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Thursday, September 29, 2016

I Miss...2 weeks today

I miss your smile.
I miss the way you spoke with your eyes and how much they said.
I miss you sitting on the floor cutting up paper into tiny pieces.
I miss your cluck.
I miss your determination.
I miss massaging your feet.
I miss the sounds of the machines.
I miss having to watch what you wanted to on TV or just the right movie for that time.
I miss how you smell.
I miss the softness of your voice.
I miss you laying in bed with mommy and daddy during thunderstorms.
I miss your laughter.

You may not physically be with us any more but you will forever be with us...in our minds, in our memories and in our hearts. Ian, may you find your purpose.

Love is always patient and kind. It is never jealous. Love is never boastful or consedit. It is never rude or selfish. It does not take offense. It is not resentful. Taught me everything about life, hope and the long journey ahead. I'll always miss him. But our love is like the wind, I can't see it but I can feel it.

Do you know how brave you are? My hero...so brave. You have taught us the meaning of life....not.only are you my hero but so is Becca.

You taught us the meaning of life, you taught us to cherish every moment and to make every day memorable. We will do our best to continue living that way, treasure, dream, live.

You were one of the greatest gifts to come into our lives. Your smile made everyone else smile.
You asked us many times about Heaven...would there be TV, popcorn, both Ghostbuster movies, your fan...we told you yes, they would all be there plus more. No more trache, no more vent, all the dumplings you want...

You asked if there were phones in Heaven, and as we told you, when we are ready we will call you so you can meet us.

The invisible string will keep up together, your smile when I read you the story will always be on my heart.

We know you are ok up there. Don't worry buddy we will eventually be OK.

"For now, remember this: When you feel low on smiles and you feel it’s over before you’ve had a chance to begin, dig deep and remember your purpose. Laugh loud, live in the moment and dream big. And most of all, remember you mattered in this world"

Tuesday, September 20, 2016

160 months, 24 days

I sit here on the sofa in a fog. Did it really happen? 5 days ago he passed away and the fog began. I'm numb. We had thought about this time period for so long, prepared. But can you really prepare, maybe mentally, think you can emotionally but not really. My little man is gone. People have been in and out of the house since Thursday morning, part of me has found it helpful, the other part of me has been overwhelmed. Just taking it one step at a time. 

Ian was with us for 160 months and 24 days. Most of the time it was a joy even with everything we had to endure taking care of him. More times than not we were caregivers to Ian more than parents. He knew how to get to us in the best way possible, knew when we needed hugs and to be told he loved us. Yet at the same time he was every much a boy, all boy, coming into his own teenage years. If he knew you well he would throw you under the bus, even when you thought he had your back. He enjoyed all the typical boy stuff, laughed when people burped and farted...isn't that what all boys like. His smile was radiant. The light in his eyes shined bright up until the last few days. His spirit was large. His soul was old, always needing to make sure everyone else was OK and taken care of. The bonds he had with many were incredible, one everyone will hold onto. A piece of my heart is missing and will always be missing. I am a better person for being Ian's mommy. We will eventually learn to live the life he wants us to live.

G-D saw he was getting tired
And a cure was not to be,
So He put His arms
around him
And whispered,
"Come with Me."

With tearful eyes we watched him suffer
And saw him fade away,
Although we loved him dearly
We could not make him stay.

A golden heart stopped beating
Hard working hands to rest,
G-D broke our heart to
prove to us
He only takes the best.

Friday, September 16, 2016

Rest in Peace


The world lost an amazing person today. At 7 am, September 15, 2016, my son Ian Alexander passed away. For 13 long years he put up an extraordinary fight against the rare disease that was breaking down his body. During that same time Ian touched many lives in many ways. He gave us so much joy and happiness over all those years.  Even during his most painful days he was able to smile some and make us all laugh. Just being able to call him my son, even for such a short time, makes my heart fill with joy and honor. I am very proud of the person Ian was and the man he became. We always told him there was nothing he couldn't do and he believed in that.  His favorite superhero as we all know was spiderman. But I think we can all agree Ian was the true superhero. 

Ian, my son, my hero, you are free from all your burdens. You are free to move and run about the world as you see fit. No more medicine, no more turn machines and most importantly no more pain. This is all Becca, mommy and daddy ever wanted to for.

We are blessed to have had you as our son and as an inspiration. You will always live forever in out hearts, minds and souls. You are my true superhero, you are SpiderIan.

I love you little man, my best buddy forever and always.

Wednesday, September 14, 2016

Wednesday, September 14th

Today Ian's doctors were here.  He continues to sleep much of the day and has still not eaten. The doctor says his stomach is descended; indicating that that his bowels and stomach are shutting down.   Pain medication has been adjusted to every four hours and it can be given more frequently if needed. At this time there is not a need to change his vent settings or his therapies.  The plan continues to as I reported in my last post, Ian is to be kept as comfortable as possible. We appreciate all the calls, texts, Facebook messages and visitors.  Remember to treasure yesterday, dream for tomorrow and live for today.  

Marci

Tuesday, September 13, 2016

our new normal...

Over the last few days things have declined for Ian. He has not eaten in 4 days, drinking some, and sleeping a lot. We have had multiple conversations with Gilchrist. We feel we are at the beginning of the end. Our goal as it always has been is to keep him comfortable, which he seems to be. Becca will be sticking with her routine until we feel she needs to be home. As for Brian and me, we are planning on taking work one day at a time. We have known for years this time would come, however., it is more difficult than we thought it would be. I will update when I can. Thank you all for being a part of our village. 

Thursday, September 8, 2016

New Normal or Still Recovering?

Ian has been doing OK....not great but OK. He contracted CDiff after his last hospital stay. CDiff is an inflammation of the colon caused by a bacteria which leads to watery diarrhea. He has been on antibiotics treating this and I think we are seeing an improvement. Only time will tell. In addition, Ian has been sleeping 3-4 hours a day along with sleeping all night. When we are suctioning, his oxygen levels are dropping, usually recovering quickly but this is something he has not done in a while. We have been out 4-5 times since being home from the hospital and 1/2 of those times, Ian has had problems with his in-line HME. This requires extra resistance for him to breath and he has not handled this well and required oxygen. Usually this means his vent settings need to be changed...we do have a call into his pulmonary doctor.

I am having a very hard time emotionally dealing with all of this, on top of winter approaching. Is this our new normal? Is he still recovering from the pneumonia, sepsis and now the cdiff? Only time will tell. Putting emotions into words is hard. I'm scared, angry, worried...but at the same time, I know how much I love him. Watching him fight every day, is heartbreaking while empowering. My heart hurts and feels empty today. You try not to think about where the future is taking you, especially when you know it is devastating for him. When will that time come, no one knows. All we can do is continue to make the best of every day and every minute he is here. 

His smiles don't seem to be as strong. He is not getting his tongue out as far as he was...I think his muscles are getting weaker. His energy level is decreased...at least for the time being. He appetite seems to be less...again is this all a new normal or still recovering. 

Only time will tell. Sorry if this post seems to be all over the place, but that is where my mind and heart are. 

Monday, September 5, 2016

GIVING BACK TO OUR LIFELINE

Well it is time again…the Rock n Roll Las Vegas 10K November 13, 2016. Walking this is a personal challenge, but I’m not in this just for the glory. I’m walking for something important. I am walking to raise money for Chai Lifeline, a wonderful organization dedicated to helping very sick children and their families. As you may know from my blog, www.mlsbks0422.blogspot.com, or from last year, Chai Lifeline is so important in our lives. From big brothers to big sisters, siblings events to Camp Simcha Special, Tuesday night dinners to extra meals, visits when needed to mom’s nights out. Those are just a few of the wonderful things this organization has done for us. After 4 years, of working hard, Chai Lifeline got a Baltimore office... many more good things have started happening because of this. I can’t wait to see what’s instore for the Mid-Atlantic Region. As Chai Lifeline does so much for us, the least I can do is the 10K and give back to them. However, I know I can’t do it alone. I need your help.Chai Lifeline is a wonderful organization that provides year–round emotional, social, and financial support to more than 4,500 children and their families every year. Chai Lifeline´s programs and activities change their lives forever, returning joy and hope and enabling them to live full and happy lives despite the presence of illness. Its most famous program is Camp Simcha and its sister camp, Camp Simcha Special. Every year these two camps offer 450 kids a chance to forget about illness and just be kids again. To get a better idea of what Chai Lifeline does for families, please watch the videos below. I know they will touch your heart the way they touched mine.Training is not easy, but neither is dealing with illness. If the children of Chai Lifeline can fight each day, if they can push themselves to go through hospital stays and treatments, I can do this for them. But I can't do this without your support. I need your help to raise as much money as possible for these kids. So please, push the donate button and help me put smiles on the faces of sick children. Let's do this together! Let's make dreams come true.
Best - Marci