Author: Joanne

A fresh start in 2020

Like every new year, I start out thinking about all the things I would like to accomplish in the year ahead. I don’t like to think of them as resolutions, but aspirations maybe?

2019 was interesting and ripe with change. Amazing things happened such as winning an industry social media award and welcoming our new puppy Stella to our family. Scary things happened such as having a nanny (yes, when you are as type A as my husband and I… nannies are scary), Mackenzie started Kindergarten (OMG) and Jackson started middle school.

I always feel so motivated at the beginning of the year, but it is hard to put anything tangible together because let’s face it. You just can plan for everything. So while I may have aspirations, I also have forgiveness for myself.

2020 Aspirations

  • Continue to advocate for Mackenzie and ensure that she has the same opportunities to do things as any other kid. 
  • Be patient with Jackson as he heads into adolescence and is learning how to navigate middle school. 
  • Date my husband. Our marriage is in dire need of TLC. 
  • Meet my weight loss goal – I started Profile by Sanford in May of last year. I want to reach my goal! Just 15lbs to go! 
  • Not just run this year to run, but REALLY train and improve! I started doing Daily Burn 365 and I am confident between that and getting in some gym time I will start seeing some PRs this year. 
  • Read one book a month. I know that doesn’t seem like much, but it is considering I maybe read two books all of last year. If I want Jackson to read more, I have to show him that it is enjoyable – I need to be a better role model. 
  • BLOG MORE!! I miss writing. I miss sharing. I think it would help me sort out and navigate this crazy life. 
  • Spend quality time with friends. 
  • Not be afraid to make new friends. Mom life is hard. Feeling awkward among other moms is harder. 
  • Work my business. I LOVE my Monat products so why on earth am I so shy about telling the world how amazing they are? 
  • Make the church and God a bigger part of my life. I always feel more whole having it in my life.
So now that I put it down in writing, it’s time to live and take action. But at the end of the day… 

A place to rant

I had to chuckle when I saw this in my blog post history:

Clearly, I have had many ideas and thoughts but absolutely zero of them have come into fruition to be worthy enough to be published.

My little blog has certainly changed since I started it in 2006, you know, back when I was inspired by the likes of Perez Hilton and didn’t have kids to complain about. It changed from American Idol recaps, to infertility to raising a baby to health and fitness to… nothing? Yikes.

I think that defines this place for me perfectly. A mixed bag of rant. A rant of all the things. This is LIFE. So what does this mean for its future? No more overthinking. No more trying to find a deeper purpose for my blog.

As I sort out my life as a mom, wife, friend, professional and everything else that life is going to choose to spit out at me, I need a place to let it all out. A place to cheer. A place to cry. A place to rant.

You will not find politics of any kind here, so if that is what you are looking for, look somewhere else.

You will find a wife who loves her husband and desperately wants more alone time with him.

You will find the mom of two kids – 1 neurotypical 8 year old with a genius level brain and teenage level behavior and 1 sweet-as-pie special needs 3 year old who has a brain disorder, hemimegalencephaly, who has turned our world upside down in some of the best and worst ways that a human could ever go through.

You will find a friend – or at least a friend who longs for her friends and wishes she had more time for them.

You will find a runner who hits the pavement for the better part of the year for reasons mostly unknown, but will tell herself it is for health & fitness but it is really her escape from reality. Perhaps even a form of punishment and torture?

You will find a working mom who has flip-flopped for 8 years whether or not to continue pursuing her career or being at home with her kids, but somehow continues to pursue the career. Tomorrow she’ll want to be at home with her kids.

You will find a person just trying to pick her way through life. Will you join her?

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.

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…

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 

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

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!

Nothing Else Matters

I am guilty in getting caught up in the little things. I’m sure you know what I mean here- sweating the small stuff. Getting worked up over things that truly do not matter. Wasting time on things that suck the good energy out of my life.

My husband and I have been told that we are selfish and don’t care enough about other people outside of our sphere. I’ve been passive-aggressively memed on Facebook for it.

However, I know my truth.

I know that we are dealing with the hardest thing a parent should ever have to deal with – the waiting game. Mackenzie’s neurologist called us in for a follow-up with her – 3 months earlier than we had scheduled. She had reviewed her physical therapy notes and felt that she should be walking right now and wanted to see for herself what kind of progress she had made. The end result is more tests. MRI, audiology and genetic tests have been ordered. She wants to make sure there are no tumors on her spine, brain or in her abdomen. I don’t think there is a single word that could elicit more fear in the heart of a parent: tumor.

Mackenzie continues to knock all of these tests out of the park – they have yet to find the definitive reason for her delays. She is smart – she listens to our commands and despite the fact she is not talking, she uses sign language to communicate – food/hungry, more, thank you, please… it is kind of crazy how the signing has exploded. Although slow to physically progress, she is indeed progressing. She crawls on all fours over the army crawl/rolling she had done previously, she pulls to stand on anything and everything and has started to regularly cruise along every piece of furniture in our house. She is kicking ass. I just know she will come out amazing on the other end of this.

I refuse to accept anyone in my life at this point that cannot even possibly comprehend the stress and worry that we are under. I will not apologize for putting my kids and their happiness first. That sometimes means making unpopular decisions. Our choices are selfish on purpose. Our choice is to surround ourselves with only the positive – if anyone is to stand in judgement of us and our choices then you don’t deserve to be around us at all. I don’t have room in my heart for ugly, mean behavior.

With that said, in the spirit of positivity, we refuse at this point to accept that… that… WORD (*whispers* tumor) in our vocabulary at this point. I can’t even think about it or comprehend it. I don’t want to. If the time comes and it is a reality, I will deal with it then.

But not now. Not today.

Today, my heart has no place for bitterness – only forgiveness. Today, every moment spent with my beautiful kids will be treasured. Today, I will surround myself with laughter and beauty.

Today, I know that miracles do and will continue to exist – I get the great honor of witnessing it every day in my children.

 Nothing. Else. Matters.

Half Marathon Training: 1 Month to Race Day

In all my frenzy over Mackenzie’s issues this year, I haven’t gotten much of a chance to talk about one of my biggest running goals and challenges to date:

Running my first half marathon.

I am now more than halfway through my training program (I am using the Nike+ App Coach) and am about to head into my peak week. That means, my short runs are about 5 miles and my long runs are reaching the 11-13 mile range.

It is beast. It is hard. Sometimes, it even seems impossible.

My colleagues poked some fun at me when I told them that I share my runs and training via social media. I got the “Oh really Jo, you are that person? The person who shares their workouts?”

Yup. I am THAT person. I am keenly aware that there are people out there who are annoyed by this. I don’t post it to show off (I don’t even post my pace… which is still embarrassingly slow in my mind). There are a handful of people who always, ALWAYS hit the like button on my post. And when they hit the like button and I am out on my run? My Nike app sends a cheer to me. Getting a cheer at mile 9 when I feel like I want to die and crawl back home is about the BEST thing ever. So go ahead and be annoyed, but to those who are supporting me and cheering me on… THANK YOU.

There are many times when I admit that I might have bitten off more than I can chew. The training is rigorous and you cannot let up on it (unless you want to be injured, unable to walk for a week or in extreme measures DIE after the actual race). At this point, I am tired. I am sore. Most nights it takes every ounce of motivation to get me out the door and run for an hour or more. And my long runs? I honestly dread them and the mental anguish I have to put myself through to do them.

Yet despite the naysayer in my head, I am determined to do this.

Thankfully, I am not doing this alone. Two others from my running group are also running the half marathon with me – and for us of us this is our first. Words cannot express how grateful I am for their support and for keeping me going. I honestly don’t think I would do it if I had to do it alone.

Kathy – My Sole Sister

Then there is the question of WHY.

This, my friends, is a very good question.

The answer is two-fold:
1) For me. I’m not trying to prove anything to anyone but myself. I want to know that I can set a goal and keep it. For months, I have been starting and quitting Beachbody and DailyBurn programs, but I have not yet quit running. It is my time. Time out of the house. Time to exercise. Sweat. Work out daily frustration. Enjoy the beautiful Minnesota summer. I want to prove to myself that at nearly 40 years old, my body is capable of doing amazing things.

2) For charity. The half marathon I am running is the Minnesota Half Marathon – RBC Race for the Kids. I have run a lot of races in my short running career, and all my high cost fees usually go to charity, but this is one that I truly take to heart. The charity is Ronald McDonald House. Ronald McDonald House Charities, Upper Midwest provides a home-away-from-home for families with children facing critical medical crisis.  They are founded on the belief that a child and family heal best when they are together. I am a mom. My daughter has special needs and my family could very well need these services someday. I want to know they are available not only to me, but other families who want to stay together when their kids are critically ill.

With that said, I am passionate about this cause and about running. So much so, that I am fundraising for the cause. Will you consider a donation? Even $5 will help me in reaching my fundraising goals. More importantly. Do it for the kids!!

http://rbc.kintera.org/raceforthekids/joannekoenig

Those of you who know me know that I never do this kind of thing, so I am hoping JUST THIS ONCE you will consider helping me in raising money for a really great cause.

I promise to start blogging on the regular too and keep you all posted on my journey to the Half as well as my sweet Mackenzie’s progress.

Mackenzie – 18 months

When Your Child is Different

I have been mostly open about my sweet, little Mackenzie. About her… differences.

I am a part of a Facebook mom’s group for babies born in December 2013. They are the most supporting, amazing and wonderful women and moms on the planet. All of our kids are wonderfully unique in their own way, but for the most part, all of their babies did MOST developmental things around the same time.

That’s when I started to worry. Why isn’t Mackenzie doing these things?

Since the time she was about 3 months old, we knew that Mackenzie was likely to have some challenges. We discovered vision issues in her left eye very early on (which is a rare discovery in a baby). However, it was unknown what the impact of these issues would imply. There was also the discovery of her skull ridge, lipoma in her tummy, a small hip joint and one leg longer than the other.

Put ALL of these things together and what do you get?

Overwhelmed, emotional parents of an 18 month old who is severely developmentally delayed.

But Mackenzie… she is special. She is happy. She is blissfully unaware that there is anything wrong with her. Of course, being parents, we want only the best care for her. We don’t want to keep her in the older infant room at her daycare anymore as she belongs with her toddler friends, learning toddler things.

I am sensitive to the fact that she isn’t doing what he is “supposed” to be doing at this age. I don’t go around doing the usual bragging that pretty much all mommies do, so most of my “friends” (speaking of those specifically on social media) are unaware that my daughter has any issues. My husband and I have chosen to keep Mackenzie’s developmental struggles in the family. It just feels too personal to make it a social “thing”. On the other hand – am I not giving my social media friends enough credit? Is the truth that I am worried about being judged?

For the most part, I have brilliant, smart, supportive and mostly Christian social media friends. They would pray for and cheer on Mackenzie as she learns at a year and half to crawl, sit up and pull herself to stand – most things that that the “average” 10-12 month old is already doing.

Mackenzie is very quickly practicing her mastery of pulling to stand. SO much so, that she did it last night from about 2:30 – 5am. With 2 paci’s over the side of the crib, 2 parents who are tired as hell, we finally gave up and let her “figure” it out. She fell asleep around 5am sitting up.

Quickly we learned that just because Mackenzie is delayed, doesn’t mean we aren’t going to go through ALL of the same things every other parent to a baby went through about 6 months earlier.

Yet – I kind of want to scream to the universe that she did this all night long. I’m so proud of her. Physical therapy is hard work for her – they push her to the baby brink and it is sometimes hard to watch. But nights like last night tell me that the hard work is paying off. She’s definitely doing what she’s supposed to be doing – even if she’s giving it her best go in the middle of the night.

I don’t think any parent ever anticipates having a child with special needs. I struggle with work-life balance. I struggle with my desire to succeed and provide as well as my deep need to be with her at therapy every week. I struggle with trusting her daycare to work with her on the exercises she needs to work on. I should be there.

Despite our struggles and setbacks, I love her with the fire of a thousand suns. I love her in a way that is different from anything I have ever known. Of course I love my son to the moon and back, because well… mama’s boy, but Mackenzie… oh Mackenzie and all of her special, unique qualities makes me love her and want to protect her in way that only I, her mama, can understand.