Mixed Bag Of Rant

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.

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