eSpecially Ben

Matt and I have been married for 12 years. I always wanted to be a mother and I was finally blessed five years ago with a healthy baby boy, Jason. Two years later we welcomed Luke to our family. Luke was born after a normal pregnancy but was sent to the NICU since he was 5 ½ weeks premature. During his hospital stay we learned that Luke had some health issues and was later diagnosed with CHARGE syndrome. Despite his health issues Luke was a great baby. He has an easy-going and happy personality even while under-going multiple surgeries and procedures. The decision to have more children after Luke was not an easy one. On one hand, I loved being a mother to my two amazing boys and yearned for one more child, hopefully a daughter this time (although I would have been happy with three boys too). On the other hand, would we want to take the chance that our next child would be born with a disability? Luke’s expression of CHARGE is relatively mild and I knew it can be so much more debilitat

Here are my annual photos of the first day of school. Sean is just glomming onto his brothers' first day of school. His is next week. Ben and Logan attend different schools but wear similar uniforms - polos with khakis. I was not successful in getting the school to allow Ben to walk onto the bus without the Convaid Stroller - at least for now. However, they are meeting Ben at the bus with his walker. According to the teacher and by judging how tired Ben is at the end of the day, I think he is spending a fair amount of time in his walker. One night, Ben actually fell asleep at the dinner table. New school & environment, but familiar people are with Ben throughout the day. The principal and assistant principle know Ben from when they worked as a team at his preschool. And the kicker...we walked into Ben's classroom at Open House and the teacher is a friend and neighbor with whom we lost touch after they moved away ten years ago. I don't know how i

Sorry - the video will no longer work! I will keep working on it. At the pool, Ben initiated this activity over and over. It was the first time he has ever done this. He must have done it at least 40 times. He knew what he was doing was good and he kept practicing. All his cousins, grandma and aunt were there to witness this enormous achievement. Other children in the pool gathered around him to watch. It was a very special thing to see.

talk to a three year old. At our house, Star Wars is the main event - from playing with Star Wars Legos to watching the movies to fighting with Light Sabers. One day Logan and Sean, were acting out the duel to the death fight between Luke and Darth Vader, with Logan playing Luke and Sean playing Darth Vader. I overheard Sean say to Logan, "Luke, you are my son." Well at least he got the familial relationship correct, if not the line. My Dad and his brother Arnie are identical twins. I am sure that over the years, they have heard every possible comment about their resemblance. They may have added a new one to the list when Sean said, "Uncle Arnie, you and Grandpa have the same head." Having a bad day? Need a pick-me-up? Find yourself a three year old who will most likely have something funny and insightful to say.

I have written about Dwayne, Ben's OT, for the past several years. Dwayne was part of Ben's Speech/OT Dream Team. For personal reasons, Dwayne must move from the area. Ryan has taken this the hardest. It is the first time he knew one of Ben's therapists. Dwayne came at a time that Ryan was home from work and their mutual love of basketball and football developed into friendly banter about which teams would do the best and worst. When Dwayne told us about the changes coming, I was not surprised or broken-hearted. Ryan thought I was being cold, but Ben has had more than seven years of therapy, meaning more than seven years of therapists. I have seen good ones leave and have had a hand in helping bad ones go. Some have come back to us after moving away. Some I see at the park and library with their own children. Some have referred their new clients to this website, and I have become friends with the clients. Some keep up with us on Facebook. And one drives with us to New

Grandpa and Logan after finding the Bamboo Forest. My father somehow promised to take Logan to a Bamboo Forest on Long Island last year. They talked about it a lot, and it was built up so much over months of planning that I was worried that Logan would be disappointed. No such thing - it was truly a forest with trails for the kids to explore. I had been to Frank Melville Memorial Park many times as a teenager and adult, but did not remember all it had to offer. Check out one woman's Photo Essay for the Frank Melville Memorial Park . If you live close by you will want to visit. We did see a bunny and a very large turtle (3-4 feet in length, including tail) swimming in Mill Pond.

When Mark and I first starting thinking about having another child, we were hoping to have a diagnoses for Sophia so we would know what to test for during the next pregnancy. Despite seeing many specialists and having her DNA tested in the Netherlands, we had no answers. At that point we realized we may never get any answers. Mark and I believe that it was a spontaneous genetic change that occurred at the very beginning stages of development. There is a one percent chance that it can happen to anyone. We decided not to wait for any answers. The decision to have another child was very easy for us. We were scared but we knew we wanted more children. We had several high level ultrasounds and at 16 weeks pregnant we found out that Alex was a healthy baby boy. The picture was clear as day. The moment the 3D image of his face popped up on the screen a ton of fear was lifted. As time would go by, I would start to get scared again. My doctor let me get an ultrasound anytime I felt nervous or

Tye is an only child. Some of it is by choice, most of it because of nature. I never thought I would only have one child. I always dreamed of having more kids. I LOVE kids. I would rather be with a child than be with an adult sometimes. Unfortunately, we were not able to have children easily. Tye was an invitro baby. Talk about a child that you wanted more than anything in the world...that was Tye. We had tried for 5 years to conceive doing all sorts of things to get pregnant. Sex was not a fun past time because it became more of "Let's go have sex. I'm ovulating today" and then positioning myself hoping that gravity would help make a baby. After too many failed attempts to count, we saw an infertility specialist and had to let science and medical interventions do that job for us. We spent about $10,000 to do invitro fertilization. Luckily it took on the first try. They implanted 4 embryos, 2 took. We were over the moon ecstatic, we were going to have twins. A boy

 You will have one of two reactions to what I am about to say - you may be horrified or you may laugh. Ryan, my husband, loving father to our three boys, may sometimes refer to Logan and Sean as "the typs." As in, "I am going to the pool and taking the typs with me."  I did not get it at first.  2011 Ryan was referring to Logan and Sean, our typical children. Okay, breathe, either from laughing or nostrils flaring. Now you can smile, humor is big in our house. And a play on words is just the tip of the iceberg. No pun intended. When a couple's first child has special needs, the decision to have another child becomes more complicated. Often doctors warn that the next child has a high percentage of having the same issues. I believe Ryan and I were told the same thing, but that time is foggy to me. When Ben was one year old, I knew that I was pregnant. I do not remember worrying about how this next one would be. We asked the OB, and th

Pictures ARE worth a thousand words. I tell people about the things Ben can do and I get a blank stare or a polite smile. I know what they are thinking, "Yeah right." Now I have the proof! The photos are current, but these are the same activities Ben was doing pre-seizure, two years ago. Now that he is on the right medication, Ben is back to progressing with his physical abilities. While having seizures and trying to find the right medication, Ben was not attempting any of this climbing. I am also noticing him understanding more of what goes on around him - seeing someone walk in the room with pizza boxes and understanding what is inside. Grandpa asking him to come to him because he will help him out. Ben is responding more quickly to his environment. He pulled his cousin's hair (again) and he understood that he had hurt her. His face showed a reaction that was approriate for seeing someone cry. This is a change from past situations. And even though I do not have

At the beginning of June, we visited Landsford Canal State Park  in South Carolina, a park Ryan found a few years ago while trying to find a new place for a day trip. The park has become one of our favorites because it has an easy path for Ben's wheelchair, playground, picnic tables and is 'home to the largest population of the Rocky Shoals spider lilies in the world.'  We also happened to see a red-bellied water snake, box turtle, blue heron and Bald Eagle's nest. In May and early June, you can see these beautiful flowers blooming. My photos do not do anything justice - if you leave nearby, plan for a visit next year. There are special tours if you sign up in time. I think Ryan has setup an email reminder for us so we get to the park earlier this year.

Your Fathering that Makes Me Smile As mother of a “different” child, my key role is to shine a guiding light on the path God paved  for him. All along that path are my son’s gifts that illuminate the darker days - days I cannot even grasp a glimpse of light. I am grateful that God’s plan for me is that I do not walk the parenting path alone. In our days and nights of chaos and commotion, I can draw just enough of my sweet husband’s determination to keep focus on the higher things. My fortune is to have a hand to hold as I walk a challenging path. So many things you do remind me daily of the gift of laughter – little things like: I love that you are “thankful” when you get home at night to see that we cleaned all the windows in the house with baby wipes. I love the way you cut chicken from the bone into perfect Samson-sized bites with the precision of a surgeon. I love how you combine the colors, plaids, and stripes of Samson’s clothes on Saturday mornings when you both go to t

When Luke was a baby I was proud to say he was a mama’s boy. He would reach for me while someone else was holding him and cry for me to pick him up when he would wake or need comfort. I can’t say I didn’t enjoy this attention and I am glad I did while it lasted. Luke has since made a new best friend. His name is Daddy. I love watching the two of them play together. Luke is all boy and loves to roughhouse with his dad. I often hear his signature laugh from across the house when he sees his dad and practices walking back and forth to his waiting arms. He also loves to hear his dad cheer him on while he plays with his basketball hoop. One of my favorite games that they play is ring a round of the rosy because I know Luke will include me in on this one. Matt and I have been married for 12 years. Having a special needs child definitely changed our relationship. We have a lot of worry. Will he need more surgeries? Will he ever talk or communicate more effectively? What if he gets hurt? D

Whew! Hello my people, Let's talk about this thing called marriage. Well, I was married for 3 years and divorced before Ben turned 1 year old. It was tough but I got through it. The toughest part was going through the legalities of it all. Surprisingly, Ben was the easy part during that time. He kept me busy and my mind was constantly on him. He was very sick his first two years before I knew what the culprit was. Lesson learned about marriage and having a special needs child was that, not everyone is equipped for special needs. Because of that, I had to make some tough choices to keep my life and my son's life on the move in a positive way. The one thing that I realized early on was that if I wasn't doing well, Ben knew it and I transferred that negative energy to him. For example, I may have been too drained to take him to the park, or to the pool. Or, I simply may not have felt like interacting with him by doing something like reading a book, and he loves books.

Having no editorial board for this blog, I often read my posts to Logan before I put them out there permanently. He will tell me if they are "good" or "bad". Of course he enjoys the ones that are about him the most. Several months a go, I wrote a post about when I accidentally did not lock Ben's walker in place and he fell and hurt his face badly. Logan's response was, "Mom, that is bad. Why would you want to tell anyone about that?" Well here's another bad one. But it is funny too and speaks to Ben's independence, curiosity and abilities. And it serves as a warning to other parents who may underestimate their child's cleverness. Two weeks ago we spent the week in NY with family. We stayed at my Dad's house and slept upstairs. Last year, I wrote about how Ben climbed on top of two bins to get out of his room there. So this year, I reminded my Dad a few days before our visit that we had to come up with something to keep Ben in

My sister has three kids too - two boys and one girl. Our kids are all basically the same age, ranging from 7 to 3. We both make an effort to get the cousins together as often as we can throughout the year. With a 12 hour drive or expensive plane tickets keeping us apart, it is hard to do, but we manage it about three times a year. It is worth the money, time and extra work - these kids love spending time together. It is like the months since they last saw each other disappear. They play, play and play. We really have to do little to intervene - they include everyone and share the toys most of the time. And it helps that they all enjoy boxing, wrestling and Star Wars!

13 years ago.

Mark and I have been together for 7 years and married for 4 years. He proposed to me in Central Park during an overnight stay in New York on our way to vacation in Aruba. Of course I said yes and the next day we flew to Aruba. While sitting on the beach, we spontaneously decided to get married while we were there! I found the perfect dress at a small boutique just minutes before the store closed. It was the only white dress and it happened to be my size. Our wedding planner at our hotel set up a beautiful beach ceremony at sunset. It was on the last night of our trip, which happened to be our 3-year (dating) anniversary. It was amazing, spontaneous and better than we could have ever imagined. Several months later Mark and I decided to get pregnant. We found out that I was pregnant very early. I was only two weeks when the test came back positive. We were very excited. I wanted to do everything right. I was very healthy throughout my pregnancy. Mark went to every doctor's ap

Once upon a time there was an American girl who fell in love with an English boy, moved to England and got married. The couple enjoyed every minute they spent together, as the English boy worked long hours. The American girl taught herself to cook and spent most of each day researching new recipes and shopping for ingredients to make a wonderful meal for her husband to come home to. On weekends the couple slept in, woke leisurely and headed off to the movies or a long drive through the countryside, or shopping in the city. The couple was blissfully happy together but knew something was missing. They desperately wanted to have children. After a year of trying, the couple was doubly blessed with news that they were expecting twins! Yes, I am that American girl and my husband is that English boy. We have been happily married for 7 years. For the first 3 years of the children's lives my husband worked 12 hour days away from the home 5 days a week. The year the kids turned 2 wa

Marriage and having kids is hard work to begin with but when you throw in a baby with a life threatening disease and developmental delays that is the true test! I’m not going to say our marriage is perfect or horrible because I believe we are somewhere in the middle. Some days I want to hit him over the head with a frying pan but then other days I adore him but I think that is normal even for couples that do not have the struggles we face. I think the key to marriage, whatever hurdles are faced, requires both parties to work harder than anything else in life. Rich is a wonderful father and Ethan idolizes him. They often play “cars and trucks” together. When Ethan isn’t feeling well he cries constantly, wants to be held all day and night and we are stuck in the house for days or weeks. So I can go a little stir crazy. Rich understands that on certain days if I don’t get out of the house by myself that I will turn into a monster! He participates in feeding, bathing and putting Etha

eSpecially Parents topic this month is marriage. It is not an easy topic for anyone to tackle because it is hard to be completely truthful about what goes on inside your own marriage - it can be uncomfortable and embarrassing to share the ins and outs of your relationship. And really, whose business is it anyway? Well, I asked the moms of eSpecially Parents to share their marriage stories. Not all jumped to answer and I am sure they have their reasons, but marriage is private. However, I believe we can all learn from one another. Most of us have more in common in our marriages than differences and if we knew what was happening in our own marriage was happening next door, we would feel a bit calmer and normal. Last week while visiting family in New York, I heard a story of someone who would go on and on about how perfect her marriage was every time her group of friends got together. Everything from sex every night to no arguments, etc. This person kept this story of perfection going

 Would you wiggle a tooth in that mouth?  I know I lost my teeth once too. But when it is happening to your own child, it is a little strange. Ben's dentist told me at the last visit that he has loose teeth. Although curious, I dare not stick my finger in his mouth to check. I like my fingers just as they are, in one piece. Yesterday, I noticed a tooth growing behind one of Ben's bottom baby teeth. Curiosity got the better of me and I ventured into that shark mouth and sure enough the tooth in front was loose. If Ben were a typical kid, he would be wiggling and playing with it non-stop. Without the extra assistance, it may be awhile before it comes out. Ryan is very concerned becasue Ben has been grinding his teeth for quite awhile and to hear Ryan talk, they are down to the nubs. I have to say, as dramatic as my husband can be, Ben's teeth are worn down quite a bit. Ryan is worried that Ben will do the same to his adult teeth. After a telephone call to the denti

Another one of my sister's fine pieces of culinary art, made especially for Logan's family birthday party in New York. Do you have an art project you would like to share with others? Submit to Magic Marker Monday .

 Although advocating can sometimes seem like a never-ending job, you are fighting for the rights of your child and there is a light at the end of the tunnel. If you are lucky, there are a few lanterns along the way held by people who will aid you in your journey. Ben's paperwork to apply for a toileting system has been held up since March. Unfortunately, I did not know it, and I was under the impression that the 3-6 month wait for approval was well underway. When I posed the question to the vendor about when we might expect the toilet, I was told that the paperwork needed was never completed by the therapy company. Once I got involved and sent emails out to light a fire under a few people, the paperwork was completed and sent in. Later, when I asked what the heck happened, it seems that there was a disagreement between the vendor and therapy company about who should fill out the paperwork. REALLY? Is that what this was about? AND YES I AM YELLING. Please take a step ba

Sean has had an extrordinary few weeks. He sleeps on the top bunk of Logan and his new bunk beds, he is wearing underwear and using the potty regularly. And with my own regret and excitement, Sean is calling Logan, "Logan" and not "der" for brother. In a matter of weeks, he has changed so much. Sean does not miss an opportunity to tell anyone that he is a big boy. Strangers, friends and family members are all told that he sleeps "top" and "go potty". His excitement to be seen as a big boy is overwhelming. Logan made the rule that when Sean reached 20 times using the potty, he would get underwear. That special day came last week, on one of the final days of school. At pickup, Sean ripped down his shorts and announced to Logan that he was wearing underwear while pointing to his bottom which was covered with Lightening McQueen. Today at the YMCA childcare, Sean used the bathroom there. When he saw their specially designed child-sized toilet, he

 Over the weekend, I cleaned our art closet and realized we needed to have an art day to deplete our overflowing supplies. On the first day of summer break, we invited neighborhood children to join us in making fun arts and crafts.  With several stations throughout the house, children chose what activities they wanted to participate in and did them as often as they wanted. We had everything from necklace making, paper airplane building, puppet designing and clay molding.  Although Ben does not love arts and crafts, he definitely loved having children over the house. I helped Ben make a noodle necklace and let him eat it when we were finished. Bracelet made from buttons. When the arts and crafts were finished, Star Wars became the game. Ben got right in with the kids. It was fun to see him interact with everyone. One little girl whom we have known since she was two, really took an interest in Ben, asking appropriate questions and trying to help Ben get what she thought he

Jeremy White* just published his first children’s book entitled, The Shiny Little Pebble . Jeremy and his wife, Faith along with their three boys have been friends to our family for several years. I am excited to share his book with you. It was written to give hope to today’s children during hard times - be it moving to a new place, separation or divorce, military life, or the loss of a loved one. Reading The Shiny Little Pebble with children will open a door for communication, encouraging us to interact and love the children around us. After all, kids experience pain and loss just like we do. With a little bit of humor, quirkiness, and scientific exploration mixed in, The Shiny Little Pebble has the potential to tighten family bonds for a lifetime. Purchasing is available online at http://www.authorhouse.com/ , http://www.amazon.com/ , and http://www.barnesandnobles.com/ .    * A graduate of the University of North Carolina at Charlotte with a Bachelors of Architecture and

For the past three years, Ben has been in Mrs. H's classroom. This year he says good bye to her because his school is closing and both are going their separate ways. I am not sure what Ben understands about the change that will occur next year, but I sure do. Even now as I write this, I have tears in my eyes. Mrs. H cares about every one of her students, but has the uncanny ability to make your child feel like the most important one in the classroom. If ever there was a teacher meant to do what she does, it is Mrs. Hoard. She uses firm discipline combined with a great understanding of the best methods to teach children and then infuses the system with love. We will miss her, but she's already agreed to attend Ben's birthday party in July. This year, though, we will be prepared for Ben's reaction. Last year, he literally gave her a hug that lasted a full 5 minutes and pretty much kncked her to the ground with excitement. If that's not telling of a good teacher, I

The special education classes at Ben's school performed Phil Collins' You'll Be in My Heart . The words held more meaning because the school is closing and students, teachers and assistants are being displaced to many other schools. There were not many dry eyes by the end. And if you do notice Ben in the center with the orange shirt, he is crying because he saw me. His reaction was upsetting and shocking, since crying is only reserved for wanting to watch a Bob the Builder video. I guess I should not complain, it appears my status is now on par with Bob. * Digital effects in place to obscure identities of the children. You’ll Be In My Heart Lyrics by Phil Collins Come stop your crying It will be all right Just take my hand Hold it tight I will protect you From all around you I will be here Don't you cry For one so small, You seem so strong My arms will hold you Keep you safe and warm This bond between us Can't be broken I will be here Don

Each week this year, Ben's class studied a different letter of the alphabet. When I visited his class last week for the school performance, this artwork was hanging on the wall along with the rest of the" class skeletons." So cute and creative! I post artwork every Monday as part of the Magic Marker Monday Series offered through 5 Minutes for Special Needs . Check it out to see more artwork or to post something of your own.