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...




 
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