La tensión entre los que deben defender ciertas normas, opiniones y valores, y los que luchan por otras nuevas, es el resultado sobre el que descansa la evolución de la sociedad.

Serge Moscovici





Already one year (Muniay I, 2005) (doc)

My name is Immaculate, I have 39 years and last October 25, 2004 became a mother for the second time.

That day I gave birth to a girl who called Ainhoa. It had not been 24 hours since birth in the maternity pediatrician at Children’s Hospital of Zaragoza gave us the bomb: Ainhoa ​​suffered a bone dysplasia be determined; “Look at your arms and legs are shorter, depressed nasal root, prominent forehead ..” seriously thought my husband was going to have a heart attack at the time. I froze, could not understand what they were saying. I had the amniocentesis, had passed all scans without anyone to tell me that there was something abnormal … .. it had to be a mistake. I was taken to a room to be alone and so began my ordeal (I have to thank the detail not to make me share a room with the mother of a “normal” baby but I recognize that I do not like being “different” and that situation alarmed me yet more).

Ainhoa ​​was examined from top to bottom, and while in the discharge report only the term “bone dysplasia” is mentioned, I communicate verbally suffering from achondroplasia although it remains to determine the “name” of their disease. On 14 February this year they collected the sample to conduct a genetic study (I think in Barcelona) and thus confirm the diagnosis.

When I think of me throughout the month of November 2004 I must admit that I feel sorry, I turned pathetic. I even think of making a blunder but fortunately thought of my other son (Daniel 7 years), my husband and my child I completely discouraged.

I have had moments of indescribable panic, of infinite worth, an immense rage .. a pain he did not think could exist. I have been completely lost: warning everyone of the problem of girl (I guess sometimes giving more information than the other person wanted to receive), many mornings at home alone made real efforts to vent crying quiet before should come my husband and son; sometimes he succeeded and sometimes not (so I’ve always been a crybaby) everything was as unreal and immense. How could this be happening to us !.

I was advised not to go online to not overwhelm me with any problems for the child (I have no computer at home so it was not hard to follow the advice. It’s been now, I return to work and much calmer than when I snorkeled a bit on the net to put some stop to my fears for the future of my daughter. Ignorance is sometimes not good because although I consider a very positive person, it is inevitable to see ghosts everywhere).

I immediately contacted the December 2, 2004, with the Aragonese Association of growth problems. My visit to your facilities was very hard: I was not prepared for what was to be my daughter in a few years. It was a stroke of really necessary but strong. Anyway I must say I was treated with great affection and I am part because of its association but not yet actively. Slowly.

Undoubtedly the best antidote to my pain has been, in this order, my girl, my friends and time: think and think.

Ainhoa, my princess, is a delightful girl. It’s like a doll. I see much more savvy than his brother at his age; communicates with me (smiles, “garlic”, laughs even) from very tiny and that has made that addresses things differently. she’s my daughter. For her I do whatever. She is a joy and a source of immense tenderness. In addition he behaves phenomenal.

His brother adores. Daniel is a very social, very friendly and supercariñoso child. It is also a gizmo (lives up to its name, not everything is easy). The arrival of his sister has been a great joy for him (and from pregnancy I was very happy). It is comforting to see that you received well but …. we have also suffered greatly for it. We have not said anything about the problem, he would not understand. On the advice of his doctor we have begun to “give clues” … but we are very concerned as it may affect when you understand what is happening. It is a child, safe (hopefully) that assumes all are more open than adults .. I hope so.

I return to work on 28 February. I am very lucky because I have some colleagues who above all are good friends; They have been with me all this time and now helps me clear my head, to go back a bit to be the Inma before. I can never thank you enough so their presence helps.

Now I feel better. I have times where returns this sense of failure and panic but increasingly overcame better. Sometimes I get the feeling that I’m under the influence of a tranquilizer that makes me see everything differently. I will seek all the information I can, little by little, I talk a lot about my daughter, I try to remain calm so that no one feels violent talking to me. I have to get some “normality” around for my daughter to grow in the warmest way possible and accepting all to go smoothly.

I find it almost seems like a lie. I’ll probably have relapses, do not know, but while my friends and people are around to pick me up and see my children well guess what I can overcome. (No evil that lasts forever … .. or body that resists right?). Yes I need a little mourn, vent better, and I’ll find a way to do this without affecting my family.

What I happen now if I’m beginning to overwhelm me thinking I’m passing the time and I’m not doing anything for the child. Should I start a treatment and physiotherapy ?, is there any specialized clinic or doctor in achondroplasia would be convenient to visit? .. At the moment (Ainhoa ​​is 4 months) we’ve only been 2 visits Metabolic Diseases Unit at Children’s Hospital Zaragoza that is not very different from the routine checks that the pediatrician makes him our health center (by the way, another invaluable support. It has been completely turned to us.) I get the feeling that we are falling short. At the moment, on the advice of your pediatrician, all you do is place a monitor apnea at night to “conjure” a possible sudden death. I do not know if we can do more at this point, or should we continue to expect that genetic diagnosis to propose palliative us.

Well, for now I think I have already entertaining enough with my things. I send you this letter from my computer at work (I hope my bosses will forgive my boldness). From here I have known (as it has made me mourn the article “Clara is great” when I see the photos I think that my child will be like, it was also beautiful reading “Unexpected Journey”) and I found that I I like to hear my story.

A very strong at all kiss. I’ll get to work.

Zaragoza March 11, 2005

P.S. On this day, I remember the attack in Madrid, I can not help thinking that I’m lucky. My girl is with me, is a happy baby and we will do everything in our power to remain so, I have a wonderful family …

A year later

Hi girls, how is everything ?, yes, this week has been very special for us. Ainhoa ​​turned one year old on Tuesday (and I will send a picture) and I took a week in which I pile up memories of what my life was a year ago. I tried not to think too much about it but it is inevitable, as it is even better to do: revive these things helps me to assume and overcome them.

Look, if I put my mind am able to feel the same pressure in the stomach, that feeling of falling into the void, horror … it scares me sometimes revive.

It’s been one year, who would tell me that I would find as now !.

Thanks for helping me achieve this, I have no doubt that you and all the people I’ve met from there have done the “miracle” of turning normal what looked like a tragedy. As Carmen told me once, there is a light at the end of the tunnel and my duty is to walk toward her. I assure you I do.

We had Ainhoa ​​visit at Children’s Hospital on Tuesday. They are having echoed the head (they were more reluctant to resonance because you have to anesthetize …) and have already sent me to trauma. No doubt it was me who told them what to do you fit, it is amazing! I mosqueo lot but in the end what counts is to keep on track so I have to stop thinking about their ineptitude and control what they do with it.

Incidentally, the other day I commented Beatriz (the physiotherapist or girl) who had met at a conference to a colleague who was a child with achondroplasia Leon began to walk with meses.¡14 14 months! … Clear who began treatment early childhood intervention from birth, not as Ainhoa ​​could not go up to seven months because, to contact you, I did not know there was something. What makes misinformation. I recognize that gave me an awful … but good envy.

I leave. Do you not ?, Once you get on the bridge, but will be either a weekday holiday. Have fun. Ah! and now I shall count such was the Madrid.

A huge kiss.