April 28, 2016

National Superhero Day: My Hero, Mackenzie

Did you know? Today is National Superhero Day!

While this day was created to encourage people to become heroes in their community, which of course is awesome, I can only think about my own superhero:

Mighty Mackenzie

She's got the whole world in her hands

Since being faced with her initial diagnosis of hemimegalencephaly back in September, we have gone through what I look at as similar to the grieving process. Grieving that our daughter didn't match what a "perfect" or "normal" child is. Grieving that she may not have the life we envisioned for her those 9 months I carried her in my tummy. Grieving what it means for our family - that we may not be able to do the things "normal" families do.

But yes, overall it was the 5 stages of grief.

1. Denial and disbelief. How can this be happening?
2. Anger. WHY her? WHY us?
3. Bargaining. This was my fault. I should have stopped taking that med sooner. We should have seen something in her ultrasound.
4. Depression. For months I was sad. Mourning the loss of a so-called perfect child with the perfect life. Every photo and story of normal babies were heartbreaking.
5. Acceptance. At the end of the tunnel there was acceptance and an overwhelming love in a way that I never knew existed.

The biggest part of acceptance comes perseverance. We will never stop fighting for her. Advocating for her. Giving her the best shot at having the best life possible.

Let me tell you why she is my hero. This little girl never ceases to amaze me. With every goal that we set for her, she continues to kick ass through it. Despite the limitations that her brain is supposedly causing, she is breaking through her developmental milestones. She is constantly being poked and prodded. She has to endure blood tests, ultrasounds and skin biopsies. Yet she takes it all like a champ.

With the help of physical therapists and orthotics, she can run. RUN! My daughter can run!

With the help of speech therapy my daughter is starting to talk and communicate more than ever. Just the other day, she smiled and looked her daddy and said, "Dada."

She dances.

She laughs.

She gives kisses and hugs to everyone she sees.

But more than anything her smile lights the world. Everyone should live life like Mackenzie does. She is a blessing and my hero every single day.

February 17, 2016

Where to Begin?

I know it has been a while my friends.

Since I posted back in September, when we found out about Mackenzie's condition, I have run the gamut of emotions.

Confusion. Sadness. Anger. Depression. Helplessness. Desperation. Guilt. Fear.

I could probably come up with about a hundred more.

Around the new year, I came to an important realization: this is my reality. I can sit back and feel sorry for myself and wallow in "why me's" but that won't really do anyone any good.

It was time to find ME again. The strong me. The positive me.

I wish I had more to share about our sweet and Mighty Mackenzie. We are proud to announce that she finally started walking just a couple weeks shy of her 2nd birthday and are now heavily focused on speech. Even though she isn't able to speak many words, she fully understands us. We still don't have a finalized diagnosis on her condition - just bit and pieces - all of which we are treating individually. To say that it is frustrating not to have answers is an understatement. There are a lot of assumptions, but nothing that is definite. We ache to have some kind of understanding about the kind of life she is going to have. Jackson is envious of the attention that we have to give her and that has caused stress.

Yet, there is one constant: love. This little girl is loved like no other. Despite the mounting tests, therapy, poking, prodding and monitoring she continues to be just the happiest little person you will ever meet. I've said it before - her smile is the answer to world peace. While my heart aches in so many ways, it is impossible not to be overpowered by the amazing spirit this child brings to the world.

As abnormal as her world is, you would never know it by watching her. We want to pop the bubble we have put up around her and our family to do everything possible to be normal in a very abnormal situation. What we really want is to be the family we dreamed we could be. Maybe it doesn't look like we thought it would, but it still has the two key ingredients: love and faith. Neither of which we can live without at this point in our lives.

Inspired by my amazing daughter I created a playlist for her on Spotify - I hope you are as moved by these songs as I am! Mighty Mackenzie on Spotify

To follow Mackenzie's journey and join in her wonderful support community go to: www.facebook.com/mightymackie

Her smile will change the world...

October 21, 2015

My Worst Fear Came True

When you become a parent you fear everything - from the first time you put them in that big crib at night and close the door behind you, leaving them at daycare, injury and illness (just to name a few).

No parent wants to hear that there is something gravely wrong with their child.

I have spoken a few times about my Mackenzie's developmental delays and all of the things we are doing to get to the bottom of it.

After what seemed like an eternity, we were finally able to get Mackenzie's MRI scheduled and cleared for sedation. Having to be at Gillette Children's Hospital for any reason is not fun. My heart ached for every single parent there. Looking around, we actually felt fortunate that Mackenzie wasn't as dire as some of the other children we saw there and I felt horrible for even thinking it.

We were able to meet with her neurologist right away the following morning to discuss the results. Her first words were, "We finally have an answer to why Mackenzie is having delays, but I'm sorry that it isn't good news."

My worst fear has come true. There is something wrong with my baby.

Mackenzie has a number of issues - from right hemihypertrophy (one side of her body is longer/different than the other), myopia and a staphyloma in her left eye and the worst of it: she has hemimegalencephaly - the left side of her brain is larger than her right. If you are looking at these words with confusion, you are in the same boat as us. To tell you the truth - I don't think her neurologist knew exactly what all of it meant either. Telling us that she needs to do more research on her condition does not exude a lot of confidence for us. Our next steps is to work with genetics to determine if she has an underlying syndrome attached to all of these symptoms of hers. Of course, in order to work with genetics, our insurance needs to provide a pre-approval which from what we've been told is going to be an uphill battle.

For the most part, from our vague understanding of her conditions, she is at risk for seizures (and may have already been happening for all we know), gross motor delay and speech delays. Since it is her left brain that is not working right - it is her processing capabilities that are affected. On the fortunate side - her right brain is perfect which is where we get her beautiful personality from. Mackenzie goes to physical therapy regularly to help her with gross motor issues such as walking, we also see an occupational and speech therapist from the school district's early childhood intervention program. We figured out that she is able to communicate with us through sign language and have been stepping up our efforts with it so that we can better understand her needs.

Since receiving her high level diagnosis a month ago, I have been a mess of highs and lows. Most days, I go to work like a robot with my brave face on. I don't let anyone in to see how sad and scared I am. I try not to think about what went wrong when I was pregnant with her. Was it a fluke? Did I eat something? Take something? I want someone or something to blame - I am my own easy target. I would do just about ANYthing for her - to make her life easier and better.

Try as I may to cling to just getting by day-to-day, it is hard not to think about her future. About our family's future. Will she need brain surgery? What is her life expectancy? What will her life be like? Will she ever be able to be independent?

So many questions with very little answers.

The only thing I have to cling to is my faith and to ask for prayers from anyone and everyone who is willing to give them.

For regular updates and to offer up your support and prayers, please visit our Mighty Mackenzie's Facebook page at https://www.facebook.com/mightymackie 

August 03, 2015

Half Marathon Recap: My First and Last

After 4+ months of pretty hard core training and a potentially running-career ending injury, I did it.

I finished a Half Marathon.

As of July 25, a week prior to the race, I ran 8 miles and felt pretty amazing. My pace was fantastic. I felt strong. Unstoppable.

After that day, I noticed that my hip was sore. Okay. Aches and pains. Kind of par for the course when you're pushing the amount of mileage I had been doing over the last month. On Wednesday, I went out for what was to be a 3-4 mile relaxed run. Again, I felt good. The hip was a little sore, but nothing I couldn't run through. I was running at a great pace until at mile 2, I felt a sharp pain soar through my hip, down my leg and through my back. It felt like someone knifed me and it stopped me in my tracks. After several failed attempts to try and run again, I limped the remaining 1.7 miles back home.

Much to my dismay, my husband's response was, "Don't start making excuses to not do the race on Saturday." Are you fucking kidding me? Excuses? 4+ months of busting my ass, getting up before dawn to make an excuse at the last minute? I don't think so. Upon seeing my face with that comment he quickly backpedaled as I entered into freak out mode. The next day, I called my PCP first thing in the morning to be seen by a doctor. They assumed Bursitis and referred me to the walk-in urgent care at Twin Cities Orthopedics. I was thinking, oh great, I am going to end up being here all day. To my surprise, I was seen almost immediately by their sports doctor, quickly got into an X-ray to ensure that I didn't have a stress fracture and got a diagnosis of: Hip Tendonitis of the IT Band at Point of Insertion (blah blah blah... I have tendonitis in my hip from all my crazy running). My options were:

A) Skip the race and start rehab/cross-training. Take pain meds for any immediate pain relief.
B) Go for the hail mary and get a cortisone shot to the hip. Oh and by the way, the worst case scenario is that the tendon will rip and you will need surgery to re-attach it.

Not running this race was not an option for me. I worked too hard and for too long to give up - I got the shot.

As the next two days went on I started to worry. The hip was feeling better but not great and I knew it would be a game day decision.

Little did I know it would end up being a starting-line decision. There is one thing I do that I'm sure annoys faster runners, but I always start out in a faster pace group than I should. It motivates me to get out of the gate at a good clip - and the truth is, even if I fall apart faster, having a solid 10k is critical for me in finishing with a decent time.

I was sore at first, but quickly got into my groove. At about mile 5 the song "Fight Song" by Rachel Platten came on. This song is my MANTRA for this year's running season. I actually got a little emotional when it came on my playlist. It was at this point that I knew I would go the distance. At around mile 9 I really started to fizzle. Beyond the pain, it was hot out and there was little relief from the sun along this course. I was sunburned. Dehydrated. I had to push away the voices telling me to quit. Towards the end, I was keeping pace with two ladies who were struggling. They were doing run/walk segments of about 30 seconds on 1 minute off. They invited me to join them and we trudged through the last 3 miles together.

I could see the finish line a quarter of a mile ahead and that is when I saw my best running friend standing there with my sweet little boy cheering me on. I finished my first ever Half Marathon with my best guy - he crossed the finish line with me and it was the best thing ever.

My running team greeted me when I got my medal and the first words out of my mouth were, "I never, ever want to do that again." My finishing time was atrocious (as in, I was that close to coming in very last). However, that doesn't matter. Embarrassed as I am to admit how poor my time was, I am proud to have even finished. It was a downright miracle. It would have been so easy to quit, but I didn't.

Me & Nordy

My amazing running team - Sole Sisters Running Crew

A lot of my friends and colleagues asked me why I felt the need to do this. I think I needed to prove to myself that the possibility existed and that yes, everybody is capable of accomplishing amazing things when you put your mind to it.

The reality is, I am injured in a way that will likely haunt me for distance running going forward. While my hip is in need of therapy and rehab, my time and attention really needs to be on my daughter. My hip can wait.

I still have two major races left this year: the Women Rock Starlet Challenge and the TC 10 Mile. While I don't want to let anyone down, I need to be realistic in what my body will allow me to do. If I don't listen to it, I may never be able to run again.

I'm ridiculously proud of what I accomplished on Saturday and definitely have the battle scars to prove it. Not only did I run this for myself, but I raised money for an amazing cause (and if you haven't donated, you still can!). Despite some of the agony- it was so worth it to do this for the kids. My pain is nothing compared to what they are going through.

With that, I leave you with, "Fight Song"
Like a small boat
On the ocean
Sending big waves
Into motion
Like how a single word
Can make a heart open
I might only have one match
But I can make an explosion

And all those things I didn't say
Wrecking balls inside my brain
I will scream them loud tonight
Can you hear my voice this time?

This is my fight song
Take back my life song
Prove I'm alright song
My power's turned on
Starting right now I'll be strong
I'll play my fight song
And I don't really care if nobody else believes
'Cause I've still got a lot of fight left in me

Losing friends and I'm chasing sleep
Everybody's worried about me
In too deep
Say I'm in too deep (in too deep)
And it's been two years
I miss my home
But there's a fire burning in my bones
Still believe
Yeah, I still believe

July 13, 2015

Half Marathon Training - A Few Setbacks

I have less than 3 weeks until the Minnesota Half Marathon/RBC Race for the Kids and I'm starting to get nervous.

I encountered a few setbacks over the last week with my training.

Setback 1: Canadian Wildfires. 
You heard that right. The wildfires caused some problems here in Minnesota last Monday. The smoke was thick as was the smell - akin something to the tune of burnt plastic. Air quality warnings were up everywhere and those in "sensitive" categories were likely to experience issues. Although not in a "sensitive" category myself, going out to run 5 miles in the smoky haze was probably not the best plan. However, I did it. At about the 3rd mile, my chest had a strange burning sensation so I dialed it back a bit for the last 2 miles. Ha. Take that wildfires.

Setback 2: Blood Donation
For the past 3 years at my job (not counting the year I was pregnant and on maternity leave), I sign up to donate blood at the blood drive here in my office. Seems like a relatively simple thing I can do with my universal blood type to do some good. Save a life. Last Tuesday, I donated my blood. They told me no vigorous exercise for 24-48 hours. Of course I shrugged it off. I didn't run that night, but I did run the next day. Guess what? I should have heeded their advice. Barely two miles into my 5 mile run, I started feeling incredibly ill - dizzy, short of breath, heart racing, nausea. For the first time ever, I thought I might have to call someone to get me home. I took a breather and continued on with walking - I cut my run short at 3.7 miles. In fear of making this situation worse, I took the following night off. Friday night I had plans so no running. Saturday I decided not to run in lieu of my long run planned for Sunday. As I hit up the Google for more information on donating blood while training for a half marathon, I came across a LOT of information. What did I find? That everyone reacts differently when donating blood. Some bounce back immediately where others will encounter decreased performance for weeks. WEEKS??? I'm trying desperately not to let my mind tell me that this is my reason for my performance issues so I'm going to continue to follow my training plan for the next 2.5 weeks and pray that things start to get better.

Setback 3: Mother Nature
I'm not going to get all TMI on you all here, but personal mother nature decided to pay me a visit early. I know women don't like to talk about this business - but aunt flo shuts me down. As an endometriosis sufferer, I endure a lot of pain at her hand and despite all attempts to ignore her, I usually lose that battle. Nonetheless, on the hottest day of the year yesterday, I embarked on my long run with my two teammates starting at the beautiful Hidden Falls Regional Park in St. Paul along the Mississippi River. 12 miles was the goal. At mile 6, I called it and knew there was no way I would be able to make it that far. If I learned anything from Setback 2, it is that you must listen to your body. You must slow down if you don't feel good or something isn't right. I survived 9.1 miles which, you know, hey, it is not a anything to shrug off. Still... I felt like a failure.

I wasn't sure what this structure was at Hidden Falls Regional Park,
but I do know that after running 9.1 miles it was fantastically cold to sit down on. 

Will I ever run another Half after all of this? I want the dorky 13.1 sticker. I want to cross it off my bucket list. I confessed to my teammates that after this year, I will not run another distance greater than a 10k. I want to get back to a place where running is fun. If I'm being honest - this is not fun. I am hurting. I am tired. I feel like I don't have time for anything else. I miss going to Zumba and group fitness classes. Heck, I even miss just getting on an elliptical. All this energy and training focused around JUST this one thing is just sucking all the life out of me and I'm over it.

However... I'm not done after this. While 13.1 will be all but a memory after August 1st I still have 2 major distances to tackle yet this season:

August 28 - 29: Women Rock Starlet Challenge - The great thing about this challenge is that it splits up a bunch of miles into 2 days. Friday night is a 2.5k, Saturday morning is a 10k, a 45 minute break (give or take) followed by the 5k. 4 medals, a necklace and a whole shitload of swag. It's a lot of running in a short time, but I think I've got this one and I'm looking forward to it.

September 12: Mill City Suds Run - Finally a fun run! I'm looking forward to kicking out a 5k, grabbing a quick beer and getting home to celebrate my son's 7th birthday and still be able to walk! Score!

October 4: TC 10 Mile - This is the one race that is a maybe for me - and only because I have entered into a lottery for the chance to run. Two of my teammates and I signed up for the lottery as a team, so we are hoping (well... kind of hoping) that it buys us into the race. Again, kind of a check off on the bucket list to be a part of the TC Marathon Weekend which is a huge deal for runners in my hood. FYI - the lottery for this race closes THIS FRIDAY!!! If you want to do this and need a team to run with - go ahead and choose "Sole Sisters Running Crew" from the team dropdown in your registration and I will welcome you with open arms!

I'm far from giving up on this goal - I will conquer 13.1 miles!

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