Tuesday, May 10, 2016

This One Wild Life

Marriage is really hard, ya'll. That's not just a cliche. It's the absolute truth.

I spent much of my youth struggling with so much anxiety and self-doubt. I married young for my group of peers and my maturity level was an interesting one at best. I graduated college in May and was married in August. I went from living with my mother and siblings to trying to figure out how to live with a strange man. Eeek! He was just as insecure as I was, but I think he hid it better or at least differently.

We have survived almost 14 years of sometimes chaotic scramblings to love one another. Our expectations have often clashed like a confused round of bumper cars. He has given more. I have given more. We have loved one another like nothing else existed. And we have hurt each other with deep wounds that try to loosen their stitches when late night conversations begin. We have brought each other to tears and we've let angry words resonate in the home we've built together.

Years ago I told my husband that no one else could break me like he can. That was a huge burden to place on him and I'm not sure that I should have done that. I have given my husband roles that only belong to the Lord. He alone can mend what is broken and he alone can assure me of my true worth. I should not ask such things of my husband, but I have and I will probably continue to do so.

Things have been bad. Things have been worse. But hope remains.

We are two desperately broken people trying to love each other when we don't always feel very loving. We fight to have our needs/rights/wants met. We forget the other is not our enemy. We go to bed angry and wake up numb. But we press on. All brokenness can be redeemed.

Love doesn't always feel like it's enough to keep clinging to each other. Anything seems too hard when you allow festering thoughts to echo in your mind growing ever stronger with every repetition. Oh, but how we are committed to this promise that we made on a sweltering day in August when the window AC units blasted so loudly we were the only ones who heard our vows. We heard them and the Lord heard them. We made a covenant with each other before the Lord and the only way one of us is leaving is if the Lord takes us. That's the deepest truth when our minds swirl with so many ugly falsehoods.

It's fine to talk about grace and to rest in it, but we're going to have to wrestle with it, aren't we? We're going to learn what it means when we give past what we think we can or even want to give and we are handed what we don't deserve over and over again. We push through whatever selfish shouts are echoing in our hearts and remember that our hearts can't be trusted anyway. But we can trust the One who said there is no limit to what his love and grace can do. He is the Maker of every unbroken promise and every broken person. We hold on to Him and we hold on to each other.

I love this man and I am so grateful I have found the one whom my soul loves.

There's no one I'd rather hash something out with until 3 in the morning where neither of us can make a coherent point anymore, but we're both determined that this is something we need to get through.

There's no one I'd rather have experienced so many adventures with.

There's no one I'd rather know and have know me with as much intimacy and rawness.

There's no one I'd rather walk through this one wild life with.

Wednesday, May 4, 2016

On Being Your Child's Advocate

May is Brain Tumor Awareness Month. As a brain cancer mom and a special needs mom (hypotonia), I want to take this moment to encourage and remind parents and caregivers that when it comes to any concerns for your children you are your child's first and best advocate! Here are a few things to keep in mind.

Trust your gut

If you believe something is not quite right with your child's behavior or with something that is physically manifesting itself, then act on that belief. Sometimes we may feel we are being "paranoid" or overthinking things. Unfortunately, we may encounter some medical professionals or other parents who may dismiss us as just that. New parents may feel this even more. I came to the point where I would gladly face a little embarrassment for overreacting on something if it meant I could rule something out or get the help my child needed.

Don't be afraid of the possibility of looking a little silly. There are trained and well-educated folks in the medical field who certainly know a lot about what a textbook definition of a specific condition looks like and they have treated countless individuals. They do know their stuff. However, they do not know your child. Even if you've been with this practice for years, they probably cannot tell when your child is "off" and something is not right. Depending on your child's age, he or she may not be able to truly articulate what is going on and may need you to help. When my daughter Eliana had a brain tumor, she was not able to tell me she had a headache or that anything was bothering her. I knew that something was off when her vomiting was the only symptom and no one else in the house was acting sick. Her doctors told me it was probably a lingering virus. I knew it was something else and I pushed until we found out what it was.

Get a second opinion or a third if you are not feeling comfortable about something. This is your child entrusted to you by the Lord to care for and to love. You should never be afraid to make as much noise as possible for him or her until you are sure you have done all you can.

The Internet is your friend, but it can also be your enemy

As parents and caregivers, we should be as informed as possible. Sometimes that means we are going to an appointment with an idea of what the diagnosis is going to be and we can be assured everything will be fine. Sometimes we are staying up too late at night researching symptoms and giving ourselves guaranteed nightmares. 

Know what is going on with your child, but also know that plugging some symptoms into a search engine is not going to solve anything. Maybe you will find information that will actually lead to a diagnosis of the exact condition you found online. Maybe. However, you'll still need some sort of diagnostic test or exam to verify that and a 2 a.m. panic attack is not going to help your child. So. . .be knowledgeable but also be wise.

Take as detailed notes about things as you can with anything that does not seem quite normal for your child. Even if you're not sure if it's relevant, make a note of it. You will want to present as much information as you can to the doctor or natural health practitioner you may visit.

Research, but keep in mind that there are many variables to consider with every diagnosis your research will uncover. When we took our son Liam to a geneticist for testing, I brought with me a diagnosis I was sure he had. (He didn't have it.) His doctor was extremely gracious in her approach to my concerns about this diagnosis. She very politely told me the tell-tale symptoms he did not have, but she also let me know that she could see why I was leaning in that direction. This same doctor answered countless questions for me and even advocated for me with another specialist who was not so willing to listen to me.

When you have a diagnosis, research the stuffing out of it. Ask questions, read books, find mom blogs written by parents going through the same thing, etc. When Eliana was diagnosed with desmoplastic medulloblastoma, I researched the diagnosis quite a bit. I was able to go to her doctors with informed questions (even finding and reading articles written by her neurosurgeon and the head of her neurooncology team). I would message her nurse practitioner or her neurooncologist about the latest research articles that popped up on brain tumor organizations I followed on Facebook. I would tell her team that I read this statistic and wanted to know their opinion on it and how Eliana's treatment, age, etc. may play a role in those numbers. Sometimes I would find myself asking a question that would later play on a loop in my mind because it just sounded so stupid. Oh well. So be it. It felt good to know that I was staying as informed as I could and that there was a respectful dialogue happening between myself and her doctors.

You can change doctors, specialists, practices, etc.

We have changed doctors and therapists. We have changed these for various reasons and over a number of years, but it ultimately came down to our comfort level. Are you being listened to? Do you feel taken seriously? I am not talking about acting entitled or throwing around obnoxious demands. I am referring to simply feeling that as the parent of this child you are being truly respected. Sometimes a therapist just does not click with your child and those therapy sessions are doing more harm than good. This therapist may be extremely capable, but just not a good fit. It is okay to seek out someone who is. Sometimes a different specialist offers the chance for a pair of fresh eyes to examine your child's case and that's just what is needed to move forward with the best course of action. Seek out additional opinions if you need them. Look for a practice that suits your family's needs or lifestyle. Work towards caring for your child in the best way you can remembering that the professionals you hire should be doing the same.  

Be a momma tiger, but be a respectful tiger

There are nurses, doctors, and billing folks out there who have definitely heard me roar. At times, I could have possibly been more respectful than I may have been. I have been in a room in the oncology ward and been visited by doctors who just saw a previous patient losing his battle with cancer. I have talked to a brain surgeon who was furious with the care his patient received from those he worked with and the tension in the PICU room was palpable. I have sat through rounds first thing in the morning after not sleeping all night and felt like my daughter was just another "patient in room number ___".

People assisting our children are just that. People. They have many other patients to see. They are facing impossible situations and they have imperfect capabilities. They are going through personal losses, divorces, financial burdens, etc. all while trying to remain professional while working ridiculous shift hours. Advocate for your child. Get a little loud if you need to. Expect professionalism and compassionate care for your child. But also remember the person caring for your child is another person created in the image of God. Sometimes there will be mistakes. Sadly, some mistakes are more costly than others. However, we typically operate on the idea that we should be treated based on our good intentions while treating others based on the outcomes of their actions. Approaching all circumstances with grace first means we are setting an example for our children who are watching us. It also means we are treating a person with the same dignity we are asking them to show our family during a trying time.

What are some ways you have had to advocate for your child? I'd love to hear from you!
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For His Glory, 

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Monday, February 8, 2016

Discovering Medulloblastoma: The New Prologue

(I would like to blog more often than once every couple of years. I really would. )

This past week marked a HUGE milestone for our family. It was almost like a new beginning. Our daughter had an MRI to monitor the progress of her medulloblastoma. This particular MRI was 5 years post-treatment. It was clear and her lab work was "perfect". We can officially say she is cancer free.

Her monitoring will continue with a new long-term care team. She will still have yearly check-ups and we will learn how to care for any late term effects her treatment may bring about. For now, she is healthy and happy.

What can I say about our good and gracious Father above? The Lord has been faithful to hold our hands through all of this and I am just so sure of his sustaining power and his unending grace. Eliana is his and his will directs her life.  

"From life's first cry to final breath, Jesus commands [her] destiny."

I believe that just as sure as I believe in what I physically see in front of me. He does not have to let me have one more second with my sweet girl, but he has chosen to allow me to watch her growing into such a compassionate and kind lover of life. She is here for me to hug. For me to breathe in. For me to teach to stand in awe of the One who formed and commands every cell of her being.

Eliana has been so brave through so much. I find it difficult impossible to even put into words how proud of her I am. So proud of her sweet little warrior spirit through MRI

after MRI

after MRI

after MRI.

Always with the, "Mommy, I got this stuff in my hand."


And always with the bravest of young men guarding over her.

We are so thankful for the Lord's mercy over this precious one.

Part 1: Discovering Medulloblastoma: The Back Story (Part 1)
Part 2: Discovering Medulloblastoma: Signs of Something Wrong (Part 2)
Part 3: Discovering Medulloblastoma: Our Daughter Has A Brain Tumor (Part 3)
Discovering Medulloblastoma: The Prologue