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Dad's point of View - Center of my universe

I have wrecked my brain for my next Blog, but nothing seem to scream out at me. usually  an event with faith or something i have seen or heard would give me inspiration and i run to the computer and write. So i went to my Husband , who has read every Blog i have done and has supported me so much and is my Best friend and soul mate and asked ' Tell me what you think i should write about, i need inspiration" .

So this Blog partly is my husband take on Faith what he worries about his daughter.

" I want people to know not to put too much pressure on there kids, and that they need to just try relax with them"

My husband a man of not many words, but it is true. Dad's take on finding time to relax with them , try not pressure them too much . Is that not what Dad's are for. I think i am always the one saying to Faith do this, have you done that blah , blah and Dad is the one she has her play fights with, jokes with and generally relaxes more with. I guess we have a balance then don't we. I guess i just stress more about her as i am always thinking, planning and organizing each day.

I love the way Reggie is able to just be relaxed around her, joke with her and well he has a way of working her up as well, but they have there own kind of relationship and i am thankful because she will grow up knowing Dad will always be there for me and . I am thankful my husband is at every psychologist appointment, We discuss everything and is involved. Although we play different roles in Faith life we both have an important place in her life and her Dad i feel is vital for her well been as a person and one day as a young woman as well.

I do however have to remind him now and then  "Hey i have not given her anxiety tablet today, so tone it down lol " 

I think faith just wants our support and help and even though we may give it in different way's we both contribute to helping her in any way we can.

I think it takes a rare man to stay and be a real dad especially under different circumstances when your child has special needs. So i take a bow to all Dad's who have stuck around, who have joined in, participated and been a contribution to there child's special needs. You are an example of a true man.

To Faith 

my beautiful daughter, Dad loves you and thinks you are the best thing since Rugby. Even though he may tease, you, discipline you , or say very little you are the center of his universe and never doubt that he loves you more than anything in this world.

Mom

Quote:

"I do what I can to try and get by. I do the best I can under the circumstances and HOPE that I 'rock.' Although most of the time I feel I’m still a very long way from being able to claim any kind of trophy, I’ll never stop trying to be a better father, that much I’m certain of."—Ken Lilly, Blogzilly

How little do we know or do we care to know

Is the social networks not wonderful thing. Facebook, google+, twitter i have connected with so many old friends from school and even way back when i was very young.  I recently spoke to him just hi how is it going the general stuff and i mentioned he must check out my Blog's and what it is all about. He mentioned how he too has anxiety as a child and had dyslexia and how he has struggled over the years dealing with it all. I was so shocked all the times we spent together and laughed and joked i picked up nothing. Nothing was said and nothing was asked. I feel quite sad that as friends do we not anymore go the extra mile to find out who our friends really are, what there fears, hopes and dreams are. or is it all made up on just socializing and keeping to subjects that are not too deep. I feel if maybe i had known about his special needs i could of been more of a better friend as we grew up together and maybe could of helped him during difficult times.

As we grow up i have learnt to choose my friends well , when we younger we are so more self conscious of people liking us and fitting in and the older you get, you get more self confident and frankly you either accept me or as i am or don't bother.  

I think it is important for parents to not hide or shy from there kids that have special needs that there child should also not be scared to mention it and embrace it , especially to those friends that do not go to a special needs school and let her realize early who values her as a friend and accepts her with all her special needs she may have.. It is important for her to grow up with the right group of friends , friends that will support her, understand her, protect her and stand by her when she goes through tough times. I am thankful Faith is an extrovert , i am also thankful she goes to a special needs school where kids are not judgmental and all know they are there for a reason. I am thankful she has the rare friends that are in mainstream who don't judge her either but just stand by her and try and understand. Growing up nowadays there is so much pressure and kids need to be confident in themselves and love themselves with all there faults and realize that a true friend will stand by you regardless what.

I alone have learnt over the years who becomes an acquaintances and who becomes a friend that i can speak about Faith freely without them feeling weird or uncomfortable because they are not in the same situation. I have learnt not to shy away from my child's special needs but to be open and honest. I guess that's why i started these blogs as well, it is easier to write and express  how you feel than to explain it all the time and this way my family and friends get to know the real me , the good days the bad days, the days of frustration and the days of triumph. 

My hope for faith is that she will embrace her anxiety, her adhd, etc and not ever feel like she is less than anyone else, never feel she has to prove herself to her friends because they can do things she cannot. . My hope for faith is that as she grows up she will find those few but precious friends who will love her, cherish her,and support her when times get dark and uncertain, cause face it most kids talk more to there friends than there parents as they grow up. I never want her to feel she cant just casually talk about it and her friends feel uncomfortable.

The gift of truly understanding your friends needs either as a child or an adult i think many lack because everyone looks on the surface instead inside the soul. I pray you have your few that see you as you with all your faults and still love you for you, because regardless we all are not perfect and have no right to judge anyone in this world. 

Letter to God

I was watching a movie today with Faith called Letter to God. A boy Tyler was diagnosed with cancer couldn't be more than 12 years old and how he started writing Letters to God. The postman who at that time didn't know what exactly to do with them and so kept them . Didn't have the heart to throw them away. Through this boys journey of just expressing himself through writing a letter to God and posting it every day, it ended up changing a whole community, kids, grown up, friends and most of all his family and the Postman himself who was going through some very rough times. He touched many peoples lives when he left to be with God, but his message will live forever..

So too we with our Blogs, our messages, each of us going through our own journey my Blogs i write to you i pray that i can reach many and touch them in a special way. Although i am writing about Faith journey and the journey we are on with special needs you realize the whole point of life is to be able to touch others lives. For when we gone one day we will not be remembered for how big your house was, or how much money you had, but for your heart your soul, the lives you touched while you were a live. 

I always wondered why we had to have a premature baby , have her almost die go through things emotionally physically and mentally i am sure we all ask the ultimate question sometimes  "Why God why!" 

Although i only started my blog 11 years after Faith has been born, i feel this is maybe what i am meant to do. Faith journey, her life her special needs her triumphs and disappointments we share with you to encourage, inspire, give you strength and make you know you are not alone. I know some people are private and don't talk about themselves and what goes on, but i feel we are all connected in this world in someway or another and although we Blog every day or once a week we have no idea all the lives we may of touched by opening our hearts up, baring ourselves, putting our selves  out there to the world. Tyler got to know all the lives he touched before he died by just a simple Letter to God.

M y Gift to you and i pray it has already happened with the previous 28 Blogs i have written, but i pray that my Blogs will touch all your lives in whatever journey you are going through, not just having a special need child. We all can touch and share and write our own Letter to God cause in that way what we are going through we don't realize, but we are healing our hearts at the same time, finding hope when all seems lost, finding strength when are body feels weak, finding Faith when we feel like we cant believe anymore. One story, one letter, one person just putting themselves out there can touch another life and they may never know.

Dear God

Thank you for my miracle child Faith, thank you that she survived, so i may tell her story her triumphs her disappointments, her journey. I pray that through my Blogs that i may touch many and that they may encourage, strengthen, inspire and make others bare themselves as well in order to touch others.


 Write your own Letter to God http://www.lettertogod.net/guestbook.php

Spontaneous decisions

I was sitting at my desk working and was over hearing my boss talking to our rep where she was talking about sending her child to High school. The different schools they went to see, why they never chose that one, why this one is great cause they have lots of sport etc etc. I felt happy for her and at the same time i felt a sadness run over me knowing i will never make such a casual decision Faith. I will never  have so many choices to choose for my child, decide who to say no or yes to. I have to fight to keep my child's education going when she turns 15. I have to find away to keep her educated as they feel she is not academically minded and must rather do a skill. I will not have so many choices to choose from and have the luxury of saying no to some and yes to others. I will have to make difficult decision for my child future her education and i cant plan way a head i have to take one year at  a time and see what may unfold.

I sat there trying not to even think so far ahead cause i knew it would just stress me out. I know we all have our own journey in this life, i just sometimes wish Faith's journey was not so complicated and difficult for her. I sometimes wonder if people realize all the decisions they make every day, the quick words they use to make them , how easy it is to come to make the decision, but with a special needs child every little thing you do from the time they are born the games they played, the places they play, the school they go to the sports they may play has a goal around it. Nothing is just for fun. You try and throw that in somewhere. The toys are educational, the play areas is to help motor skills, the school is special needs, the sport is also to help muscles, balance, motor skills etc. Everything is like a well thought out plan, research to find and buy and organised. I wish we could of just bought a stupid toy just for the fun of it. But when you have a special needs child you always thinking one step further, every play time is almost like therapy time but with Mom and Dad. 

I hope parents appreciate the random, out of the blue decisions they are able to make just for the sake of it or just for the fun of it. How precious a gift they have . How walking in a toy store you not reading behind every box to see if it will help with spatial skills, or fine motor skills. To be able to have choices of schools, and your future is an open world, wherever you want to take it.

Faith we will have to aim for as far as she is able to go, we will push her and guide her and have to help her. we will have to make some hard decisions, she will have to accept some difficult decisions  Although i feel she is able to accomplish anything she puts her mind to, it will  not be easy, it wont be spontaneous and there wont be a world of anything and everything for her to choose. It is a gift to be  able to just live life without any major obstacles and yet kids still just take that for granted. I think if they had just 1 week of a special needs child's daily struggles they would turn that corner so fast there attitude and want for life would change drastically.

I hope parents and kids really get to appreciate the freedom of the choices they have for the decisions they have over there lives. Be appreciative of the gifts you have that you take for granted each day. Our kids with special needs don't have the luxury of a world of choices or opportunities and the decisions we make for our kids have to be the right one, have to be the perfect ones and they are not random, spontaneous, they are researched and planned and stressed about.

Confidence, Trust Belief

Some quotes to encourage

1. “The central struggle of parenthood is to let our hopes for our children outweigh our fears.” ~ Ellen Goodman
2. Children remind us to treasure the smallest of gifts, even in the most difficult times.” ~ Allen Klein
3. “I thank God for my handicaps, for through them I have found myself, my work and my God.” ~ Helen Keller

FAITH

Greek Meaning: 
The name Faith is a Greek baby name. In Greek the meaning of the name Faith is: Confidence; trust; belief.

I chose my daughters name well didn't I. It is funny how life works,  i actually chose her name even before she was born or before i was having problems with my pregnancy. Maybe God was trying tell me something.

Confidence

I pray her name meaning will come to life, she has grown so much in confidence over the last 11 years, but it didn't start that way. She was an emotional wreck angry, full of tantrums and frustration until we moved her to a special needs school and slowly they had to build her confidence up again as it seemed it was totally robbed in mainstream to the extent that she was petrified to do something wrong she would get panicky and want to go to the toilet. We eventually had to explain to her that it is ok if she doesn't get it right, she wont be sent out the classroom or be embarrassed in front of the class. She now slowly with support has gotten better. 

Trust

I think special need kids find it very hard to trust people, because they been let down and broken down so much by people and are emotionally so scared to show them selves freely that they lack the ability to truly trust someone and know that they will catch them when they fall. Even Faith she knows we love her and are proud of her but with her general anxiety disorder she never trusts that we are ok if she doesn't get great marks or get first in a race we constantly have to repeat it over and over to her. it is like this anxious little man sitting on her shoulder always whispering negative things and we have to sit on the other shoulder whispering positive things to counter the GAD all the time. I guess kids always want to please there parents and imagine how difficult it must be for a special needs child when they find life difficult in general they must constantly think they are never good in anything. But we need to teach them to trust that we will catch them when they fall, that we will be that warm blanket to curl up in and we will hold them tight when nights are dark and tears want to run down there face. They need to take that leap.

Belief

I pray that as Faith will grow she will believe in herself, in her abilities, in her soul and heart and believe that she has a place in this world, regardless all the silent disabilities she suffers with. That she believes that we will always encourage and guide her and that she will believe that her life journey is already an accomplishment considering she could of died. I pray that she will believe that life is beautiful and she will break through all the negativity and words like she cant do this and she cant do that and believe that she is an awesome, beautiful, sensitive, loving child and she has a lot to offer this world.

As a parent of a special needs child

I have confidence in my child Faith

I have trust in my child faith

and I believe in her

these 3 things i need to teach and tell her each day so she never will forget the amazing journey she started and that she will accomplish what God has in store for her regardless her special needs. 

Have Faith in your kids too.

We are parents with special powers

"No one is in control of your happiness but you; therefore, you have the power to change anything about yourself or your life that you want to change."
Barbara de Angelis

As A parent of a special need child, I realize every day that we have the power in our hands to make or break there lives. Everything we do, and say is impacted on there progress and enrichment in life. Every breath we take, moment we waste, we miss out on getting them that little further.

Power is a dangerous thing we need to make sure we use it wisely and for the right reasons for ourselves as well for our kids. For honorable reasons , not selfish, not to make our stress less or time easier.

P  - Protect and persevere always
O - On every occasion spend moments of value
W - Will power to go on
E  - Encouragement at all times
R  - Right choices for your child

Power - The ability to do something or act in a particular way, esp. as a faculty or quality

We define there quality of life, how they will see the world, friends, learning, obstacles, challenges, love. We have the power to show them that things are possible regardless the obstacles in the way. That the reward is greater cause of the difficulty in obtaining there goals. That life is still beautiful . We create our own world of happiness, and belief in the impossible

I know many see me as the Mom with a child with many disabilities. But i see my girl who will give me a hug not because she may need it then but because she sees i may need it. I see my girl laughing to to the music and the joy of dancing and just letting go and having fun. i see a girl that is grateful for parents that love her and think she is the best daughter in the world. I see a child that has shown me how moments count , cause time flies and how every achievement is a great step in the right direction to her future.

We both have taught each other about life, love and special moments and the power life brings and can take away. The power of never giving up when it seems impossible and the power of a hug when the bad dreams come from the anxiety. The power of unconditional love for your child to keep them going when things get a bit too much. The power of accepting them just the way they are, because they are perfect in your eyes.

We are parents with Special powers . 

The Silent Disabilities

This is my beautiful daughter Faith

I know for the last 2 and 1/2 months have been talking about her. All the trials we have overcome from her been born premature, the adhd, the anxiety, the learning disability, spatial problems, low muscle tone.

Tell me what do you see.? I see a beautiful, extroverted, strong willed, lovable, sensitive, passionate child that has been on deaths door and has overcome obstacles that many kids have never endured, feeling kids have never felt and fears that children cant imagine. 

The silent disabilities that no one can see, because all the disabilities are mental, psychological and on the outside she looks like any 11 year old of her age and because of that people cant understand parents that are over protective, worry more, have routine and are stressed about every little thing. Because they don't deal with the days that she is so all over the place you don't know what to do to keep her busy, or that she gets anxious and upset cause the cat is outside and something is going happen to him and we have to calm her down, or when she has tests and studying is longer and more draining cause she cant understand it and grasp it as easy as every one else and every ounce of energy you have you give over as a parent to help her remember, focus, concentrate, be calm, not stressed and still wake up in the morning and go to work and work a full day and smile and go on .

Have you heard people say the word FINE. OMG how i despise the word . All will be FINE, she strong she be Fine. Have you had that.! I literally want to throw something at someone, seriously!.  Until you have dealt with a child with ADHD or has GENERAL ANXIETY DISORDER or goes to a learning disability school and struggles in every subject , or cant skip, , balance or ride a bike or climb or do simple cart wheels because of her LOW MUSCLE TONE. Please do not come and tell me things will be FINE.

Having a child with a silent disability, a disability that cannot be physically seen is very frustrating. People cant relate to something they cant see until i actually have to explain a scenario for them to understand the depth of it.

We do have a lot to be thankful for, please don't misunderstand me, but sometimes i feel like i am on this island all alone and everyone is on some other island partying it up and frankly been FINE , because you the only one that grasps it all. .I stay positive because i have to, i motivate because i must as parent of a special needs child it is what i must do to keep her going and help her to get through life and love and obstacles and all the challenges and help her cope with this all as an adult one day.

My beautiful miracle baby i would not change for anything, she to has taught me about life and what truly matters and to see the world in a different way. All i ask is please don't use the word FINE. nothing IS fine, and nothing is okI it will forever be apart of her and it will never go away, so be careful how you speak to parents with special need kids. Choose your words carefully and if must rather just give a hug cause sometimes we not asking for advice, we just sometimes need some one to listen.

The silence

Im in bed not a sound. Faith is sleeping husband working late tonight, but in this silence I feel I csn breath let go and just be. Our lives are so busy the whole day some of us work somr of us dont but never stopping for one moment always thinking, planning, worried about our kids. In this silence we get to re group and maybe just maybe for 5 min our brains can stop thinking and planning and researching .        
Take a breath for yourself.  Find your quiet moment and just close your eyes and try relax. I know its alot to ask, but it is in those quiet silences we find clarity and peace and strength to carry on
It is in those times when our minds are frantic and cant rest and we begin to just find that we might be looking for , solutions or find acceptance for things our hearts are finding difficult to deal with.  If tears fall so be it just breaathe snd let go and find time for silence. It can renew you in ways you cant imagine.  Remember your child with all these special needs , they needs a parent that is able to find that time for silence, because one day you need to show your child how important that time is to renew there mind body and soul for them to carry on.

Believe that you are the most important person in your childs life. You need to, you deserve to find time for silence so you can go on.