The Browning's Christmas was full of JOY and CHEER. We really enjoyed time with family. Hope your holiday was as full of love and all things bright!

Girl Time at Christmas

So fun to get a night away and enjoy a festive dinner with dear friends at Christmas. Thanks Michelle and Mia for always being there! I'm so lucky to count you as my friends.

Also had fun this week celebrating my friend, Beth Ann, on her 40th birthday. Husband Rob surprised her with a night with friends full of laser tag and go-carting. Here she is with one of her sweet daughters. You know Luke loved it all!

Looking forward to a holiday lunch on Fountain Square with these two special friends, Cindy and Bev. They gave me a Christmas present early - the black lighted tree I wanted! So avant-garde to have a black tree, if not a bit controversial! It's sitting in the bay window area in my dining room and I love it!

Let's not forget this gal, my mom! Here she is making ornaments at an annual party we go to each year at the Association for the Blind and Visually Impaired. She's coming over Friday to hang out, help Chris prepare new recipes he's grilling for Christmas Eve dinner, then go to an early Christmas service with me. Can't wait!

I'm so very lucky to have these and other great friends in my life!



Fun in Town at Christmas

Last Saturday, Chris, Luke and I hung out downtown doing all things holiday. We had a fun lunch, we ice skated, we rode a trolley and saw the big train display. We've been taking a trip downtown every December. This outing was made easier by leaving Mitchell with my mom. Too cold and hard to navigate his chair. We had a glorious time and said all agreed we needed to take the time to have these kind of outings more often!

Mitchell's Latest Sleep Study/EEG

A couple weeks ago, Mitchell stayed the night at Children's Hospital for a 24 hour sleep study during which they monitored his seizure activity. He had been trending to have more of them and they mostly interrupt sleep. Boo!

The medicine he takes for seizures (Depakote) is at the proper level in his system so his neurologist is taking it slow in making any change.

We are to evaluate with a nutritionist whether to put him on a ketogenic diet which consists mostly of fat. He'd have to start on the diet in the hospital if we go that route. No word yet, but inexplicably after the study, he started sleeping better and having less visible and lengthy seizures. Go figure!

Great Pictures!

I bet you want to see updated photos of the Browning boys, but I just had to share these awesome pictures of my niece Riley and nephew Gavin, plus my brother Craig and his wife Carli. Adorable! I reached out to a couple photographers myself to get professional shots taken. Didn't start early enough but scheduled a session around Mitchell's 4th birthday. I can only hope they are as great as these!

 

I'm Baaaacccck!

Well, I'm going to try to be. It's been about 9 months since I've regularly blogged. I recently took some time to revisit what I had written in the past. To my amazement I didn't find my writing half-bad! And of course I found it interesting to over-analyze my past self-over-analysis! Plus, how great was it to have a diary of all the noteworthy things that have happened to our family?!

Some of you know I gave a half-hearted attempt to blog under my own domain name @ www.staceybrowning.com Not much to see there, but in case you are curious. I crafted what I thought to be a very clever poem about our summer goings-on.

So I'm back. All I ask of you loyal readers is that you comment, comment, comment! That's what keeps me going!

Bye for Now

I have decided to take a break from blogging. It's true I enjoy it, but I've also recently realized that I can kind of hide behind it. With my regular updating, everyone knows what we Brownings are up to, so I've been less prone to reach out to others for more in-person and on the phone sharing. I feel a little disconnected from some very important people in our lives. I sure hope this makes sense!

But before I sign off, I can't help but share some pics from Mitchell's 3rd birthday and first day of preschool. Big events that seem to make this goodbye feel more like a beginning.

When we dropped off Mitchie at preschool, the therapists and teachers went crazy! They were so excited and prepared for him. They took more pictures and video than I did! And, I got a lengthy report of positive progress after only the first day. I already know he is in such capable and caring hands. Here he is with his classroom aide, Jennifer:

Last but not least, another highlight I wanted to share is our 7th year wedding anniversary celebration. We took off for one night in Louisville staying at the artistic 21c Museum Hotel. Very cool. Given what our church and small group is studying, this was a very appropriate backdrop:

I guess for now we're looking to be a little more free of all the fear and worry that surrounds the management of Mitchell which this blog just emphasizes - not to mention the typical stuff that surrounds an average 4 year old. (Shucks, who am I kidding...our Luke is far from average!)

Keep in mind, I may pick blogging back up at some point. In the interim, feel free to reach out to us by phone or email.

Love to you all and remember...we'll always have facebook ;-)

Tying up Loose Ends

I’ve left some things open ended over the past few months. I’m excited to be reaching closure on some of them. In fact, I didn’t realize until today how not having clarity in these areas has been causing stress. First...

Luke is going to start kindergarten!

After touring other preschools for Luke to attend, many Montessori environments, all of a sudden the “mom voice” everyone told me about started shouting “he’s ready.” He has a great memory, picks things up quickly and as he current preschool teacher says, he already has the maturity of a kindergartner. This has been a hard decision because “the world” tells you to “red shirt” your child with a summer birthday. But it’s so hard to make plans based on future potential impacts. Like Luke being the last to drive of his friends. But I can't imagine him waiting another almost 18 months to start school given where he is at today.

Mitchell is starting preschool!

As mentioned before, we have been following instruction on how to transition Mitchell from Ohio early intervention services to our city’s elementary school. The goal of the process has been to have an Individualized Education Plan (I.E.P.) which outlines services Mitchell will be provided by the time he turns 3 years old. The process has not been easy! It’s a negotiation with legal protection for FAPE (free and appropriate education), but no specification on minimum hours delivered. Over 3 meetings, the school got to know Mitchell. 2 meetings included Mitchell being evaluated by therapists and teachers. The other included a lengthy survey of me on Mitchell’s medical history.

It took 2 more meetings to reach an agreement. Knowing it was a negotiation – my demand for services for Mitchell likely would outweigh the school system’s resources needed to provide them – I set my baseline at the hours of preschool we sent Luke to when he was Mitchell’s age (5 ½ hours per week.) Why not more? Well, I’m realistic about Mitchell’s tolerance for attending school. I knew I’d leave thrilled if they offered 6 hours a week.

The school’s first draft offered 2 hours of services per week. Boo! I told the administrator that seemed the very minimal they could offer. So back to the drawing board. At the 5th and final meeting, it was decided Mitchell would go to AM preschool 2 days a week. He'll have his own aide so he'll be able to participate in art, music and play type activities and will be taken out of the typical class for one on one physical, occupational and speech therapy. I am so happy with this because his experience is going to be customized, but similar at the same time to what a normal child would have. We're planning on him continuing at the Conductive Learning Center one day a week too.

There's one more major open ended question we haven't reached conclusion on and that is whether to have Mitchell be fitted with a feeding tube. We have resisted, but feeding him is more difficult lately. We've been getting input from others and plan on re-meeting with a couple of his doctors to work on figuring this out.

Here is a silly photo site I had some fun with. More at: www.photofunia.com
Very cool for Luke to see Daddy in Star Wars garb!

Mitchie Close Up

I always post the very best pictures of Mitchie. This afternoon I just started snapping shots of him, drooling, eye rolling and with a dirty shirt and all. I'm actually moved by the finished product. These really are the many faces of Mitchie. I'm also struck by resemblances to Luke. Love this guy!

Mitochondria are the Powerhouse of the Cell and other Fun Mito Facts

Today I went to work for a couple meetings, then took off for a 2 hour "Grand Rounds" session in nearby Louisville put on the UMDF - United Mitochondrial Foundation. The purpose of such sessions is for education to come to the those affected on a more regional basis since not everyone is close to a center of speciality. Speaking first was the Executive Director of UMDF, Charles Mohan, whose daughter was lost to a Mito diagnosis. Then the renown Dr. Cohen of the Cleveland Clinic spoke. It is his partner we've seen at the Clinic ourselves.

What were the takeaways? Aside from getting a biology refresh on how our bodies produce energy, best practices for "treating" the diagnosis were discussed. There is no cure, no 2 mito patients seem the same and the supplements often prescribed often only make a difference in a minority of cases. So avoidance of triggers were covered. "Stresses" on mito patients that exacerbate weakness and possible regression were covered include sleep disruption, heat, sickness and starvation. There were other parents there who told stories of sleep problems to which the doctor said sometimes it's as simple as the child needing to eat during the night. Good to know! Dr. Cohen recommends not only adequate hydration for Mito patients, but over hydration. He cited up to 2 liters a day of water for an adult.

In the research area a lot of time was spent on instructing us on how to lobby government officials to get a bigger piece of the NIH budget spent on Mito research and how genetic testing is improving all the time, but until then, without more commonalities in diagnoses, the chance at a cures needs more time. I didn't realize the importance of building awareness of Mito before the session. Many people go undiagnosed. And everyone's mitochondria lose steam as we age. Definitely glad I went!

Letters to God, a Movie

This one looks like a tear jerker! Inspired by a true story, it's about an 8 yr old boy who is battling cancer and writes letters, or prayers, to God. Prayers for him and those around him. Movie's not out yet, but made me pause to ponder what our sweet Mitchell would say to God if he could.
The Movie - Letters to God, a Possibility Pictures Production

End the Use of the R-Word

A movement to end the use of the r-word has been gaining momentum and today marks a national reminder for permanently ending the use of the word. I can relate. I recall having a terrible feeling I got when Mitchell was only 5 months old and an acquaintance commented on him saying, "I'm not going to lie to you...I think he's retarded." What an ignorant thing to say and an awful label to put on anyone.
R-word.org - Change the conversation...

The Love Contest

When I got home today Luke told me we were going to be in a "Love Contest." What oh what did that mean? I had to ask. He said our presentation would be first. He and Daddy would be behind the curtain and I was to talk about our home and our love. He said he knew "the Browning family is going to win."

He said he used to dream about this when he was a baby, which probably means he thought it up today.

I've already won knowing Luke understands the strength of our family's love.

Finding the American Heart - ABC News

Finding the American Heart - ABC News

Mitchell is still going the The Conductive Learning Center. He attends for 3 1/2 hours two days a week. We were called tonight to let us know the school was being featured on national news. Here is a limnk to the clip. We love the school and are so happy everyone there loves Mitchell.

As Mitchell turns 3, we start becoming eligible for services through our local school district. There have been evaluations and such and we meet Wednesday with administrators to hear what they can provide Mitchell. It's possible Mitchell will be able to attend both the public preschool and continue at Conductive for the rest of this school year. We'll see!

Healing

Last night some friends in our circle hosted a gathering at a local coffee shop celebrating the healing of their daughter's hearing. Yes, you read that right. She had hearing loss, wore hearing aids the past 4 years and after attending a healing service at a church they'd never been to before, she hasn't worn the aids since. I'd host a celebration too!

The night started with some singing of songs, sharing of the family's testimony, then a call for others to share their stories of healing with the understanding that the Lord who healed people as told in the Bible is the same yesterday, today and tomorrow.

A mom told of her young boy born without part of his ears developed. He was expected to be deaf. One check up had the doctor proclaim the formation now being intact. And that he had no explanation for the healing, "It's a miracle." The boy can hear.

A man our age we know talked about having had hip pain. X-rays had doctors tell him he needed a full hip replacement - he had the "hip of an 80 year old". There were actually pieces of his bone shown shattered. He said he never received so much prayer and just believed it would be healed. During a follow up view, the doctor reversed his opinion not understanding what change occurred telling him he must just have a muscle strain.

A dad told of his son being born with hydrocephalus (water on the brain). Prayer. Cured. That boy now developmentally appropriate.

Another man stopped wearing his hearing aids one New Year's after traveling to Phoenix for a healing service a friend recommended and receiving prayer there.

While these are all reflections on physical healing, other types of healing were discussed.

I don't consider my friends and those we know weird or fringe, so all I can do is believe.

Chris and I have questioned whether continual prayer is appropriate or just setting ourselves up for disappointment. Last night gave me encouragement that our prayers should not be deterred.

I know this all may be "senior level" for you, but as a family so desperately praying for healing today, I wanted to go on record that if or when God heals Mitchell, I will throw a blow out party and gladly add ours to the story that carries on.

Late Night with Stacey Browning

The thing about Mitchell getting up at night is even when he sleeps all the way through, you often get conditioned to wake up around the time he often does. Or maybe this just happens to me and Chris. We are very much the early birds. I can't remember the last time we set our bedroom alarm clock. We both sort of set our internal clocks and up we are with time to spare.

So this morning I awoke at 3:3o AM even though Mitchell is peacefully sleeping. Having spent the past week or so very much focused on work, I took to surfing the net. I spent an hour or so reading blogs of special needs parents. We all sound alike. It's comforting, but somewhat sad. We all must have to just "get it out" sometimes. One site quoted, "The Lord fills your plate with what you can handle----> If I were less strong would my child be normal?" There are many life questions when you have the job, gift, honor, struggle of caring for a disabled child.

I did come across this:



I think at no less than $529 it would make a nice birthday gift for Mitchell. There are rare times when we are rolling on the floor that I see him initiate crawling movements. Not strong enough to lift his own weight, he tires and goes nowhere. Perhaps this would encourage him more.

I'll ask Chris about it. He got up at 4:30 AM and is downstairs running on the treadmill :-)

Luke's Questions

Just when I have been making some progress on reacting to others' reactions of our family/Mitchell, the challenge got harder.

Luke has been saying things like...

"When is Mitchell going to grow?"

"When are we going to have 2 kids?"

"I hate not having a brother."

His realization of Mitchell's situation has come out of nowhere. He knows there isn't anything we can say to change things so we listen and empathize, frankly sharing his anger at the situation.

I feel we've all been on a bit of an edge knowing that M's birthday is approaching. Luke always has said, "Mitchell will walk when he's 3." Well, his being 3 is just about here and no real change.

Here's a post that helped me think long term and how Luke will grow to be a strong, compassionate man only more so because of the uniqueness in our family.

http://www.hopefulparents.org/blog/2010/2/21/happy-birthday-my-sophie-girl.html

Picture Taking

I still have no clue how to use my new Nikon. And what's worse it seems like there hasn't been too much around here to capture on film! So here's a couple photos I have taken recently:

Mitchie hanging out in his bike/gait trainer:

Flowers from my 3 guys on Valentine's Day:

How I (Blog) Roll

I've been reading a lot of "family" blogs - ones like this one that aren't commercial and basically are downloads of parenting happenings and musings. I've found something out. Some are hard to read.

I worry my posts are hard to read. You let me know on that. But in my attempts to be a clear communicator in this blog world, here's my approach:

• I post a lot of pictures. People like pictures. Especially family and friends who don't see us much. Case in point, I save every Christmas card that comes with a photo. I pitch the other ones. (If you send one sans photo, don't worry. I hang it up and truly enjoy it for its season!)
• I don't start a post in the middle of a conversation - you will be confused. It is not redundant to frame the discussion topic even though you get inside my head regularly at It's Browning.
• I mix up more reflective and introspective posts with shorter or frivolous messages. That way you don't think I'm overly self-consumed or worse, depressed.
• I do not post large blocks of text. Or at least I try not to. It's too hard to read! This is my biggest pet peeve about other sites. (Is a long bulleted list a large block of text?)
• I sometimes don't care about typos or grammar issues. In real life I care a great deal about these thigns, but sometimes not time to edat when u'r poring your sole out.
• I attempt to insert posts occasionally with helpful hints or neat sites I've found. Other moms/bloggers sell things or showcase their crafts.
• Rarely I've included a post written by others. I'd love to do this more. If you are interested in submitting a post, just email me.
• I break the rules I know about consistency and branding and change up the look of my site quite frequently. I rearrange my furniture a lot too. I hope maybe you are periodically surprised when you visit and the page looks different.

I saw these suggestions for blogging at: http://flowerdust.net/2010/01/06/how-to-be-the-most-awesomest-blogger-ever

Be engaging.

Make it thoughtful.

Be kind, and truthful.

And above everything else, show love.

But without being yourself, your blog will never be the best it can be.

I find when I'm bold enough to be transparent with our situation and my feelings on this blog, I somehow receive back a tangible hug in this virtual world - whether it be through an encouraging comment, an off the record email or an in person squeeze that comes just when I need it!

Top that Woe

So my friend read my latest blog post, then turned to the Sunday paper and put 2 and 2 together...

Columbus Dispatch Commentary:
Pain is pain, and people have to cope in their own way
Sunday, February 14, 2010
By Deborah Kendrick

When my friend Christine was driving her sister to radiation treatments three times a week, she spent a lot of time waiting in a room with others experiencing serious illness either first- or second-hand. Week after week, she told me, there was a sort of game that was played out by some in the room, no matter who the current "waiters" happened to be.

"Top that woe," Christine called it, and I recognized it as an exchange we all sometimes fall prey to pursuing.

You know how it goes. One person has a tale to tell of an unsuspected skin cancer, so someone else tops that woe with a tale of breast cancer, and yet another tops that one with the horrible runaway train of disease.

At the other end of the spectrum are those who minimize personal disaster, seeing their own difficulties or suffering as always smaller somehow than someone else's.

Human nature is a funny thing. One parent finds a child's broken arm to be a calamity, while another deals almost routinely with frequent hospitalization for a fragile medical condition.

Dealing with disabilities is like that, too. One person breezes through quadriplegia -- "What? I broke my neck? Well, let's see, I'll have to figure out some new ways to get in and out of my house" -- while another is immobilized by a diagnosis of lactose intolerance. If you think about it, you'll know I'm not exaggerating much. We have all encountered such extremes in the handling of pain within ourselves or others.

At our worst, there is sometimes a sort of unspoken hierarchy of need in cross-disability gatherings. "Oh, well," say the wheelchair users, "no sign language interpreters. That's not a problem. A real problem is not having an accessible bathroom on every floor of a large building." Or, "What? You actually need a ramp to get in?" say the diabetics. "That's not as troubling as needing to test your blood sugar levels several times a day."

The reverse is just as often true, of course. I have seen wheelchair users place their own needs for physical access entirely aside, while protesting the absence of braille meeting materials or real-time captioning for their coworkers who are blind or deaf. And many people with sensory or developmental disabilities have marched, literally or figuratively, alongside their mobility-impaired compatriots to demand more accessible housing or transportation.

Primarily, the issue is one of perception: Each of us perceives difficulty in a unique way. I recently read a quote from the mom of a medically fragile child that puts it all in perspective. "Pain is pain," she said.

For me, that clarifies much. Which is worse -- losing your hearing as a baby or as a college student? Which is worse -- to need a bone-marrow transplant or a kidney transplant? Which is worse -- a broken leg or an amputated one? Or, to look at it another way: Which is worse -- the terrorist attacks on September 11 or the bombing of Hiroshima?

It doesn't matter. Pain is pain. Each person needs to deal with it in his or her own way, and to try to top that woe when it is your woe is irrelevant.

What I do know is that whether the world sees it as large or small, incorporating personal disability or difficulty into the general fabric of our lives makes it easier to recognize and relish pleasure.

Deborah Kendrick is a Cincinnati writer and advocate for people with disabilities.

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A Competition We Don't Want to Win

I got a lot of comments about my "My Disease" post on comparison-itis from June 2008. Lately I'm noticing a new kind of competition. Sometimes special needs parents compare abilities of their children and brag, boast, lament to position themselves as "worse off". Ugly, huh? I don't think this is deliberate or conscious. It starts harmless like, "We go to X hours of therapy a week." "We've been hospitalized 8 times this year." I've even noticed some angling when it comes to relationships with shared doctors. Implied is, "Our care is better."

I admit it's hard to keep "we" and "our" out of phrases when you discuss the health situation of your non-verbal, non-ambulatory child. You are him to some extent. When HE isn't doing well...WE aren't doing well. Shouldn't everyone know about OUR problems and how lucky YOU are you don't deal with this?

The reforming Cincinnati Mito Group cautioned we not let that attitude seep into the group, then I heard of this type of comparison permeating a particular Mito conference. One dad said it best, "Debating over whose child is worse off is a competition I don't want to win." Profound.

Yet, I've judged myself. I've responded to conversations about parents with Down Syndrome kids..."Lucky dogs." I'd love a precious child who can walk and talk, to whom we could connect better! With whom Luke could play.

Upon receiving an invite for a special families conference, I scoffed at the advertised keynotes from speakers with learning disabilities. "Errr, they are SPEAKERS, how bad is that disability?"

Forgive me for this thinking. I have repeatedly been reminded everyone is facing some sort of struggle visible or unseen. My family's situation should not be considered more or less difficult. It's just our family. I should be nothing less than grateful for the perspective our experience has given us on what truly matters. And comparison still does not matter.

I will note that having gone without a diagnosis for so long for Mitchell, I feel for the inappropriate situations when parents, especially moms, have been wrongly accused of having Muchausan by proxy syndrome. They are vocally advocating for their child's complex case without understanding. I can't imagine how hard not being believed or heard would be and would talk non-stop about how bad it is too in that case.

When I go to the bitter-side, I reflect...caring for Mitchell is not my identity. No more than Luke or Chris is or work is. My life is rich from those around me, but my worth...my self...is actualized through God, in whom I put my faith and through whom this situation is ordained. But if you push me to it, I might just find it cathartic to vent a bit about how hard being a special needs mom can be!

Superbowl Service 2010

Our church goes BIG for superbowl Sunday. Just a chance to have fun and invite friends to come along. Here's this year's look at the crowd and the mascots! http://www.crossroads.net/

Mitchie's Mito Explained

Where does mitochondrial disease come from? How does your body make energy? Why are the mitochondria important for life, diseases, and aging? Learn all about it in this 3D animation designed by students from the Center for Digital Imaging Arts at Boston University in cooperation with MitoAction.org. MitoAction is dedicated to outreach and support that helps people with mitochondrial disease NOW. Learn all about Mito at http://mitoaction.org/mito-faqs.

New Camera!

First photos taken and downloaded with our new camera (Nikon D3000) although we really still have no idea how to use it! One of each boy and hopefully you can tell the quality is better than before.

Updates

So many of you have asked about our lack of sleep so I wanted to give an update. We have figured out that Mitchell has been getting up because the medicine he takes is no longer controlling his seizures. He will have a blood test first thing tomorrow to check blood levels and by afternoon we'll have the doc's decision on whether we can give a higher dosage of his current medicine (Depakote) or add another seizure medication. I keep thinking...one more night! We hope.

Also today the process of transitioning to receive services from the county to our school district continued with a consultation with the city's elementary PT, OT and speech therapists. Mitchell put on a good show demonstrating some cause and effect skills. Early March we'll be presented with findings and a recommended IEP (Individualized Education Plan). I have my fingers crossed services offered will be ample!

Ninja Movie Action

I hadn't downloaded pictures from my old camera in awhile and just came across scenes of Luke at some friends' house playing dress up and making "movies". The boys kept telling me to tape them for "hours" or at least 15 minutes. As you can see, their jumping around didn't get them even close to that!

Doing Good Got Easier

This looked useful:
Free and Easy Volunteer Scheduling, Sign Ups and Reminders – DOING GOOD just got easier with VolunteerSpot

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!