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:
|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 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.