I Want A Simple Life

I want a simple life

I want simple, yet I’d gladly take back my normal life

I want a simple life, where things move and operate smoothly. I expect hiccups along the way, yet I’m tired of being a living, walking, talking, breathing hiccup.

I want to put a plan together and see it executed with limited interruption. Fantasy world I suppose, yet I desire a simple life.

I want a partner to help carry the load. Well, in all honesty, I want to dump the load - not forever, just for a little while so I can catch my breath. 

I want a simple life where I can genuinely, in good spirits greet the birds and take in a deep breath of stifling hot Georgia July air.

I want a simple life where I can feed my child and not be concerned with cleaning up vomit or poop 30 minutes later.

I want a simple life where I don’t have to worry about my back locking up as I transfer said child from bed to chair and back again. 

I want a simple life where I can do laundry one, two days max, out of the week instead of every day.

I want a simple life where I can count on business people to do what they say they’re going to do and be men/women of integrity. And if there is a hiccup causing things to go awry, then to maintain communication and not assume I know what the problem is, when and how it’ll get fixed.

I want a simple life where people are kind and considerate of others. You know, where people will hold a door open for you. Or say please and thank you. Or wear a f*cking mask so they protect me from them and vice versa.

I want a simple life. I want world peace. I want people’s basic needs met - where there’s no worry for food, clean water, clothes or shelter.

I want a simple life where I can take my kid to the doctor and expect them to have the necessary equipment aka a wheelchair scale to weigh him. I understand it’s an expensive piece of equipment. I understand it’s inconvenient to find a place to store it. I also understand that he can’t walk or stand not because he doesn’t want to but because he can’t.

I want a simple life where different doesn’t mean less.

I want a simple life where everything I say isn’t rebutted or challenged.

I want a simple life and for my grief journey to be easy. 

I want a simple life; I’m tired of doing hard things. 

I want a simple life where I can just be.

I want a simple life, yet that’s never been in the cards for me.

I want my normal back - I will take doing all those above mentioned hard things without complaint.

My normal will enable me to live my life more simply.

Baby bird

Mom was fussing with enteral supply company earlier b/c people not doing their job impacts my life. She told the supervisor "help me help you help your employees so they can help my son live his best life." People don't know how to take her. People don't understand her. People don't get why she's so passionate and has a short fuse. People don't understand why she requires people be accountable for their actions or lack their of. People don't understand why she won't go with the flow since that's how things have always been done. People don't understand that them doing or not doing their job impacts my livelihood. People don't understand where we've been or what we've been through. People don't understand that their assumptions or oops can mean life or death for me. People don't understand that I'm a baby bird - dependent, not just on my mom yet them (you), for survival. I do what I can but my body prohibits independence. Please be patient and have a little grace for my mom or those like her when they seem to be in rare form or questioning the process or seemingly making your life/job hard b/c all they want to do is take care of their baby bird.

Another bird is building a nest in another porch plant. They must know our home is a safe place for their babies...

You’re, that, this is…retarded.

What do you REALLY mean? I had a hallway encounter and shared it on my personal FB page, yet its well worth and deserving of a blog. So here it is: "The things people say and step in so you don’t have to: 3 characters doctor, nurse, me D: that's retarded (speaking of a process or something) M: don’t say retarded, there’s a different word you can use D: okay, intellectually disabled M: um, ok but that’s not any better for what you're trying to explain N: she has a son with disabilities and that’s offensive D: I didn’t mean it like that...I usually offend someone some kind of way M: I’m not offended. Just trying to help you out for future encounters...

Retarded isn't (well it wasn't supposed to be) a bad word YET the way people use it is what makes it bad, negative and derogatory. I have a child that is retarded = slow, behind his peers- intellectually and physically impaired and I'm okay with that because I don't define him by the disabilities and what he can't do. Words matter and we define success for ourselves!"

My wonderful and beautiful friend Helen reposted and added to it in an effort to help educate others. Here’s what she added: #1 if you use the "R" word, read on. And stop immediately #2 the fact that we need to teach doctors "compassion" in school in order to avoid saying these things is more than frustrating #3 This is a gleaming example of why I <3 Naomi Williams and all she is as a parent and advocate for her child and others with disabilities. #4 We're riding in August to prove that his "disabilities" don't limit the scope of the AWESOME Noah can achieve.

So what does one mean when they use the word retarded? If it’s not meant in a negative way how should one interpret it? Know this; we can choose our words, my child and others like him didn’t choose to be retarded.

It was a beautiful day and we went to Noah’s favorite spot which made EVERYTHING perfect in my world in that moment. *This is a previous video. I opted to leave my phone in the van and just enjoy Noah and the elements  but his reaction was the same as what you see here.*

[video width="224" height="400" mp4="http://exceptionalliving101.org/wp-content/uploads/2018/04/Noah-swing-2017.mp4"][/video]

If you’d like to be a part and help Noah and Helen on their Great Colorado Bike Adventure spreading awareness of what inclusion looks like while raising funds for others via the Kyle Pease Foundation go here https://kyle-pease-foundation-inc.networkforgood.com/projects/50559-helen-gardner-s-fundraiser . Your donation is 100% tax deductible and very much appreciated!

There ARE still good people in the world

Another typical Sunday full of our usual activities, church, laundry, house chores, a long run and whatever else we can find to get into that I have enough energy to do. We were out with the goal to complete 8 miles. We are preparing for our fourth Publix half marathon in March and a year off really doesn’t do this body good, especially when handling over 300 pounds between me, Noah and his wheelchair. The first couple of miles sucked as they usually do for me. The positive was the weather was just right with a nice breeze blowing. In true Naomi fashion, I “heard” the weather forecast but I didn’t really “check” it before we left for our run. This particular day I opted for an out and back route with some varying grades of hills. I finally hit my

stride, settled into a comfortable pace and Noah was in his happy place – asleep. Fifty feet from my turnaround point I see the clouds quickly rolling towards us. We’re stopped at the traffic light, waiting for the walk signal so we can cross and head back to the van, when the sky begins to release a light rain. As we’re waiting to cross the street a couple of guys in a pickup truck delivering pine straw offered to give us a ride. I respectfully declined; albeit I wasn’t prepared, this wasn’t our first time running in the rain.  Not the ideal situation, but we could manage in this kind of rain to get back to the van. As we crossed the street the sky opened up some more releasing an onslaught of water. I began to regret that ride I had just declined. We barrel down the hill, getting pelted in the face by heavy rain drops only to get stopped at the next traffic light as the crossing signal wasn’t in our favor. Yet it was here we met our next Good Samaritan. A young woman offered me an umbrella in hopes to give a bit of a reprieve from the storm. Noah and I get across the street safely, I opened the umbrella and the wind viciously snatched it causing it to turn inside out. Add insult to injury when the wind flipped the umbrella it snapped all of the spokes so it was literally useless. All I could do was laugh; Noah wasn’t amused.

As we approached a gas station to take refuge a small SUV stopped and the passenger asked if we needed a ride. As much as I wanted to say yes I declined as there was no way to get Noah, me AND his wheelchair in this vehicle. Again, it wasn’t an ideal situation; I know Noah was miserable yet not complaining and we only had 3 miles back to the van (I say that last part seriously yet sarcastically). The woman offered me her umbrella, graciously took the broken one I had in my hand and went on her way. Noah and I made our way over to the gas pumps to take shelter and think of a new game plan. I considered calling friends to see who could rescue us, but figured by the time they got to us I could have us back to the van (I’m working to be more patient). With umbrella in one hand positioned like a sword, wheelchair in the other we set out to conquer the final 3 miles laced with intermittent hills. Just as we got to the base of the next incline I see a woman running towards me – she offers us a ride and I gladly accept despite the logistics.

I can’t remember the last time, or if I’ve ever, accepted a ride from a stranger. I can definitely say I haven’t since I’ve had Noah – even at my age I’m a firm believer in stranger danger J. I get Noah in the backseat, kindly asking her son Beau, to hold Noah’s arm so he doesn’t tip over or fall out of the car (um…crazy lady, with kid in a wheelchair, and neither of them look like me and you want me to do WHAT??). He didn’t say this but he did look a bit shocked. Knowing her son and the odd situation, his mom, Pam, stood in the doorway and helped hold Noah as I finagled getting the wheelchair in the back of their SUV. This moment made me extremely thankful for our van, the Noah Mobile. This was the first time I had to lift this wheelchair or lift a wheelchair period in over a year; it wasn’t easy (80+ pounds is very different from 60lbs) yet I got it done. As odd as it was, catching that ride resulted in the best two miles I’ve experienced in a long time. We all learned that we had more in common than not. Our kids were of similar age, had birthdays close to each other, shared some hobbies, etc. Pam and the other drivers that showed various acts of kindness helped restore my belief that there are still good people in the world.

Enjoy this song I found fitting (I don't own rights to this music).

[embed]https://youtu.be/liqktLC7xR0[/embed]

Recalculating...

January 4, 2018 Recalculating…from FML to PTL

Smart phones, GPS and advances in technology have drastically changed how many of us navigate through life. The device, the service provider, up

dates, enough memory, etc. determines how accurate and useful your GPS will be. I like the convenience of getting real time, turn by turn directions, yet I’m a bit old school and unconventional in I like printed directions; I like landmarks, I like knowing how to read a map, and I like knowing which highways connect so I can efficiently reach my destination. If you’ve ever ridden with me, and I was the navigator, you know NOT to do that again! ☺ Seriously, for those that have taken road trips with me using my phone for directions know that we’ll get to our destination eventually and most likely via the scenic route. For whatever reason, my phone wouldn’t give any warning of the next direction or turn until we were right up on it and it was usually after we passed where we needed to go prompting the “Recalculating…recalculating, go 100 miles and make a U-turn.” I’m exaggerating with distance, but you get the point.

As I said goodbye to 2017, I struggled and halfheartedly welcomed 2018. I was happy to be with my family friends, yet this was the first year I wouldn’t be calling my dad at midnight wishing him a happy new year. I knew at the stroke of midnight that my son would no longer have any insurance coverage. I knew that despite my knowledge and years of anticipating this moment, 2018 was greeting me with a host of new challenges and thrusting me into new territory with limited and convoluted directions. I found myself wanting to say FML (F*ck My Life) yet requiring me to say PTL (Praise the Lord). Recalculating and redirecting my thinking is what will get my son and I to each destination. I constantly have to remind myself that everything will work out and the experience(s) will make me better, provided I don’t allow bitterness to take root. Reminding myself not to focus on the problem, yet work towards a solution and keep an attitude of gratitude (Matthew 14:13-21). This is much easier said than done, yet as I continue to practice it a habit is forming.  

Life doesn’t always take us the shortest or easiest route. I challenge you (and me) to find or recognize joy through the journey when traversing rugged terrain to the destination.

We (You) DID IT!

WE (YOU) DID IT!!!!!! One of the few times in my life – I’m SPEECHLESS! Pearl, the Noah Mobile has found its forever home! THANK YOU just doesn’t seem a good enough response to give to all of you that helped make this dream a reality! If I could give each of you a hug know I definitely would. If you bought a carwash gift card, donut gift certificate, a Boston butt, came to Zumba with us, supported the yard sale, made a cash donation or donated via the Kyle Pease Foundation, Crowdrise pages, Special Kids Foundation, Grandma’s House (Sherry Trivett Neal) or during the Ravens football game, bought a ‘Villager’ shirt, sent an encouraging work, shared our pages and posts, or said a prayer your love and support is greatly appreciated!

The van is everything we needed and everything that I wanted (look at God – John 10:10)! It’s rear entry, manual ramp – so Noah is never stuck, has two captain seats so friends can sit next to him, 3^rd row seat and ability to have another wheelchair user ride with us!! There are a few other ‘perk’ things but I won’t bore you with those details. Noah will now be able to stay active when school is out and we’ll both be able to remain active members of our community!

I hope you all know that I could NOT have done this without you! The fact that Noah has an adapted van is a miracle in itself. The fact that it’s PAID IN FULL just blows my mind! This has been a short yet long 20 month journey. A special thanks to Christina, Ali and Robin for being the brains and backbone of this adventure. To Kim who helped me get over myself, work through my resistance and ask for help.

Love and blessings to you all! Details of the van party coming soon...

Why did God make Noah different

W2KW “Why did God make Noah different?” –Trus H.

Kids have questions…LOTS of questions! And as parents, they expect us to have ALL the answers. Over the years and especially now since I’ve started this blog, I ask my friends what questions they and more so what questions their children have about Noah. Here is a question that his friend, Trus, asked his mom.

[video width="240" height="320" mp4="http://exceptionalliving101.org/wp-content/uploads/2016/12/Trus-W2KW-ques.mp4"][/video]

When you’re out and your child loudly asks those embarrassing questions “Why do they look like that?” “Why do she talk like that?” “What happened him?” Don’t ‘shhhhsh’ them and hurriedly walk in the other direction. Most likely the family has heard you. It’s okay to say “I don’t know, but let’s say hi and ask him/her or their mom/dad together.”

I don’t always have good answers because I have questions myself. Yet, I much prefer have the questions asked so you and your child will know they don’t have to be afraid of a person with a disability. That you/they can’t ‘catch’ the disability; to learn how to be kind, loving, accepting, helpful, protecting and friendly to those that aren’t like them.

Here is his mom’s response.

[video width="240" height="320" mp4="http://exceptionalliving101.org/wp-content/uploads/2016/12/W2KW_Answer.mp4"][/video]

I’m thankful for my village as I’m always learning from my family and friends just as they learn from me. I love it when we’re out with family/friends and they jump in to answer questions for me!

Give Thanks

There have been times when I thought God made a mistake when He gave Noah me and me Noah. There are days I think He overestimated what strength I have and my abilities to do, function, be effective and cope. And then I step back, reflect and realize that He provides everything that we need and I have to and want to Give Thanks. I really struggled with writing this post knowing the loss and the struggles that several friends are enduring at this time. Yet I know just as I sit or grieve with them they celebrate with me. It’s a part of doing life together, near and far. We’ve been on a journey to get a wheelchair accessible van dubbed the Noah Mobile, to ensure Noah remains an active member in our community. I’m always looking for grants and alternate means to offset the costs of his adapted equipment. I find one grant, apply and get denied. I find another grant, apply but have to wait until later. I find others and learn you don’t have the right diagnosis, or learn we don’t live in the right county, city, state, or region. The list goes on and on, BUT I didn’t give up. On a long shot I applied for the Jake Vinson Family Grant through The Kyle Pease Foundation. I asked for an obscene (in my mind) amount of money; all which would go towards the Noah Mobile. Months went by and I heard nothing. “Oh well, I guess we weren’t selected. Let me see what other options we have” was my thought. I received a phone call early Fall from one of the board members and it ended up being an interview, part of the grant selection process. More time went by and nothing. Again, “Oh well, I guess we weren’t selected. Let me see what other options we have” was my thought.

Turning dreams into reality. On November 20, 2016 Noah was awarded The Jake Vinson Family Grant from The Kyle Pease Foundation, along with one other athlete, Sherry. I’m beyond grateful and thankful that Noah was selected this year. We’ve been working feverishly to get him the right wheelchair accessible van and although he wasn’t awarded the obscene amount that I requested the award amount puts us on the home stretch to getting the Noah Mobile– we can see the Finish Line! As thankful as I am for the award I’m more thankful for the relationships-friendships that have been born from this connection. Jake Vinson and his mom, Amy, hold a special place in my heart (and I finally met his dad and brother, Noah).

In 2013 I had the pleasure of meeting half of the Vinson family, Amy and Jake, during the Lucky 5k a race part of the Publix Marathon in Atlanta, Ga. For those who’ve never had the privilege (or desire) to run in or around the Atlanta area, just know it is VERY hilly. For those who know me know I LOATHE hills. Noah and I met Jake and Amy on one of those Atlanta hills…me yelling all the way up it. Yes, I make quite the first impression! We finished our respective races, formerly introduced ourselves and hoped to meet again in the near future. Our kids never said a word, yet there was an instant connection for me because here was a mom, like me, exposing her son to this big beautiful world, sharing her love of running and the outdoors and most importantly creating memories. October 2, 2014 Jake Vinson gained his wings. I’ve shared with Amy there are many of runs and races that Jake helps me get up hills – when I’m struggling, I think of him and won’t quit!

Life is hard. Life is messy. Add a disability to it and the difficulty and mess is magnified. YET I wouldn’t trade them for the world because we have met the most amazing people and made an awesome support/cheerleading/do life together team! So no matter where you are or what is happening in your life Give Thanks (for what you had, have, will have).

Now get ready as the Noah Mobile will be rolling to a city near you soon, debuting 2017!

My name is Noah

If Noah could talk, I would coach him to say:

“I'm not my DOB. I'm not my MRN. I'm not my SS#. And just in case you were wondering, I'm not my insurance number. I am a patient, yet that’s not my name either. I am a customer and even a client, but neither of those are my name. I'm a person; a person with a name. My name is Noah. My name is attached to every single item listed above, yet you refuse to recognize or acknowledge me by my name. Why is that? I understand that this is your job and you have a job to do. I understand that in order to access my records, notes or pertinent information you need my DOB, MRN or insurance number.  But here's what I need you to understand I'm a PERSON, not a piece of paper nor a number attached to a piece of paper. My life depends on you doing your job. I understand that you go to work to get a check. I understand that you may not value my life or the quality of it and that's okay. What's not okay is for you to hinder or withhold things that my very existence depends on. I don't need you to be vested in my future or even care what I make of my life. What I do need you to do is stop looking at me as a number or the next piece of paper. Shuffling me from person to person and constantly passing the buck. I need, my mom will require, you to recognize that you're working with a person, and my name is Noah.”

Unfortunately, I have to have these conversations way more than I should with insurance providers, businesses, and agencies that provide Noah with his necessary supplies. This particular conversation dealt with communication, or lack thereof, regarding feeding supplies.   It’s infuriating, disheartening and mentally exhausting to constantly deal with people who don’t understand the severity and impact of their role on the families they are there to serve. My takeaways from these sorts of interactions:

1. Keep a record of interactions with the various agencies/businesses. Include date, name of person speaking with, call back number, time of day and summary of conversation with any AI-action items to follow-up on.
2. Ask questions and then ask more questions! I will usually say “help me understand how this process works.” Asking this way keeps me focused, without accusing anyone of wrongdoing, I get a timeline for processing the order and it truly lets me know what all is involved when I place his order.
3. If the customer service representative can’t help, ALWAYS ask for a manager or supervisor. I don’t like repeating myself. If I’ve called previously and the issue still hasn’t been resolved when I call back I’m not going to waste my time talking to someone who doesn’t have the ability/authority to adequately fix the issue.
4. Follow up as necessary. Some people forget what they say and commit to, i.e. calling back on a certain day to give an update. It’ll be more work on your part but it’s well worth it!
5. Apologize and thank.I will apologize if my tone was sharp and I was being short when reaching a solution that isn’t easy and takes F.O.R.E.V.E.R! I’m never rude, yet I know how to be assertive. Thank the representative for taking the time to let you vent and for assisting you in resolving said issue.

Glossary: DOB = Date of Birth MRN = Medical Record Number SS# = Social Security Number

Want to Know Wednesday: What will you do when Noah gets bigger?

Want to Know Wednesday: What will you do when Noah gets bigger?

I've been getting this question since Noah was two years old. My response now is the same as it was then, “I don’t know. I will cross that bridge when I get there.” Okay truth, my real response is “Marry a man with a good and strong back!” The time has come for me to cross that bridge, yet I feel as though I have to build it and I don’t have the materials. I usually find myself thinking two, five, fifteen years down the road while at the same time tackling the conundrum of the present moment. Yet, with this situation, I find myself ‘stuck’ with no real plan or answer to the problem.

Just this week, I found myself crying because I couldn’t pick kiddo up on the first try because he shifted to an awkward position as I began to stand up. Granted, my hormones might be playing tricks on me, but it’s just another dose of reality smacking me in the face. I have constant concern about carrying and transferring him whether from house to car, wheelchair to car, car to house and beyond. Noah likes to stretch and explore when he gets picked up. I’m so thankful for that ability and his interest to do so, just not when walking with him. So as we continue on the journey for Noah to be and become as independent as possible while having the best quality of life, I have to learn how to continue making that a safe journey for myself and his caregivers.

I look to my friends who have kids older and heavier than Noah for tips and advice of how to do this. The common theme and response is “You do what you have to do. You just do it.”

So my current game plan is:

• Continue to pray and trust God knowing that He will provide all that we need (2 Corinthians 9:8)
• Continue to strengthen my core and wear a back brace (sexy)
• Work with Noah’s physical therapist on safe lifting/transferring/carrying tips
• Really move to a one level home this next year (I’ve been ‘planning’ to move for a few years)
• Explore the various options for a lift

  

Want to know Wednesday: What can people do to help you when out with Noah

Want to Know Wednesday – What can someone do to help you when you are out with Noah? Oh, this is a GREAT question. Every family may answer differently and I will say it’s not always easy to accept help so bear with me! Here are the things that I find most helpful:

• Ask – what can I do to help you?

Depending on where we are and what we are doing depends on what kind of assistance we need. Sometimes I need help moving or readjusting Noah. Sometimes I need him distracted . Some days I just need someone to interact with!

• Wheelchair Help

Loading and unloading the wheelchair is necessary, yet a labor of love! For our family I need help with Noah’s wheelchair. That thing weighs 28kg or 62 pounds! Lifting it several times a day builds great arms, yet takes a toll on the back regardless of how much I lift with my legs.

• Hold the door open

This sounds simple but you’d be surprised how often people are so enamored by our awesome looks and my amazing balancing and juggling skills that all courtesy and common sense goes away!

• Help us normalize having a disability!

We live a normal life, our normal. It’s a NORMAL life yet not TYPICAL. Although we’re not typical, we like to do typical things and we do; we just adapt how we do it!

• Be open and willing to learn!

There are NO expectations for anyone to become an expert. Shoot, I’m still learning as we all are! Kids don’t come with a handbook; it’s all on the job training. Acknowledge the differences and accentuate the similarities. Be willing to learn about the disability and how we adapt. More importantly, be open to learning how to best interact with us.

Want to Know Wednesday: What's Wrong with Him?

Want to Know Wednesday: Hoping this will be the start of a weekly win-win! I get asked questions about Noah and his condition as well as many other things under the sun all the time. I don’t always know how to answer the question(s), or even feel like answering them if I’m being completely honest, BUT I’ve realized the more that people understand Noah they won’t fear him ultimately being kind to and befriending him. I need your help to make this, Want to Know Wednesday, successful. What burning or random question(s) have you had concerning Noah or his condition(s) (seizures, vision, g-tube, cognition, building support system, etc.)? If you don’t feel comfortable asking in an open forum, feel free to email or message me. I’ll start it off with a question that I get almost daily, “What happened to him?” or “What’s wrong with him?”

Those who know me know my initial response is something like this, “Nothing. Nothing is wrong with him. His wheelchair acts as his legs since they don’t work well right now.” The medical side of it is Noah was deprived of oxygen before birth and sustained additional brain damage after birth due to a severe brain bleed both playing part to an end result of CP (cerebral palsy). Cerebral palsy is one of the most common childhood disorders existing at birth (congenital) and affects movement, muscle tone and/or posture. There are different types of CP and various levels (degrees) of impact on the body. Noah is considered to have spastic quadriplegia, meaning he has a lot of stiffness (tone) and difficulty moving - controlling movements of his arms and legs. If you’ve been around him for any amount of time you’ll notice an arm will tend to ‘flail’.  It is difficult for him to isolate muscles to make a movement, thus more muscles are activated than necessary to achieve his desired motion. It’s not impossible to isolate the muscles, just very very difficult. Therapy (physical and occupational) and medication are the primary ways we work to overcome (treat) the effects of CP. Introducing Noah to yoga has also done wonders by heightening his body awareness (proprioception) and untapped abilities.

I CRINGE when I hear reporters and others say “they SUFFER from cerebral palsy.” Yes, there are challenges that come along with this diagnosis. However, life isn’t over. The way daily living, educational and recreational activities are done may not be conventional, yet there’s a way they can be adapted and accomplished. My ultimate goal is to help Noah achieve his highest level of independence, whatever that looks like. I hope a byproduct of working towards that goal will be teaching others how to see and unlock the potential in him and others who are differently-abled.

Again, CP affects people differently resulting in different treatment options that include but aren’t limited to special equipment, therapy, medication and surgery. Cerebral palsy doesn’t get worse with time and there is no cure.  I’m a fan of the website Kidshealth.org as the content and explanations given on various conditions are very user friendly. For more information on cerebral palsy visit http://kidshealth.org/en/parents/cerebral-palsy.html

* Post content and discussions should not be taken as giving medical advice. I’m a health educator, not a medical professional. Information given for educational purposes only and is specific to my personal experiences. Consult your physician if you have specific medical related questions.

How yoga saved his life

(9/2/16) 3:58am the moment I realized I'll never have a typical life. I hear a strange noise. I'm dreaming. I hear the strange noise again. The theme of my dream shifts. I hear the noise again but it's louder this time. Is it my dream? The noise doesn't fit. What could it be? Very groggy and dazed I slowly awake. I hear the noise. It's a weird noise. Is that Noah? What silliness is he up to now (I begin to roll over and commence with my dream). Wait, check the monitor and see what he's doing. Why is he face down? Why does he sound like that? Oh my God he's stuck on his stomach and trying to breathe! "Hold on Noah, I'm coming" I yelled. My legs can't move fast enough.  No seriously, they can't as I'm still sore from a run earlier in the week and going down each step was a reminder of pushing him up that dreadful Jackson Rd hill.

I make it to his bedside. His head is thrashing side to side, yet never lifting up where he can catch a hint of air. He's trying so hard to move his head and breathe. I release the railing of the bed. Grab arm and shoulder and roll. He begins to gasp for air. If he could have sucked up all the air from the rooms downstairs he would have and sure looked as if he were trying! Oh, wait he's beginning to hyperventilate. His body is super hot; he's breathing way too fast, crap how do I fix this. "Ok Noah, let's breathe. Breathe with mommy. Just like we do in yoga, inhale...exhale...take nice deep breaths". Saying those words with a calm voice and demonstrating the actions without panic as he repeatedly grasped my finger was no easy feat, yet beneficial and integral for both of us. Forehead to forehead, nose to nose we breathe together as if we are one. He's calmed. He now has on clean underoos.  He's safely  situated. I take back my fingers.  It's 3:55am, let's go back to sleep. We can get two more hours in before we have to be up and getting started with our day. Each time I moved away his breathing became rapid and coarse and the body temp that was coming down began to shoot back up. "You're ok. You're safe. Breathe, just breathe with mommy." I tried to leave again and his breathing was getting erratic. "Awe man, no seizures.  Ok, I will come lay with you." You do what you have to do, right? That includes squeezing into a twin size hospital bed with a young boy who likes his space. Much to my surprise he wanted to cuddle and did just that. Much to my chagrin, it was only an hour later before a fist was jabbing my ribs and an elbow firmly pressed against my throat, all signs he wanted his space back.

It's 6am, time to get up and get our day started.

It was this night, well, early morning, that I truly confronted the fact that despite my efforts I will never have a typical experience in life. I reminded myself moments like this are the exact reason I'm determined to live out loud. Providing a life full of experiences, not sweating the small stuff, having an attitude of gratitude and thankful for EVERY day we have together.

Fullest Expression of Me

 

I am kind. I am fearless. I am loveable. I am true to myself and others. I value others’ opinions, but their opinion isn’t my truth. I acknowledge my fears yet don’t buy into them or allow them to dictate my life. I know I’m fearfully and wonderfully made. I embrace and value my uniqueness. I am strong, yet know it’s ok and natural to be weak at times. I am independent yet know it’s ok and natural to depend on others. I am responsible yet also carefree. I am friendly yet cautious with my trust and vulnerabilities. I am a lover of people. I am optimistic (usually) and able to find a positive in any situation. I am perfectly imperfect. I love me, ALL of me for who I am and how I am. I define my worth. I define my beauty and what’s beautiful to me. I am a great friend. I strive to be a better person every day. I am adventurous. I try to learn something new every day. I embrace people where they are and for who they are. I am an advocate for the perceived underdog. I focus on the strengths and not weaknesses of others – I am actively working on this for myself. I am tenacious yet kind. I am assertive yet respectful. I am confident not conceited. I am talented, thinking beyond the box. I am a big dreamer and hard worker. I am a loving, caring, badass mom.

Writing that was WORK! Not bad work, yet my homework. I’ve been the best at criticizing and critiquing me, analyzing and highlighting all my faults yet very seldom if at all cutting myself slack or acknowledging just how awesome I really am ☺. Seriously, the above came from months working my way out of a bad head space. It came from looking at Naomi, respecting what she does and loving who she is. ALL of her: awkward, quirky, sassy, eccentric, smart, gullible, natural self! The Fullest Expression on Me is my reminder to tell myself the truth. Not to buy into the lies that I often tell me. Living in my truth keeps me grounded and moving forward not getting paralyzed in striving for an unattainable, unnatural and unrealistic level of perfection. As I strive to be the best version of myself; I’m able to help my son do the same as we do some Exceptional Living along this journey we call life!

May you continue to love yourself, live in your truth and learn to be great!

Dream Team

Originally appeared in the Augusta Medical Examiner August 17, 2012 Watching the Olympics this year just did something to me. I stayed up way past my bedtime, I was yelling at the television rooting the teams on (as if they could hear me and that would cause them to go faster), and I was a tad emotional during some of the award ceremonies. I was overwhelmed with the stories of trials, triumph and victory, and more so in awe of the team camaraderie

Have you ever heard of the Dream Team? If a sports fan I’m sure you have and if you’re an Olympics watcher it would have been hard to miss hearing it this year. Whether you refer to the 1992 Jordan, Johnson, and Bird basketball team or the most recent 2012 Bryant, Wade, Durant team there were many dream teams, in my eyes, highlighted during the Olympics. Starting with the U.S. men’s 4x100 swimming relay, the dynamic volleyball duo of Misty May-Treanor and Kerri Walsh, the women’s 4x100 track team and not to leave out the Fab 5 gymnastic team and the women’s soccer team, there is an endless amount of inspiration, admiration, hard work, victories and personal bests enveloped within these select groups. They train hard and push themselves beyond what they think is possible for them. They keep their eye on the prize and work to be the best in what they do.

I’ve been inspired, again, to recruit and build a ‘dream team’ for my child. Now I’m not trying to get him to the Olympics (just yet), but wanting to have the right players on our team to take him to his best. We already have myriad of physician specialists, an awesome pharmacist, therapists, family and friends who are all part of our team and involved in routine care, yet I want to expand and refine it. Not everyone on our team has the vision, desire, work ethic or belief to reach the goals set. With that knowledge, I know the importance of recruiting not only those who are good at what they do but those who embrace our vision.

As I work to mold our ‘dream team’ these a some of the characteristics of a  ‘dream team’ player that I look for: (1) embrace the concept of ‘No I in TEAM (2) Trust and listen to the coach (3) Trust teammates (4) Think outside the box (5) Open communication.

As we enter into a new season and kids are going back to school, you may consider building your own dream team. Whether looking to go back to school, change careers, venture to into a business, reach a new fitness level or to help your child reach their full potential it’s helpful to have like-minded people with you along the way. Know that everyone will not believe in your dreams and goals and that’s okay. Alienation isn’t always necessary, yet aligning oneself with those who can provide guidance, encouragement, and constructive criticism is vital to staying the course and reaching the goal.

Remember, Rome wasn’t built in a day nor was it built by one person. Map out the course, set the pace, brace for bumps in the road, and work with the team to git ‘er done!

Honey to handle sh*t

I don’t comprehend it and I probably NEVER will, yet I’m learning to embrace it, TRUST Him, and carry on living a full, on purpose life. The chorus of this song so challenges me and my thinking requiring me to dig deep and press into the Word not relying on my own understanding. A couple of years ago Noah was making such progress and I was on a mission to reduce the number of specialists that he had to see. We were successful…for a little while…and now we have added a few of the old specialists back and have even added one or two new ones to the list. As I was beginning to pout and complain I quickly caught myself and redirected my thoughts to I’d rather have more doctors added to the care team, than to have no Noah. It may sound odd to outsiders but taking care of Noah is the simple and dare I say ‘easy’ part. Don’t get me wrong it is a lot of work caring for him, but it’s pleasant and we have TONS of fun. The hardest part, for me, is having to deal with ALL of the people and stuff. Constantly having to learn new people and systems. Knowing what questions to ask to get the proper answers needed, yet not knowing what to ask, because you’ve never been in the situation before all while keeping my cool, a pleasant voice and smile on my face. I continue to pray for GRACE when I speak and that I have a SILO continually filled with honey as a VAT isn’t big enough to handle all the sh*t!!  www.youtube.com/embed/XQan9L3yXjc“

New Beginnings

Today truly is a Brand New Day and the start to wonderful new beginnings! I’ve started this blog to capture the fun, wild, wacky and those completely ordinary adventures that I have with my exceptional son. Society says ‘special needs’ and Noah does have many special needs, yet there are things that he can do and that’s what I tend to focus on. I seriously doubt I will ever use the term disabled or ‘specail needs’ to describe any child in my blog. I will say differently-abled because the things that they can do are often do in a different manner. I’d also like to remind you that our children are ‘normal’, they are very normal; they just aren’t typical!

My goal is three-fold: (1) chronicle the trials and triumphs of raising a differently-abled child (2) capture our adventures of traveling, training for races and whatever else we find to get into (3) to empower and educate others to embrace those who are differently-abled.

I’m excited about and looking forward to this journey. Messages and encouraging words welcome!