A Special Group of Bloggers
Jennifer, Laurie and Ellen are three moms who blog. But they share a bigger bond that reflects their courage and strength: These moms blog about raising their special-needs children. They are part of a growing group of parents who write to share their experiences with others who face similar challenges. Blogs such as these have evolved into a global virtual support network.
The Diary of a Baby and a Stroke
Jennifer started her blog, The Diary of a Baby and a Stroke, in April 2008 after she and her husband were told during a level 2 ultrasound that their son had a bilateral stroke, or “brain bleed,” in utero.
“We were told his issues could range from nothing at all to ‘profound retardation,’” she wrote on the blog.
She began writing about her experience to keep friends and family up-to-date and because writing helped her cope. The blog soon evolved into an outlet to spread stroke awareness.
Jude, born on September 2, 2008, appeared happy and healthy at birth, but at three months he had a seizure. Shortly after that, it became clear that the stroke he had in utero had caused massive damage. In addition to neurological conditions, Jude has cerebral palsy, vision loss and epilepsy.
Jennifer writes on her blog every day and draws about 100,000 readers. She aims to write posts that are positive and supportive and says Jude has been an inspiration to people all the way to China and Japan. The blog is far-reaching, she said.
One of her more difficult posts was a video of Jude having a seizure. She wanted to share the experience with other parents who in many cases didn’t know their child was having a seizure because they didn’t know how to recognize one.
“I wasn’t sure how people would respond to it, but people thanked me for posting it,” she said.
Jude also has had an impact locally. Jennifer’s 10-year-old daughter, Emily, recently started a charity in honor of her brother called Emily’s Smile Boxes. Since Jude was born, Emily and her family have been in and out of the hospital often, and this experience led her to the idea of creating boxes filled with toys to be delivered to hospitalized children and their siblings to bring smiles to their faces. The boxes, which Emily puts together, include crayons, toiletries, smiley face toys and more. She currently delivers 12 to 36 boxes a month and has set a goal of delivering 100 to 200 boxes a month. Emily has spoken at school assemblies and churches to raise money and spread awareness about her cause.
“She doesn’t want any recognition,” Jennifer said. “She says, ‘I do it because it makes me feel good.’”
“My daughter is a completely different person than before Jude was born.”
Jennifer exchanges experiences and therapy ideas with other parents she has met online. In fact, she discovered a new neurologist through a recommendation from a friend she met through blogging.
The blog’s subtitle perhaps best captures the meaning of the site: “The story of a Mom blessed by her baby.”
“It’s true,” Jennifer said. ”For every mom it’s disappointing and you feel let down and you’re not sure how to feel about it and then you realize how blessed you really are and you appreciate everything your child does more than you ever would.”
“If you have faith and love for your child you can reach” your goals, she said.
Days With Dylan
Laurie started her blog, Days With Dylan, in July 2008, about a month after her son was born. Dylan was born on June 28 of that year. Shortly after he was born he was diagnosed with Down syndrome and an atrioventricular canal defect.
Laurie, too, started the blog to keep friends and family up-to-date. As she continued to write, more and more people commented and she started commenting on other blogs.
“In the beginning it was ok. I felt kind of alone with this and then I met more and more people who had blogs and were going through the same thing,” Laurie said. “There was that feeling that these people understand.”
On the right side of her site is a list of other blogs underneath the heading “Friends…With an Extra Chromosome.” She said she reads about 5 to 10 blogs a day. Laurie also comments on BabyCenter’s Down syndrome board and encourages others there to read her blog.
“They could use my blog to see what a baby with Down syndrome is like – they’re like a baby.”
“I was devastated in the beginning and scared but as time goes on, it gets better and better and I wish I wasn’t so scared and afraid. I try to point new parents to that. He’s a regular baby. There’s a grieving process and then it gets better.”
Blogging also has helped her learn more about Down syndrome. She said she avoids books about the condition because they’re often negative and overwhelming.
“I stick with real stories and people who are going through the real thing,” she said.
The post that generated the most comments was about an experience Laurie had during a doctor’s visit. Laurie had taken her son to the pediatrician because of concern about a rash. The nurse who saw them briefly addressed the rash and instead primarily focused on pointing out Dylan’s Down syndrome characteristics, Laurie said in her post on April 19, 2009.
Here is a censored version about what I was thinking: Honestly? How RUDE can you be? To stand there and pick apart my baby like that! This is my baby. My son.
In that same post, she described a walk she took with her kids a few weeks later. During the walk, they ran into a neighbor who didn’t know about Dylan’s condition. When she told the neighbor that Dylan had Down syndrome, the neighbor got close to Dylan’s face to study him.
She had taken off her sunglasses, leaned in really close to Dylan’s face, studied him for a few seconds and turned to me and said, “Huh. He doesn’t look like a Down’s child.”
The post generated nearly 30 comments. People expressed their understanding about how Laurie felt and shared similar experiences.
“The best part [about the blog] is the support and feeling like there’s a community of people out there who know what it’s like,” she said.
To The Max
Ellen’s son Max was born on December 10, 2002. He had a stroke at birth and today has cerebral palsy.
Ellen started her blog, To The Max, in October 2008. She said she started the blog because it was therapeutic for her and because she wanted to provide support to parents of younger children.
“That first year after Max was born was the hardest of my life. I wish I had inspiration,” she said. “It’s helpful to pull out my feelings, but more so, I’m touching a lot of people.”
An example of how she has reached out to others occurred when Max outgrew his shoes, which were specially designed to go over his braces. She offered them on her blog. When one mom said she needed them, “I shipped them off to her and I felt really great about that,” Ellen said.
Ellen said she writes about whatever is on her mind. She said she often writes in response to comments that people make to her. In a recent post, Ellen recounted how guilty she felt when she and her four-year-old daughter, Sabrina, went to Ellen’s college reunion, while Max, who was feeling under the weather, stayed home with his father.
Also, full disclosure, I wasn’t up for the stares. I just wasn’t. I didn’t want to explain about Max, I didn’t want to recount what had happened to him, I didn’t want to reassure everyone he’s doing OK. I just wanted things to be carefree, like they were in college.
She thought of a unique idea after reading a comment from this post: “You really shouldn’t have to explain Max’s story (unless you want to) any more than you should have to explain why he has brown hair.”
The comment inspired Ellen to create a Bill of Rights for parents of special-needs children. She started the list and invited readers to contribute their “amendments.” About a week later, she posted the Bill of Rights For Parents of Kids With Special Needs.
Ellen invites guest bloggers to post on her site. A recent guest was Christine from The Power of Housewife Word of Mouth. Christine did a Q&A with her daughter, Regan, 13 years old, who has cerebral palsy.
“All moms who have young kids with cerebral palsy like to hear about older kids with the same condition,” Ellen said.
Other guest bloggers have included Kate, mom to Gavin, who has cerebral palsy. In her March 3, 2009 post, Kate wrote about dietary changes she has made for her son. On February 10, Ellen did a Q&A with a pediatric physical therapist.
Future plans include a post from a speech therapist. Ellen said she’s considering asking readers to contribute questions for the interview.
“We’re out there to help people and educate people,” she said. “It’s a community.”
Post by Jessica Braun
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Jessica Braun spent 11 years in the news industry, working at Dow Jones and The Wall Street Journal for 10 of them. She recently made a shift from journalism to marketing but wants to keep one foot in the journalism door because she enjoys writing. She's also a mom of two little ones who keep her busier than she ever could have possibly imagined. Jessica can be reached at Jessica.Braun@momswhoblog.com. |
