eSpecially Ben

Marjorie and her grandson, Graham Guest post by Marjorie Frick My name is Gee or Grammy depending on which grandchild you ask. I have been blessed to raise two daughters and have five grandchildren, four boys and a girl, all under the age of six. Our oldest grandchild, Graham, was born with a rare genetic disorder called Cri du Chat or 5p- . It is a deletion on the p arm of the fifth chromosome.  During the first few months of Graham’s life, we began to pick up on small clues that there might be something amiss. My daughter fought to be referred to specialists and to get some therapies started.  Graham was missing some milestones. Two of the biggest issues were feeding difficulties and sleep.  After receiving genetic counseling, we finally got a diagnosis at about seven months old. This was one of the worst days of my life.  It helped me see that one of my most important roles in being a grandparent to Graham was to be a parent to my daughter. Graham was receiving the care he needed f

My Dad has always been a special person to me. He taught me how to throw a football, ride a bike and play Parcheesi and Monopoly. He was the Dad on the block who played hide-n-seek, kickball and woofle ball with all the neighborhood kids. He may never admit it, but he played Barbie dolls with me too. I have lived 12 hours away by car for a long time now and we have maintained our relationship through visits and lots of phone calls. Although he is great on the computer, he refuses to send an email. He'd rather pick up the phone. When I started my blog, he became one of my biggest supporters, calling me to tell me how much he enjoyed reading my entries. Without being asked, he has helped our family emotionally, financially and physically. He understands the extra struggles we face daily and tries to help lessen the burden in ways that he can. My Dad adjusted his role from grandparent to a typical child to one who has special needs. A visit with Grandpa means working on gross mot

Several years ago, Ben received a touch screen monitor from an assistive technology organization. Ben found ways to take apart the computer, eat the wires and throw the very light monitor onto the floor. When we tried the programs with Ben, his focus was more on how to eat, taste and destroy the components of the computer, rather than on the actual activity. After looking for a desk that would serve Ben's needs and not finding one within our budget, I asked my husband's father if he would consider building one. Always up for a construction challenge and helping his grandson, he said yes, without really knowing what he was getting himself into. We emailed back and forth drawings and designs and finally came up with something we thought would work now and grow with Ben as he got taller. With the help of his long-time friend and his woodworking workshop, Ben's grandpa built an impressive desk. The desk features a locked cabinet for storage. Ben is able to g

Grandma visited us last week. This is Ben with Grandma at the park. Although it looks like they are in jail, they really are inside a once real train engine.

Grandma and Ben at a sports bar. I don’t have to tell you how wonderful it is to be a grandparent. All of a sudden it is your house they run to instead of run away from. You receive unconditional love; you get a picture every time you show up; great hugs, kisses and all around recognition for just being you. It is kind of like being a kid again. So there you have it, I am one happy grandma. Ben was my first grandchild. I think that once we knew that he was medically healthy, I set my mind to getting him to be all that he can be. I think at first I was a little too gung-ho and did not take into consideration the feelings that my child and her husband were experiencing. I was, you have to do this.. this .. and that. That’s just me. I like to find solutions to situations. I want to know the end result. Plus I am a special educator so I know a lot of what is out there. I think I did manage to offer some good suggestions. Vanessa is very good about taking advice, and I appreciate the