"For you created my inmost being;

you knit me together in my mother’s womb.

I praise you because I am fearfully and wonderfully made;

your works are wonderful, I know that full well.

My frame was not hidden from you when I was made

in the secret place, when I was woven together

in the depths of the earth. Your eyes saw my

unformed body; all the days ordained for me

were written in your book

before one of them came to be."

Psalm 139: 13-16

Monday, January 18, 2016

Happy 2016!

It's been a while...

I realized I haven't updated the blog in over 6 months! In those 6 months, we have met so many new people, and have begun moving toward the next phase of our lives. Meghan was recently approved to receive a service dog and as she has received such incredible support from the community- and from so many people that have never even met her- that we would like to give everyone an update on how she is doing!

In one word? Awesome. This kid...she continues to defy the odds. She is determined, persistent, and tenacious. She can light up the room with her smile, and her sweet little voice is almost too much to handle. Currently, she is really into books by Bill Martin Jr, and Mo Willems (have you read the Elephant and Piggie books? If you haven't you're missing out!). She is reading at a first grade level. Her neurologist is "puzzled".... He says he cannot explain her brain. If you read her MRI report, it's paragraphs long describing all the things that are abnormal. My sweet little poor prognosis cannot be explained. It makes me smile:)

We seem to have figured out a way to manage her blood sugar issues when she is sick, and her high protein supplements have helped restore some balance to her chemistry. She has had some issues with intermittent vomiting, and we don't have great answers. She has had several episodes over the last year, and after a couple of hospitalizations there is a possibility that it is her shunt causing the symptoms. The plan is for her neurosurgeon to explore that possibility the next time she has an episode (we are praying that she decides not to have any more episodes- exploring means invasive testing and possible surgery).

She is doing well in school, and we can see how it's really helping her social skills. Her primary "social therapist" however, is her big sister, who spends countless hours playing with and helping her develop her imagination. Meghan absolutely adores Addie, and there have been many moments that I would like to bottle up for eternity- God's perfect plan included this special relationship, and it is a blessing to watch.

Meg is also in the market for new wheels, and we are getting pretty close! Hopefully in the next month or so she'll have a flashy hot pink ride to show off. She's been walking for almost a year now, but her balance continues to be an issue, and she isn't yet able to navigate long distances or busy public environments without the assistance of a wheelchair. According to her Physical Medicine and Rehab physician, this will likely be the case for several years. Which, makes us REALLY excited about the decision to partner Meghan with a service dog. Our mission as her parents is to help her be the best Meghan she can be- to give her every opportunity to be independent, and have every resource to increase her quality of life. A service dog will drastically change what she is able to do without the help of an adult. We also know that it will help increase her options for education, as the dog can help her navigate a school environment that has it's own unique challenges. There are some decisions that are difficult to make, but this was not one of them. It will take around 18 months for Meghan to receive her service dog once we finish our fundraising commitment. We have once again been blessed by so many family, friends, and anonymous donors willing to be a part of Meghan's story. It is humbling, and brings me to my knees with gratitude. Know that we sincerely appreciate your kindness and generosity.

And did I mention that she is about to turn 4? I can hardly believe it. And there you have it:)

Thankfully things have slowed down for me a little bit. My last big hurdle was a surgery in October to remove my ovaries, putting me in early menopause (groan) but allowing me to take a better medication to prevent a recurrence of cancer. I also had my first infusion of a medication that works to prevent bone loss, and also has been shown to reduce cancer recurrence. My oncologist calls it "optimizing my treatment"...I called it a-little-too-close-to-chemo, but knowing what it's doing helps to provide the mental fortitude to endure the side effects. I'll have these infusions for three more years. Can I just be honest for a minute? Part of the reason I haven't posted is because it has been difficult to write. Writing forces me to process, and I am weary of having to process. This part- the after- when everyone but you has moved on is the hardest part.
Many people assume that once the active part of cancer treatment is over, you are "done". Anyone who's gone through cancer treatment will probably tell you that the reality is that you are never done. Cancer leaves an invisible, but indelible mark on your life. Every oncology appointment, every lingering and permanent side effect from treatment, every time I look in the mirror- it's a constant reminder of the trauma. I am SO ready to move on, and in so many ways I have, but in many more I am forced to re-define normal. To fight the urge to give in to the enemy's whispers. Sometimes I fight using the right weapons-prayer, writing, and physical training..... and sometimes it's easier to shove it aside.

I've done a lot of shoving.

Slowly but surely, I'm learning how to give myself grace. I know I have so so much to be thankful for, and it is the thankfulness that I choose to focus on. I know beyond a shadow of a doubt that God can use anything for good if you let Him. I don't yet know the full spectrum of how He will use this in my life, but for now, I'm still here. I'm willing to share the story that He's writing. He gets ALL the glory.

And that's enough for me.

"You intended to harm me, but God intended it for good
Genesis 50:20

Broken Vessels

I had a wait a while to write this one. In fact...I waited until September 2015. I couldn't post it then. Sometimes being vulnerable, means, well, being vulnerable. Going back to re-read it now, I feel it's just as honest as it was in September, so here goes:

Sweet, spunky, loving and full of life Laura Strong lost her fight against cancer just a few weeks ago. I was only privileged enough to cross her path for a short time, but that chance meeting left an indelible mark on my life experience, as was her way with everyone she met. Her death is a bittersweet mix of rejoicing that she is in heaven, and the searingly painful reality for her husband, three children, and everyone who loves her. This is where the shadow creeps in.

It's easy to process your diagnosis, arrive at a place where you feel "comfortable" with the shadow. Walking alongside it for more than a year now, that shadow and I are well-acquainted. Most of the time it only requires a quick glance- the times when people compliment your "haircut", or you realize you can't wear that strapless dress you've been hanging onto for a few summers. Sometimes, it's easy to shrug it off, turn on the light of the truth, and forget that the shadow is there. Then there are times when the shadow slips it's arms around your spirit and squeezes. Losing Laura was one of those times. It's a reminder that the shadow is real- very real- and a reminder of how much I need to continually seek the light of the Truth, lest I be convinced of the lie of the shadow. Because that's just it...although it is very real, it will never win. It's a lie I can't afford to believe.

Laura's gift to me on earth was a quilt. Her gift to me in heaven is the reminder that my life here on earth matters, and is precious to the one who has every one of my days written in His book. Her gift to you, what she would want you to know, is that you are precious, you are loved by your creator, and your life matters. And she would give you permission to give the finger to anyone who tells you otherwise. We are all broken- whether it's cancer, a disability, or a slight tendency toward anger and a penchant for pride. The difference is what you allow God to do with your brokenness.

Like Laura, I want to be a vessel. A broken vessel, able and willing to be filled up with grace. Jesus uses our brokenness to share His truth- the truth that He was the ultimate broken vessel- perfectly broken for our benefit. And in that truth, we find rest.