Thursday, December 22, 2016


Before Thanksgiving, the newspaper asked for stories from the community about what people were thankful for. I noticed it for several days and finally decided to write a piece for them. They published some of the stories in the newspaper on Thanksgiving day, mine included, and posted all of them online. It was nice to see my words in print, but I was more grateful for the chance to share my thoughts on what I was thankful for. Here's my story: 

My husband and I received some staggering news just over six years ago. Five months into our first pregnancy I had to be induced to save my life. I had HELLP Syndrome and the baby and I would both have died if they had not induced labor. Our little boy was stillborn the night before my 26th birthday. It is a never ending road to deal with the loss of a child. But the love and support we received from family, friends, and neighbors was amazing. We were so grateful for monetary help, meals, cards, momentos, and prayers in our behalf.  

It seems in times of tragedy that love pours out in equal amounts to help assuage the pain.  
We went through two more difficult pregnancies. People we didn't even know were praying for us and keeping up to date on our progress. It was amazing to us, and we were thankful for every good thought sent our way.  

We had two beautiful girls and thought the worst was behind us. Life was going pretty well and we were excited about my husband's new job and moving to a new home soon.  

Then our younger daughter started falling. She was twenty months old and had been walking well. We took her to the doctor and he diagnosed a double ear infection. The infection cleared up but her walking got worse. She was to the point where she wouldn't walk and hardly wanted to crawl. After more doctor trips to her pediatrician, an ENT, a couple MRIs, and blood and urine tests, we learned she had neuroblastoma cancer along with OMA syndrome. The tumor had also grown into her lower spinal column complicating the situation.  

From the moment we found out, the doctors and nurses showed both us and our daughters such compassion and understanding. The staff at Primary Children's hospital has been amazing the last nine months. Generous donations to the hospital have helped make our daughter's multiple hospital stays better with handmade blankets, stuffed animals, toys, books, and more. The Ronald McDonald room and the groups who make meals for those away from home help relieve the burden of extended stays.   

From the moment we told our family and friends, we were overwhelmed with love and prayers. Our closest friends, as well as people we hadn't seen for years flooded us with support, mostly online. But we also received cards and meals, gift cards and care packages, and many offers of babysitting.  

Throughout this hard time we have been the recipients of much love and service, all due to the devastating diagnosis of the life altering disease our daughter has. Most of the support was at the initial time of diagnosis, but those who have supported us during this whole long journey are much loved by us. We are forever thankful to all those who take the time to look beyond their busy lives to help us in our time of great need.  

In the words of Fred Rogers, "Anyone who does anything to help a child in his life is a hero to me." 

Sunday, December 4, 2016

The Sound Of Silence

"...disturb the sound of silence..."

Music disturbs the sound of silence and touches the soul.

To fully feel emotions, sometimes we need music to take us to the deeper parts of our soul.

This version of this song seems to channel my feelings lately. I've listened to it over and over.

Les Miserables is a musical that disturbs the sound of silence as well. Full of passion- love, anger, pride, war, longing, sadness, desire. It has been my good friend.

We all need cathartic music to help us deal with our emotions.

Find your songs. Feel your emotions.

Monday, October 31, 2016

Empty And Full

Chemotherapy is a beast. Watching your toddler go through chemo is a different kind of hell. It is draining, to say the least. She has a calendar of her own to keep track of her multiple medications, appointments, and blood counts. We go through a lot of hand sanitizer and soap. We miss our families and friends and watch too much tv. We've cut our daughter's hair shorter and shorter in an attempt to mask the thinning but it's coming to a point where we will just need to shave it off.

Each time I have to hold down my screaming child while she gets poked tears off a little part of my soul. Each time I have to give my terrified child a shot myself tears off a big part.

It is lonely. It is hard. It is painful. It takes a toll on the whole family. My other daughter complains the screams are "breaking her ears".

The nausea, picky appetite, gloves for diaper changes, multiple Sharps containers, bags and boxes of medical supplies, confinement away from potential sickness, missed activities and parties, checking for fevers, the hospital stays.

She has a good prognosis and this should all be a distant bad memory one day. That's what keeps me going. But that's not the case for everyone dealing with cancer, and it wrenches my heart to think of those families.

The hospital staff and home health care nurses are wonderful. They care for the patient and the family. They never tire of my many questions and concerns. They are available for anything around the clock.

Family and friends pour out their love, prayers, and concern on facebook and through texts and phone calls. People rearrange their schedules to babysit last minute. Those who aren't sick and don't have anyone sick in their household stop by for visits. There is support from all around.

But with the love and support comes the dreaded question- "What can I do for you?"

Don't ask, I don't know what to say. Do I need you to do anything, probably not, so it's hard to answer the question.

Here are some better things to say or do.

"Would tonight or tomorrow be better for me to bring you a meal? I'm going to do it, so just pick."
"I'm going to bring you a freezer meal. Will you be home for me to drop it off tonight?"
"We're all healthy at my house and it's clean, can I take your other kids for a play date tomorrow?"
"What night would be the best for me to come babysit your kids so you can have date night?"
Give gift cards for restaurants, gas, and groceries.
Make a care package.
Send cards with a personal message.
Keep sending love and support even if they don't always reply back to your message.
Remember it's a long road, keep showing up.

You don't have to show up in person, just show up in genuine love and support. Thank you to all those who have made your love felt though you are miles away, and thank you to those who show up on our doorstep with open hearts.