No, not feeling it ...

I always notice the looks and stares. They come from everywhere; some quizzical, some with an all knowing smile, and some with looks of pitty. Every once in a while the stares coming from a child or a group of children. It is times like this that I am thankful that Jenelle is not aware of it at all.

When a child asks questions about Jenelle, I always try to answer them to the best of my ability in a way to make the child understand Jenelle. For children under age 5, this could be answered simply by saying "she has a broken brain." But perhaps as Jack gets older, our audience gets older as well. The questions are more in depth. I try to answer them all, but sometimes I'm just not feeling it. Last night was one of those times.

We were watching the Championship Game for the 8 year old Division of Little League. The side lines were packed for this exciting game, and children were running everywhere. I stood with Brett on the side lines while Jenelle quietly sat in her wheelchair doing her usual things; playing with her hair, making noises, and/or batting at the toy piano we brought along. She was very much in her own world and oblivious to the game.

Suddenly, I noticed a group of four younger girls sitting a few feet in front of Jenelle. It was not hard to miss them. They had their backs to the game, and their eyes staring at Jenelle. I thought to myself that they were probably the same age, and probably wondering what was "wrong" with Jenelle. And as they sat, I could see they were gaining confidence, and ready to pounce on me with questions at any second.

Normally, I would welcome questions and answer them best I could, but last night was different. I just wasn't feeling it. I wanted to enjoy the game. And just as they stood up to approach me, I grabbed the handle of Jenelle's wheelchair and walked away. As I did this, they followed me with a quickness in their step. I laughed to myself as I realized I was being chased. Then one little girl screamed out, "Why does she have to sit in that?" I ignored her, and finally found refuge with another parent I knew, and then the girls left us alone.

I felt horrible, but at the same time annoyed. I know their parents wouldn't have answers any better than the ones I would have. But I just wasn't feeling it. Feeling miserable, I confessed to the parent about what I had done, and he smiled and said, "I'll bet you get that a lot, and it's OK not to answer sometimes."

I'm sure this will get harder as the kids get older. And in any other situation I am all for anyone asking questions. But to be bombarded by four, 5 year old girls while trying to enjoy a Little League game was just to much. I will give that lesson some other day. And it's OK. I'm human that way.

Headphones

These headphones were recommended by another Special Needs parents on one of my support boards. They are child sized and relatively inexpensive.

Click here to order.

Seizure control... again!

I was going to send an update late Friday, but me being the superstitious seizure Mom that I am, I decided to wait the weekend to make sure the good news was true. After increasing her regular seizure medicine Felbatol, Jenelle's seizures are finally under control again. Thank you all for the thoughts and prayers!

We went to a couple of BBQs this weekend with some friends and with family who haven't seen her in a while. Everyone was quite amazed with her progress. This weekend she's been a little cranky, and in all honesty we're not sure why. Brett thinks it could be her teeth, and I am wondering if its the increase in meds. Other than that, things are great and hopefully with time her crankiness will subside.

Earlier this week, Jenelle was casted for new AFOs (Ankle Foot Orthotics) and I purchased some sound reduction head phones to help cancel all the extra noise at big places like restaurants (or Angels games!) Even though she doesn't like things on her head, she actually hasn't minded wearing the ear phones. Probably because they help with all that extra stimulating noise!

That is all for now. We hope you are enjoying this long holiday weekend. Thanks again for the thoughts and prayers. Once again, they have helped!

What would Jenelle say?

At first, it was a way to get the word out to family and friends. A handful of e-mail addresses with the latest information on the medical situation with Jenelle. The e-mail updates turned into a form of therapy for me; a way for me to recall all of the information we had to process, and a way to avoid not having to re-live and re-tell the more emotional parts of the story to others. The distribution list grew, and I started to post the updates on our small family website which was on Geocities at the time. And somehow in all that, I became a “Special Needs Mommy Blogger.”

When it became difficult to keep all the updates on the small, free website I had been using, I looked for a new forum and found Blogger. It had all the elements I was looking for; it was free, easy to use, it had the ability to have visitors leave comments and ability to host photos without a size limit and with relative ease. Each and every one of the e-mail updates is on this website. Sometimes there's a little extra too, like this piece. But really, that is how Jenelle’s Journey came to be the website it is today; a “special needs” blog.

I love reading other websites and have connected with quite a few people who have similar issues in their life. Of course, when I started reading other blogs, I came across the infamous blog called Dooce, which is written by a charmingly witty woman named Heather Armstrong. Now, to help my friends and family who really only check out Jenelle’s website and have never really entered the blog-o-sphere; Dooce the website is huge. It's not really about special needs, or really much of anything, but it's huge. The website pulls in one million readers and as I recently learned in reading the recent feature on it on Nightline, it rakes in $40,000 a month in ad revenue. That figure just astounds me. So people, Dooce is HUGE!

I started reading Dooce at the tale end of her post partum depression I think? Also during that time, she was dealing with her daughter’s small development delay in that she was not walking at age 15 months. Her writing then didn’t interest me as much, and frankly it was hard for me to read about her child’s delay when in comparison to my own child’s issues it seemed quite trivial. I know that makes me sound pretty horrible to compare my woes to another, but if you were to walk in my shoes (and some of you do) you would understand why sometimes you just have to look away. I recently began to read her website again and have found that the tone and spirit of her posts have changed a bit. They seem more up beat, and happy. Maybe it was the stress, maybe it was the depression, but now I finally get why she is such a super star.

Recently Mrs. Armstrong made an appearance on the Today show, and I watched the video clip of her interview with Kathy Lee Gifford on her website yesterday. One part of the clip really spoke to me – what will her daughter say years from now about her Mom pouring her life story on the Internet? Well, if your child is neuro-typical, as is Mrs. Armstrong’s daughter, I’m sure someday she might have a lot to say. I never actually thought that this could ever happen to me with Jenelle. Because let’s be honest, Jenelle can’t talk, can’t read and is in her own world most of the time. While I hope and pray for a miracle someday that will allow her the opportunity to read this website; I don’t think I’d bet on it.

Mrs. Armstrong had an excellent answer for Kathy Lee in that you have to have boundaries. I’m not naïve, the Internet is a big scary place. My child is a little girl, and there are some truly sick people in this world. That said, I too have boundaries and am careful about the things I share on this website, especially as Jenelle gets older.

Now mind you, we don’t have a million readers, but Jenelle is somewhat of an Internet Super Star in her own right. I’ve literally been approached by people at the park who recognized her from her website. I get e-mail from all over the world from other parents who are going through similar issues with their own child who ask me for advice. People find this website consistently when searching for things like “infantile spasms” or “getting Vigabatrin from Canada” or “hand twitching as a seizure.” And yes, I’m hoping and trying to get this into a book someday. I think this website serves a purpose, and it helps me cope emotionally to know that our long journey with Jenelle’s seizures has had some good by helping another family down the road.

As Mrs. Armstrong implies, Mommy Bloggers are connecting with others and sharing a similar story. We are learning from each other, and we help others cope via the Internet. Whether you’re sharing mundane stories about your life, or details about a rare medical condition, we are connecting. And that to me says something positive about society. The more we connect the more human we become. I feel better about the hardship we have in Jenelle in knowing that our story might help someone else down the road.

What do I think Jenelle would say about this website? I think she would be proud. I think she knows her purpose in life is to help others see and appreciate things differently. And because she is my child, I know this is what she would want.

MRI Results

I got an e-mail yesterday from Dr. Shields' assistant about Jenelle's MRI results from April 16. Not surprisingly, the results were "normal" (whatever that means!) His assistant said there were some "sinus issues" noted, but that it was nothing very serious. I've arranged for UCLA to send the films and the report to our metabolic doctor (Dr. Chang at CHOC) as he originally requested these tests be done. We should meet with Dr. Chang in the next month or two so we can discuss the MRI/MR Spectroscopy in detail.

Speaking of "normal" - How's that for timing with Blogging Against Disablism Day? ;)

Jenelle continues to be battling an increase in seizures recently. It's hard to watch this happen as the seizures leave her so very tired. Last Sunday, Jenelle actually took a nap in the middle of the day (after having a rather long seizure that morning) which is very unusual as she rarely naps. All the usual suspects like illness and teeth have been ruled out. Dr. Shields increased her Felbatol a week ago, and since doing that the seizures has decreased a bit, but we're still seeing more than usual. He and I will speak again next week, and determine where to go from there. Please keep her in your thoughts that they don't get too out of hand until we can get control again of these nasty seizures.

Thanks again for the continued thoughts and prayers. I'll keep you posted.

Highlights from BADD 2008

I wanted to share some of my favorites posted yesterday in honor of Blogging Against Disablism Day. Enjoy!

Reimer Reason - The meaning of Disablism

All 4 My Gals - "I Hate That Baby Talk" (from the words of an 8 year old with Downs)

Dot Com Mom - "This is a Person"

Disability Studies, Temple U - "Celia's Retreat"

My Peggy Peg - "More Purple Syringe Stories"

Blogging Against Disablism Day - 2008!

"Coming to terms with Normal"

This is my 3rd year participating in Blogging Against Disablism Day. Disablism is a term used to describe discrimination against persons with disabilities. The main focus for Blogging Against Disablism Day is to point out some of the challenges that face individuals with disabilities, as well as to raise awareness about various disabilities. To find links to read and enjoy the post from others in support of Blogging Against Disablism Day 2008, please go here. To read my posts from 2007 and 2006 (about Discrimination and the Challenger League*) go here and here. To understand more about the term "Disablism", please read the piece, "One in Seven" by Lady Bracknell.

This year, I want to tell you about a 5 year journey I’ve had in coming to terms with the word “normal” and how that word now applies to my handicapped child.

Definition of normal: According to norms or rules; Usual; ordinary; Healthy; not sick or ill.

When you become the mother of a child with special needs, the word “normal” suddenly becomes a dirty word. It is a reminder of the normal life you’ve now lost and a description of what your child is not. In order to put less emphasis on the word normal, many parents of special needs children often refer to “normal” children as being “neuro-typical.” To me, changing the name or phrase doesn’t take away the reality.

Our Jenelle is now 5 and ½ years old. We’ve been living with the realization of her special needs for 5 years now. In these 5 years, I feel I’ve come full circle in coming to terms with her disability, and with the true definition of what normal really means to me.

“According to norm or rules” – This part of the definition of normal happened for us very early on with Jenelle’s disability. There are milestone markers to be met by an infant (rules) and she clearly wasn’t meeting them. This was our first taste with those words, “not normal.” Because she was just a few weeks old, it was hard to come to terms with it. She wasn’t meeting the norm, and yet we had no reason for it. No answers. She still had a lot of growing to do as well. I think in the beginning, special needs parents can often fool themselves into thinking that “normal” is still a possibility for their child. The reality is that it is not.

The day we took Jenelle home as a baby, we were under the impression that everything was fine. On that day she was a “normal” child; a very good and very quiet baby. Milestone markers are there for a reason, and eventually the fact that she wasn’t reaching her milestones was hard to ignore. Milestone markers are there to raise attention to possible problems with an infant. When Jenelle failed to meet the 6 week milestone of supporting her own weight, we began to realize that there was something wrong, and definitely not “usual” or “ordinary” about our child.

“Healthy, not sick or ill” – this is the most misleading part of the definition because our Jenelle was healthy, and definitely not sick or ill. She just wasn’t meeting her milestones. How could that be unhealthy? I think the hardest part of “normal” for me were her first test results. As we searched (and continue to search) for some answer to why our child is the way she is, each and every test result was normal. The only exception was the EEG. The EEG was abnormal (finally something to show we weren't crazy!) It confirmed she was having seizures. Persons with epilepsy can look very normal, and yet epilepsy can be a very debilitating disability. And in a weird way of looking at it, that abnormal EEG was normal because it confirmed she was having seizures! It is normal to have an abnormal EEG when you have seizures!

I have never been one to wince at words like “abnormal,” “mentally retarded,” or “handicapped.” These words to me are descriptive of what my child is like. For our family, a “normal” dinner consists of my eating with one hand while holding a syringe in the other to gravity feed Jenelle through her g-tube. We do this at our dinner table, at the mall, or at a restaurant. This act is “normal” for us as it has become part of our "usual" and "ordinary" routine. And that is everyday life with Jenelle.

As time goes on you eventually come to accept your child’s disability. Every special needs parent has to come to terms with mourning the loss of the perfect, normal child in their own way. I’ve learned that the paths in which one can take to come to accept the hand a disability has dealt them can be as different and as unique as the disability itself. Denial is a very safe place as coming to terms with abnormal is difficult. After the grieving, and the learning, and the heart ache, eventually comes acceptance. Eventually we learn to accept that our life is the way it is. Our life is normal to us, even if you have to twist the meaning in that definition to fit our circumstances. Once you find your own definition of normal, I think you’ve come full circle in dealing with your child’s disability. And life becomes normal again.

* As a follow up to last year, I wrote about starting a new Challenger Little League Team with our local league. If this is your first visit to our website since that post last year, please check out the video below of my Jenelle walking to first base! The Challenger Program we started is enjoying a very successful first year. Not only are the disabled children enjoying the game of baseball, they are simply amazing to watch. I am touched by the lessons the “Neuro-typical” kids are learning from the Challengers. If your local league does not have a Challenger Program, I encourage you to look into starting one. The gift from being involved in this experience is simply amazing, as a parent and as a volunteer.