Sunday, July 19, 2015

One answer a day about my life with AMC challenge

For the whole month of June, I answered a question a day about Arthrogryposis and my life with it. As you know we celebrate Arthrogryposis Multiplex Congenita Awareness day on the 30th of June, and I challenged myself to answer one question a day through the month on June, no matter how personal, how hurtful or happy it was, I was an open book. The questions were public, but the person asking will stay anonymous, to protect the privacy of others. 
This was harder than I imagined, but here are all the questions and answers:

Day 1

How many surgeries you have in total? And of all those surgeries which have been the most and the least painful?

I had 15 surgeries in total. All of them have had their share of pain, either emotional or physical, but the most physically painful that I remember was the one I had in Cuba, I don't why but I remember it full of pain. All the time I needed oil injections for pain relief, I hated these injections so I held the pain until it was too severe, I was 10 years old there and I had both of my tibias done, my mom and I were alone and I didn't want to worry her, so I didn't want to say anything. I think that made it worse, I didn't want to express the pain that I felt and that made it even more painful.
On the other hand the most emotionally painful surgery was the last one, when I broke the femur, it was an unexpected one, I was about to get married and just had started a new and independent work, in which, if I wasn't working I wouldn't earn, it was very hard for me go through all that, but ultimately everything heals and everything passes.
The least painful was when I grew a bone in my right foot, I went into the surgery room, bone off and I walked out grin emoticon That was an easy one!

Day 2

I wanted to know how difficult was your school stage and how you felt about it, and what I can do as a parent to help my child?

School for me was varied, as for medical reasons (Physio Therapy) I did not go to school for several years, my student life is divided as it follows:
Kindergarten and Primary school: This stage was super good for me, since I left the nuclear family for the "real" world, there was no one to help me do everything so I had to learn how to, the good thing was that my school NEVER changed anything for me, if the classroom was on the second floor to the second floor I went. But I guess your question is on the side of friends and bullying.
In my case I've always been very friendly, so that helped me a lot, but a lot of it comes from the way my mom raised me, she always tried to let me do everything that other kids were doing, even if I couldn't or did it differently. If I was invited somewhere she would ALWAYS let me go, I think her trick was giving me more freedom than you would a "common / normal" Kid, this helped me a lot to create confidence in myself and to know that if I couldn't do anything it was ok to ask for help. My friends were always willing to help me, I think that is part of our friendship. I think my presence in the school was good for them too, as they not only learned academic subjects, but also companionship, empathy and that the fact that we are different doesn't mean that we can't be friends.
High school was a little different, I went back to school in 9th grade (sophomore), to a school where they had not lived with a classmate with disabilities before, but by then, I think my personality was well formed, so there was break a moment in which I was no longer, as it was in elementary school, Melissa the girl doing this or that differently and where they needed to help her and learn how to do this or that with her. I was Melissa period, I already knew how to interact with others, how and when to ask for help, also knew what to do and how to do what I could not. My high school years were characterized by many changes, the three last years I went to three different schools, including one in the USA where I went as an exchange student, this was an incredible experience, there everything was different again and you know what helped me the most? That I had my self-esteem and character very well formed.
If you ask me what to do to help your child, I would tell you let them know that he is different and that it is fine. If you hide that from him and you create a perfect world him, the world will take care of telling him that he is different in horrible ways, and that will cause a problem. If he knows who he is from the beginning and is proud of it, nobody will ever be able to make him feel bad.

Day 3

My baby is 9 months old and what worries me most is the pain that he has or that he will have to go through. Please be sincere, does it always hurts? The wounds hurt you when it's cold or when it will rain?

There are so many different ways to answer a question like this, but I will try to do the best I can.
I understand that as a mother, a child's pain hurts much more than your own pain. I'll be 100% honest, it hurts, each day that goes by I feel more pain, it is as if I'm getting older quicker. When I was a little girl (About 10) I just ached from cold, Physiotherapy or surgeries, the funny thing is that the therapies were the biggest part of my life, so I became very tolerant to pain. Right now I'm sitting at my desk writing and if someone comes and asks me, "Are you in pain?" I automatically would answer no. However, if I really think about it, I have pain in my lower back, on one knee and my feet, but because all my life I have felt pain, it is something that is part of me and I'm thankful for the pains of therapy that not only did help me improve, helped me walk, helped me eating alone, but it also prepared me for the pains that I have now a day.
We also have to think that there are 400 different types of AMC, and not all go thru the same things, hopefully your child has no pain, but if he has them, please feel "relief" that this pain will be normal for him, just part of life.
I do not live a sad or whiny life, the pains do not stop me or torture me, they are just part of me.

Day 4

I am 25 years old and I've only had a boyfriend once because all the men that I liked rejected me, I'm worried because I don't know if someday I'll get someone to love me as I am, how have you managed your love life, in order for AMC to become secondary?

This is an issue that is SO common it could be in any book, magazine or movie... I think if there is an experience that all human beings have in common, is that someone has broken their heart and have suffered from love.
So first, I want to tell you, do not feel alone or weird about it. I have many friends who are 30 or more who have had only one boyfriend like you and have not found the right person, they don't have AMC or anything like that. Love is just a matter of luck, finding the person who not only loves you for who you are but also, for him or her, you are the most beautiful person on earth.
I want to make clear that all of this begins at home, this will sound very cliche, but first you have to fall in love with yourself, then others will follow suit because no matter how much some love you if you don't love and accept yourself for who you are, you will never be happy.
Responding directly to your question, the Arthrogryposis has never been secondary in my life, it always was and is part of who I am, and I try to take advantage of it, in matters of love I did too. I always thought if you do not like who I am, the way I walk or my differences, well on your way you go. AMC was the best detector of people who weren't right for me. Luckily I also like different people, who aren't influenced easily, people with strong characters, so perhaps that made it easier.
The only thing left for me to say is begin at home, fall in love with you, your flaws and virtues. This is you, you are not going to move out of your body, it is the only one you have for the rest of your life, accept it and love it, don't let bad experiences take you away from the right person.

Day 5

My question comes because my daughter is almost 8 years old and I don't let her go alone to the bathroom because she doesn't have very much mobility for her clothes or to clean herself...
Did you go alone to the exchange program you did? .. Or your mom was always with you?

Yes, in the exchange program I was alone, but there I was 16 years old. Everything has a process, my mom also helped me in several things when I was younger, actually she still does, if she is with me and I'm changing my clothes or something, she still put my shoes or socks on, it's the nature of a mother wanting to make their child's life easier, but if I'm honest with you I learned the most when there was no one to help me. Now I can do everything related to getting dressed or bathing by myself, the idea for your daughter is also to become fully independent, but don't get desperate, let her discover her body slowly, she will learn how it works and how to use it. My advice, leave her alone whenever you can, so she'll step by step learn that she needs to find her own way and think about how to do things by herself, that will come gradually. You'll see she will find her own tricks and she will surprise you.

Day 6
The problem I'm having right now is my daughter can do things some days and then other days she won't do it, and if I make her then, she starts yelling at me and saying I'm mean and then I cave in and do it.

This is a very difficult situation and it has to be very hard for you. I remember there were days (a lot of them) when I would have huge strops (hissy fits) I said horrible things to my mom, I even remember saying that I hated her and then crying because "nobody loved me". I wasn't an easy child, I wanted lots of things done my way and if wasn't like that I went crazy. Now that I'm grown person, I look back and I'm SO thankful for the way mom acted in those situations, she never allowed me disrespectful or harmful, if I had one of those moments for no reason she would ground me and then when I calmed down she explained what I did wrong. Please know that I know this is not easy, when you have a screaming child, all you want from them is to be quiet and happy, but also know you are the one that can make a difference with your child. Is all bout finding a balance, making agreements with her, maybe, I'm thinking you can sit down with her and set new rules, ask her what it's easier for her to do, and start there. She has to do the three things she finds the easiest 4 days a week, and one thing she finds hard once a week. Let her know that if one day she is really struggling she can let you know and will be happy to help her, but let her know that she has to be really honest when she struggles otherwise if she says it often you will think she is acting and stop helping her and one day she might really need your help and you won't help. Like the story of the boy who cried wolf...
As the time goes by she will be used to do those easy things and the most difficult will become easy, so then she should start doing the easy ones every day, the difficult one 4 days a week and add a new difficult one to practice with. This way she will soon do more than she thinks she can.
I hope this helps, stay strong and please know that your daughter WILL appreciate this in the future.

Day 7
How do you clean yourself after going to the bathroom?

I clean myself like any other person, but to get there was a long process, I remember my mom leaving me in the bathroom when we had time, so I will figure it out. She wanted to make sure this was achieved before I had to go to school. The front was easy for me, I learned it in about two weeks after we started doing the "figure it out yourself" thing. The issue was the back bit, to begin with I started cleaning myself back to front but was really bad because it brought some bad infections down there, but I could, if I had to. Then, again, the friends getting involved play the part. I remembered being in my cousin's house when I was around 9 years old, she had some friends over, we were playing and I had to go, so as I was taking "too long" they came into the bathroom looking for me. And they saw me cleaning myself back to front and said "WHAT ARE YOU DOING!?!?, THAT IS NOT HOW YOU DO IT", that comment gave me an urge to learn how to do it "properly". So I practiced and practiced until I got it right, it took about a year, so don't give up!

Day 8
I read the other day that you were going through a difficult time, but what surprised me was in spite of it, you were still helping to answer these questions and always in a good mood, How do you stay strong when going through difficult times, like surgeries, painful treatments, etc. And to keep your good mood?

Well, this is a very interesting question, because it is in my present and everything is very fresh.
Even though I'm going through a hard time, I have always been of the idea that the long faces and bad thoughts do not change the situation in which one is.
Once wrote that in a journey of a thousand steps the final destination is the same but is up to you if you look at the ground or stars. That dictates my life if I have to go through it anyways, is best to do it with a smile on my face and with very high hopes.
As the wonderful saying says:
“Life isn't about waiting for the storm to pass...It's about learning to dance in the rain.”

Day 9
How were your surgeries? How many have you had? Did you have any surgeries in your hips? Have all your surgeries been successful? Did it hurt? At any point, you felt like leaving everything and quitting your treatment? Especially in adolescence where many go through a rebellious phase? 

This is a super important question because many times parents don't know if what they are doing is right, or if the surgeries actually change something.
All my surgeries have definitely helped me, I had 15 in total, I was born with fractured and dislocated hips, however, I didn't need a hip surgery, everything was with external adaptors. I will be lying if I told you that it didn't hurt, all of them have had their dose of pain at different levels but always with pain.
This is not to scare you, but for you to be prepared so you can support your child.
When I was a little girl often told my mom I did not want to do therapy, but it was a struggle like the ones kids have with their parents when they don't want to eat or brush their teeth, I eventually made it part of my routine because I knew it was good for me.
With adolescence came another kind of rebellion, nothing to do with my treatment, my rebellion was about trying to be different from the rest, I know, funny for a person that in theory suffers from being different, well I wanted to be even more different than AMC made me, I had a completely shaved head, pierced tongue and nose, I also acquired a tattoo which, fortunately, is tiny and cute smile emoticon Everything went away later, but taught me to enjoy my differences, helped me feel secure, something didn't happen before my adolescence.
Now I also know that outside factors do not help me being different and unique, that comes by default.

Day 10
Have you ever seen your mother very tired, sad or wanting to quit the treatments due to a difficult situation with you?

Many times.
The issue with Arthrogryposis is that it doesn't have a cure, it is very treatable, but it is a constant battle. You never know if there will be more surgeries or something new to do.
It is normal to feel tired and sad, how can you not when your child is in pain?
I always say that parents go through more the us (AMCers), we (people with AMC) are the ones who go through the surgeries, therapies and pain, for us it is normal, we were born with this and it's all we know, but our parents knew something else, their life was normal before we came along and their life changed overnight, everything they had hoped was replaced by anguish, pain, and misinformation. So I understand that a parent may feel that it may be better not to go through all the pain and stop treatment and just "accept" what life gave them,
But believe me when I say that every bad moment is worth it, and your daughter will appreciate that despite everything you felt you kept going for her.
So, I ask you, please don't give up. In the future when you look back, even if you think nothing has changed, everything will be different and better.
So, Stay Strong Mama!!

Day 11
Many people have made comments to my son about his condition in a very pessimistic way, or with pity, has this happened to you? How do you answer them? How do you feel? What do you do?

First of all I would like to tell your son, he is not alone and he is not the only one going through this, all the people that are a little different have been through it many times and is normal. People pay a lot of attention to what they find different or things that do not understand, they look, just out of curiosity. It is not to make us feel bad.
It has happened to me many times, when I was young, I felt bad when a child came and made fun of me or I imitated my walk. Gradually I learned that if I explained from the beginning what was "wrong" with me, they'd understand quickly and after that it would be just normal, and if you think, that makes sense. When you go down the street and you see a different car, you will mention it to who you are with, something like that car looks big, or small, or too pink or only has one door. It's not that I'm comparing us to a material thing, it's that people are, but people's curiosity can sometimes overcome their common sense and sometimes they don't realize how hurtful they can be.
I want you to tell your son that is normal they look at him, he shouldn't feel bad and if he sees someone looking too much, just to ask them, " Do you want me to explain something?" Help him find a way with which he feels comfortable explaining how and why he is different.
A long time ago, looks made me feel really uncomfortable and I didn't know how to behave in front of new people, but I found my formula to feel good, the first thing was to understand that it is not wrong for people to watch, on the contrary, it is okay to do so, because if they do they will understand at some point and it will be normal to them.
Also by that time a saying reached me, "People will stare, make it worth their while"
What I mean by this, is that he has to find a way to get comfortable with people looking, that's not going to go away, and he has to be happy if people look, or not.
Everything will be fine, hero!

Day 12
I'd like to know how were your school years and your adolescence?

My school years were really good, I think it was one of the things that helped me to be as independent as I am.
School is the perfect place to develop outside of the family, but with the knowledge that if something goes wrong you have a backup.
We all know that in school we learn academic subjects such as maths, language, etc. But there are hidden subjects that I think are much more important, school is where we learn to live together, respect and accept each other.
I went to a normal school, I feel that was a benefit to me, because maybe if I had gone to a school for children with disabilities, I wouldn't have learned how to do things for myself, like go to the bathroom alone from such a young age, to carry my own bag while walking, to write without any adaptation, or what is the most important for me, it would have taken me much longer to adapt to the questions and looks the other children had for me.
My adolescence was pretty happy, I had many friends, went out to parties, I fell in love a lot, had people fall in love a lot with me, I suffered many heart breaks, but also broke many hearts, I drove my mother crazy (even if deep down she was happy because I was living a "normal" adolescence), all of this combined with therapy and surgeries that also was normal for me.
In summary, what I learned in school as a girl, helped me to have a completely normal adolescence.

Day 13
How was your childhood? I mean, could you get a good grip, walking, climbing games?

My childhood as a child, forgive my redundancy, was very average in all, although I still can not climb things, one of the things that the AMC gave, me was lots of imagination. With that, I achieved that my childhood days flowed normally, if I found a game that I liked and I could do, I played it for hours.
Another thing that helped me a lot was, that unlike today, toys were the same for everyone, they didn't have any adaptations. That allowed the coordination in hands to get better every day, in terms of full body games as running, jumping, etc. I always tried, maybe I couldn't play in the same way as other children, but in the end games are for the person to have fun and I had a wonderful time.
So, don't worry, your child will find his favorite games, he is not going to get bored.

Day 14
Have you ever asked yourself why you were born like this? The other day my daughter asked me and I didn't know what to tell her.

Throughout my life I've asked myself that countless times, I don't remember all situations, or what I responded, or what they responded to me. But I clearly remember the first time I did ask that question. I had a very hard day at school, and that night I was with my mother in the kitchen and asked her crying why I was born like this? And if it was my fault that she and my dad got divorced? To which she replied "Of course not, don't you ever think such a thing". What she didn't know how to answer was why I was born with AMC, she just hugged me and cried with me.
After that, many moments made me ask the same question, but the next day the question simply hid again.
It's been long since I asked myself that question, but when I read your question was the first time that I liked the answer, I think everything happens for a reason, in my case, I feel I was born to do this, so that through my life families like yours can know that everything will be fine and that your daughter can live a happy life, hard, but happy.
Your daughter will find her own answer at some point, tell her not to rush, it comes alone.
When the question appears, answer her "Someday we'll know" and give a big hug. heart emoticon

 Day 15

For some years now, I've been hearing you say that in June is the AMC Awareness day, and in fact, these questions, you are responding are to raise awareness, my question is, why is it so important to create awareness for a condition like this, if it is not very common?

Your question is very valid, and I chose to answer it today because right now we are 15 days away from the AMC awareness day.
You ask me why it is important if AMC is an uncommon condition, and the answer is exactly that. As an uncommon condition, not much is known about it, in fact, every time I go to a new doctor, I am the one who has to explain what Arthrogryposis is imagine going to a doctor to get a response to what you are feeling and having to be the one who ends up informing.
And what I just said is the most simple part. I know many people who were suggesting abortion by their doctors, as the life expectancy for a fetus / baby with AMC is not long, doctors don't give the minimum care to know what happens to children with AMC who were not aborted or misdiagnosed. Even if AMC cannot be cured is very treatable and many cases come to have an independent life.
It is for this, that June 30th is important, for parents who are going through a moment of uncertainty are able to know that there is something to be done. For people with AMC to not feel alone, I first met someone with my same condition when I was 28 years old and know people that just did it at 70.
Raising awareness is useful to connect families who are going through the same thing and they can share information, therapies, techniques and also tears that come from the same source.
On June 30th when you wear Blue, you're wearing hope, information, and possibilities.

Day 16
Have you ever needed help and did not have anyone to turn to for help?

The story that I have in relation to your question is pretty funny, luckily it only happened to me once, usually just need help when I fall and can not stand up alone, when this happens I usually have someone around and I ask for help, but when I was 18 years old I went to live in Cusco, a city in the south of my country, I rented a room in an old house which I shared with several people, the fact is that one night I was alone in the house and going to bathroom I fell down, this house was one of those giant colonial houses full of stairs and everything was very dark, I tried to stand up many times against the wall, using the stairs and nothing worked, so I decided to wait until someone came back, about 30 minutes later someone came, I'll say it again this house was HUGE, this friend that got back went around the house looking for someone, when he got to the hallway in which I had fallen I said "hello" he react almost with a panic attack and screamed in fear. He thought I was a Ghost! LOL like I said the house was old and every light was off when he realized that it was me he didn't know if he should have helped me or kill me lol.
Well, what I mean by this is that if AMC teaches us something is to be patient, if your daughter ever needs help and there is no one around, she will wait until help arrives or find a way to do it herself.

Day 17
What is your greatest fear?

This question is very personal because the answer hides deep in the back of my head, but here we go! I have two great fears related to AMC:
1- Stop walking. Each time it's getting harder to recover after an operation, in fact from the last two (2009 and 2013) I haven't recovered 100% yet. My fear is that one day my body will stop working the way I want it to work and lose the blessing of walking.
2- One of my greatest desires is to be a mother, and with this desire comes one of my biggest fears, that I won't be 100 % independent with my children, I want to lift them from one place to another, I want to be able to put them safely in the car, to be to be alone with them, to be able to carry them to the second floor lay them on my bed and put them down when they fall asleep, I want to be their mother 100%, but we'll see what happens when the time comes.

Day 18
I have a 4-year-old girl with AMC and the doctors have told me that as a patient with this condition, when she decides to have children her chance of having a baby with AMC is 50/50 and my question is, how did your mom talk to you about it? The truth the situation, in my case, has generated some conflict. What are your thoughts about it?

This is a question that follows perfectly the last one, I really didn't know much about AMC until some year ago, as I always say there is no information anywhere, thank God I found Arthrogryposis Multiplex Congenita Support, Inc. And its conferences, where I learned a lot. Before that we actually never talked about it (my mom and I) because with know much about it.
What that doctor told you, I think that he has said it very lightly, I don't know what type of AMC your daughter has, as there are various types, including one genetic, if that case, then is different but, if she has amyoplasia which is the most common type of AMC (that is what I have) your daughter has the same chances that any other woman has to have children with AMC, Very few.
About your question of how I feel about the possibility of having a child with AMC, it doesn't affect me at all, not AMC or with any type of disability, the truth is I don't even think about this, my son or daughter will be loved and I'll be happy to have him or her as they come. They will always be a gift from God.

Day 19
Have you ever imagined that with your experiences you could help other people? How do you feel every time someone tells you that they feel better when they read you or hear you?

When you have a complicated condition you always hear things like: "You are very brave" But the truth is I never imagined I would live what I'm living now, I receive daily questions/messages from parents or people with AMC, this is something that has been growing slowly for the two last years. To be honest, what surprises me the most, is when I meet friends or acquaintances who are not related to AMC and they say that they follow me, and to see an honest smile on their faces as they tell me they feel as if they are part of the AMC world. That to me is unbelievable!
About how I feel, just today, I was with Ari, a cute little girl who has AMC that affects her arms, I loved to take some time with her and show her how I do things, thinking that that might help, and out of nowhere she did it, as if it had been in her genes and it was only waiting to come out. Being able to help with my experiences, is what makes me the happiest, no words can describe how I feel when someone tells me that when they read or hear me they feel better, I think the only thing that can explain it is my big smile or my happy tears.

Day 20
The main purpose for an AMCer is to get as independent as possible, do you use some form of technical assistance in your day to do this?

As the years went by, I used devices to help me do different things according to my needs. In this specific moment I don't use anything technical to help me, I've been lucky to find my ways to do it. I take a little longer but, I can do it alone. It took a lot of practice and many situations that were not ideal for learning how to, but eventually I did.
I know that many people use various adaptors to get dressed, brushing their teeth or to bathe alone. It is a matter of doing some research and finding what may be useful to you.
I have a Pinterest board with ideas, just in case you want to check it to see if it helps with anything.

Day 21
Does AMC somehow affect your marriage, and I mean in all aspects? Physical, emotional, sexual, etc. ?

Not at all! AMC has never affected any of my relationships, with my husband, or any of my ex-boyfriends. I have been fortunate to be fairly independent in every way, however if at some point I can't do something I let him know, for example, the thing with the shoes and socks, I can put my socks and shoes on, it just takes me a bit more time, to Mike (my husband) it seems strange not to help me, for him it makes no sense that I " suffer " with the time and helps me, but, for example, he doesn't like cleaning the bathrooms and I have no problem with it so I do it. It's all about finding a balance. Like everything in life.

Day 22
Was it hard, at any point, to make friends?

I think like everyone else, I struggled to make friends at some moment more than others. For example, when I first joined school, I was very shy, but luckily there are always people who are similar to you and you can always find friends like that. As time went on it became easier for me. I think the biggest change was that as I got older my mom started letting me go out alone around the neighborhood (I was 10 or 11 years old), there I learned to make friends by myself. I made a quite large group of friends from the neighborhood, although to make friends outside that group was still difficult to begin with at the end, I became Super friendly and now I'm a really social person!

Day 23
I see you are very independent, What has been the most difficult thing for you to learn how to do it? 
Which has been your biggest achievement related to your independence? And is there something that you can't do that you will like to do?

Yes, I am 100 % independent, I'm very lucky to be able to do almost everything alone. And if I can't, I have learned to manage how to live without it, if there is no one who can help me.
I think my greatest achievement has been to find my own ways of doing things in my day to day alone, without any equipment or aid, this allows me to do one of the things I love most without depending on anything or anyone, to travel! Being able to move freely as I please, to me, is the best thing I could have achieved.
Yes, there is something I can't do, I can't get up from the floor by myself. I tried to learn it as a child in therapy, then on my own, and I never achieved it. Since I have been going to conferences, I have seen many people who can do it, there are a thousand different ways, I've tried some of them and it has not worked for me, there are other ways that I don't dare to try, they look just too dangerous! lol. So maybe, if one day I fall in the desert and there is no one to help me up, I will do it, if not, it will stay right there with my desire of learning how to fly. wink emoticon

Day 24
Why are you happy to have been born with AMC? My child (two months old) has AMC and I still can't find what is so happy about it.

I know that as new parent everything is new and painful, I get that there is not very much information about it out there, and the little information there is, doesn't give you a very hopeful future for you and your son, but let me tell you, you will get to live things with him that others are not so lucky to do, you are able to form not only your child's life but it body, every minute of work, every surgery will be worth 100 times again, when you see his first hands movement or his first steps, the first time he eats independently will bring to your life extra joy, parents of able body kids get to enjoy this moments as well but for you and your son this moments will not only be moments of happiness but moments of victory.
How can I not be happy to have been born with AMC? If it taught me perseverance, to work hard and that I can do anything I set my mind to. It also gave me an incredible bond with my mom, we did it together! And nothing, not even bad days, can take away how proud I'm off all that we have accomplished with my body and my life in general.
My life was not easy, life is not easy, but it's been happy and one hell of a ride.
I don't want to tell you that t won't be complicated but, in a few years when you look back you will do so with a happy heart and with memories that wouldn't change for the world.
I also want to tell you that I'm here if need anything, advice, a shoulder to cry or just someone to share your victories with that totally know what the mean. We are here me and your new AMC family.

Day 25
Did I want to know how many kinds of therapy worked for you?

I believe that in my lifetime, we tested 109,370,470,404,808 types of therapy lol
And all of them have helped, even the ones that "didn't" work.
With this condition, which is not well known, you have to take risks and try everything and most of all follow your intuition. This way you can find what works for you, because as we all know no two AMCers are the same.

Day 26
How has your mom managed to have such a nice relationship with you? How can I heal the part of being doctor-therapist and achieve the complicity and find a mother-daughter relationship?

This is a very good question and also very important.
My mother and I have a relationship like no other, we are very close, I think more than normal, like you, she also was my doctor-therapist-mother, but I think this played a very important role the fact that she and I are so close. I know that is difficult to be hard with your child, you sometimes will want to leave everything and just be her mom, my mother might be able to help you better with this, but if there's something I always remember is that she always let me know that everything she did was for my own good and, if, maybe, I did not understand at the time, now I have it very clear and I'm infinitely thankful for everything she did and still does for me. This takes time, I know your daughter is still very young and this may take longer than you want it to, but you will see that you will have an incredible relationship, you just have to remind her that despite everything, you're her mother and you will always try to find and do what is best for her.

Day 27
My daughter is like you, a super girly girl, sometimes the fact that she can't use certain items like normal shoes makes me sad. Before, she enjoyed looking all around the shoe shop, today if I can, I try to buy her occasionally shoes she wants, but after a while, I see her looking tired and a little frustrated and she will ask me to put her AFOs and shoes back on. How do I achieve that it doesn't affect her so much, how has it worked for you or at the end of the day does that feeling pass and other things matter more?

The shoe situation is an odyssey, like your daughter as a little girl I used Leg braces and "normal" shoes that fitted on top, after a surgery when I was 6, I didn't need to use leg braces anymore but if you needed orthopedic shoes until I was almost 15 years old. As you know, orthopedic shoes are quite expensive, so I only had two pairs at the same time, they were usually trainers and others a little more "elegant", these 10 years wearing orthopedic shoes, made me overlook shoes, even though the orthopedic shoes I got made were very cute, but I couldn't change shoes every day (important for a girly girl). My friends even named my shoes, lol they were part of the group. Then, when the doctor told me I could use "normal" shoes, at first it was a joy, because I thought I could use whatever I wanted, then I realized that the way my feet are, I had to find what best suited me and gave me more stability, that's not always easy to find. So, whenever I find a comfortable shoe I have to buy it, she will gradually find out what kind of shoes she is more comfortable in, and believe me how they look will pass into the background. She will have a thousand other things you could use that she will enjoy, like clothes, handbags, necklaces, etc.
Good luck!

Day 28
What is the worst thing someone has said to you (as bullying) regarding AMC? And how you felt about it and how did you recover from that?

Throughout my life I had pretty strong comments made to me about my disability that I didn't like, but I think the worst was when I was in a gym that had personal trainers, I always trained with one guy, but one day he was ill and I went to another one of the trainers, suddenly, when he started telling me to do some movements like raising my arms or bending my knees, When I told him I couldn't, he told me exactly these words "Wow, you must have done something very wrong in your past life to be so bad, you must be paying for something big! "
At the time, I only managed to say to him his comment was SO out of place and then mentioned it to the manager of the place. What happened to him? I do not know, but it taught me a lesson in life. When people don't understand something, they automatically take it as wrong without thinking beyond their own experience.
I'm not paying for anything, if anything, I feel I am blessed, the problem is there for those people that can't see beyond what is normal to them.

Day 29
What happened with your dad? I've never read something about that in what you write.

This is the most personal question I have answered here or to myself, but as I said at the beginning of this challenge I will be COMPLETELY honest, even if this might bring a long, painful conversation afterwards, but as my best friend says this has to come out at some point, so this is it.
My dad is here, you can find him on some of my photos if you look carefully.
My parents got divorced when I was around 2 years old, he stayed in the where we were living and we came back to Lima, I really don't remember the first few years (here I'm telling my side of the story) I only remember that we lived with my grandma because we didn't have much money as my mom had to work at night to pay for everything for my brother and as my dad didn't help at all with us, even if he was in a very good economic situation. The next thing I remember was when I was 6, I had a surgery and he came, bought me a coloring book and gave my mom some money towards the surgery. After that, I remember my brother and I used to go to visit him on our school breaks, those years I remember him calling "often" not like later on.
When I was 10, my brother stopped coming with me to visit him, and the calls lessened to once a month.
After some years my two little brothers were born (my dad sons), from the first moment I fell in love with them, I think that is what made me keep in touch with him, I used to visit them every summer, and if he didn't call I would call them.
What has always been "funny" about my relationship with my dad, were his out of time comments about my life trying to be present, but a few years too late, but he is my dad so he has the right.
Now 31 years later he is living in Lima and still don't see him very often (on his birthday or father's day), we speak more and we try harder, but nothing has really changed, I don't feel there is genuine interest from his part, love yes, but interest not.
This, that I'm about to write, not many people know about, one of the hardest things I had to live in life was on the first AMCsi conference in went to, there I met Matt, a young dad that reminded me physically of my father, I could stop looking at him with his baby boy, I always excused my dad for leaving, saying that he was too young when he had me, that it was too much for him. Matt taught me that there are no excuses, when you love someone and you want to be there you are, nothing else.

Day 30
Now the question is from me to you, are you more aware?

If so please wear your blue every June 30th.

In the last 30 days I've opened my heart to answer questions to help create awareness for Arthrogryposis, the 30th of June we don't only celebrate, but we remember those whose life came to an end too early, AMC takes 30% of the babies born with it. By helping create awareness, you give hope, information and maybe more investigation will come our way, to you is one day wearing blue and tagging a few words, for us it could change our world.
Please wear your blue every June 30th, take a Photo post it on social media and use the ‪#‎BlueforAMC‬ ‪#‎Arthrogryposis‬ ‪#‎AMCAwarenessDay‬

No comments:

Post a Comment