Today is the last day of 2009. What will bring in 2010?
I think it's never too late to sit and think about everything that has spent the last 365 days and which will be the project, hopes and wishes of the next year.
few days ago was the day of the Holy Innocents and a television program reflected the life of a boy named Joseph and who suffered from cerebral palsy about 13 years. Taught us how to live, what difficulties had every day, how much help he offered his father and his two sisters and her mother had MS and not much I could do to help. On one hand I was very touched that boy's testimony because it showed up where you could go with a mixture of affection, tenderness and effort and will. On the other hand, I got angry because the programs television, governments, municipalities, politicians, ... seem to just "use" the vision of disability during the holidays to attract curiosity, feel sorry and give a touch to the pockets of the people and that there be solidarity. The same goes for donations to sponsor third world children, what happen the other 364 days a year? Why not get the notice "Sponsor a child" after the newscast at noon and before long? What we have to feel guilty just at this time? Or is it that we are more sensitive only at Christmas?
More than once during the year I had to give a warning to certain people or services because he was not all satisfied, tired of false hopes and promises of shoddy and I wrote to finish one of many writings
"To say goodbye and thank care provided we want to meditate please reflection that often give us asking for help, "the brown ,..., one way or another we eat it all" or "do not send us." These people who answer us so do not doubt that they are human, good people and defenders of their values \u200b\u200bbut when they finish work and leave the coat of gigs in the office, his tie loosened or removed heels to get home or go for a drink with family or friends, and are only getting a "granite" brown. The worst part, the oldest, most bitter, the hardest, most difficult to assimilate into a normal routine of a normal person, that if you really have to call 24 hours ... that we advance to us as an inheritance without notice notarial us parents of these beauties. Politicians, managers, people in power ... plan projects, make decisions (whether or not) appropriate to your system but do not have them in the flesh. Everything stays in some papers. We have some special children. "
With this reflection I "Shouting" here we are, at the foot of canyon 24 hours a day 365 days a year. Some of us are not even right or ability to take that half hour a day as psychologists advise us to dedicate ourselves (even locked in the bathroom with a magazine) or perform a hobby. Live by, earrings and our children because we have to remember that in many cases is not only the disabled child at home, but a brother or sister who needs as much or more pampering, or care not to feel always in the background. I'm not angry with the situation because I passed that stage and I must confess that my body and my mind are little behaving like an old man who is mobile is vitiating the battery and then are not so operating. Never mind that my "vests all" is a bit weak after so many battles that I lived and played back to reinforce it with a good layer of steel.
Here I dare to tell a story that has happened in the month of November. As you know Neil is the dependent and called me from the Xunta because during two evenings were a crash course for caregivers of dependent and even more so in the matter. We were about 20 women (because in truth is an essentially feminine role!) But mixed people who cared for older people beat down mothers like me with 5 children. Assistance, care, ... Everything changes because you tell me the moment I do not need to know every few hours you have to change positions a patient in bed. But he had to listen because you never know, I always say that you always learn something. When the course started to say that a unit be well cared for, first and foremost the caregiver had to be 100% physically and psychologically there and began to "bother" much theory because after all we we are licensed in the field. Kindly said we had to have a social life, going out and not focus exclusively on the patient. What a laugh! because much to my regret, if I gave the reason that the law of life care for sick parents or grandparents about but when you touch a child in our case, we "LIFETIME MORTGAGE" AND THERE IS NO INTEREST to help you cancel. Friends at first you are even sometimes out of curiosity and then when the third see that you have no one to leave your children, you no longer call for the fourth time to go out for dinner for example. The family, if you're on foot barrel but as a mother know you can not condition their lives to your daughter's disability because that means that often they have to "sacrifice" or sometimes even no longer offered because they believe unsuited for coming out with other families cuidarlos.Acabamos with children with disabilities and we do not. So why the Law Unit has begun on the roof and is not built a day care center in my city to lighten our daily life ritmno? Why after so organize the association of Ourense Aspace offers us nothing with the support of the council before? Why rehabilitation service continues to run so badly? ... But the strangest thing was that after some psychologists us during the course of a survey, called and told me I had a sad affect, nostalgic and was on the verge of a depression and wanted to include me every "x" time to help . They do not realize that and come late, they should have been the December 12, 2004 and thereafter from time to time call and say "here we are," Need help?. You can imagine that took months wishing I could walk alone without pushing any orthopedic chair or any company and I can not do it or I get up at 6:30 and going until midnight. And the bike is not the same!
. My mother gives the impression that I am about to take the bull by the horns and fight another battle. At the end of the day who cares if we are continually fighting, sometimes successfully, sometimes not. Another anecdote! : Day 28 of this month we Me and Neil rehabilitación.Y the review, not change, there was another difficulty for the development of our everyday life: the day 13 we have to go to the residence with all the baggage of braces fixed to Nerea still growing. First look at what they are and then I will make you the same question that crossed my mind:
Would you ask the wise men to bring us a truck but this time it is really? Why must there be so many obstacles and many complications which end up being stressful and time-wasting? For I tell you that I have more than a month and a half asking that I set the plane so Nerea inter alia facilitate the evacuation of stools at the same time can stand to improve its tone, balance and activities at home while I I am for example cooking. There are many simple things that we could help our parents to lighten the load that is physically disabled of our daughter, architectural barriers, raised sidewalks, city bus ramps that do not work, parks unprepared for these children ....
Well I will not go further with my complaints because, as could you check the next year intend to be a bed of roses but instead seems to come with enough other bones.
I sent a big hug and wish you a happy New Year's Eve and for that gift you a few pictures in which you can see that despite all, and above all, NEREA SMILE KEEPS illuminate our lives. I love you all and thanks for having gone through the year 2009 and on your way to help with your messages of support. That no gift, no money, nothing to pay for it.
Nerea
Here I send a kiss to you all:
and now a smile ...
