The other day I woke up thinking that the journey with Arthrogryposis is really not easy, it´s a roller coaster of emotions, first as a parent you expect an able bodied baby, then you get the news, it doesn't matter if it was in the womb or at birth, the shock and anguish was there, you visited every doctor you could find and the news were all as hopeless as the first one, what they didn't tell you and this goes the all the new parents, is that you are in for a truly amazing experience and blessing that not many get to experience. Every day you will have the gift of not only raising your child but, also forming their bodys, day by day is a beautiful battle that will only make you grow closer to your child.
Parents are always sharing their kids firsts, first words, first steps, first potty training, well you will be so lucky that you will have more firsts than most families do. The first time your kid moved their finger, hold their neck, the first time he/she got to play with their toys. you my friend, will be blessed with thousands of those moments.
Then the first surgeries will come along, again please expect the unexpected, because I know you will be worried about your kid and how much they will suffer, but then again you will be surprised, your kids is a champ and stronger than you ever thought, yes there will be tears but, is all part of the journey for a better future and it will be appreciated along the way.
In that moment you will think your kids are past their worst suffering and then the bullying will knock on your door, again another battle that your kid will have to endure and you will have to be there to heal the wounds, but please know it does get better and it will be just a character building memory soon. Everything happens for a reason and even if you don´t understand it now, you will see it clearly in the near future.
I know it hurts and is not easy, I've been thru that, I base what I'm telling you not on something I read, I'm telling you this because it happened to me, I have been made fun of, I've lost friends that didn´t want to hang out with me because I was different (and thanks god they are gone); I have been rejected by lots of boys that I had crushes on... But all of that goes away, your kid will be left with the people and friends that truly matter and his/her life will be magic. All you need to do is help them accept who they are and teach them to love themselves deeply and people will be drawn to to them.
I know is not easy, but once you do it, you will never go back to those dark days, our life has been a constant battle since day we were born but this, this will be the one battle the will win you the war.
This happened to me, the day I decided to love myself and truly accepted that I was different and that there was NOTHING wrong with it, on contraire is good to be different and stand out from the rest, that was the day my life changed for the better. Just be who you are, it doesn't matter if you walk funny, use a wheelchair, crawl, are shy or outgoing, tall or like in my case very short, just be honest with who you are, THE UNIVERSE, MY FRIENDS, CAN NOT RESIST AUTHENTICITY...
I don´t need to hide from others, I don't need people to accept who I am, I got enough in me, and so have you.
This is a magical life, where if you believe that you can achieve anything you will, you only have to dream it, taste it in your mind and then get on with the hard work, because this life is nothing without hard work, but let's not try to figure out everything at once, take your time to work on it, to desire it so much that it hurts, So when you get there, achieving it, you will experience pure joy, nothing else will matter, all of those days of pain and hard work will be even more empowering and you will only know that the best thing you ever did was to believe in yourself...