Saturday, December 25, 2021

An Orange in my Stocking

 An orange in a stocking is said to represent a gift of gold from Saint Nicholas. Growing up, my brother and I always had a candy cane, a chocolate and an orange in our stocking. I never knew the meaning of the orange and honestly always found it quite odd. Stockings were not a big thing by any means in my family.


As we started to have children, we mixed traditions from both families and the stockings took a whole new dimension. Quantity over quality, source of stress and anxiety. Finding stuff, wrapping it, making sure the stockings are overflowing, and spending on unnecessary items. I have lost sleep over this.


Things took a different turn this year. For the first time, my children have had to split themselves between their parents. I feel sorry for the guilt they are feeling when they are with one parent and not the other. I have experienced anxiety over these holidays and wished they would never come. I am sitting here alone on this Christmas morning, not something a mom of nine would ever have imagined.


I must admit I am at peace as I reminisce over Christmas eve and early this morning with my beautiful bunch. My older daughters are absolute gems and have been pillars through this all for their younger siblings. Smiles, laughter and hugs brightened my little place up. Of course, behind the smiles there is a whole lot not being mentioned. You quickly learn to shove the dust under the rug to keep a good face in spite of your heart being in pieces. My kids need me, they need me to remain strong for them.


My children and I are now making new memories, building new traditions. Maybe the time has come to renew with long lost traditions and go back to a more minimalist approach. The stockings here were not as full as they once were, and it was deliberate on my part. I decided I was not going to try to keep up with the Jones, that I was going to spare myself from the Holidays' extravagant frenzy.


The biggest lesson of this new normal came from my son who insisted with his sister that she put an orange in my stocking. This young lad made a point, a loud statement without even knowing it. I know very well that my children have a good basis laid down and that with understanding, love and a lot of acknowledgement of their feelings we will get through this together. 


Son, thank you for being who you are. Thank you for showing me that you know what is essential in life.


Wednesday, August 28, 2019

The Sound of the Cicadas

The Sound of the Cicadas

Waking up to the bustling of my mother preparing ‘’the picnic’’ for a day at the cottage is one of my most precious memories growing up.

***

My brother and I grew up with an extension to our family of four: mom and her slightly older sister having been like two peas in a pod their whole life, it was only logical and natural for the two families to mingle and do so much together. Although different in so many ways, the two brother-in-laws were closer than brothers could ever be. There never was any open disagreement between them, and my uncle being such a wise man could always find a way to connect with dad in difficult times when everyone else would give up. Best friends until the very end, they are now side by side at the columbarium, each in their pigeon box, patiently waiting for the love of their life to join them. I grew up with three additional ‘’brothers’’: the oldest was soon on the outside, preceding us in the normal flow of life, graduating from university way before I could spell it and showing up at the house with his brand new Renault 5. The middle boy was the same age as my brother and the two of them could write a book about their many complex adventures: playing strategy board games for hours, butterfly hunting afternoons not always ending so safely, and bike excursions requiring advanced planning, to only name a few of the plans those two brains could come up with. The youngest was my age and soon displayed as much patience as his father, tolerating the bossy me and bending to my many girlish play expectations. These three cousins are now righteous grown men traveling the same path my brother and I are on, caring for their mother afflicted with Alzheimer’s.

The cottage was not ours. It belonged to my aunt and uncle. We visited several times during the summer and cross-country skied over during winter. Located in Sainte-Catherine-de-la-Jacques-Cartier, this log cabin on stilts, bordering a small lake filled with trout, was separated from the main drag by a dirt road and a gully, which became inaccessible by car during winter. These ski adventures in winter were just as enjoyable as our summer days visiting aunt Paulette, uncle Claude and the cousins.

I can close my eyes and vividly remember the days filled with simple pleasures spent in this secluded haven. The fire was comforting in winter, as we would eat the lunch my mother had packed for us: a sandwich and a thermos of warm soup. With rosy cheeks and toes barely thawed out, the children would run back outside to explore the surroundings and try to find animal footprints in the fresh snow, while the adults would stay inside and chat, enjoying the warmth of the fire burning.

In the summer, we spent the afternoons by the lake capturing tadpoles and frogs, avoiding snakes (or in my case running away from boys chasing me with snakes), or ‘’boating’’ in the inflatable raft. Maybe once or twice a summer, dad and uncle Claude would actually leave the comfort of their chair on the veranda of the cottage to come join us at ‘’the beach’’ for a dip. I loved when my very tall uncle carried me on his shoulders, thus giving me a whole new perspective on life from up above, or hold me when I tried to walk on the unsteady split-rail cedar fence. 
The tension would rise as the day went by and the older boys levelled the golf croquet ‘’field’’ for the traditional game after supper. They would rake the sandy space with care and fend the playing field from people walking through until the game took place.

How I loved the quietness of this cozy place surrounded by the forest, where occasionally, a woodpecker would break the silence, pounding at a tree I would try to locate to see the culprit in action. Otherwise, the only sounds breaking the stillness were the children’s laughter as they played in the water, the wooden mallets striking the balls and followed with joyful cheers or the crickets waking up at dusk.

But there was more… I never realized at the time that the one sound of nature that would have the power to bring me back to all those memories and make me long for the days of my childhood innocence is the sound of the cicadas. This long and increasingly powerful crescendo heard on warm summer days, reminding us that summer will soon come to an end. 

A busy life, my mind racing a hundred miles an hour, making me unable to stop and appreciate the present moment. Even if the present is not quite what I wish it was. Running away from the present, longing for a past that no longer is or could never be, and worrying about what the future holds. The power this harmless insect has on my subconscious with its lament, bringing me to revisit the past with such intensity. A past I can’t change. A past I can’t go back to. A past I must draw lessons from to fuel the energy to better my future.

***


Friday, January 4, 2019

La table de cuisine

Table: Nom commun, féminin. Meuble sur pieds offrant une surface plane et destiné à un usage déterminé.

Couchée béatement sur le dos sur la table de cuisine, alors que ma mère me changeait de couche: voici mon tout premier souvenir, d'aussi loin que ma mémoire me permette de remonter dans l'échelle du temps. Âgée tout au plus de deux ans? Je me souviens de la boîte jaune à mes côtés, affichant l'image d'un beignet sur une de ses façades. Je crois bien qu'il s'agissait de fécule de maïs.

J'ai grandi au sein d'une famille canadienne française bien typique. Nous prenions place autour de la table de cuisine à chaque jour et avions l'habitude de flâner après le souper. Nous n'étions que rarement pressés de nous lever pour nettoyer. La vieille table ronde en érable à pied central (la même table à laquelle mon père avait pris place en grandissant) était l'endroit de prédilection pour entendre mon père nous raconter ses histoires drôles -et parfois moins drôles- de son jeune temps dans la campagne des années 40, sur la rive-sud de Québec. On entendait toujours les mêmes histoires, avec les mêmes personnages, mais nous ne nous en lassions jamais. Le grand conteur qu'était mon père arrivait à nous faire rire aux larmes, ajoutant chaque fois de plus en plus de détails à ses histoires. 

J'ai vraiment cru, du temps de mes études primaires,  avoir été en proie à un traitement injuste et avoir enduré des abus totalement non justifiés, assise à cette même table: après chaque jour d'école, ma mère me faisait faire des travaux supplémentaires en mathématique et en analyse grammaticale; elle ne faisait pas confiance au système scolaire québécois des années 70 et j'en ai payé le prix. Je lui dois mon plaisir à valser avec la langue de Molière et la maîtrise des tables de multiplication dès mon jeune âge.


 
Le temps est un jour venu de quitter le nid familial pour poursuivre mes études à l'extérieur. J'ai vécu dans une dizaine d'appartements différents, parfois avec des co-locataires, parfois seule. Mais d'une façon ou d'une autre, ma contribution au ménage était toujours la table de cuisine. Avec des chaises si on était assez chanceux. Des chaises achetées pour peu cher. M'accommodant d'abord d'une vieille table en bois ronde et laide avec quatre pattes, achetée dans une ressourcerie pour $10, je me suis ensuite ''gâtée'' chez IKEA: un plateau de table rectangulaire blanc monté sur quatre pattes en métal vissées. Enfin le ''style contemporain''! Comme j'étais fière. Je me souviens avoir dû quémander l'aide d'un ami avec sa perceuse puisque je n'y arrivais pas avec mon tournevis d'occasion. C'est à cette table que j'ai rédigé mes premiers bulletins en tant qu'enseignante. J'ai échangé bien des confidences à cette table en buvant du café. Mes amies et moi nous sommes fait d'innombrables petits soupers accompagnés de vin acheté au dépanneur du coin. Si cette table pouvait parler...

Puis ''je'' a fait place à ''nous'' quand Michael et moi nous sommes rencontrés et avons emménagé ensemble sur un coup de tête. Je ne recommanderais ceci à personne en passant, surtout pas à mes enfants: apprendre à se connaître en jouant à la maison n'est pas l'idée du siècle. L'heure avait sonné d'apprendre à mettre de l'eau dans mon vin. Je dois admettre que je n'ai jamais été la championne des compromis, pas même maintenant. En fait, je crois être de plus en plus intransigeante avec l'âge. Ce qui m'a tout de même rendu service à bien des occasions. Mais pour en revenir à la table, nous avons convenu de l'utiliser comme espace bureau. En toute honnêteté, le gars est arrivé avec une bien plus belle table:    je me suis retrouvée assise à une table ronde à pied central. Cette pièce en bouleau de chez Bass River lui avait été donnée par ses parents. J'ai même pris le temps de lui refaire une beauté pour effacer ses années passées dans un appartement de gars.

On a eu du bon temps assis à cette table: avant les enfants, on avait coutume des jouer au Skip-Bo pendant des heures après le boulot le vendredi,  en fumant un paquet de cigarettes. C'est à cette table que j'ai eu mes premières nausées (oui, j'ai cessé de fumer après avoir pissé sur le petit bâton), puis un jour la table est devenue trop petite pour notre famille bourgeonnante. Et nos ardeurs.

Nous avons fait le grand saut lors d'une mutation de Ottawa à Valcartier en achetant la plus grande table disponible chez IKEA: modèle Norden, 87 pouces de bouleau messieurs dames, avec une rallonge de 20 pouces par-dessus le marché. Nous n'en verrions sûrement jamais le bout! Et voilà, papa, maman et deux enfants, avec une troisième peu après assise au bout de la table dans son siège de bébé, à se dire qu'on avait vu un peu grand. Une table bien trop grande pour notre logement militaire, égale à nos ambitions. Durant notre séjour de trois ans à Valcartier, notre maison est devenue le lieu des rencontres familiales durant les Fêtes. Au quotidien, avec la famille sous l'effet popcorn, la table servait de lieu pour devoirs-pliage-couture-bricolage-station de premiers soins, alors que le dessous devenait tour à tour une maisonnette ou un autobus. Ils se sont tous frappés la caboche sur les coins, un rite de passage, et ont tous survécu avec peu de séquelles.  
Monte sur mon autobus!

Mon défunt père et mon aînée, Rose


 




Quelques années plus tard, notre famille de 11 s'est agrandie suite aux greffes de foie avec Kris joignant nos rangs, et la présence fréquente d'amis fidèles toujours prêts à partager un repas avec nous, pour notre plus grand plaisir. J'aime quand mes amis se sentent bien dans ma maison. Je suis retournée sur le marché du travail il y a quelques années, et j'ai la chance de travailler de la maison, en prenant toujours soin d'empiler mes papiers à un bout de la table. Oui, je suis du genre à m'étaler dans mon désordre de paperasse. En conséquence, moi, la reine du foyer, me suis retrouvée à manger debout plus souvent qu'autrement. Cette situation ne perdurerait pas en 2018. Maintenant que je récoltais un salaire, j'ai décidé, en dépit du front de résistance familiale, d'acheter une nouvelle table.

Ce monstre en érable, couleur d'ébène, d'une longueur de 96 pouces (144 pouces incluant les quatre rallonges) fit son entrée. Cette table allait nous achever, comme un mauvais sort jeté sur notre famille. 

Notre famille est passée au travers bien des écueils en 2018. Et comme j'ai tendance à être un tantinet irrationnelle, aussi bien blâmer la table.

A peine janvier entamé, ma fille de 16 ans a fiché le camp suite à une chicane entre elle et moi. Voilà: la grosse table de cuisine à moitié vide me faisait le doigt d'honneur, en me rappelant jusqu'à quel point je peux être intransigeante.  La nouvelle liberté de ma chère fille est vite devenue un fardeau pour elle, surtout quand les fonds se sont épuisés et que les ''amis'' ont insisté qu'il y avait des règles à respecter, tout comme chez papa et maman. Elle a trouvé refuge chez mon amie, le temps que nous lavions notre linge sale... Je remercie mon amie d'avoir joué le rôle de maison de transition pour quelques semaines! Ma fille est revenue à la maison un certain soir, après qu'on l'ait presque perdue des suites d'une réaction anaphylactique causée par une infusion de Remicade pour son arthrite. Même si en surface la situation a eu l'air de s'être replacée, les choses ne sont jamais revenues comme auparavant. Des relations entre frères et soeurs, une fois brisées, peuvent prendre ce qui peut sembler comme une éternité à guérir. Et je sais de quoi je parle. Ma fille est ressortie grandie de cette expérience et a appris à faire des meilleurs choix. Mais quand le train déraille, on ne peut l'arrêter. Mon aînée est partie étudier au collège avec comme focus principal d'avoir son espace bien à elle. ''C'est normal'' me direz-vous. Oui, jusqu'à un certain point. Je ne me suis jamais préparée à voir mon nid se vider. Le syndrome du nid vide. Paradoxal quand je pense à quel point je suis découragée que les plus jeunes n'auront que huit ans en mai. Il y a de ces jours où je voudrais les avoir encore tous à la maison, et il y en a d'autres où je ne vois pas la lumière au bout du tunnel.

Je crois sincèrement avoir pleuré chaque jour en 2018. Pleurer me soulage. Je pleure encore la mort de mon père il y a presque quatre ans et je tente d'accepter la perte de la mère que j'ai connue. De longs au revoir.
Je préfère vivre mes émotions seule. Je visite ma mère régulièrement seule, à six heures de route de chez moi. Je visite mon père au mausolée, seule. J'ai besoin de moi plus que jamais, de ramasser mes morceaux éparpillés à force d'avoir été une bonne mère et une bonne partenaire pendant toutes ces années. Je veux me reconstruire. Qui suis-je donc au fait?

Cette nouvelle table est comme une épine au pied, un constant rappel que ma famille et mes relations avec plusieurs sont brisées ou du moins changées. J'avais beaucoup d'espoir en achetant cette table: l'espoir d'y voir rassemblés mes enfants et leurs partenaires, leurs enfants, tandis que mon meilleur ami et moi vieillissons ensemble.

Rien n'est certain en ce bas monde. Les gens sont en constante mutation et les circonstances de la vie ont un impact sur notre façon de se percevoir et de voir les autres. 

Devrais-je vendre la table? Est-ce que ce serait la solution à tous nos problèmes? Je n'ai pas la réponse. 

Mon aînée est venue nous voir la veille de Noël. J'ai pu la serrer dans mes bras et la voir rire avec ses soeurs. Tous mes enfants sous un même toit et personne ne s'est opposé à ma demande de prendre une photo de famille. Kris n'y étant pas, la photo semble incomplète. Ma nouvelle amie, ma voisine, ma soeur a pris la photo pour nous et je l'en remercie. 





Je tourne le dos à 2018 avec grand plaisir. Je demande à 2019 de m'aider à réparer ce qui peut être réparé. A chacun de vous qui devez prendre soin d'un être cher qui est soit malade ou dans le besoin, je souhaite le courage et la force de persévérer.  

A chacun et chacune de vous, je souhaite une année 2019 remplie de succès: veillez à conserver ce qui vous est cher, et trouvez la force d'aller chercher ce qui enrichira votre existence. Répandez le bien autour de vous et évitez la haine à tout prix.


En passant, j'ai dû commencer à jouer un nouveau rôle en 2018 auprès de ma mère qui est atteinte de la maladie d'Alzheimer. Les rôles inversés? Les tables de multiplication n'ont plus aucune importance pour elle, et puisqu'elle n'est plus en mesure d'écrire, la grammaire est passée aux oubliettes. Nous avons dû prendre la décision de la déménager dans une aile plus adaptée à ses besoins sans cesse grandissants. Malheureusement la vieille table familiale était trop grande pour l'espace restreint. Soucieuse de lui offrir un nouvel endroit qui demeurerait tout de même familier, je lui ai acheté une table usagée à pied central, plus petite. Un ami au grand coeur l'a réparée pour nous. Je doute que ma mère se soit vraiment rendu compte du changement. La table familiale de ma jeunesse est désormais dans mon garage, en attente d'être assemblée de nouveau pour partager les souvenirs heureux qu'elle cache en elle.

Nous sommes Twins for Hope, un organisme à but non lucratif qui s'est engagé à venir en aide aux enfants et familles dans le besoin au Viet Nam. Notre but principal est de les aider à gagner accès aux besoins de base de la vie quotidienne: éducation, abri, soins de santé, tous menant vers la dignité humaine. Nous accepterons volontiers vos dons via Paypal.

Merci de suivre nos aventures!

Tuesday, January 1, 2019

The Kitchen Table




Table: Noun. A piece of furniture having a smooth flat top that is usually supported by one or more vertical legs.

My very first memory, as far back as I can humanly remember, consists of me laying down on my back on the kitchen table, oblivious, as my mother was changing my diaper. I could not have been older than 2. I remember there was by my side a yellow box with the picture of a donut on it. My guess is that it was cornstarch.

I come from a typical French Canadian family. We would sit around the table to eat dinner and stay seated for a long time, well after the meal was over. There was no rush to get up and clean up. The old round pedestal maple table (the very same table my father sat at growing up) is where we would listen to my dad telling us funny -and sometimes not so funny- anecdotes from his days growing up in the 1940s in the countryside. We heard the same tales over and over, the same people mentioned, and never got tired of his funny stories. Dad was a good storyteller and could make us shed tears of laughter, adding more and more details each time.

I genuinely believed, going through elementary school, that I did endure unfair treatment and unjustified hardship sitting at that table: mom would make me go through countless hours of extra grammatical analysis exercises and arithmetic every single school day; she doubted the efficiency of the school system in Quebec in the 70s and I paid the price. I owe her my ability to write somewhat properly, and the fact that I mastered my times tables at quite an early age. 

On a side note, 2018 saw me play a new role with my mother who suffers from Alzheimer’s. Reversed roles maybe? Times tables became totally irrelevant and grammar belongs to a distant past as she no longer can write. We had to relocate her to a new floor, more adapted to her ever growing needs and the old family table could not fit in the new location. In an effort to keep things as familiar as possible for her, I purchased second hand a smaller round pedestal table. A kind friend of ours refinished it for me. I doubt my mother even noticed the change. The family table from my youth is now in my garage, waiting to be set up again to reveal its happy tales.
 
Fast forward a few years, I moved out of my parents’ home, lived in about ten different apartments with various roommates or on my own. Somehow, I was almost always the kitchen table provider. It was my contribution to the pot. With chairs if we were lucky. Chairs I would get wherever I could get for cheap. I went from owning a used round four-legged ugly wooden table, salvaged from some used store for no more than $10, to being the ''proud owner'' of a white rectangular IKEA top with four screw-in style metal legs. I felt stylish. I remember my dear friend who kindly helped me screw the legs in securely with a power drill, as my cheap screwdriver could not do the trick. I was proud and happy with my modest purchase. I wrote my first report cards as a teacher at that table. I shared many secrets over coffee at that table. My girlfriends and I had a lot of dinners with cheap wine at that table. If that table could speak…

Then ‘’I’’ became  ‘‘we’’ when Michael and I met and moved in together on a whim. I would never advise my children to do this: not a good idea to learn to know each other playing house.  The time had come for me to put water in my wine. I will admit I never was really good at that, not even today. I actually believe I am becoming worse with age. It has served me well in some instances though. Back to the table, I agreed with Michael and it became a work/computer space. In all honesty, the table the man came with was a lot nicer: back to a round pedestal table I found myself sitting at. His parents had given this birch Bass River beauty to him. I even refinished it with much love and care. 

We had happy moments at that table: prior to having kids we would play Skip-Bo for hours after work on Friday nights, while smoking a pack of cigarettes. I had my first morning sickness bouts sitting at that table (yes, I did quit smoking after peeing on the stick), until the table became too small for our growing family. And for our aspirations.

We bit the bullet while being posted from Ottawa to Valcartier and bought the biggest table we could find at IKEA: birch Norden, 87 inches long (107 inches with extension). Never would we be able to outgrow that bad boy! There we were, four of us and soon after baby Grace in tow in a baby seat at the end of the table, thinking we had seen a bit too big. The table was oversized for our small PMQ but we had big ambitions I guess. While in Valcartier and living close to my extended family, our house became party central during the Holidays. On regular days as the family grew bigger and bigger, our table dutifully became a homework/folding/sewing/craft/medical care station while underneath often turned into a house or a school bus. All the kids wacked their head on the corners, like a rite of passage, one after the other. They all survived with minimal damage.
Hop on the bus!
 

My late father and Rose, my eldest.



Fast forward a few years, our family of 11 turned into a family of 12 post liver transplants with Kris joining the ranks, and friends of the family always showing a keen interest in joining us to share a meal, to our greatest delight. I love when people are comfortable in my house. I reintegrated the workforce a few years back with the luxury of working from home, always cluttering one end of the table with paperwork. Yes, I am a clutter bug when it comes to paper. As a result, I, the matriarch, found myself eating standing up 9 times out of 10. This somewhat uncomfortable and frustrating situation would change in 2018. Now that I earned money, I decided, against everyone in the family, to buy a new table. 

This ebony wormy maple monster of a table, 96 inches long with a potential of 144 inches with extensions moved in. It would become my demise. A curse on my family.

Our family went through drastic changes in 2018. And being the irrational person I can be, might as well blame it on the table.

As soon as January hit, my then 16-year-old daughter moved out on us following a fight with me. There you go: the big table was there, in my kitchen, half empty and giving me the finger, telling me how bad of a hard a$$ I can be. My daughter’s newly found freedom grew old after a while when money dried out and ''friends'' proved to be like mom and dad, i.e. living by some rules, and she found refuge at my friend’s place until we could sort things out. Thanks for my friend who played the role of buffer for a few weeks. We took her back home the night after she had nearly died in the morning from an anaphylactic shock caused by a Remicade infusion for her arthritis. However looking normal on the surface, things never returned to what they used to be. I never could manage to have everyone sit around the table. Relationships between siblings, once broken can be severed for a long time. I speak with authority here. My daughter has grown from this experience and is doing very well for herself now. But it seems like when the train starts derailing it won't stop. Her oldest sister moved out to attend college and to find her own space.  ‘’It’s normal’’ you’ll say. Yes, to some extend. However, I was never prepared for the empty nest to start pointing its nose. Empty nest syndrome, quite a paradox, considering I get so discouraged when I think our two youngest will only turn 8 in May. Some days I would like them all to be home, other days I can’t see the light at the end of this long parenting tunnel. 

I honestly believe I have cried on every single day in 2018. Shedding tears feels good. I am still grieving the loss of my father almost four years ago and am trying to accept the loss of the mother I used to know. These will have been long goodbyes. I prefer to do this on my own. I go visit my dad at the mausoleum on my own and I go care for my mother regularly six hours away on my own. I have never needed so much ‘’me’’ time as I do now, perhaps because I feel I lost myself over time being a good partner and a good mother? I need to gather my own pieces, scattered everywhere. I need to reconstruct my own person. Who am I? 

This new table is the pain of my existence it seems, a constant reminder that my family and my relationship with others have changed or are broken. I had great expectations when I purchased it, hopes to see it someday filled with my kids, their significant others and grandchildren, growing old with my best friend. 

Nothing is ever certain in life. People change, circumstances affect the way you see yourself and others.

Should I put the monster table up for sale? Would it solve everything? I have no answer to this.

My oldest daughter came home on Christmas eve. I got to hold her in my arms and see her joke around with her sisters. All of my nine kids were gathered and no one moaned when I asked for an updated family picture. Kris being away, the picture seems incomplete. My newly found neighbour/friend/sister took the picture for us and I thank her for this. 






I am turning the page on 2018 without any regrets. I wish for 2019 to fix what is broken, in whatever way it sees fit. I wish everyone of you caring for a loved one who is in need or sick the strength to keep doing so.

To everyone of you, I wish a prosperous 2019: work on keeping what you already have that is dear to you, and find the strength to obtain what will enrich your living experience. Spread goodness around you and avoid hatred at all cost.


We are Twins for Hopea not for profit committed to helping children and families in need in Vietnam gain access to the very basic necessities of life: education, shelter, health care, human dignity. We will gladly accept your generous donations through Paypal.

Thank you for following us!

Sunday, August 26, 2018

On Fighting Poverty...

Back in the fall of 2010, I had the honour of meeting Mr. Gem Munro, co-founder of the Amarok Society ( http://amaroksociety.org/wordpress/ ), while he was promoting his organization by selling his latest book at a local bookstore. Mr. Munro had a positive and lasting impression on me. While keeping the wellbeing of their family of four children at the centre of their preoccupations, Mr. Munro and his wife Dr Tanyss Munro ''selfishlessly'' moved their family to the slums of Dhaka Bangladesh to go empower the poorest of the poor: teaching women who in turn would transmit their newly acquired knowledge to the children around them. The Munro children grew up imbibing a social conscience and responsibility and are now very involved with the Amarok Society and its operations.

Fighting poverty through education is no new concept and has in fact been discussed by many scholars. It is a well established fact that poverty and lack of education are inevitably linked in a vicious circle: one living in poverty will be forced to work instead of going to school, being left without the literacy and numeracy skills needed to pursue a career. To this simple explanation can be added cultural and political elements that can be debated or challenged less efficiently with less education.

In this era of globalization, we must wonder why something we so take for granted, the accessibility and the right to education is still so difficult to access in some parts of the planet.



Paying it Forward is the motto of our not for profit organization, Twins for Hope. Since its creation in 2016, we have been concentrating our efforts in Vietnam through various missions supporting vulnerable children. In early 2018 we were presented the opportunity to work with partners to improve the learning conditions for 50 children in Binh Thuan province, south of the country: the total cost of the project covered by Twins for Hope is $15,000 CAD ($11,500 USD).

I can testify that fundraising has never been for the faint of heart. It has involved countless hours of ''professional begging'' on my part and several days away from my family to attend craft fairs and events: focusing on the needs of others in dire situations keeps me afloat and energized, and less self-self-centered. And when helped by my solid team of volunteers, it makes it all better!

I will be leaving for Vietnam in a few weeks to go attend the opening ceremony of our school. I still have to pinch myself as this is all too unreal.

We have raised so far close to $3000. $12,000 are still needed to meet our goal.

For further details on the project, please follow one of the two links below: please share and consider making a donation. Every dollar goes far in fighting poverty through education: there is no better investment.

Thank you,

Johanne Wagner

https://fundrazr.com/frombambootobrick?ref=ab_37HsL8

https://www.gofundme.com/manage/from-bamboo-to-brick-a-new-school









Wednesday, August 30, 2017

Alagille, Noonan, and then JIA...

When you think of arthritis, what comes to mind is something that afflicts older people. A natural part of the aging process I guess. My father had polio at a very young age and I grew up hearing about how sore he always was: ''my arthritis'' he would say, rubbing Tiger Balm or having my mom apply a sore muscle patch on his back!  I can close my eyes and still remember the smell... He claimed he could predict the weather forecast through his body. Having suffered from migraines until childbirth, I can actually believe our body senses the changes in barometric pressure.

My Dear Daughter was a late walker and I remember well her grand-papa being worried because she never crawled on her knees. When she did decide to move, it was commando style crawling. We used to jokingly say she was lazy: she would sit on the floor, point at things and her sweet sister, older by 17 months, would service her complacently. She was the child who would go to her bedroom right after lunch, and sleep until 4h00 pm. And that much sleep never affected her bedtime routine. She was the easiest child. Looking back now, I am wondering if she did not live with pain much before she started complaining. We will never know. 
It's at the age of about 8 or 9 that she started to complain of knee pain on a regular basis, which we unfortunately mistakingly took for growing pain. And then she went through quite a growth spurt at the end of elementary school. She used to be quite active, but would constantly complain.
It took a bad turn during the summer when she was 12: I remember her being unable to move or go up the stairs. Dear Daughter having a tendency to be a wee bit dramatic, we thought at first she was acting up. It became clear she was not. After a quick visit to the paediatric orthopedist and blood work, we were quickly referred to a paediatric rheumatologist. They first suspected Lyme disease, then lupus, mentioned fibromyalgia...  What we did not know is that she had experienced her first flare.
We ended up seeing a rheumatologist in Kingston on a regular basis. Two years later, after many visits, blood work on various occasions, and a MRI, the diagnosis of Juvenile Idiopathic Arthritis (JIA) with Ankylosing Spondylitis (AS) was confirmed. It's not easy when you're 15 to see your dreams shatter. It hurts when you're 15 and you just got a diagnosis and you're crying, to see your so called friends dismiss you and think you are just trying to get attention. It's hard when you're 15 to be made fun of because all your joints are swollen and you can't move like others. It's hard to be 15 with a disease you can't forget because it hurts constantly. It consumes you, you become angry and you can't think clearly. And yes, you make mistakes.
After the process of elimination going through a course of Naproxen, then Celebrex which both did nothing, we moved on to biologics drugs with etanercept. This was not a decision we took lightly, as the risks and side effects can be quite scary.
My brave girl learned to self inject (that took courage) and did so for 8 months, with no results and inflammation creeping up into every single joint of her body.
The specialist came to the conclusion, after another MRI that the medication had done nothing to keep the inflammation at bay, and that in fact we were losing ground...
Today, my brave girl started IV infusions of infliximab. Those 2 to 3 hour long sessions are to take place every couple weeks initially, to hopefully end up at 8 weeks intervals, for as long as we can think...
  
We put a lot of hopes in this treatment. I want to see my girl shine and able to be herself. I wish to see this disease and the deterioration of her body kept at bay so her dreams may come true. So she can keep playing guitar, drawing, and doing the amazing things she has in mind for the future.

Tuesday, August 29, 2017

Losing Your Authority

While my thirties and early forties were all about creating a family, I always had the distinct feeling those happy moments would be replaced by less happy ones further on. I was anticipating my fifties would surely be marked by the loss of my parents. It happened before, sadly.

Dad passed away 2 years ago, weeks after the transplants ordeal was over. I felt I had been hit by an eighteen wheeler, miraculously surviving, to finally be able to get up and stand on my feet to be hit a second time around, in complete dizzyness. Some days, it still feels like I am trying to pick myself up.

Dad and I sure have our history of disagreements and tumult. You can't undo the past, I found it the hard way. You can't unsay what you've said, you can't unhear what was said to you. However, I can always find comfort in the fact that the apple did not fall far from the tree. Two very opinionated people, one standing on the right, one standing on the left, you can only expect clashing to happen. As dementia took a hold of him, it became boring as him and I would not even argue over politics anymore. He just lost interest in everything.  Dementia stole my dad away from me. But it never took away his love for me. As he became more and more affected by the illness, I saw this vulnerable man replace the man I used to fear. The man whose phone calls at supper time (to dictate me how to raise his grandchildren he loved so much...!) I would avoid with exasperation as I was busy with so much happening. I met a new person in his last years of life. I met a man who would develop unconditional love for his adopted grandchildren. It was never a concern with my biological children. But dad took me by surprise, letting his guards and prejudice down to see the beauty of children in need.

I miss his phone calls. I miss hearing him telling me how proud he was of me, how I reminded him of his own mother. I used to dismiss him and roll my eyes in silence. All that is left are the memories now. Our last phone call was two days before his passing. Binh was still in hospital receiving blood transfusions, while he was as well receiving transfusions 9 hours away. I told him she was fine, and I know he understood. I assured him I would always be there for his grandkids, and I know it comforted him. I told him I loved him, and he returned the same to me. And I knew this was our last conversation.

My mother survived him and is now by herself, fighting the demons of dementia as well. I feel horrible living far away. I feel guilty not being there more for her. I feel caught between my duty as a mom and my duty as a daughter. We talk every single day. The conversation always goes the same way. But somehow, it seems new to her. I keep things simple. Because it is the way it has to be. I have no immediate family anymore. No one who saw me growing up I can talk to about the real things. About my worries. About my accomplishments. About childhood memories, good and not so good.

I have no one to fear anymore. I lost all my figures of authority.