eSpecially Ben

Hi, my name is Natalie Weaver. Before I became a mom I worked as a sales and marketing manager. In my free time I enjoyed painting. I used to display my artwork for years at a gallery in a local arts district. At some point I would like to paint again. At a very young age I knew that I wanted to be a mom and somehow knew it would be the most important role in my life. Taking care of my family is what I'm truly passionate about. I feel lucky to be able to spend my days at home with my children, Sophia is 2 1/2 and Alex is 9 months old. I couldn't do this without my loving and supportive husband Mark. He is an amazing person. His strength and wonderful sense of humor has helped us get through the most heartbreaking times with our daughter. Sophia was born with a rare craniofacial condition. So rare that none of her many specialists have seen anyone else like her. She has differences to her face, hands and feet. She is undiagnosed and one of a kind. Sophia's had 6 surgeri

My name is Karen. Vanessa and I were freshman college roommates.  Although we do not see each other as often as we would like, we are able to catch up with phone calls.  It was in fact when Vanessa called to tell me that she was pregnant with Ben, that I shared with her that I was also pregnant with my first child.   We discovered our due dates were about one month apart; oddly enough this occurred two more times.   I am a married stay at home mom of Matthew (5) and Jacob(7).  I also had a third baby (Michael) that died at 8 days old after emergency heart surgery complications.  I include Michael in all of this because I think the loss of him, has influenced our decision making process. Jacob and Matthew have a brain disorder called Lissencephaly Pachygyria ( Smooth Brain ).  Basically instead of having all the lumps and bumps that the brain normally has their brains are relatively smooth.  We have had all types of genetic tests done, but they have been unable to diagnosis

On Palm Sunday, we arrived at church at our usual time to participate in Sunday School. I took Ben's walker out from the trunk. Ryan and I strapped Ben in with chest harness and seat. Ben made his way toward the door as his brothers ran around the garden amused by the bird bath with the stone bunny inside. I opened the door to the church for Ben. Without warning, Ben's walker folded onto itself, slamming Ben's face to the floor. Ben's nose took the brunt of the fall. He bled and cried. Then I cried. Our church community got ice, gave hugs and helped any way they could. Ben only wanted his Dad to hold him. Of course, things like this happen so quickly and when they do, the details are all in a haze. I do remember wondering, what just happened? How could the walker do that? And probably even quicker than the fall, the answer came to me: I did not engage the lock for the walker properly. Some people have told me not to feel bad or guilty, but I did. Ben's nose bl

In honor of Earth Day - April 22, 2011

I knew the call was coming, but did not expect it to be an anniversary moment. On the drive to Charleston with my mom and sister for what is known as our Annual Girls’ Weekend, this being our second, I got a call from Ben’s neurologist. Last year, while on the 1st Girls’ Weekend (cannot say annual when it is the first, a little pet-peeve of mine from my event planning days) I was first informed of Ben’s seizures. So this call was ill-timed, yet should have been expected, because life is like this – when you are trying to get away from it all, it catches up with you and lays it all in your lap. But I was much more experienced this time. I took the information in stride and made the follow-up appointment for Ben for the next week. With an action plan set up, I was able to file it away for the long weekend. Lucky for us, the neurologist was able to see us immediately because her trip to Japan was canceled due to the earthquake and tsunami – once again one of life’s ironic moments. It al

By painting the pointer and pinky fingers and palm of the hand, this bunny comes alive. Add googly eyes and a nose made from pipe cleaners and felt and you have a cute card to give out to grandparents and friends. Need some art inspiration for your household?  Check out 5 Minutes for Special Needs every Monday .  And if you have a little artist in your home, link up and share with others.

Hello everyone.  I'm new at this blogging thing so bare with me. My name is Donna and my son's name is Ben.  I met Vanessa and her sweet Momma when our Ben's were classmates years ago.  Vanessa was the only parent (other than me) who would stay in the classroom to check things out. I would try to just drop him off and leave, but ended up going back inside.  Maybe it was because Ben stayed sooo sick and I worried about him catching something else. Ben is an only child and was born with Tetralogy of Fallot (a defective heart).  He had 3 chambers instead of 4. I found out about his heart at 4 months pregnant.  During my last doctor's  visit, something went terribly wrong and I had an emergency c-section that night.  Ben was born with underdeveloped lungs and had to stay in the NICU for 2 months.  (Somewhere along 7 months I lost fluid and it went undetected). At 3 months old I took him back to the hospital for his heart surgery.  It was a success, but whil