Beautifully Unexpected

If I had a dollar for every time someone asked me that question I’d be very rich. My usual short answers are a nervous laugh followed by, “I don’t know” or on harder days, “Do I really have a choice?”. The real answer is much more complicated! I promise I don’t have super powers, I’ve just learned to prioritize and plan very strategically. I’ve compiled a list of things that make my life possible. Some things will seem trivial but these all play a part in the “how”.

• Condo living- I chose to buy a condo last year to eliminate outdoor maintenance. I don’t have the time to mess with mowing, painting shutters, shoveling snow, etc.
• Location- I can get to work, school, doctors/dentists appointments, family, children’s hospital and pretty much anything we need on a daily basis in under 20 minutes. This wasn’t easy during the buying process but I was determined to make it happen.
• Brady proofing- My home is so safe it’s stupid! Furniture is anchored, no indoor steps, safety locks on exterior doors and his room has an extra tall metal baby gate on it so I can do things like sleep and shower with peace of mind.
• Meal prepping- I don’t mean the fancy single serve containers with perfectly portioned meals. I mean I only cook 3-4 times a week and I cook like I’m feeding a family of 10 and then there’s leftovers kind of meal prepping.
• I order groceries online from the same place Brady’s prescriptions get filled.
• Amazon Prime- Enough said!
• Backpack purse- It keeps my hands free for keeping track of kids and it zips closed so nothing falls out. Bonus- It saves my back.
• My keys are on a lanyard around my neck during transitions to prevent losing them, fumbling with them and also keeps my hands free.
• Dry shampoo- I have a lot of long hair so washing/drying/styling is time consuming. I limit washing to 3x a week. Bonus- It keeps my hair healthy from less heat.
• Tinted moisturizer with spf- One step that I apply like lotion but acts as sun protection, makeup and moisturizer. Quick and easy and I look somewhat put together.
• Paper plates- Sorry earth but it helps and it could be worse, right?
• I’ve learned to say no and be ok with it- I cannot make it to everything.
• To-do lists- I write them at least 5 days a week.
• Support system- I am so blessed with some of the kindest, most loving family on the planet. They help with my kids, they give me tough love when needed and they’ve literally been there to pick me up off the floor during the hardest of times. I can also get to most of them in 20 minutes too!
• Self love- I’ve learned to listen to my body and heart. If I need extra sleep I go to sleep with the boys, If I need alone time I stay up and write, read or watch a show I’ve DVR’d.

These are just the main things that make current life possible and none of them alone would be worth talking about(well maybe the support system). Next year this list may be different and I can think of other things like co-parenting schedules and being flexible but thats a whole entry in itself. So no, I’m not a 1 woman show all the time. Hopefully this answers the question of, “How do I do it?”.

*Try making your own list, it’s kind of eye opening. While listening to Carrie Underwood’s song Champion. I did:)

As promised on Friday here’s the giveaway I’ve been talking about. I’m giving away a B.O.B. Revolution Flex!

This stroller got Brady through a difficult transition period. Two years ago he was close to growing out of typical strollers but couldn’t safely walk around in public places without riding in something or being carried and he was too big for me to carry for long periods of time. I contacted his pediatrician for a referral to get fitted for a wheel chair but he warned me it could take 4-6 months.

Long story short it ended up taking 13 months! I never imagined it would take that long. Insurance denied it three times and by the time we got it, it was too small to last 5 years (most insurances will only pay for a new wheel chair every 5 years) so we sent it back for the next size up. About 6 months into this process we had to find something and that’s when this B.O.B. Revolution was purchased. It was a life saver! The seat tilted back enough that his feet couldn’t get stuck in the wheels, it’s easy to maneuver and it has a weight limit up to 70lbs.

Since it was only used for a short period of time it’s in excellent condition and I’d love to bless another family with it. The way it’s going to work is you can submit your story or nominate someone else via email to beautifullyunexpected.hope@gmail.com. Submit stories by Sunday March 18th and I’ll announce the winner the next day. The winners story will be featured on the blog. Anyone is eligible! Maybe you’re on a weight loss journey and you have a bigger child that doesn’t keep up on your runs(this stroller is technically a running stroller) or maybe you have a situation similar to mine. Either way don’t count yourself out if you don’t have a child with special needs. If you’re local I will deliver and if not I’ll ship it to you.

When I started writing this entry it was called Mom Guilt. I then had a conversation with one of my best friends that made me think it should be Parent Guilt after hearing a story about her husband. Then as I was finishing the editing it dawned on me that it really all boils down to Fear.

As parents we feel guilty because we’re afraid of something. When we stay late at work or go out with friends we feel guilty that we aren’t at home with the kids because we fear they’ll miss us and possibly resent us at some point for not being home more. When we chose a school or church we question if we picked the right one for their needs. I could really go on and on because as we all know with parenting comes daily decision making. Whether you’re raising a child with special needs or a typically developing one we all have the same fears just on different levels over different things. It can be extremely overwhelming if we don’t seek some kind of comfort or outlet. For most of us it’s as simple as talking it out with someone we respect and feeling validated.

My parenting fears include not doing enough or being enough for my children and causing permanent damage that will affect them forever. My biggest fear with Brady is that I won’t always be able to take care of him on my own. Currently at just six years old he’s 4ft tall and almost 60lbs and I’m not going to lie it’s hard and I dig deep everyday but it’s worth it.

We all have personal fears as well. For me those are opening up and sharing in fear of criticism because I’m a natural people pleaser. It actually held me back from starting Beautifully Unexpected for about a year. I feared nobody would care what I had to say or maybe I would receive negative feedback.

Going back to my fear of sharing I’ve learned it’s the best medicine for overcoming whatever anxieties I have about life. Sometimes all we need is our closest friends or family to listen and give us comfort. Sometimes we need some tough love to give us a kick in the butt and tell us our fears are a far fetch and stop letting those thoughts crowd our head space.

The whole reason I started the blog was to help and inspire families with special needs kids. I never imagined it would be so therapeutic for myself as well as connecting me to so many amazing people I’ve met over the last month. With that being said I want to thank all of you for allowing me to face my fears and I want to invite you to do the same. Please share below in the comments or email me at beautifullyunexpected.hope@gmail.com.

I’d like to introduce my youngest Kameron aka Kam. He’s been a huge part of this journey for the last three and a half years. He is a typical 3 year old boy that’s almost always the comic relief, he can sweet talk me into just about anything and can throw an epic temper tantrum- sound familiar?

I don’t know first hand what it’s like growing up with a special needs sibling but watching my boys grow up together is nothing short of amazing. It’s incredible that a 3 year old can have such compassion for his older brother. Kam is constantly concerned about Brady. He asks me all the time, “is bubba ok?” or “does bubba need to go to the doctor?”. When Brady falls Kam is right there helping him up, he gives Brady bites of his food and talks for him when needed. Growing up with Brady has made him resilient, intuitive, empathetic and so much more. The best part about it is those qualities extend to other people. He holds doors at restaurants, smiles and waves at everyone anywhere we go and if he sees someone struggling he does his best to help.

As awesome as all of that is, it’s not all rainbows and butterflies. Kam has been injured due to Brady’s lack of impulse control, he spends way too much time in waiting rooms, his best friend can’t talk to him and in my opinion the worst one being the anxiety. He fears hospital stays because it really affects his life. Last time Brady was in the hospital was the most impactful. He was old enough to recognize something was really wrong. I was gone a lot, he couldn’t see Brady for almost two weeks (while in ICU) and he sensed the worry from everyone in the family. As you can imagine his world was turned upside down.

I do my best to ease his worries and make him feel special. Our daily schedule is packed with appointments for Brady so I like to take Kam on “dates” when it’s just us and he plays soccer one night a week. I’d love to hear your experience with raising typical children under the same roof as your special needs kiddos. How do you explain the differences between them in a way young children can understand? One of my biggest  challenges currently is potty training Kam when his big brother still wears a diaper. Comment below or email me at beautifullyunexpected.hope@gmail.com.

A glimpse into their sweet little friendship..

Since I started the blog I’ve had a few people ask me what Brady is like and what a regular days schedule would look like for him. I started writing down a typical day and it was filled with medicine schedules, doctor/therapy appointments, being confined to a wheelchair whenever we went anywhere to prevent falls, puking, bruise covered shins and it didn’t feel right. Even though all of that is true the truth is Brady loves life! He squeals and flaps his arms in excitement at the sight of a Hershey kiss or a new matchbox car. Not because he’s deprived of yummy treats and toys but because he appreciates the small things.

I say all the time I wish I could get into his head and live in his shoes for just one day. Regardless of everything he’s been through he’s the happiest person I know. There’s always a smile on his face and his belly laugh could make the hardest, angriest person light up like a Christmas tree. I know if I’ve had a bad day some uninterrupted quality time with him will make me forget about whatever frustrations the day has brought on.

The greatest part about this journey is Brady doesn’t think he’s different. He doesn’t have self esteem issues, he doesn’t see danger, skin color, religion or gender. He places no judgement, doesn’t complain and leads with love everyday. I wish I could be more like him. Could you imagine a world with more Bradys? How beautiful would that be?

I use to go through life rushing and never appreciated the little things but he has taught me to stop and smell the roses. I challenge you to be more like Brady. For one day lead with love in everything you do, don’t complain or judge and appreciate the small things. Share with me what that day is like for you. Personally it’s changed my life!

Here’s some pictures of his sheer joy..

Searching for answers

For the first year of Brady’s life the doctors just thought he was behind from being premature. His pediatrician reassured me it’s normal for premies to take till their first birthday to “catch up”. I began to think there was something wrong long before the doctors but I was 24, a first time mom and had zero experience or credibility so what did I know right? I knew that my baby wasn’t supposed to throw up 6 feet across the room every time he ate, I knew he wasn’t even close to meeting any milestones and I just knew he was different but how do you explain a gut feeling to a Dr.. At this point his only diagnoses were acid reflux, cataracts and torticollis. His one year check up came and the answer to every question was no, by far. He could barely sit up on his own, wasn’t making any eye contact and couldn’t tolerate any solid food. I could tell his Dr was worried but didn’t want me to know. We were referred to neurology, occupational therapy and physical therapy. Six months later with very little progress, I was scared.

I spent the next three years on a mission. I did endless amounts of research, took him to every specialist I could get him into, he was in 4 hours of therapy a week and started preschool on an individual education plan(IEP). He was misdiagnosed multiple times and I knew hundreds of things he didn’t have but felt no closer to an answer two years later. Now the symptoms were endless. Seizures, sleep apnea, anemia, microcephaly, unsteady gait, non-verbal, low muscle tone, sensory issues, anxiety, constipation, behavior problems, ezcema and a duplicated renal system. Why couldn’t anyone figure out what was wrong with my baby?

Finally in April of 2015 we saw a Dr that took interest in Brady. I could see the determination in her eyes, the same look I saw when I looked in the mirror, she wanted to help. I left teary eyed and hopeful. She sent us to human genetics for a micro array and it came back inconclusive. I felt defeated, I’d lost all confidence in the medical industry and with no real diagnosis insurance questioned everything. It was a nightmare!

We went back to see that same Dr a year later and she sent us back to human genetics for more in depth testing, something called a microcephaly panel. By the time we could get an appointment it was June 2016. The genetics Dr did another exam, took blood and said she’d call when the results were in but there was a 50/50 chance it would come back inconclusive and it would take 3-4 months.

October 31st 2016 is a day ill never forget. As I’m getting the boys ready for trick or treat I get the call. The call that I’d been waiting for, the call I thought I wanted for years. The nurse said, do you have 20 minutes? I of course said yes. She said we have an answer, Brady has DYRK1A syndrome. It’s a mutation of chromosome 22 and there’s less than 100 people in the world with this diagnosis. First diagnosed in 2008 and we know very little about the prognosis. My heart sank, I wanted to scream, cry and escape but it was halloween and my kids needed me to be strong. Despite feeling like I’d been punched in the stomach and given a life sentence I picked myself up, brushed myself off, hugged my kids a little tighter than normal and we had a great halloween. I never imagined the answer I wanted for so long would make me so scared. Something in me changed that day. That’s when I decided I wanted to help others in similar situations. At the time I didn’t know how but here I am..

My advice would be don’t give up but enjoy the good times along the way. Take care of yourself and don’t take no for an answer. For me, music is therapy and one of my favorite songs to listen to when I’m feeling defeated is Stand by Rascal Flatts. Find what works for you! If you know anyone going through anything similar send them my way.

Here’s some pictures from our journey..