"Just Breath."
It has been become my mantra over the last couple weeks as our new reality has begun to set in.
On the outside, I am the tough fighting mama. Prepared to tackle everything head on. Ready to advocate for my daughter in a single bound.
On the inside, I am a mess of anxiety. What does her diagnosis mean? What is her prognosis? How much more do we have to learn? What kind of life will Mackenzie have? How do I make sure my 7 year old son feels engaged and a part of everything? How do I balance my full-time plus job in addition to the growing number of medical appointments?
HOW HOW HOW?
That tough exterior is quickly crumbling and bumbling through is all I can do most days to hold it together. Why am I so afraid to tell people that I am scared? Scared of the unknown. Scared of not being everything to everyone. Scared of something falling through the cracks. I feel these moments of panic more often than not lately. So here it is: I'M SCARED. Terrified really.
Over the weekend, I passed up the opportunity to run in the TC 10 Mile. I'm fully disappointed in myself for not pushing through my mental block to do this race. I woke up on Sunday morning at 5am to get ready to go. I made it down to the kitchen for breakfast - I even got my shoes on. My mind took over - I'm exhausted. I'm depressed. My hip hurts. I haven't been training. Excuse after excuse in my brain brought me right back to bed where I slept hard for the next 2 hours. A feat unknown to me in my mommy era.
However, this day was not a total loss - we went to church where Mackenzie in all of her cuteness cheered after every song that was sung and of course we got our traditional donuts afterwards. I took Jackson to see a movie and then to the Halloween store. We came home to his friends waiting for him to play and me with some quality time with Drew, Mackenzie and our neighbor to watch our Vikings lose an oh-so-close game. It was a good day.
Despite all the goodness of the day, I can't help but think that I let myself down a little by not running the race. It's not like me to give up so easily. To let my head get the best of me. It's so important that in light of everything that has happened with Mackenzie that I don't lose myself in all of it. That running can still be my thing. That having a thing is still okay even though my family needs my full attention. That having a thing might be the only thing that gets me through this.
The movie Jackson and I saw was Hotel Transylvania 2 and even though he doesn't care as much for animated movies as much as he used to (and seriously... when was 7 too old for animation???), I still really loved the sentiment of the movie Hotel Transylvania 2: Differences don't matter - love is love.
"Human, vampire, unicorn as long as you're happy."
Wednesday, October 7, 2015
Tuesday, September 29, 2015
Welcome to Miracle Mackenzie
Welcome to Miracle Mackenzie! If you found this page, you know that our daughter was recently diagnosed (primarily) with hemimegalencephaly. My husband Drew and I intend to use this site as a platform to provide updates to our friends and family on Mackenzie's progress as well as provide an outlet of hope for other families who may be going through the same thing.
Without further ado... here is Mackenzie's story:
While all kids are miracles in their own right, Mackenzie is extra special. In 2011, I suffered an ovarian cyst rupture caused by stage 4 endometriosis. I ended up losing my left ovary and fallopian tube. With a sparkle of hope, the following year we started the IVF process - I didn't even get past the initial tests. I had a large cyst on my remaining ovary and it was deemed unsafe for me to continue with IVF. While my heart was broken, we moved on with life and continued to enjoy our first miracle baby Jackson. With continuing pain, I began looking into options for a partial hysterectomy. In April 2013, just 2 weeks prior to an ultrasound to look at the status of my ovarian cyst, not feeling right (not to mention super late), I jokingly took a home pregnancy test and to my shock and awe it was positive. That ultrasound was quickly changed to a pregnancy dating ultrasound. Was this even for real?
My pregnancy with Mackenzie was somewhat uneventful (other than the fact I was of "Advanced Maternal Age"). She passed all of her tests. We were told she looked fine and healthy. Late in my pregnancy, around 31 weeks, I started to dilate and was put on bed rest until I reached the safer zone of 34 weeks. She was breach at one point and then just... crooked in my pelvis. At 36 weeks, I gave birth to my beautiful Mackenzie Marie. My labor was not without complications. She was still crooked in my pelvis and her umbilical cord was resting on her shoulder - every time I was moved to lay on my left side, she squished it and crashed and I started crashing with her. This happened multiple times. Suited up to prepare for a c-section, we took one last shot by giving me pitocin. This sped things up and Mackenzie started repositioning. After a 9 hour labor, Mackenzie was born at 8lbs 8oz and absolutely stunning. I was immediately in love with her.
As early as 6 weeks we noticed that her eyes looked different - one was bigger than the other. Our pediatrician referred us to a pediatric eye specialist who diagnosed her with myopia (near-sightedness) in her left eye. She would be wearing glasses for the rest of her life, but we needed to ensure that she was using her bad eye. We tried patching, blurring drops but she fought us hard. She uses her eye, but not without the help of her good eye. Today she wears her cute glasses full time.
At 6 months, I noticed a what seemed to be a large mass in her belly. We immediately had her looked at. An ultrasound and CT were scheduled to take a closer look. It turned out to be a benign lipoma. No reason for concern unless it becomes larger or painful.
By around 1 year, we noticed that Mackenzie was missing developmental milestones (of course some being a bit questionable, so we didn't want to jump to conclusions). She wasn't crawling or scooting although she would roll. She had no interest in pulling up to stand or jumping in a jumper. She didn't like to sit up and would usually fall over. We thought maybe hip dysplasia. An orthopedic specialist said her hips were fine but that she has right hemihypertrophy (one leg longer than the other).
In March 2015, we visited with a neurologist. Not immediately worried, but wanting to see progress, physical therapy was recommended. When she missed her 18 month walking goal, we were asked to schedule an MRI as well as an ABR and renal ultrasound. Because of illness and scheduling conflicts, this didn't happen until mid-September.
The results were not good. While there are a host of other things as part of her results, the main one being that she has hemimegalencephaly (an asymmetric enlargement of left cerebral hemisphere).
The main concerns around her disorder is developmental delay - for Mackenzie specifically relating to gross motor and speech as well as the risk of seizures (which she has not had to our knowledge).
Our next steps are to have a genetic workup and find out if she has a specific syndrome in which to attach her condition. This will provide us better treatment guidance.
All of this sounds super clinical, but I feel it is important talk about what a spitfire this child is. She has the sweetest personality and the most gorgeous smile (that I have often referred to as the answer to world peace). We absolutely love her to the moon and back.
Scared to death over this diagnosis is an understatement. Although, we are positive that with the power of positive energy, love and prayer that she will be a fighter. That she will defy the odds.
She is our miracle and uniquely made. There is nobody like her and that makes us love her even more.
She's got this.
Without further ado... here is Mackenzie's story:
While all kids are miracles in their own right, Mackenzie is extra special. In 2011, I suffered an ovarian cyst rupture caused by stage 4 endometriosis. I ended up losing my left ovary and fallopian tube. With a sparkle of hope, the following year we started the IVF process - I didn't even get past the initial tests. I had a large cyst on my remaining ovary and it was deemed unsafe for me to continue with IVF. While my heart was broken, we moved on with life and continued to enjoy our first miracle baby Jackson. With continuing pain, I began looking into options for a partial hysterectomy. In April 2013, just 2 weeks prior to an ultrasound to look at the status of my ovarian cyst, not feeling right (not to mention super late), I jokingly took a home pregnancy test and to my shock and awe it was positive. That ultrasound was quickly changed to a pregnancy dating ultrasound. Was this even for real?
My pregnancy with Mackenzie was somewhat uneventful (other than the fact I was of "Advanced Maternal Age"). She passed all of her tests. We were told she looked fine and healthy. Late in my pregnancy, around 31 weeks, I started to dilate and was put on bed rest until I reached the safer zone of 34 weeks. She was breach at one point and then just... crooked in my pelvis. At 36 weeks, I gave birth to my beautiful Mackenzie Marie. My labor was not without complications. She was still crooked in my pelvis and her umbilical cord was resting on her shoulder - every time I was moved to lay on my left side, she squished it and crashed and I started crashing with her. This happened multiple times. Suited up to prepare for a c-section, we took one last shot by giving me pitocin. This sped things up and Mackenzie started repositioning. After a 9 hour labor, Mackenzie was born at 8lbs 8oz and absolutely stunning. I was immediately in love with her.
As early as 6 weeks we noticed that her eyes looked different - one was bigger than the other. Our pediatrician referred us to a pediatric eye specialist who diagnosed her with myopia (near-sightedness) in her left eye. She would be wearing glasses for the rest of her life, but we needed to ensure that she was using her bad eye. We tried patching, blurring drops but she fought us hard. She uses her eye, but not without the help of her good eye. Today she wears her cute glasses full time.
At 6 months, I noticed a what seemed to be a large mass in her belly. We immediately had her looked at. An ultrasound and CT were scheduled to take a closer look. It turned out to be a benign lipoma. No reason for concern unless it becomes larger or painful.
By around 1 year, we noticed that Mackenzie was missing developmental milestones (of course some being a bit questionable, so we didn't want to jump to conclusions). She wasn't crawling or scooting although she would roll. She had no interest in pulling up to stand or jumping in a jumper. She didn't like to sit up and would usually fall over. We thought maybe hip dysplasia. An orthopedic specialist said her hips were fine but that she has right hemihypertrophy (one leg longer than the other).
In March 2015, we visited with a neurologist. Not immediately worried, but wanting to see progress, physical therapy was recommended. When she missed her 18 month walking goal, we were asked to schedule an MRI as well as an ABR and renal ultrasound. Because of illness and scheduling conflicts, this didn't happen until mid-September.
The results were not good. While there are a host of other things as part of her results, the main one being that she has hemimegalencephaly (an asymmetric enlargement of left cerebral hemisphere).
The main concerns around her disorder is developmental delay - for Mackenzie specifically relating to gross motor and speech as well as the risk of seizures (which she has not had to our knowledge).
Our next steps are to have a genetic workup and find out if she has a specific syndrome in which to attach her condition. This will provide us better treatment guidance.
All of this sounds super clinical, but I feel it is important talk about what a spitfire this child is. She has the sweetest personality and the most gorgeous smile (that I have often referred to as the answer to world peace). We absolutely love her to the moon and back.
Scared to death over this diagnosis is an understatement. Although, we are positive that with the power of positive energy, love and prayer that she will be a fighter. That she will defy the odds.
She is our miracle and uniquely made. There is nobody like her and that makes us love her even more.
She's got this.
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