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.

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…

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.

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.