eSpecially Ben

Samson was born pink and healthy, with a content disposition that made those first days with him dreamy. His earliest weeks home were a wonder. His presence in our small house was bigger than life. Every flat surface was covered with his things – diapers, wipes, burp cloths, sterilized bottles, and the many lists that I made to record every ounce of formula he drank. He didn’t cry, as I was assured in birthing class, to let me know he was hungry or wet. I came into motherhood on a pretty thin line of confidence. I did what I could - I trusted God – I followed His direction, learned to trust my fragile instincts, and fell hopelessly in love with all of my heart. The earliest days were peaceful, almost pastoral. Samson napped in a cradle handmade for him, and I put it near a window close to my desk. As I worked, the sun would filter through the leaves outside the window, bathing his sleep with dappled light. After that hottest summer, shorter days turned colder and the first falling le

My name is Michele. I live on Long Island in New York with my husband, Rich, 10 year old daughter, Taylor, and 2 year old son, Ethan. I have known Vanessa for nearly 30 years, since middle school. So I have some really good dirt on her. Like when she used to wear skin tight jeans with white “pumps” to school. Well…It was the 80’s! Oh, this is supposed to be about me…Sorry. Anyway, when Vanessa asked me do write this I was honored. She is an inspiration to me, and she is one of the most courageous, most selfless persons I know. I also thought, “Why is she asking me? Ethan doesn’t really have special needs.” I guess even though I am constantly hounding my husband for being in denial, I have a little of my own at times. When Taylor was a baby, I left a terrible and abusive marriage with her father. I went back to college to pursue a career as a Special Education Teacher. Little did I know how helpful my career as a Special Ed Teacher would become. I was a single mother, full-time st

My name is Elizabeth and I teach preschool special education in Charlotte. I “fell” into the field 14 years ago while working on my Master’s degree and teaching at a church preschool. Several years ago, I had the opportunity to leave the classroom to support preschool teachers in inclusion settings. I loved the chance to meet other teachers and share ideas, but could not stand to be out of the classroom. The next year, I was back in the classroom – and this little red head kid stopped by to visit with his mom. I was HOOKED! My husband, Brad, and I have 2 children – Ryan (13) and Kathryn (10). Ryan has Down syndrome and goes to middle school in a separate setting class. He likes trains, Disney movies and going to visit Grandmommy and Granddaddy at the Chicken Farm. Kathryn is in 5 th grade and loves drama. She just finished her final performance with the school choir and anyone who knows her already has her autograph. I love to read eSpecially Ben. Vanessa has a w

Well, let's see, my life in a nutshell...I always dreamed of having a family with lots and lots of kids.  I wanted about 4 since I'm one of four and that number seemed a  good number to grow up in. Well, unfortunately life did not turn out that way. After being married for 5 years and trying to conceive for many of them, we found out we couldn't conceive without the help of science.  Thousands of dollars later and a few unsuccessful attempts, we got lucky and were pregnant with twins through in vitro fertilization.  One boy, one girl.  We were over the moon in happiness.  Seven months into the pregnancy I had premature labor contractions and found out I lost one of the babies.  It was a hard, sad time. I had to be on bed rest for the remainder of the pregnancy.  At eight months, my beautiful son, Tye decided he wanted to be born early.  He was just a little guy, 5 lbs, 8 oz. but otherwise perfect and healthy. Tye was perfect in every way.  We were so happy,

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

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

Hi!  My name is Meg.  I'm an American expat living in England with my husband and four year old twin son and daughter.  I have lived in the UK for the past 8 years and have only worked as an office temp in that time (long story), but before I moved to England I worked in Residence Life/Student Affairs.  My last post was Assistant Dean of Students and Director of Residence Life at a private American University in Switzerland.  Now I work 24/7 as a mom/wife/cook/cleaner/playdate co-ordinator/party planner, etc. When my children turned two, our doctor's office sent us a list of milestones/skills/behaviours that my kids should have accomplished by that age. I read through the list: putting two to three word sentences together, potty trained or showing an interest in potty training, make believe play, etc. and I started to cry.  My husband looked over my shoulder and, attempting to comfort me, said 'Pixie* is doing all of those things'.  I managed a tearf

My name is Denise and I live in Texas with my husband, Matt, and our three children: Jason (5 years old), Luke (almost 3 years old), and Madelyn (5 months old). Matt is Vanessa’s cousin from New York. I have been following Ben’s blog every day for about a year now. Having a special needs child of my own, this blog gives me inspiration. I enjoy cheering Ben and his family on during the rough patches and hearing about his latest accomplishments. This is why I am happy to tell the story of my son Luke and his life with CHARGE syndrome. Luke was born six weeks early after a normal pregnancy which was not unusual since my first son was also preterm. He had to spend some time in the NICU, but appeared to be otherwise healthy and beautiful. During his stay in the hospital, several things were pointed out to us that led us to believe that something was wrong. First it was his ears: low set and smaller in appearance. I didn’t think that was anything to worry about at first. Some people have

Parents of special needs children often get lumped together for a variety of reasons. On the surface we seemingly have the same needs, concerns and experiences. In many ways, we do face similar issues and experiences; however, the way in which we handle the emotional, mental and physical demands may be different. A challenging situation for one parent may not be for someone else, and a support system for one family may be a strain on another. I was reminded of this when I met a friend for breakfast a few weeks ago. Her son has the same ACC diagnosis as Ben. We do have a lot in common and an instant friendship was formed when a camp director introduced us because of our ACC connection (what a pun!) That morning, she shared how every night since her son was born (he is 14 years old), she checks on him 5-6 times a night to make sure he is okay. It is the only time she feels he is safe. Then she asked me, "Don't you do that too?" After a brief pause, I sham