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.