I decided to start blogging about Jordan from the moment I found out I was pregnant. Jordan was born with a little arm that didn't grow like most babies. Her left arm stopped just above the elbow. Now I'm committed to making sure Jordan gets everything out of life. We feel blessed to be the parents of a very special little girl.


5 Minutes for Special Needs

I almost forgot... I was traveling yesterday and didn't get to post this. Jordan's blog was featured on the 5 Minutes for Special Needs website yesterday. One of the writers interviewed me. You can see it here.

But since she couldn't post the full interview, here it is:
Tell me a little about yourself and your family.
I'm 34 and the mom of two kids: a six and a half year old son named Cameron and a daughter, Jordan, who is almost three (12/29/05)! I'm married to my college sweetheart and we are both newsroom managers in Missouri. We also have two dogs that keep our lives even crazier. I work on the tech side of a newsroom and that helped me get really involved in online support groups and build a voice in my blog about my kids. I started blogging when my son was three and a half. I ran a little picture-based website about him for my family ( they live in all kinds of locations - but not nearby ) He was getting to an age where pictures weren't enough, so I looked to blog about him so I could write about the funny things he said. When I was pregnant with Jordan, I started a blog a couple of weeks into the pregnancy... Little did I know it would become a little place to help me grow into a parent of a child with a difference!

Tell me more about child’s disabilities.
Jordan was born missing her left arm just above the elbow... If you look at her you'll probably think she has an elbow - she appears to have tendons that would be connected to an elbow IF she had one. I had no idea about her difference until after she was born. I was actually the first person to notice. It was a special moment with my husband - we looked at each other and were immediately at peace. We knew she'd be okay. The biggest concern I had at first was worrying about how the rest of our family would react. There was a level of disbelief. One family member talked as if a prosthetic could help "hide" the "problem." I quickly made sure the family understood that I didn't consider a tool to be the answer. The best answer would be helping Jordan learn how to be self-sufficient on her own. That was our goal from the start. I certainly have had ups and downs. I mourned the loss of that vision of a two-handed child. I mourned for the loss of our ability to be anonymous. (Hanging out with a one-armed kid makes me very recognizeable) I mourned for my child's challenges -- but as she grew and met her milestones (some in some very non-traditional ways), the more I realized her changes weren't that big a deal to Jordan. She doesn't know differently! This is how she was made and she's figuring it all out.

How did you go about making the decision to blog about them? What do you personally get out of blogging about them and their issues?
I fell into blogging about Jordan because I was already blogging about her before she was born. At first I found it therapeutic to just write about being a new mommy with a cute little baby and the various therapy things we were working on (along with her missing arm, Jordan was born with really unusual low tone issues in her neck and torso - we have no idea if the arm had something to do with it). My challenges with work, feeding and driving all over the universe with appointments were overwhelming. As I went on, the site helped me reach out to other parents of limb different kids and I realized I had a chance to use my blog as an outlet and a touchpoint for other parents in a similar situation. I crave a community. I spent a lot of time connecting with other moms and dads with the help of my blog. I also now help moderate a group called Sammy's Friends (http://www.sammysfriends.org).

What is a typical day like for you and your family?
Life is pretty usual for us. Along with getting ready many days we have to remember Jordan's arm for days when her occupational therapist meets her at school. (We're about to age out of our state 0-3 program and we'll have to go back to driving back and forth to appointments. I'm not looking forward to that) Jordan is still pretty little so I have to help her get ready for school - bathroom and dressing skills are still in progress. A missing arm doesn't really change the day to day on most days. There are times when we have to battle between if Jordan will or will not wear her prosthetic - and these days I've decided to just not fight. I don't want a tool that is supposed to be helpful become something she hates. So she wears it on days she asks for it and she wears it when she is working with her therapist. (We're about to get her a new one and our thoughts may chance while she learns to use it) There are days when I forget her arm and have to race home to bring it to school. We do have to fight wearing shoe inserts to help correct her ankle structure -- her legs and ankles started bowing inward because that's how her brain told her to stand to maintain balance. Her knees straightened but we're still battling the ankles. Jordan doesn't appreciate how those inserts prevent her from wearing many other the shoes she likes. (She's a shoe girl)

How have your child’s/children’s disabilities affected you as a person and as a mother?
What did you do right? What do you wish you had done differently?

I am a totally different person. I kind of feel like I lived an anonymous life and we were placed into a new world. We were chosen to help lead Jordan and our community. When Jordan was little I had a hard time with the stares. I wasn't used to it. I didn't know if I should walk up to the adults and tell them what happened to Jordan. I felt I needed to explain her difference before anyone asked. When I allowed myself to let go of that concern and just live our life, I felt free, like a burden had been lifted from me. I wish I had let go of that sooner.

I am much more understanding to other people with disabilities. I'm also very proud of my family. We don't hide and we do whatever any other family does in our community. Often we end up talking to a person who wants to know about Jordan -- and we explain this is how she was born. Lately Jordan has started talking for herself - simply explaining that she has one big arm and one little arm. It's very sweet. I am trying very hard to not get angry when it comes to talking to uneducated people. I appreciate up front questions. I don't appreciate staring, whispering and pointing.

I am Jordan's biggest fan and I spend a lot of time making sure she's getting the care that she needs - it requires extra time and energy that I never realized I have. I have fought insurance. I have fought the state when they wouldn't let her into its program for kids 0-3. I have that mommy bear mentality when it comes to making sure Jordan can grow and do anything. I wish I had known what kind of support was available to her sooner - I wish I had started looking for PT and OT earlier when she was first born. It isn't that easy to find a good pediatrict PT and OT who have had experience with congenital amputees. (At least in my neck of the woods)

What do you want other parents fighting the same fight to know?
A limb difference is nowhere close to the end of the world. Our kids can do anything and it's amazing what Jordan can do. It's so important to reach out to other parents so we can support each other and our kids will have friends who understand. It's awesome to be able to compare and contrast notes on how we're helping our kids grow and live a wonderful life.

Is there anything else you would like to share?
I would love to continue to build a bigger community with parents of kids with limb differences. I welcome blog visitors (http://bornjustright.blogspot.com) or new members to Sammy's Friends (http://www.sammysfriends.org)!

Special Needs Blog


Student of Life said...

How cool is that? Way to go, mama. That's good stuff.

twin power mommy said...

That's cool.

You were quite thourough with your answers and i liked the questions being asked.

Very nice.