learning to navigate the world, j-bear style

Month: September 2013 (Page 1 of 3)

Mourning a Friend

Hey. Hey all of you three people who read this blog.

One of my friends passed away this past week. His name was Brian, and he was a fighter. He and I would exchange emails, Facebook messages and even got to have lunch together while he was in Boston for treatment once, which was a lot of fun. He was there to talk to me through some of my hardest times and despite raging sarcasm always helped me keep my chin up.

I am hoping we, the internet, can do something in his memory.

Please consider donating to the National Kidney Foundation in his name. You can do so at either http://www.kidneyhealth.org  or by mailing contributions to National Kidney Foundation, Team Cormier, 85 Astor Ave.  Norwood MA 02062

He is survived by his loving wife, son, and family which included nephews he could never stop talking about, he loved them so much.


Hold up, everyone. Going to get sappy here. This is written to my boy, who currently has a cold and a half. It all started with a thought that occurred as I was putting him to bed so bear with me.

Little man, you are the biggest challenge. There is nothing about our lives together that does not involve creative thinking or learning a new way of being it seems. Every day there’s a new challenge and every day, we just go about it like this is what normal people do. It’s our normal.

I’m grateful for that.

When parents await their first child or spend years waiting for that first child to come, however which way they do, they make all these plans and have all these visions. When I found out I was having you, I was so scared. I saw how my parents behaved. I saw how unwanted and unloved I had been. I had all these broken pieces of myself, some so jagged they will never not hurt. I had these wayposts of good things and these pieces of solid foundation laid by the good people who came through my life when I needed them.

What I didn’t know was that I needed you.

Well, let’s clarify: Some part of me knew it. It’s how I loved you long before I knew you. But I didn’t fully embrace that part, or didn’t fully understand it. It was just a lizard brained instinct that blossomed into oh so much more once I saw it for the truth it was.

You stormed into my life, full of chaos and cute, and you’ve remained marching to your own rhythm since the first moments of your life. You are the balm on my heart and the mortar that brought together all those pieces so carefully laid by the good people who I’ve known. You took my shattered soul and gave me purpose. All of a sudden, unconditional love made sense. I’d seen it, I’d been awed by it, but I’d never felt deserving of it.

And then there was you.

So on the days where you’re blowing snot all over the house and I am gagging because few things nauseate me more, this is what gets me through. On the days where I am tired, impatient, worn out, burnt out, whatever… This is why it’s only fleeting. I write this silly blog because one day I hope you read it and realize just where we started and where we’ve gone. I hope you will always see what you mean to me and what you’ve done for me.

Thank you for being my little sunshine boy.

And please please please stop snotting soon.

I love you.

Setback of the Fundraising Setback

How is that for a headline?!

In talking with Karen at 4 Paws the exact place where we each zigged where the other was zagging has been recovered. There was indeed a special donation made in September that puts us at $12,000. We are a lot closer to done than I was believing us to be at this point yesterday and the light is still there, clear as day, at the end of the tunnel.

Thank you everyone for your support. From the bottom of my heart, thank you. I cannot say that enough!


Fundraising Setback

Just when we thought we were done, we’re not.

I get our totals on the first and fifteenth of each month. I write in for them and generally receive them quickly. The 9/1 totals never came, but I did get the 9/15 totals promptly. I asked questions about the numbers, specifically whether or not certain donations had been added, and was told they had not yet. So I did my math accordingly and got our $11,744 total.

It turns out almost $2,000  in donations was double added due to this miscommunication.

Here I was, thinking we were done or if not, ever so close to and this news crushed me. I won’t lie. I was at OT with J-bear when it happened and I had to go sit out in the car and cry my heart out. This could not be. I am the one who knows best how terrible I am with math and accounting, so I was so diligent with each total and number I got. I did the math a hundred times, how could this be?

One simple miscommunication. That’s all it took.

Our total is at $10,100. I feel like it might as well be at zero, I took it so  hard, but it is not at zero. Last night, I heard from the Red Sox that we shall be receiving a John Lackey autographed photo to auction off for our cause. Our friends at Keefe’s Martial Arts here in Stoneham have generously donated 3 introductory courses, each with a free uniform, that are worth $300 a piece that we are going to auction off as well. We have back up on our back up, but I hope you can all understand why I am feeling incredibly low about all of this.

It’ll get better, and we’ll get there, it’s just painful right now.

Layers of Tired

Is there a such thing as being exhausted to death?

Cause if there is I feel three seconds from it.

I have no idea what’s going on. Is it the new routine? Is it seasonal? Is it illness? Is it something I am not guessing? Has J perfected siphoning away what little energy I have left?

I don’t know what the answer is but I do know that I sat down at around 9:30 this morning thinking I was going to just rest a second and didn’t move til almost 1:30pm. This is not necessarily good. I have stuff I need to be doing, places I need to be going and projects I need to be working on. My boy may go to school but that doesn’t mean mama gets to slack.

Yet slack I have. A lot.

I hope to have a great fundraising update very very soon but I have to wait til the end of the month for it. I am not avoiding anything, I think we have amazing news to share once we get it but I am not about to say anything final I get a complete confirmation from the Powers that Be.

Hope to have better posts soon.

Pittered Pattered Pooped

We have yard saled our last yard sale.

I am tired, everyone. Very, very tired.

But! Thanks to the generosity of friends, our yard sales combined total is around $450. I am on edge right now waiting to hear whether or not we have broken $13,000 yet. I know we are so very close, and I know that we will break it oh so very soon.

Monday I hope to post the last few items we have for auction to finish our fundraising effort. I have to pick them up from our extremely kind donor and then all the details will be here! The auction will be run on Facebook and all the details will be available once it’s set up.

Everyone who has supported us these past few weeks especially: Thank you. None of this could have happened without your kindness.

I’ll likely thank you all a few thousand more times too so before I get to typing too crazily here I’m going to go off and chase the boy.

Road ID

So. One of my big things with J is making sure that somewhere on his person is something that can identify him. He won’t tell you his name, so something visible and readily available to whoever he encounters feels a must to me. He also has MedicAlert, but that doesn’t quickly give the person in front of him his name and pertinent information.

Last year, I got dog tags made for him through My Precious Kid and love them. They come with nifty little carbiners plus silencers, so I would stick them on J’s shoe and off he’d go. Unfortunately for me, this doesn’t work with most sneakers and we’re getting into a season where sandals aren’t entirely appropriate. I could stick the dog tags on his coat but he isn’t always wearing that. When he is out in public he does indeed have his shoes on the bulk of the time… so I went searching.

A few months ago I had ordered a Big Red Safety Box from the National Autism Association. It has some great stuff including a coupon to receive a Road ID. Don’t know what a Road ID is? Check them out at their website.* I was dubious at first. All I had to hold this thing onto J’s shoe was what seemed two flimsy pieces of velcro. The plate I had made was quite nice and I could jam pack information onto it. These guys, they knew what they were doing when they made this product. I am unsure if they knew the impact it could have on children like mine but it’s a wonderful little thing. Wary of how well it would hold, however, I stuck it on his sneaker and have been kind of standing back over the past weeks to see how it works.
I am pleased to report it works great! When he comes home from school I’ll snag a picture of how they fit onto the sneaker. I love that I could word what needed wording in a pleasant manner, alert people to the fact J is non-verbal and point them to immediately call me. He still has his dog tags, mind you, but this is a great addition to our safety items.
A completely dorky aside: I am loving being a crash test dummy to finding things that work to help these kids and our families. Using Mabel’s Labels has been a blast, using the dog tags and shoe tags has been amazing… Who knows what else I will find!
*= in the interest of full disclosure my link to Road ID is an invite link – any who make orders from it will help earn credits towards future IDs J may need. If you aren’t comfortable with that, it’s cool, just go to http://www.RoadID.com and purchase via their site without any affiliations. It’s all good. 🙂

Guardian Angels

Okay I already made a fool of myself to several friends and family, so now I am going to make a fool of myself over you.

There’s plenty of people in this world who don’t believe in this and that’s okay. I respect that. I don’t demand you do, but this is what I believe and what settles in my heart as truth through what I’ve seen in my experiences.

This boy, he has more guardian angels than he knows what to do with.

It’s like when he was born, despite the struggles he’s had and will continue to have, there’s always somehow been the right person right there to cross his path at his precise moment of maximum need. The best doctor for him, the best therapists, the best teachers, the best friends, the absolute perfect for J-bear whatever it might be has always just happened. It always blows me away. I know in my life I have been extremely fortunate in those who have helped me along the way and taken the place of those who should have cared but did not… But what happens for my son? There aren’t even words.

What made me think of this was realizing that 4 Paws for Ability welcomed two litters of puppies recently. They would be of the right, likely age to be J’s dog should we finish fundraising this month. Now, the family labrador passed away this past March. As she died, I asked her to come back and look after my boy.

I think the guardian angels are having a field day both looking after him and making me cry like the great big ninny I am. I see her face in some of those little pups and it’s all over. The waterworks are on. If they have even a tenth of her big, loving heart they are going to be amazing for whoever they look after.

Let’s just hope they don’t have some of her other quirks. She was a stinker, but anyway…

People have come out of the woodwork to share their generosity with a little boy some of them barely know or don’t even know at all. They have let his story touch their hearts and been led to cross his path just when he needed them most. There are no words for how amazed I am by this nor are there words to adequately convey my gratitude for it. Yes, I have thank you cards, which will still go out despite how tiny they seem in contrast to the giving of so many.

Thank each and everyone who has brought us this far and thank you especially to those mischievous, loving, forever there guardian angels this little boy undoubtedly has.

Fundraising Update


Did you all read that? Let me state that again


If I did my math correctly, which it appears I have, this is where we stand as of TODAY. This includes all current fundraisers, our yard sale, and our FirstGiving totals.

There are not words for my awe, shock and absolute excitement that we can see the end of our efforts. We still have to fundraise for our travel, but we will have near a year for that and far less to raise.

This is amazing.

And this is all thanks to you. With all of my heart, thank you to our generous donors, our loving friends and family, our amazing supporters far and wide… We are almost finished with this part of the journey! I cannot wait to share the day we know when we will be travelling to Xenia, OH, to meet our new family member and watch J’s life change forever.

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