I Love You

 

To Kian,

 

“I Love You for all that you are, all that you have been and all you’re yet to be”

xoxo

A Stream Of Light In The Darkest Place…..

 

It is important to know to keep pressing forward.  I often time feel numbed to my son’s situation almost as if I have been hit by a ton of bricks and can no longer move.  It’s like I am in a dark place.  It’s a place I sometimes like to stay in because it means I don’t have to do anything.  I can just sit there and throw as many pity parties as I can allow myself to throw.  In that place I spend lots of time asking “why me?” and “why us.”  It’s a dark place that is hopeless, sad and full of confusion.  But ultimately the darkness is the most overwhelming part.  You feel lost, out of place and isolated.

And then Kian wakes up and sees a box of crayons only to say, “bay-ons.”  Just like that, the lonely dark place I am sitting in has a stream of bright light shinning through.  Just like that, it isn’t so dark anymore.  That light is the light of possibility.  The light of hope.  The light of belief and the light of faith.  Heavenly Father sends me that light, to let me know that all is not lost.  All is not done.  And that joy is not over.  I say this a lot, but I have never believed in Heavenly Father as much as I do today.  I have seen his work in my life countless times.  I cannot even begin to express the gratitude I have.

A really important friend of mine recently told me something that has stuck with me every day since.  She spoke of Heavenly Father’s love for special needs children.  She spoke of how these special children had already been tested in the previous life and passed, they had earned their place beside Heavenly Father already and that they were sent here to test us.  Every part of that message rings true in my heart today. My son Kian is here to be a blessing in my life and test my faith in the Lord.  He is here to bring joy to my life and build my family.  

I would be lying to say that I am happy that my child has to do suffering here on earth but I try and be open to all the beauty that having his presence brings.  See thats it, he passed his test and now it’s time that as a family we pass ours.  We have to show our loyalty to him and to God.

You do not have to share my belief in God to be able to understand how much of a blessing these children are.  What you believe and don’t believe doesn’t even really matter.  Just enjoy your children, no matter what they are or who they are.  That is my advice to any mother.  Special needs mom or not.  Doesn’t matter.

xoxo

Will The Pain Last Forever? Emails Included

I asked a dear friend this question today because she too is a mother of a disabled child.  The emails are below >>>

 

Date: September 24th 2013 11:12am

From: *******

To: *********

Subject: Hi, E****

 

Dearest E****,

Will it ever stop hurting? I know that you know the heartache.

 

Stephanie

Sent from my iPhone

 

 

(((((((((((((((After writing this email I quickly sent her another.))))))))))))))))))

 

 

Date: September 24th 2013 11:15am

From: *******

To: *********

Subject: Hi, E****

 

Dearest E****,

I hope my last email didn’t offend you.  I couldn’t resist asking you if the pain lasts forever.  Forever seems like a long time.

 

Stephanie

Sent from my iPhone

 

She simply replied, “No, the pain doesn’t last forever.” and for some reason hearing that from her comforted me to know that this won’t last forever.  I thank her for everything that she has been to me and is to me now.  Someone so angelic that has really taken me under her wing and been so kind to me when I probably didn’t deserve.  I think that some people in this world are angels sent by God to protect us and there is no doubt in my mind that she is one of them.  Thank you.

Gluten-Free Curried Rice with Shrimp

***Ingredients***

1 tablespoon olive oil
1 large onion, chopped
2 carrots, chopped
2 cloves garlic, chopped
2 teaspoons curry powder
1 cup long-grain white rice
kosher salt and black pepper
1 1/2 pounds peeled and deveined large shrimp
1/2 cup fresh basil

***Directions***

Heat the oil in a large skillet over medium heat. Add the onion and carrots and cook, stirring occasionally, until soft, 6 to 8 minutes.
Add the garlic and curry powder and cook, stirring, until fragrant, 2 minutes.
Add the rice, 2½ cups water, and ½ teaspoon each salt and pepper and bring to a boil. Reduce heat and simmer, covered, for 15 minutes.
Season the shrimp with ½ teaspoon salt and ¼ teaspoon pepper. Nestle them in the partially cooked rice. Cover and cook until the shrimp are opaque throughout, 4 to 5 minutes. Fold in the basil.

Credits to:

http://www.realsimple.com

They Say The Good Die Young….

 

And for some reason I cannot understand this….

 Well let me back up and explain why I am feeling the way I feel.  My son had his appointment today for his official diagnosis.  Leading up to the appointment this morning I was restless and not really sure of what was going to happen.  Would it be confirmed officially this time, that he is autistic or would they delay his diagnosis?  Would they say he is growing out of it or they no longer see the things in him I see?  The whole 2 hour ride this morning I was on edge, nervous, tired from lack of sleep and confused.  Finally this day had come but I am not sure I wanted it as badly as I once did.  Something was going to happen today that could possibly never be taken back.  When we got to the appointment my nerves had settled.  It was going to be what it was going to be and I sure as hell couldn’t change anything.  Within the first few moments of observing Kian, the Dr. came over and said, “Just after a few moments with him I can see the characteristics of Autism.” On the inside that knocked me off my feet.  How can anyone see after only a few moments, literally only seconds with my son that my child was autistic? Why has it become so overwhelmingly obvious?  Maybe I was right to think that everyone in the world will be able to see that.  Maybe I was that dumb all along that I had still not even felt 100% sure at times that Kian was autistic.  Even after a previous evaluation.  After regaining my composure on the inside I took a deep breath and was ready to roll.  We went back and did the evaluation and honestly there was nothing surprising or odd that occurred.  See prior to the appointment I was convinced my son would be a mild case of autism at best with the possibility of being moderate.  I was certain my baby was too bright and too full of life to be anything other.  Well I was never truly prepared for what I was going to hear.  As I waited on him to tally up all of the final scores and make a conclusion.  I was nervous but I was still anticipating the best possible outcome, if there is a best possible outcome with autism.  I wouldn’t get my wish today, I usually never do anymore.  The Dr. returned from his office and sat down to talk…. and I am not really even sure what he said after he officially diagnosed my son with Severe Autism as my mind is heavily clouded these days.  I saw his lips moving and I am sure there was some sound coming out but nothing could quiet the screams or crumbling that I felt inside.  It’s like lethal injection in a way.  You can feel all the pain and heartache but you cannot move, speak or even breathe at times.  You know you are alive but it’s outer body.  The word severe is crushing, devastating and almost unspeakable.  I am not sure if I will ever use the word again after this blog post.  What does severe mean? What does it mean? I cannot process even a simple definition as it seems way more than I can comprehend.  How could something be way worse than I could have imagined? The Dr was very positive and set up all the info that we needed for all of the therapies and medical needs we were going to have ahead of us.  But that doesn’t change the heart of a grieving mother.  

The truth is, I was grieving long before today.  I was grieving over what was to come with my son for a long time.  I knew something was to come.  There was some reason my son has yet to acknowledge my presence or call me, “mommy.”  But if you can believe it, I was grieving for more than one reason.  I know right? Tragedy seems to occur around the same time frames sometimes.  As some of you know my father was diagnosed with Cancer not to long ago.  What a devastating blow for any family to suffer.  Things have not been as cookie cutter or easy as I have led some to believe.  My father’s time here is dwindling down and things don’t look as good as I had once hoped.  He has such a will to survive and such a love of life. He is so positive and I think it has been hard for him to be brutally honest with me because he loves me and doesn’t want me to be hurt.  He has kept some tough information from me at times.  But can I blame him? No, not really because until today I had kept my son’s diagnosis from him.  I hadn’t even mentioned the trauma that we were going through with my son.  I hadn’t mentioned the sleepless nights, long days or the hours spent crying.  I hadn’t mentioned the desperation this has caused, the nights spent up researching or the nights I cry myself to sleep.  I had kept this information from him to protect him and he had done the same.  I think we both realized today that being an open book about what is to come is critical.  I simply can’t imagine my father leaving this earth without spending one last day with him.. one last moment together.

So back to the beginning of this blog post we go.  They say the good die young. Why is that? Why do the good have to die young at all?  Why do the good get sick? Get cancer? Or even get autism?  My father has always been an exceptional man, a business owner, served his country, the local sheriffs department, paid his taxes and was kind to all around him.  Why does he have to die so much earlier than most? Why does he have to suffer with cancer? When there are so many evil people in this world in perfect health.  My son is a beautiful, vibrant and loving person.  He has been kind to every person he has ever come into contact with.  Why is he suffering with autism?  He doesn’t deserve this.  What could two of the most important people in my life, have done to deserve such tragic outcomes?  What I have I done? I think that there are just so many questions in my mind.  And right now I cannot help but sit in the dark and empty “why me” phase.

When people you love are suffering around you, you suffer.  There is no remedy or medicine to fix a grieving heart.  There is no words or saying that can make a bad situation better.  Only God has a say in the end.  I have never been more devoted to my Heavenly Father than I am today and he gives me the strength to carry on.  Every day I wake up, unsure if I can even go on another day.  You can have a great career, nice place to live and all the luxuries and money in the world but when you don’t have your health life can really put a whooping on you.  That’s often how I feel, beaten.  I have a beautiful family, a successful significant other, incredible long time friends and a college education and I still find myself in a bit of a depression over my dad & son.

I try to share some positive and negative (rather real) things on this blog always and I use my blog as a place of self expression and as an outlet to say how I feel not really caring about who judges me.  For every person that is going to judge me for my reality 2 more are going to help me, inspire me and be inspired by me.  The people who love me always will and the ones who don’t never even tried.  So there you have it.

 

xoxo

The Light Is Dimming

The light full of life in Kian’s eyes has become increasingly dim in the most recent days.  I have nightmares every night that when I look into his eyes they will be empty.  With each passing day, I am able to understand him less and less. His tantrums are becoming more frequent/severe and my ability to solve his problems is diminishing.  He sleeps less and less each day and his irritability climbs higher and higher.  I can’t help but think I’m losing my baby and my mind.  My judgement seems much cloudier and helplessness is growing strong.  When he screams out in a high pitched voice, my heart knows something is wrong but I can’t seem to find the answers. I touch his body to feel his temperature and then I check his eyes, ears and stomach before moving on to feel if any bones are out of place.  He usually continues the screaming and throwing his body around. And when I am all done checking him all over, I simply stare at him blankly.  My mouth is quiet and no sound is coming out but on the inside I am screaming, suffering and immersed in desperation.  Ashamed to even look him in the eye knowing I can do nothing for him.  When I looked him in the eyes, the very first time, without words I promised to protect him as I had done for each one of my children yet somehow I had failed him.  The very promise I had made to always keep him safe, happy and secure had been broken.  He was waiting on me to assist him, fix things and make it all right and I could not do any of those things for him.  

He seems the most peaceful when asleep.  That is the best time for me to really look at him and admire how beautiful he is.  How special he is.  I find myself sometimes lost when I am looking at him.  Wondering where things went wrong.  I would love to say that everything is Ok and that he will be just fine, but nothing feels fine anymore.  Life is simply not great, good or Ok.  Autism is like an energetic force sucking the life out of my child and leaving little to nothing behind.  At the beginning of this journey I was like any parent, convinced that my son could be “cured”.  In fact believing in a “cure” is my right as a mother and as a human.  The more I research and study this “disability” the more I am left drained and a lot less hopeful than I once was.  I will never let go of my hope for a “cure.” Or the hope I have that one day I will wake up and things will be just “fine.”  Those things aren’t as attainable as I once thought but they are always in the back of my mind. I will always be asking God for a miracle

I spend countless hours wondering about what quality of life my son will have.  What will be his fate?  Will he ever become independent or will I spend the rest of my life taking care of him.  I love him and I could easily spend forever with him but I can’t help but wonder what would happen to him if I wasn’t here.  Who will take care of him when I no longer can? After all no one could ever love him as much as me.  I would feel no peace in my heart leaving him behind in this world.  

Tomorrow I go in to finalize and come up with a treatment plan for my son.  And brighten that light back in his eyes.  Today feels like a huge loss.  Today I have to let go of the hopes and the dreams that I had for my child the first time I held him in my arms.  I have to burry what I thought our lives would be and welcome what’s to come.  Tomorrow is a new day for us and I am not sure what’s in store.  I can only imagine the struggles we are up against.  And on my toughest days my faith can be shaken up a little bit but my love and belief in God is always solid and strong.  I still feel as strongly as ever that Kian is a gift from God.  He is so exquisite and miraculous in so many ways.  He is special, funny, loving and so brave.  He is natural, raw and innocent.  He has the ability to touch other people’s lives just by being who he is.  There is something about him so magnetic.  I felt it the first day we touched.  People are drawn to him and connected to him through something so much more powerful then despair, loss, disability and even Autism.  

 

xoxo

Without A Voice

They say that a voice is a beautiful thing, so why do parents become so irritable when their children talk all day long?  I was once that parent.  A parent who often reminded her little girl (my first born) to let her mouth take a “rest.”  I constantly told my little girl to please have a few moments of silence, well… I would go on to have those words shoved back down my throat.  But how could I have known back then?  How could I have known that not hearing a child’s voice would have such an impact on me?  How would I have known that the very thing I complained about would be the one thing I was desperate for?  I guess I couldn’t have known.  

I guess thats the thing about people, you don’t know what you got until its gone.  Cheesy? Yea, at one point I would agree but not anymore.  My once irritation has become my obsession.  I think about my child’s lack of communication every minute of the day and when I say every minute, I mean it.  I wonder what it will sound like for him to say, “mommy” “I love you” “can I have some milk” or even just “I.”  Things he has never truly been able to tell me.  Sure, from time to time he echo’s you or repeats after you but nothing is intentional nothing is really functional.  I find myself spending so much time asking other mothers in my similar circumstance, “when will he call me mommy/mom/ma/mama?” “When will he acknowledge that I am here?”  Questions that I know nobody holds the answers too, not the doctors, not the therapists, not other moms and certainly not me.  So why obsess over it? Because I cannot control my need for the very things I used to take for granted.  

I could tell fairly quickly after Kian turned one that he was different.  It’s like all of the children his age went on to develop normally but he stood there frozen in time.  They learned new words, places, things and even put sentences together but for the longest time Kian didn’t speak.  At times he babbled and he even learned his ABC’s.  We thought he was so smart with some of the things he could do. During that phase I was so defensive of him, if anyone even let on that there was an issue I was ferocious in my protection of him.  I was his mother and as far as I was concerned he was perfect. 

With every oncoming month, the gap between Kian and his peers fell wider and wider.  Until I could no longer hide the fact that he wasn’t developing at the level or rate he should.  I had to figure out what was important.  Was it more important that people thought he was perfect or that I got him the help he so rightfully deserved.  So I did.  I started looking for people to help my son.  I looked online, in books, in the yellow pages and even reached out to other mothers for advice.  I started to put together the “support team” that it was going to take to get my baby back on track.  At some points I have been so caught up in changing our situation that I have spared no expense or hurdle.  There was nothing I wouldn’t do to “fix” him.  There is nothing I wouldn’t spend.  I would give up everything even my own life for him to have the life he deserves.  

Guilt and grief have been no stranger to me as I have spent countless hours trying to figure out what I can do to shield my daughters from what had become almost like a nightmare to me. I didn’t want them to be affected by their brothers special needs.  I wanted to shelter all of them including him from any pain or distress that the road ahead might yield.  I’ve gone over every mistake that I have made in my mind time and time again.  I spent hours examining every incident/sickness/medicine I had encountered prenatally.  What could I have done to cause this, what could I have done to bring this fate on to someone I had always loved more than myself? How could I have prevented Autism from sweeping through my family like a tornado and shattering every piece of what I thought this life would be? Sure, they tell me it wasn’t me or my choices.  That I had nothing to do with it.  And this is God’s will. Right? Isn’t it? That is so easy to believe when you are sitting on the other side of the table.  So when guilt and grief were on vacation, anger and disappoint were always in town.  I easily became so angry, but at who? Myself mostly but honestly half of the time I had no one to be upset at.

See the thing about it is, when you bring your children into this world you expect nothing but the best for them.  From the time they are in the womb you begin planning out each moment of their very existence.  When making those plans you never include things like Autism.  Those things don’t exist in your mind.  It isn’t until something wrong is staring you in the face that you realize this plan isn’t what it seemed.  This isn’t what you had in mind, this isn’t what you thought was in store.  Something somewhere went terribly wrong and you have no idea how you ended up here.  

I never want others to feel sorry for my son or to look at his special needs as a sign of weakness because thats just it…. he’s stronger than anyone I have ever known.  Rather, I want them to take away a very important lesson in this life that love does conquer all.  That no matter what the situation is that you are facing, no matter how dark the path may be… that you can make it through anything as long as you love one another.  God has blessed me with a gift that I have never earned or ever deserved.  He gave me someone who lights up my entire world on its darkest days.  He gave me someone who is vibrant, happy and joyful.  Someone who smiles often, laughs frequently and loves hard.  Someone who trusts willingly, believes easily and truly wants to be in this world.  A world that can sometimes be judgmental, misunderstanding and harsh but when you are born in a family of love, no disability can defeat you. Believe.

xoxo