Her first real Mama.

Sophie is my little miracle, she is truly my inspiration. Sophie has begun to leave me baffled in so many aspects of her development, it’s awesome!!!! A lot of those milestones we were told she would never reach she has already surpassed, we are so thankful for those amazing moments.

Sophie began to imitate the word “mom” several months ago, it was huge! There was a time when I thought I would never get the opportunity to experience these moments but as I have learned what we think about our lives and God has planned for us can be completely different.

For months when Sophie was asked to say momma she would, it would take the persistent request from me or a single request from Emily her big sister but she would comply. It was awesome to hear her vocalize a word, any word but especially “momma” even though it was prompted.

It was about three days ago, I walked in from a long day away from her and to my surprise Sophie ran to me with her arms up in the air and as soon as I embraced her and picked her up she said “mamma”. IT WAS AMAZING!!!!!!!! 

I could not believe that she finally got it, I am “momma”. I could not help but allow the tears to flow, how could I not. These are the moments we live for, those unexpected moments more powerful than any we thought possible and more poweful that we could have ever imagined.

She called me “momma”!!!!  

These are the moments God speaks to me, he tells me he loves me and hears all my prayers without saying a word. He knows what my soul longs for to elevate me to that place of inner peace and love and he gives me just that. HE IS AWESOME!!

Some may not understand the power of a single word, a single word can change your soul. A single word can change your faith, a single word can be that miracle you’ve spent your life waiting for. And, if that word and the association of that is against all the odds that were given what is left but a pure miracle.

Something I have never shared about Sophie is that she has Periventricular Leukomalicia. Periventricular Leukomalicia,  is a brain injury that affects infants. It’s  a condition that involves death of small areas of the brain tissue around fluid filled areas called ventricles. The damage creates holes in the brain, “Leuko” this refers to the brains white matter and “periventricular” refers to the area around the ventricles. PVL in much more common in premature infants than full term infant; since Sophie was born at 37 weeks but was 32 weeks neuroloigically she was considered a preemie at birth. There is still no clue as to why or how this happened to Sophie as I had no physical injuries while she was in utero, they can only suspect that it could be from a traumatic birth.

If I begin to dig deep into Sophie’s journey it becomes to unbearable for me, it helps me realize I am not yet where I truly want to be. Her journey still hurts, more than any pain I have ever endured in this life. It is as present as the day she took her first breath, and through it all I am so grateful for that first breath. But, it is there. That lingering heaviness, that feeling that something is not right.

Sophie’s existence is a miracle, her doctors do not understand how she is still alive. But. she is!

I must keep going, I must continue to move forward. These amazing moments are the ones that help keep me going, the ones that help me move past the fear that can easily over power me. Through it all there is hope and that will never end, how could it.?

She said momma, she ran to me with her arms ready to embrace me; she looked into my eyes and said “momma”, she knew who I was, she wanted me and made sure I knew it. She said it, her first real “mamma”.

Despite ALL the complications, despite the grim diagnosis’ Sophie wants me to know she is there, learning everyday and becoming the person she was meant to be. Only because that is who she was meant to be without the diagnosis’s, the disabilities and the limitations. This was who God intended her to be and that is enough.

 

 

 

Why I hate the R-word

Yesterday another CdC mom posted about the use of the R-word on facebook, after I commented on her post several times I bowed out of the stream because, well….I will not fuel ignorance. I refuse to allow myself to argue with ignorant close minded individuals who cannot see passed what they want to see. The more I try to educate people the more disappointed I am in the direction our society is headed in.

I HATE the words Retard or Retarded, the same way I HATE the words faggot or Niger; those are words that are used with malice and hate. We live in an era with so much technological advancement but despite our many advances as a human race we have yet reach to the most important achievements in ourselves. Acceptance,  Peace, Understanding and Love. It starts within ourselves, we must love ourselves not who we think we are or the material things in our lives. Instead what we see are people obsessed with vanity, huge ego’s, negativity and hate, and believe it or not it all ties together. Sadly this is what our younger generation is learning and this is why it is so important to educate people, especially the younger generation.

The R-word is a hateful, sad word. It has been and is still being used as a way to describe someone who is worth less than another, that is wrong. We are all worth the same, a human life and there is no price tag on that. We are ALL different, there are no two people exactly alike in the world, think about how boring the world would be if we were all the same.

People defend the use of the word and say it’s use is no big deal that it is taken out of context, that is only what they tell themselves so that they can continue to use it and feel no remorse for the lives they may affect.

ANY word used in a hateful, demeaning and insulting manner is WRONG.  Words matter, a simple hello or goodbye could change a person’s life forever, and I will never understand why people think it is ok to use negative words like the R-word. The R-word is a word that has been used to separate, discriminate and demean others since it was first originated. Saying it in a joke or to a friend does not erase the essence of the word, the word is tainted by the affected lives that follow it, by the pain it has caused and continues to cause and the lives of those forced to live in the shadows because of it.

I was never a fan of that word even before I became the mother of a child with Special Needs, but being on the receiving end of the word is more heartbreaking than people imagine. It is difficult for many to understand because they do not know the pain that follows the word. It can be devastating and is devastating.

We must choose not to use hate, we must choose to want to make a difference. This is our world, these are our children. What are we teaching our younger generation if we remain in silence if we do not find the strength to speak up, and teach wrong from right.

We all have a choice between good and bad, we are all taught this as children as we are all taught that actions have consequences, a word can be just as devastating as an action. The choice is yours but think about where our civilization will be in thirty years if no one speaks up, or stands up to make a change, to do what is right.

 End the Word 2013

The R-Word and why it’s wrong

 

How far she has come.

With each passing day I am more amazed at the progress Sophie is making, she is a fighter. Her will to learn and live are truly inspiring, it makes everything else seem so insignificant.

We were told Sophie would not survive past the age of 2, she will be 5 next month.

We were told if she lived she would be in a vegetative state and would never learn. Today with a heart full of love, hope and gratitude I will tell you how far she has come.

Despite ALL of her medical issues she is thriving and happy. She smiles everyday, her laughter is contagious and her beautiful innocence is unlike anything you could have imagined to have the opportunity to experience. There is this immense peace that surrounds her.

Sophie CAN walk! She can run and has begun to jump. She is so active it is truly an amazing sight.

Sophie CAN eat, she LOVES food. She may not yet have the ability to chew solid foods but this does not stop her from enjoying what she loves. From oatmeal to rice and beans to ice cream she enjoys it all. I used to think I would never see the day where Sophie would no longer be a slave to Pediasure and the blender, I was so wrong.

Sophie CAN love. She loves all those who surround her, she can give kisses, hugs and loves to cuddle. And she knows when someone is sad, especially me. There is no hiding your emotions from her, she is highly intuitive and extremely sensitive to the energies around her.

Sophie CAN make choices. If you give her options of different foods or movies she will chose what she wants without direction from someone else.

Sophie CAN communicate. It may not be with words but she gets her needs across and has no problem expressing herself. Just because she cannot speak does not mean she does not have words, her words come from signs or expressions and utilmately all the words we, her family have for her.

Sophie CAN participate. Sophie loves to be around people; while her health prevents her from truly experiencing the world when she is given the opportunity she gives it her all. And even sensory processing disorder won’t stop her.

Sophie Comprehends. The doctors expected her development to not flourish but that did not stop her, Sophie understands. She understands more than what I would have ever imagined she would have the ability to comprehend.

If you tell her let’s go bye bye, she will try to undress herself because she knows she has to change her pajamas before she leaves the house.  And before you tell her that its bath time be certain you are ready because she will not wait, she will be in the bathtub before you know what hit you. And be forewarned at dinner time you cannot pass her up, when she sees the kids sit down at the table she runs to her chair and makes sure we know she is ready to eat. She knows what goes on in her surroundings and chooses to react when she is ready.

As I look back at the last five years I feel so very blessed but I also feel sad that for a short time I never thought she would ever come this far.

Sophie’s siblings have always loved and accepted her just as she is, she is just one of them. Their love has been essential to her determination and strength, they complete her just as she completes them. We cannot dwell on the reality that Sophie does not develop like most children her age because then we would miss out of who SHE is. I like to say Sophie is hardwired differently, we can’t all be the same after all.

Sophie has come a long way in these last almost five years of life. She is what love is made of. We are so proud of her, more than words can describe. And while she may not be like everyone else, she is uniquely perfect just the way she is.  The world would be a boring place if we were all the same!

Everyday is a lesson

With each passing day there are new lessons that life can teach us. When you make a commitment and choose to change your mind, heart and soul to let go of hatred and negativity all you need is the will and you will succeed.

I am not perfect, nor do I pretend to be but I like the person I am today. When I look back to all my yesterdays I understand why so many mistakes were made. Accepting the mistakes I’ve made, forgiving myself and others have led me on a path of happiness.

I am happy, the happiest I have been in a very long time. My children are happy and calm, and our home is peaceful. I cannot even remember the last time I cried, that is a blessing. And I accomplished this serenity with a tremendous amount of faith and support from my wonderful husband.

Even though I am in a good place emotionally and spiritually is does not mean my life is perfect, I will have days that leave me drained and spent. Everyday circumstances can effect my moods and my energy level can also have a huge affect on me.

But, with each day and every encounter I have a choice. I can choose to be strong and forgiving or be angry and bitter. I am no longer angry and bitter. Life is too precious to waste one moment of it.

Take each day my friends and find the lessons life is giving you so that tomorrow will always be better than today.

If you are depressed you are living in the past. If you are anxious you are living in the future. If you are at peace you are living in the present. ~ Buddhist Wisdom ~

Your almost 5.

Sophie. Your fifth birthday is only two months away, my heart is full of joy that you are still with us on this earth. From the day of your birth I have feared losing you. When we were told you would not live past the age of two and if you did that you would be in a vegetative state it shattered the dreams I had for you. There was so much heartache that I feared I would not be able to overcome the challenges we were gearing up to face. But today I can tell you that we have faced them and tomorrow will be another day with its own fight. We have fought for you as you have fought for your life. As a team, full of love and an unmeasurable amount of hope that has carried us to today.

You are going to be 5.

These almost five years since your birth have been the most difficult times of my life,  and yet they have also been some of the most beautiful ones. You my beautiful little girl are amazing! You are stronger than words can describe, you have the determination of millions in one tiny little soul. You are happiness and love.

You are my miracle.

You are my inspiration.

You are the reason I am the woman I see when I look in the mirror everyday.

With each day that passes I have new dreams for you. They may be not be the same dreams I once had for you because you my love are not the child I imagined you would be. You are unique as every individual is. I have new dreams for you, I wish for you to have a life full of happiness and health. That you may live to experience the world in all its beauty in your own way.  I dream of you growing into a beautiful young lady, watch you laugh and participate in life as you will always be surrounded by people who love you.

I know that your life will not have the same direction as the lives of your brothers and sisters. I know that you will grow and remain by my side. I know that your innocence will never cease and I love you exactly the way God made you.

You ARE my little girl. You ARE the little girl we had hoped for when we decided to add another child to our family.

You are perfection in the eyes of God and in my heart my sweet little girl. I pray that one day you will understand just how much you are loved. I pray that one day you may learn to know how much good your life has brought to this world.

You have changed me, you have changed us and you were a beautiful gift in disguise. Ahead of you is a limitless world full of opportunities that will never cease as long as you are still here with us.

I love you. We love you, ALWAYS!

There is always light

In a world full of darkness sometimes it is difficult to see the light.

But, there is light.

In a world where discrimination is everywhere, it is a scary unknown where the future will lead us. But there is light; it lies within those who speak it, who use their words to right a wrong. Those who are full on kindness and love and do not allow the darkness to shadow their light.

In a world where faith seems scarce and the world can feel Godless you can see the darkness shadowing above; then you cross paths with one person who has enough faith,  compassion and love to restore your hope that Goodness will prevail.

In a world where vanity, greed and self-preservation have become the priority in the lives of  those who surround us; we worry if humanity will survive. But then you realize there is still more good than bad, that there is more love than hate and you can feel the positive energies flowing through you if refuse to open your heart to darkness.

There is always light, you may find yourself wondering in the darkness but if you focus on the light you will always find your way to it.