parents of children with disabilities

And then… There was Abram (Part 1)

Wednesday, April 10th, 2013 Posted in Events, Fundraising, Uncategorized | 1 Comment »

In the literal sense the drive from Galloway to Westerville only takes about 40 – 45 minutes.

Figuratively, however it took a bit longer.

Finally though, in early October 2011 my wife and I found ourselves en route carrying an MJB Donation.

A gift for a boy named Abram who simply needed a way to get out and play with his sisters, a way for Mom and Dad to get him outside. Abram’s “Get out and play” deck as we call it now.

We had heard about Abram a few months before. His family was having a fundraiser to build the deck, they had a goal number in mind, but came the query – Could The MJB Foundation help?

Of course we would – folks who were industrious enough to hold their own fundraiser? Heck, we were right on board. We would help with the difference. They would raise what they raised, and The MJB Foundation would make up the difference.

So we carried that check with us as we traveled to Westerville.

But here’s the catch – This was the first MJB Gift of Joy we were delivering personally. No agency involved. No intermediary. Just us… and honestly – we were a little nervous.

We were greeted at the door by some lovely young ladies and welcomed in to meet Abram and his family

What followed quite frankly was life changing, and as far as that goes – MJB changing too.

When you lose a child, as we did with Meghan Joy, the feelings, the emotion, the carousel, the roller coaster are all things you do alone. Oh, you have your spouse, and you are together. If you’re lucky, like we were, you have that support, that someone to lean on.

But nobody can understand what it is truly like. Not your friends, not your family, nobody who hasn’t gone through that experience themselves can truly understand what it’s like.

But, Emma and Andy, Abram’s parents, had done just that. Abram’s twin brother Heath passed away when he was 3 weeks and two days old.

Emma and Andy knew exactly who we were, and they made us feel so welcome. We spent about an hour and a half chatting, sharing stories, talking about Heath and Abram, and Meghan and Kailey and Delaney and Livvy, Ella, Mollie and Poppy and on and on, and we gave them the check and went on our way.

Afterwards, we visited the local mall to run some errands.

As we shopped we talked about our visit and marveled at the ease with which Emma carried on a conversation, cared for Abram, and still managed to keep track of what the girls were all doing.

We could not imagine keeping up with that pace. We could not imagine the energy that must take.

We discussed the similarities and differences we shared, and we decided that we were incredibly happy we were able to help, and more importantly that we had made that donation personally.

We kept in contact with Emma and Andy and their clan, with the goings on with Abram and his deck. We invited them to Bowl for Joy and Emma came with the kids and had a terrific time.

Afterward, Emma contacted me with some ideas for other ways The MJB Foundation could help folks, and other ways that she could be involved.

We had no idea…

sing for Joy

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Pushing a Bigger Button

Friday, November 16th, 2012 Posted in Fundraising | No Comments »

I would be lying if I didn’t admit that it is sometimes very frustrating to run a charity designed to help kids with challenges.

Too often it seems, those kids are forgotten.

Cerebral Palsy (CP) in particular seems to be a forgotten condition when it comes to identifying “those in need,” but it is certainly not alone.

CP is just not a big button, as I like to call it. It’s not cancer. It’s not autism. It’s (usually) not tragic.

But.It.Is.Everyday! – Just like autism, and just like cancer.

(Please note * I do not mean to diminish the very serious nature and need for support for cancer and autism causes.)

Last summer at Golf for Joy I made a plea to those in attendance that if they took anything away from that day it was just that.

The conditions that affect the kids we try to help are very much like the traffic that we are all encountering now as we travel through Columbus each day – a little bit different, a new set of roadblocks each day, a concrete tunnel which seemingly never ends.

We have a new joke this year that if you put the word “adaptive” in front of some piece of equipment, it’s price automatically raises into the thousands of dollars.

Unfortunately – It’s not so much a joke. In fact, it’s very much a reality. Not funny at all.

Of course, it’s not just the kids who have to deal with these issues.

So many parents fight tirelessly, day after day, caring for their children and their loved ones, trying to maintain some sense of…

Heck, I think we can say it – normalcy.

Which really…

Is impossible.

Very often when my wife and I talk about the 15 months we had with Meghan Joy we note that really…we don’t remember all that much. Very much like the sports cliches you hear so often –

We took one second, one minute, one hour, one day at a time- trying to move forward as much as we could–

I think that part of the reason we continue The MJB Foundation is because we know that struggle. We know that fight. We know what it is to want to feel normal – and we want to help those who are still in the fray.

This year, for the first time ever – The MJB Foundation is nearly tapped out. To date, because of the generosity of our supporters, we’ve been able to give Gifts of Joy totaling $11,041.31 to children with challenges this year, and we’re committed to what might be as much as $6,000 more. (Some of the equipment has to be fitted so there could be some cost variance.)

To put this in perspective – Our events this year raised right around $7,000.

While it’s true that we are giving away more this year than any other, and we had a little bank to spend – it’s also true that more and more families are finding out about us, and more and more kids will need our help.

But we don’t have that big button, and well, we need a big push.

I always said that being at this point is a problem I’d like to have, but I have to admit it scares the holy bejeesus out of me.

But not as much as the day-to-day might scare the holy bejeesus out of those families, and those kids.

So the takeaway is this…

I don’t honestly know how many people read this blog, but I will admit to knowing at least some eyeballs give it a glance every now and then.

So… If you have a second, if you’re so inclined, I would really appreciate it if you could help us spread the word, and let people know that we’re trying to help those kids, and we could use all the help we can get to make this button bigger.

 

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Grandma’s Invitation

Tuesday, January 25th, 2011 Posted in Events | No Comments »

Today, Meghan’s Grandma shares her memories and offers her invitation to Bowl for Joy.

Without further adieu.

Hi! I am the grandmother.  I was there 18 years ago February 5th for the birth of the twins.  Funny the birth was an emergency C-section which should have taken just a few minutes.  Those of us waiting kept going to the window of the nursery and looking for the baby. (They didn’t know it was twins.)  The stupid people in the nursery kept saying “Oh you mean the twins.”  “NO! Not the twins!!”  Finally I could stand it no more and went to the back by the delivery rooms.  There I met the doctor who had come for the surgery.  He explained to me how one of the twins was healthy and pinked up right away but the other was in jeopardy!

So, here we were.  Looking in the window, finally, at the twins!  Kailey was great! (As you all know her to be.)  Meghan was still, on a respirator and not expected to live the night.  Hard to believe it was 18 years ago.  The heartbreak comes back like it was yesterday.

Having a handicapped child is tiring, frustrating, rewarding, joyous, sad, all the emotions you can name.  Losing that child is a tragedy.  During her short life Meghan had the love and devotion of a lot of people.  Her family was able to provide her with the special equipment she needed to function.  How different it would have been if that ability was not there.

The MJB Foundation raises money to assist parents of handicapped children with the ability to provide special equipment; a special tricycle, money towards a special wheelchair, etc.  The money is raised by activities that are family friendly.  A special family works hard on the activities of the MJB to keep the spirit and joy of their daughter alive.

Please join us February 12, 2011 at Sawmill Lanes, 4825 Sawmill Road for Bowl for Joy!  Teams of 5 can bowl together.  $30.00/person and the money goes for that special equipment for those special kids.

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Talking about Meghan

Tuesday, March 2nd, 2010 Posted in Uncategorized | No Comments »

Frequently during the time of year leading up to Golf for Joy I find myself meeting new people, shaking many hands, and handing out business cards. Friends introduce me to their friends and tell them about the outing and the foundation, how cool it all is, and what a good time we always have…

And… I appreciate that so much, that my friends want to share, and want to help.

But I met someone this weekend who made that exchange even more special. I sent him this email to thank him.

Hi Touby,

Just wanted to say how nice it was to meet you Saturday and talk about our outing and my daughter Meghan Joy.

People often ask about the MJB Foundation and Golf for Joy. They don’t often ask about Meghan. While I understand that, in that they don’t want to make things feel uncomfortable it does mean that much more each time somebody does take the time to ask.

I am truly grateful for those times.

Hope you have a great week!

Take care,
Jimmy

When the party is over… When the money has been raised and donated… I still miss my little girl.

Today I want to thank everyone who helps me to remember.

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