Friday, February 27, 2009

This really hits home

Rachael's sister Becca sent us this message from her rabbi. It beautifully relates very closely how we feel about Joey. We're not very religious, but we hold this very close to heart.

Why Does G-d Create Severely Handicapped Babies?
A friend gave birth to a baby with a rare condition that has rendered her severely handicapped. She is not expected to live much past her tenth birthday. I just can't understand why G-d does that. If life has a purpose, what is the purpose of such a short and sad life?

Every birth is a gamble. A soul enters the world innocent and pure. But it may not stay that way. This world is a maze of diverging pathways, both good and evil, and the choice is ours which way we go. Once a soul enters a body, it is free and therefore vulnerable to corruption. While acts of good elevate the soul, every act of evil makes a blemish on the soul.

Some souls are so lofty, it simply isn't worth the gamble. These souls are too precious to risk being compromised by life in a body. They are too high to come down to this world. But the other option, not to be sent down at all, to never reach this world, would mean that we would miss out on meeting these holy and lofty souls and hearing their message.

So these souls do come down. But in order to be protected from the potential evils of an earthly existence, they are sent down into a body that will not compromise their holiness. They enter this world in a form that is above sin, above evil. From a purely physical perspective we call them "disabled" or "handicapped"; from the perspective of the soul they are protected. They will never sin. Their sojourn in this world is often brief, and in terms of this world may seem sad. But they have retained their purity. And they have fulfilled their mission.

These special souls remind us that true love doesn't need a reason. We often love others for what they give us -- we love our children because they are cute, smart, and high achievers; we love our spouse for the pleasure and contentment they give us; we love our parents because they care for us. This is love, but it is not pure.

When a child is born that will never achieve worldly success, cannot provide the usual source of pride for her parents, all extraneous reasons to love her fall away and what's left is the purest love that there can be. These children are lovable not because of what they do for you, and not because of what they will one day become, but simply because they are.

These pure souls remind us what love should be. Only such a pure and holy soul can elicit such a pure and holy emotion. We can only stand in awe of them, and the parents and friends who care for them. And we can only thank them all, for giving us a glimpse of what true love really means.

Wednesday, July 30, 2008

Joey's Summer

Hi all, sorry it's been so long since Ron or I have posted - it's been a surprisingly busy summer! While it feels very busy, we really don't have much new news. Which I think is good news. Joey is doing wonderful. He still smiles and laughs - it just melts our hearts. This morning, I heard Joey in his room and he was just laughing and laughing...I have no idea what he was laughing at, but he sounded so beautiful.

We haven't done much traveling this summer, as it is so hard with JoMo. He doesn't really like being in a stroller - in fact he usually screams and cries within the first 10 seconds of sitting in the stroller. Not sure why. So, to try and fix this I went out and bought yet another $300+ stroller - this one, the bumbleflyer, has a handle that flips, so he can ride in his stroller and watch mommy and daddy. The first few weeks were rough, but I am happy to say that last weekend we were able to go to the mall for almost 2 hours. This is the longest Joey outing we have had in MONTHS! I hope this trend continues (fingers crossed).

Ron and I are doing ok. We have some good days and some not-so-good days. Why some are good and some are bad - no idea. Some days I can just look at my little man and be happy that he is here with me. I know that I am so lucky to have him and see his beautiful face and smile. Other days, however, I simply cannot get past the fact that he won't be with me forever. On those days his beautiful face feels like a tease "see what you have and what you won't have someday". I look at all the other children out there and think "why Joey", "why Ron", "why me?????". But, fortunately for me, Ron and Joey, our bad days are far outnumbered by our good ones.

The other day Joey slept at his Grandma and Grandpa George's and it was so strange in the house without him...while part of me enjoyed the lack of responsibility, the other half kept thinking "so this is what it will be like when Joey isn't here anymore...". Sad, I know. But again, I'm able to focus on our beautiful boy more days than I focus on our loss.

And, more good news...Ron has not had a seizure since father's day. This is a HUGE relief as not only does this scare the s*it out of him, it scares me too. Plus, the stress of worring is almost too much.

and the final news...we are having a benefit to raise money and awareness for Joey and Tay-Sachs. The benefit is called the JoMo Halloween Funraiser and will be on 10/23 at the 20th Century Theater in Oakley. It's a halloween themed dress up party. THANK YOU to the 20th Century - they are doing this FREE of charge and even giving us all of their profits! You all rock!

Love to all,

Friday, May 2, 2008

couple pictures that i forgot about

people at work love the bumbo seat one, and i thought i'd put in another of me in the background, but this time, no bedhead

Wednesday, April 23, 2008

New News on Joey


So we got some new news on Joey...they have changed his diagnosis to Tay Sachs. Tay Sachs is very similar to Canavan's, except that the life expectancy of a baby with Tay Sachs is usually around 3-5 years.

I don't really have any new information, but the National Tay Sachs and Allied Disesase website has ton's of good info.

We are really looking forward to Joey's birthday party on 5/3 and his actual birthday on 5/5. We can't wait to celebrate this huge milestone!

Love to all,

Monday, April 14, 2008

Joey and "Muddy Buddys"

We just had a really nice weekend. Our good friend Mende came to visit Joey from Minneapolis and she and Joey fell instantly in love. And, as with all the ladies Joey loves, he smiled and laughed for her all weekend (which of course, mommy can't seem to make him do!). Mende's mom, Charlotte Price also came to visit Joey and again...he smiled and laughed for her. We had an amazing time.

On Sunday, we went to a Jeep Club event, hosted by Muddy Buddy's Jeep Wrangler Club of Dayton, Ohio. Joey's uncle Rick is a member. It was, by far, the most amazing afternoon. We met tons of wonderful, kind people who donated ALL of the profits from their meet and greet to Joey. And, the winner of the raffle ALSO gave all of her money to Joey.

We want to make sure that anyone reading about Joey knows what a wonderful group of people Muddy Buddys Jeep Wrangler Club of Dayton is. They barely know Joey's uncle Rick, yet donated all of their proceeds to Joey. AND...they have already offered to host another event for Joey. To all of our new Muddy Buddys friends - thank you. Words cannot describe the feeling of joy you brought to our family. I know that the world is filled with good people after spending time with all of you.

And for those of you in Dayton/Cincinnati area, the group is hosting a park clean up next Saturday, 4/19. They will be particating in the Five Rivers Metro Park Clean up.

You can check out Muddy Buddys website at to find out about this great group of people and the park clean up next week.

Once we download more photos tomorrow, I'll post some of Joey at the Muddy Buddy's event.

Thank you all again,
Love Joey, Ron and Rachael