Long Way Home

The past few weeks I have become particularly sensitive to losses. There was an anniversary and a birthday of a wonderful man who was killed 4 years ago. I was blessed with the opportunity to read about a deeply personal moment frozen in time for a dear friend. I listened to an interview with Steven Curtis Chapman talking about the loss of his daughter. Little Avery passed away and it has all had a profound effect on me.

There is nothing you can say in those moments. There is no real tangible comfort is there? I lost my Emma when I was only 14.5 weeks pregnant and sometimes I feel alone. I feel like I can't relate to people who have had real tragedies. My Emma is real only to me, because she never took a breath, because I never held her. Sometimes it feels like she was never really here. People have said horrid things because to them miscarriage isn't a real loss. Whatever the reason I feel that way doesn't matter. It's how I feel. Some people meaning well say "everything happens for a reason" and "god doesn't give you more than you can handle" I always feel angry when I hear that. I don't think everything happens for a reason BUT I do think that God can use ANYTHING for his glory.

Hearing about those other losses always brings me to a thoughtful place. A few years ago that place was very dark and scary, but not too long ago I had a dream I was sitting beside Emma and holding her hand. It was peaceful and somehow I was able to hold onto those feelings of peace when I think of her. But losses such as the ones I have seen lately bring me to another place.

I talk all the time about the deep sense of loss I felt when Sammy was diagnosed. I have even spoken of the sense of loss I felt over Grace's injury. But Avery really got me thinking.
Even when we KNOW our time is limited (as all of our moments are) we still assume there will be more. You are never ready to let go of a loved one. How unfair it all seems sometimes doesn't it?

Avery's mom and dad thought they had more time. So did I. So did my friends. I am sure so many of you did as well.

We never know when our time is up. I look at Sammy and I think about all the time I have spent forgetting to just live.  I worry all the time. The shock of little Avery passing so soon has me really prayerfully thinking about death and dying, love and loss, and faith. Boundless faith, because for me, it's the only way I got through Loosing Emma, Divorce, Sammy being diagnosed, fear, anger,depression, Grace being hurt, and every other step I have taken.

I know one day we will be with our loved ones. I know one day everything will make sense and I will see the true beauty in all of God's plan for me, for Sammy, for Grace. I hope Emma knows me in heaven. I wish I could hold her just once in my arms. Someday we will all be home in heaven, but for some of us the road is just a bit longer.

No one should ever loose a child. It doesn't seem fair. If you have a moment and you are the praying type please say a prayer for Avery's parents and family. I am quite certain they need them.


And as Always joining up with the beautiful amazing Shell over at

Dreaming

Sammy  has come into my bed here and there over the last year. It doesn't happen often anymore but it does still happen. Last night was one of those nights. I woke to his hand against my back, fingers splayed and his nose against my shoulder. It's his plugged in posture. So very rare for him to connect to me. It's been a long time since he felt the need to be "plugged in". As soon as he woke a bit and I woke too the hands were down and his face was mushed into the pillow.

It seems my boy had a nightmare. It was enough that it forced him from his comfort into my space. It ripped him from where  he likes to be ,out of his comfort zone, into my energy to reassure him. He NEEDED me to be there and he NEEDED me to be close. I was his comfort. I can count on one hand when that statement has been true.

Turns out his favorite phrase " I hate you mom ,I hope you die" came true in his dream. Both his sister  and I died. He was distraught and perplexed by the feelings that overtook him. He was heartbroken and tearful.

He almost said it again today, but he stopped and Said " I hate you, and I hope you... don't die! But I'm really MAD you ruined my life"

I may not be able to win them all but I do think I won this one

Th Ghosts of Christmas Past

 I admit it. I am not a fan of this holiday. While some families are tucked in their beds with visions of sugarplums, I am trying to figure out a way to lesson the sheer volume of meltdown occurring in my house. Sammy has his issues and the holidays just exacerbate that now add into that a baby who is having her first Christmas, 2 teens and a 4 year old with sensory sensitivities.

2008

 I don't want to miss a minute of Grace's wonderment  with the lights and sounds, but instead I end up often trading that for a hold on Sammy. I don't want her to grow up thinking chaos is a way of life. I don't want her to look back on her childhood and be sad.
 I don't want Nate to feel lost in the shuffle between a girl baby  and a brother with "issues" he cannot even come close to comprehending. After all how to do you explain autism to a four year old? Why the hell should I have to? Why should he even have to carry any of this. I sit here as Nate becomes overwhelmed with the noise and stress level. Sammy thinks it's hysterical and then begins the "crazy laugh" Nate gets even more upset.
The older boys handle it well but poor AJ gets crap so often. Sammy can trip over his own feet stumble and fall, get up and punch AJ. Because somewhere in his head he thinks it's his fault. Everything becomes AJ's fault in Sammy's head, sometimes when AJ isn't .even.home.

2009

Today is Dan's family Christmas. We have gone over behavior and expectations. We have done a social story. We have talked about it and role played. Still, while  he may hold it together while we are there I can almost place bets on how far from the party we get before Sammy looses his crap.
 I try not to focus on Christmas past before we understood what the issue was. Christmas past when I was told I needed to "get my kid" because he was touching everything and making other family members uncomfortable. Where I got looks and stares that threw me for a loop. When Sammy punched me in the face in front of a group of people. When  I was treated like I didn't exist and neither did he. I still hurt from those things, they don't go away. Yet, every year I put a happy face on suck it up. I try to make this time happy.

2010

I'm tired and I am worn out. There is still this small glimmer inside of me that hopes for a great day tomorrow. I don't get to be hopeful often. I protect myself from that like the plague. I want him to show excitement. I want him to play with toys. I want him to be happy and for others to see the ray of sunshine inside that boy who lights up my life. I need him to engage, be present,show up. I know he may for a second or two here and there. He may be socially appropriate some of the time. Truth is he will most likely be running laps around the house or swinging on the swings.  He may not be present at all. It hurts to know that in the back of my mind, but I still... remain hopeful. Like a child on Christmas even who wants something nearly impossible I hope and I pray but in my heart of hearts I know I wont have the Christmas I want, so I just need to WANT the Christmas I have.

It just always ends in tears.. for both of us.

daring to dream and wanting to fly

      I am allowing myself this moment, to dream...
 It's been harder and harder for me to dream about Sammy's future. We just went to speak to someone about life insurance and in doing so had to prepare for the eventuality someone WILL have to help care for Sammy in some capacity when we are gone.
      But for now I am taking the time to dream...
That some day he will find something he loves to do,that is amazing. That he will find love and have dreams. That he will succeed in life and someday outrun autism enough that it is in his shadow and not the other way around. Because Damn it It should be that way.
The simple things we take for granted as moms and dads and grandparents of  neurotypical kids. He should be learning to tie his shoes and instead he's screaming and writhing on the floor just trying to put them on. It hurts watching him struggle.
       But for now I am taking the time to dream...

That this morning he wakes up with a smile. That his windows are wide open and the sun is shining bright. I miss my Sunshine Sam, it's been too long. I am dreaming of a morning where breakfast isn't full of tears and everyone is ready on time. Where I don't spend my morning trying to figure out what new issue has been created in his mind or by his clothes. That this morning he looks at me and really LOOKS AT ME tells me he loves me with a smile and gives me a hug, without me having to ask. Without me having to take him by the shoulders and hug him and force myself into his world. Because Damn it I am tired. I don't want to feel like I have to force myself on him every day. I want to be in his world. I want him to want me there. Today, he does, because I am taking the time to dream...