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In Search of Sleep

I've been trying to stay in my happy! happy! joy! joy! frame of mind, but it's so hard when you are not getting a full night's rest. Mitchell has once again gone back to getting up during the night. It's a little different this time around. He wakes with loud cries only 2-3 hours after going down to bed for the night and once he's up, he's up. In fact, when you try to put him down, he just cries and cries. Last night Chris and I split 4 hours of late pm/early am up time. Once your own sleep routine is off, it makes it hard to go back to sleep after being up yourself! So last night I think I finally dozed off around 3:15 am having been awakened at 11:15 pm. Even Luke's sleep has gotten disrupted.

Mitchell seems to be having increased seizures at night. I'm calling the neurologist Monday to see if that might be the cause. Maybe M's seizure med dosage needs changing again. Because good news...Mitchell seems to have gained a pound an a half. Hooray! Still low weight, we are trying to keep him on the growth curve trying to avoid or postpone a feeding tube. (A whole other story!) He is 25.5 pounds.

Mitchell had his annual orthopaedic appointment this week. Overall, not much change. Generally, without being able to sit, stand or walk, his bones aren't developing normally. His scoliosis persists and his hips continue to be out of alignment. We're to work on his flexibility to avoid a hip being dislocated which could prompt pain, surgery or letting him live that way. We might arrange M going to typical PT again, but will see with a PT/OT consult with our school system this week. Maybe when Mitchell turns 3, that's something they'll provide.

Per usual, we pray for sleep and Mitchell's wellbeing.

A Look Back at Fall Photos

Mitchie's therapy school sent a CD home today with pics on it from Halloween & Christmas. For Halloween the students and caregivers went on a hayride at a nearby farm. Not able to be there myself, it is so nice to see what went on. These pictures also give me a chance to highlight our nanny as of last summer. We were so sad to see Katie go on to be a teacher, but now are delighted to have another amazing woman in our lives. Meet Laura - she's especially caring and has a heart to serve!

Oh Kay

This is my mom Kay. This picture was taken when we were out having lunch for her birthday. She's got an important role in the cast of characters that make up our life so I thought it best we bring her more into the foreground.

My mom is a great encourager when it comes to Mitchell's condition. She's also an amazing grandma to Luke. She tells him silly jokes and gives him too many treats just like a grandma should. Right around when Mitchell was born, she and my dad moved from the Cleveland area to live only a half mile from us. It's been a blessing to have them nearby.

To me, well...my mom is never without a point of view :-), but I treasure her wisdom and understanding and acceptance of me even when we disagree. A friend recently reflected on my mom and said she has a "sweet spirit". She does! She's very thoughtful.

Just wanted you to know...I love you mom!

Choose Joy!

My dear girlfriend read this to me recently from her daily devotional prompted by my new outlook for 2010. I liked it so much, I'm sharing it here.

There is no need to ever wait for joy. My joy does not depend on reaching or achieving certain goals. I don't have to graduate college to feel joy, nor do I need to be married to feel joy. I needn't postpone my joy until I've retired or reached a certain level of success. Joy is a state of mind, arising from realization and gratitude, accessible to me at all times.

I focus on the joy that underlies my life each day. When I awake, I feel joy. Throughout my day, I give thanks for the people who share my journey. At the end of the day, I am grateful for each experience, I reflect on the blessings in my life and feel joy welling up within me. I never wait for joy. I choose joy in this very moment.

My brothers and sisters, whenever you face trials of any kind, consider it nothing but joy. - James 1:2

Blogs I've Been Reading

I hesitate to link to personal blogs when they are clearly not commercial and when I don't know them. I keep my blog pretty private so if you are reading this...you are special! Yet here are some I keep going back to lately - some more public than others. Can't say I agree with everything said but hope you stumble on something you enjoy:

Lifestyle
http://www.thepioneerwoman.com/ : Popular blogger who shows us experiences alongside her own “Marlboro Man” in a very visual way. I’m definitely a city girl, but even I get caught up in the diverse aspects of her rural life.

http://www.mysixinthecity.blogspot.com/ : Turned on to this from http://www.kirtsy.com/ and I love, love, love her view on moving her family to NYC. Who wouldn't want to dream about discovering such a great big city like she is?

http://www.blog.penelopetrunk.com/ : Where to begin? Looking to narrow my generation gap with young professionals, I sought out this blog after seeing it referenced in Fast Company magazine. Penelope is one of the “voices” of this group even though she is not in the gen Y bracket herself! She blogs about career advice, but adds in spice by injecting her personal sagas. Is she dating “the farmer” or not on any given stop by? She also provides insight on life as an entrepreneur affected by high functioning Aspergers Syndrome. You want drama…find it here.

Technology + Design
www.doncio.navy.mil/blog.aspx : Can you imagine how many attorneys scrub the Navy’s CIO’s blog copy? I like the candor of what gets through. I’m glad to know what keeps the Navy’s information officer “up at night.” Actually federal government blogs have grown. Reference a list at: http://www.usa.gov/Topics/Reference_Shelf/News/blog.shtml

www.leapdesign.com/upsideup/: I’ve come across quite a few agency websites that are too out there or too self-purporting. I’ve found some of the best off-the-beaten-path design and technology topics here. What I’ve learned from this and other innovative design sites…a lot of people care an awful lot about fonts. More at another fav: http://www.howaboutorange.blogspot.com/ I get my free fonts usually from http://www.dafont.com/ .

http://www.cnewmark.com/ : The blog of Craig’s List founder, Craig Newmark. I like to read about his passion for customer service and technology, especially when he’s encouraging governments to infuse more of both.

Spiritual
http://www.thisisreverb.com/ : Cincinnati based creative with great passion for God along with photography + food!

http://www.flowerdust.net/ : Anne is a writer and has interesting views on progressive church topics.

Special Needs Moms + Other Inspiration
http://www.samsmom-heathers.blogspot.com/ : When I stumbled on this site I connected with their daughter’s story as it is so similar to Mitchell’s. (See left bar.) A year apart, they both are affected by Mitochondrial Disease.

http://www.thoughtsfromholland.blogspot.com/ : I actually know Heather. She runs the special needs program at our church. We email, but I feel a connection to her that leaves me without words when I see her face to face. She’s such a fantastic mom!

http://www.nieniedialogues.blogspot.com/ : If you think you’ve had a bad day…read this woman’s story. I am completely inspired and especially love how her devoted husband, Mr. Nielson, has stepped in as blog author while she’s been in recovery from surgery.

School in Fall or Wait a Year?

I know I've been bending plenty of people's ears on this dilemma. Chris and I are trying to decide whether Luke should start Kindergarten in the Fall. His preschool teacher says he's ready - among the best early "readers" (sight words at this point) and socially adept. She says he focuses well and would do well to progress. She doesn't want him to get bored. I so value her opinion and know Luke's readiness has a ton to do with the school's academic focus. We are raving fans of his preschool (www.creativetots.com) He recently told me winter reminded him of Greenland and Antarctica for crying out loud!!!

But.....most boys wait until they are turning 6 to start school. Luke has an early August birthday. Even though he's ready, do we wait to send him in preparation of the long term? Chris waited and thought it was right for him maturity and sports-wise. Everyone seems to wait these days.

If he waits, we can keep him at his preschool or have considered looking into private kindergartens.

We are torn. I've been told, "You'll know." I don't know!!!! I'm a working mom and my knowledge of kindergarten readiness signs is limited for sure! Perspective welcome.

So I’ve done a couple things lately to give me more to think about concerning goals around Mitchell’s development. Recall I’m back to being okay with goals. Wednesday I went to my first Cincinnati Mito Group meeting. In a restarting phase, it was me and 2 other families. We met to discuss how to organize the group, but in 75 minutes I got plenty of ideas on what else I should or could be doing for Mitchell. It was great. It was overwhelming.

Then today, I went to our local elementary school for our 2nd meeting on Mitchell’s first IEP (Individualized Education Plan). A tense exchange because I’m supposed to pleasantly advocate for as much therapy and services possible even at his preschool level. I was well-web-read using sites like www.wrightslaw.com on what to expect. Turns out today was another information gathering meeting. The official IEP deadline is M’s 3rd birthday in March. Have to wait to see what they are willing to provide and whether it will be in home or in the school setting.

So what is the right amount of therapy he should be doing? What else should I be doing for my son?

Admittedly Mitchell has done less therapy lately and had less doctor visits in the past 6 months. Pretty easy to be down from 17 hours of activities a week – a pace we kept for quite some time before we tried a therapy center we didn’t quite like, started facing graduation out of Ohio’s early intervention program and started on new insurance.

The conclusion I come to is this goal or direction:

Do as much for Mitchell as we can; pray and believe he will continually progress; all while having him fit comfortably in our lives.

The “having Mitchell fit comfortably in our lives” infers that we’ll make decisions to balance what can be done for Mitchell with too much running around and disruption of a “normal” family environment that inevitably doesn’t make any of us happy. It means we’ll make sacrifices for him, but not feel guilty for all the things we’re not doing.

There is an expression in marathon running to “stay within yourself” meaning remember you’re running 27.2 miles. Don’t sprint just because you get excited about the crowd around you.

We’ll run our race, not someone else’s.

This doesn’t mean I won’t fight for him whenever necessary or push him to do all he can do.

I just was sent this blog post written by Jon Morrow, an Associate Editor of www.copyblogger.com . His mom was his warrior. I am Mitchell’s warrior too. I can’t imagine this mom not figuring out how to take care of herself & the rest of her family so she could fight the good fight for her son. I know most moms, and let’s not forget dads, consider themselves their children’s warriors, perfectly-abled or not.

On Dying, Mothers, and Fighting for Your Ideas

The doctor cleared his throat. "I'm sorry, but I have bad news."

He paused, looking down at the floor. He looked back up at her. He started to say something and then stopped, looking back down at the floor.

That's when Pat began to cry.

She'd argued with herself about even coming to the doctor's office. Her baby was a year old, and he hadn't started crawling yet. He tried, yes, dragging his legs behind him as he struggled to make it just a few feet on the floor, but it didn't look right. Everyone told her that she was worrying over nothing, and maybe she was, but she told herself that she would take him to the doctor, just to be safe . . .

"Your son has a neuromuscular disorder called Spinal Muscular Atrophy," the doctor said. "It's a form of muscular dystrophy that primarily affects children."

Pat was speechless. Everyone had told her she was silly. She had hoped she was wrong, prayed she was wrong, but still . . . she knew.

"What's going to happen to him?" she managed to say.

"Where most children grow stronger as they get older, your son is going to get weaker. He'll lose the ability to move. He'll lose the ability to breathe on his own. And one day, he'll catch an infection that will spread into his respiratory system, giving him severe pneumonia . . ."

She held up her hand to stop him. "You're saying he is going to die?"

He nodded. "There are three types of SMA. Caught this early, your son almost certainly has Type I. Most children with Type I die of pneumonia before the age of two." He paused. "I'm sorry."

Pat looked up into his face and saw that he really was sorry. It made her angry. Not because of his pity, but because in this man's eyes, her baby was already dead.

"Don't be sorry," Pat said, wiping tears away from her face. Her voice was suddenly very calm."He isn't going to die."

"It's important you understand the situation, Mrs. Morrow. The pneumonia . . . he won't be able to fight it."

"He won't have to," she said. "I'll fight it for him."
The miracle of mothers

Over the next 16 years, I had pneumonia 16 times. But I never died. It sounds strange to say it, but my mother wouldn't let it happen.

She orchestrated a team of more than a dozen doctors. She slept in a chair beside me in the hospital, sometimes for as many as 30 days in a row. She pounded my chest and back every two hours to loosen the mucus, covering my chest and back with bruises.

Today, at 27 years old, I'm one of the oldest people in the world with my type of SMA, and people tell me it's a miracle. And I agree, it is. But the miracle isn't just me. It's a mother who fought like only a mother can to keep me alive.

By "alive," I don't mean just "not dead," either. You'd think my mother would have been satisfied for me to live at home, tucked away from the world where she could protect me, but for her, that wasn't living. She insisted that I be great.

When my elementary school principal decided that disabled children didn't have a place in her school, my mom appealed to the school board and turned every board member's life into a living hell for two years.

She won.

When I wanted to play basketball, she forced an astounded coach to reinvent the rules of the game so that I could be the "ball carrier" for the team, and no one could take the ball away. Not surprisingly, everyone wanted me on their team.

When I could no longer pick up a pencil, she arranged for honors students at local colleges to help me with my homework after school. I graduated at the age of 16, not only near the top of my class, but with college credit.

If you're a mother, none of these things surprise you. Some mothers are weak, sure, but the vast majority fights for their children, especially when those children are defenseless. It's not because they're trying to be heroes. It's because that's their job.

And I think we can learn something from them. Not to minimize what mothers do, but I've come to believe that our job as writers is not all that different.
Fighting for your ideas

Growing up, I always had to fight to get people to listen to me.

The worst part about being disabled isn't the pain or the struggle but how the world tries to shove you into a corner and pretend that you don't exist. After all, what could you possibly have to contribute? You're going to die soon, poor thing. Here's a nice, quiet room and some morphine to ease the pain.

They don't proactively hold you back, no, but they don't expect you to succeed either. I've spent my entire life fighting against the weight of those expectations.

Like when university professors were flabbergasted when, on the first day, I asked my attendant to raise his hand, so I could answer the question that no one else could.

Or the vaguely constipated look on the face of a venture capitalist when I asked for $500,000 of startup capital for my first software company.

Or the disbelieving stares of people at a real estate conference when I gave a talk about buying million-dollar homes without even being able to get up the stairs to see the inside of them.

Their disbelief has never stopped me, of course. It's not a matter of persistence or strength or attitude, as some people think. It's a matter of shame.

How could I possibly look my mother and father and all of the others who have sacrificed so much for me in the eye and tell them, "I can't?" I couldn't bear it. The shame of dishonoring their sacrifice by giving up would poison my soul.
And so I fight

If my mother could ignore a doctor who would condemn me to death, then I can ignore my inner demons who tell me I'll never make it as a writer.

If my mother could demand that I achieve straight As in school, then I can demand greatness from every blog post I publish.

If my mother could lobby school administrators and government agencies to get me the help I needed, then I can lobby bloggers and social media power users to get my idea the attention it deserves.

Not to imply that I'm unique, because I'm not. Yes, I've had to overcome a lot of adversity, but so does every creative person who wants their ideas to see the light of day.

If you want to succeed, you can't wait for the world to give you attention the way a cripple waits for food stamps to arrive in the mail. You have to be a warrior. You have to attack with the madness of a mother whose child is surrounded by an army of predators.

Because, let's face it, your ideas are your children. Their future is as tender and delicate as that of any newborn.

You can't just write them down and expect them to succeed. Writing isn't about putting words on the page, any more than being a parent is about the act of conception. It's about breathing life into something and then working to make sure that life becomes something beautiful.

That means spending ten hours on a post, instead of 30 minutes.

That means writing a guest post every week, instead of one every few months.

That means asking for links without any shame or reservation, not because you lack humility, but because you know down to the depths of your soul that what you've done is good.

You have to realize that your blog is more than just a collection of ones and zeros floating through cyberspace. It's more than the words on the page. Your blog is a launch- pad for your ideas, and you are the rocket fuel that lifts them off the ground.

So burn it up, baby.

Your ideas are counting on you.

Mark your calendar and wear jeans February 28, 2010 to raise awareness for rare diseases. More information at: www.globalgenesproject.org.

More Mascots

Recently I attended an marketing event for the Flying Pig Marathon - my boss is the visionary behind it and I helped make it happen in the inaugural and early years. Here I am with the Pig and Mr. Red. If only Luke was there! We LOVE mascots!

New Year, New Action

I've sort of been teased for being the friend who asks about personal goal setting and personal development planning. I've typically done this when celebrating birthdays, not necessarily at New Year's not wanting to put too much pressure on formulating resolutions.

Much to my dismay, for some time I haven't been in the goal setting mood at all. I remember telling some coworkers that my son Mitchell's condition, surrounded with so much uncertainty, was in conflict with my own aspirations. One example: Chris and I used to muse about retirement. We have acknowledged we don't do this anymore. Who wants to ponder a future with the possibility of having a 30 year old, 6 month old? Or a lot of other random scenarios that we just have no idea of. Better to live day to day. I've put a whole lot more stock in "contentment" than I ever have!

I don't think people have really understood when I've said when you have a child with disabilities you sometimes feel guilty for hoping, dreaming and even having fun. I've secretly mourned the loss of a typical child.

Coinciding with all this, there's been emails and blog posts about claiming one word to define 2010. It seemed too big a task in my fuzzy-directional world. Chris and I together with dear friends with a son who went through something like 5 hospital stays and 2 brain surgeries only came up with "better" when discussing this on New Year's Eve. I know I have more creativity than that.

But then the New Year actually came. Out of no where or more likely because I raised this up in prayer, a switch went off. I haven't exactly written down goals like I have done in the past, but I feel my mind has been made clearer. I do believe I've been feeling happy! I am indeed feeling positive about what 2010 and beyond holds for the Brownings.

I've also gone back to praying for Mitchell's healing. He's actually been super happy himself lately and along with vision improvements, he seems to be slightly more aware of the world around him. I've heard some different vocalizations and his gait training exercises are done with greater speed.

And here's a biggie. I've committed. Mitchell has Mitochondrial Disease. It is his diagnosis whether test results are crystal clear or not. I will no longer tell others "he's undiagnosed". Would you believe I submitted a form to find out more on the local Mito support group? Within 2 days of doing so, I found out they are reorganizing and would be happy to have me on the steering committee. Timing is perfect. I am enthusiastic about that opportunity!

In sum, I feel like part of my old or true self is "back" all of a sudden - added back into the mix with the new part of myself, grown these past few years from having children - one with special health needs. I embrace what's new because there's a lot about me that has changed for the better. (I'm sure more on that later.)

I'm tired now, but will soon be tackling some serious goal setting!

If all this is a bit confusing, it's okay. Humor me. I found this quote that seems to apply:

"How can I know what I think until I read what I write…." --James Reston

Childhood Memory

I read a post somewhere that said your favorite childhood memory tells you what you truly value in life. This has been a good discussion starter. I am lucky to have had a great childhood and many, many great memories come to mind.

One that sticks out is when my dad gave me a ceramic heart for Valentine's Day. It was small, red with white writing on it that said something like, "To my special girl". As might happen with any young child, I quickly broke the heart once it was in my possession. My dad rushed out and got me a replacement. As a parent I now realize I may very well been hysterical and getting another the only way to diffuse my disappointment. Still to me, this experience was a love-language trifecta involving encouraging words, an act of service and a gift! I value all these things.

Chris said his favorite childhood memory was playing football on his street. He agreed it relates to his like of healthy competition and team camaraderie. I should mention he lived in Dayton and his family lived near the Herbstreit Family so he was playing neighborhood football with none other than Kirk Herbstreit of Ohio State/ESPN broadcaster fame!

What's your favorite childhood memory? Does it represent what you value even today?

My hope is that we are creating a gazillion wonderful memories for our boys!