life.
I haven't been missing the diaper aisle at the supermarket, let me tell you ;-)

We still need to work on "leakages" as she calls them when they occur. Life on Miralax (Laxative/stool softener) is not easy and little leaks happen.

Zoé enjoyed the holidays and is awaiting school to start.

She is still in full mode therapy: 

Speech x2/week: working on lip closure, oral motor stretches, bilabial sounds and a.r.t.i.c.u.l.a.t.i.o.n

Occupational therapy 1/week for 45 minutes as opposed to twice a week for 30 minutes.

Physical therapy: working on transitioning from floor to stand, walking up and down stairs, tricycle and ball catching.

Horse therapy: once a week at the covered arena, we  will start the next class in February (outdoors)

Choir: once a week, as our little soprano loves to sing

We still need to work on social integration and that will come in time. Zoé is still quite aloof when in a large group. She has a hard time being surrounded by big boisterous groups, which will be a concern next year when she goes to school and is in a class of 24 kids; but as I like to say, we'll cross that bring when we get to it.

As for me, I am now working which has been great, despite my physical limitations that occurred almost over night. It is amazing to see how my body has changed, my gait, and general stamina.
I am trying to be as active as can be, doing weekly pilates with an instructor and massages every other week.
My calves have become really weak and atrophied, so massages help for the soreness.
I try not to dwell on the situation despite the fact that I will have to get rid of all my beautiful high heel shoes. Not that I wore that many, I can no longer be on tiptoe!

Voila dear bloggers and followers, these are the latest news.
Next appointment: neurology department at Stanford's Lucile Packard Hospital for Zoé's annual neuromuscular clinic. Dr. Day, whom we adore is in attendance and always a wonderful advisor. I don't know whether I told you, but Zoé doesn't sleep with her AFO's anymore. She decided that she didn't need them. Her rehab doctor said it would help, her foot surgeon said it wouldn't change a thing.
Zoé had the last word!

I'll be back in school (college) in February for my last course on Early Childhood Education, after which I will have completed my 12 units required by the State of California to teach in a preschool or with young children. Loving being back as a student. The brain is slower but I love the challenge!

Many warm hugs and much love coming your way, wherever you are.
The Cake!

Hello there!

Loving those cupcakes

I'm singing in the rain

 my ornaments

Christmas cookies at our baking party

The Big Girl Room