Amanda

I might be one of the only people ever who is constantly shocked by the death of childhood cancer warriors. Call it optimism, call it survival...call it denial but I always believe they will pull through. I have visions of these children beating cancer and becoming doctors who find a cure, lawyers who fight for more funding and protect the kids, nurses who know from experience how to care for the sick, writers who inspire others, and parents who know how to help a child in pain. I see them go to prom, graduate from high school, and traveling the world. I envision that this time of medicine, hospitals, and pain as only a tiny part of their life story.

Then I get the call, the Facebook message, the status change. She's gone, in the arms of Jesus, out of pain. We have so many phrases to avoid the word we do not want to say...dead. Cancer took her. I try to remind myself that these lives, although shortened by cancer, had a huge impact. That they inspired, that they loved, that they raised awareness and funding to find a cure. I tell myself that she is with our Creator and resting. I tell myself this but it does not ease the pain. She's gone, cancer took her.

Now I glance at my cancer fighter and tears well up again. The reality that this can and most likely will happen to her someday. I cannot bare the thought. Cancer is not for the faint of heart.

Today a sweet friend of ours left us. She was an inspiration, a ball of sunshine. She would post cute little comments on Emma's page and her smile lit up Facebook. Her mother is gentle and kind, always willing to give advice and prayer. When I saw that she passed away I was totally caught off guard. I knew she was sick but somehow I thought she would pull through. I thought this most certainly was not the end. But the end came.

Cancer never gets easier. I feel like we are constantly sprinting up a steep hill. Even if we beat this I will always wonder if it will return.

This week Gracie has her MRI to determine if she has cancer, another brain related issue, or both. Amanda's death today makes it even harder to march into the halls of Children's tomorrow. Please God, spare Gracie. On Wednesday join us in prayer for her at 11am pst and please say a prayer for Amanda's family today.

Rainbows in the Storm

Lately I have been on a quest to create joy and normalcy in our chaotic lives. It is not easy to maintain a sense of normalcy when you have a kid with cancer. Life revolves around doctor appointments, sick days, well days, grumpy days, bad immunity numbers...You have to just go with the flow. I want to be happy, or at least I want to try. I started running and that helped a lot. I started sewing and that helped even more. I threw myself into the garden and creating an Outdoor School for the girls for this summer and that helped a little more. Sometimes when you cannot change the cards you are dealt you just need to reshuffle them and create a new order. So far our new order is making a happier Mommy and energetic kids.

This weekend Emma's auction wrapped up. I went into it hoping to do as well as Arielle and I did last year but honestly my expectations were low. I fully anticipated a flop. Not because we were not prepared, not because we did not have an awesome admin team...just because lately that seems to be the theme. Flop. Well it didn't! In the middle of our storm rainbows appeared everywhere. When the sun refused to shine dozens of women rushed to bring their own sun to us and the result was rainbows, so many rainbows.

Although the amazing amount of money we raised cannot buy Emma's way out of her cancer or chemo treatments it can pay for gas, food, living expense increases, babysitting so Mommy can catch a break, busy work for long car rides / hospital days and peace of mind for Mommy and Daddy that if a bill falls through the large insurance coverage cracks we have the funds to cover it. To give you an idea, last year we raised $1k and that was seriously impressive considering Arielle did almost the entire thing by herself! (she is a rock star). This year we did much better! What an immense blessing! When I told Emma that we had all this help now our little giver asked if we could get a present for her friend. What a pure heart! The answer was, "Yes! Of course we can!" What is the present? In three months from now we will run a similar auction for another warrior who needs help. So stay tuned for round two and if you know a child fighting a chronic illness in need of financial help let us know!

To the admin ladies, I cannot thank you enough for your time and energy in this auction. It would not have been possible to run this solely on the brain power I have left! It means so much to us that you took time to brainstorm, work the page, contact donors, organize addresses and so much more. We love you!

To all the donors, our hearts are full of the love you shared by you offering your handmade goods and treasures. We are so greateful for your giving hearts!

To the bidders, this helps us more than you may ever know. A part of the financial burden is lifted and for the first time in a long time I feel like I can breathe!

But if not...

Darkness closes in, all consuming, all surrounding darkness. I will fully admit it has been rough lately. To have one sick child is a nightmare, to have a second...well, there are no words to describe the despair. About a month ago my friend sent me an audio book to listen to on the way to chemo. Each week I popped a CD in and listened to an inspirational cancer survivor tell me how she found Joy even in the midst of cancer. Through her journey I have learned what Emma must be feeling some days but cannot communicate it to me in any way other than a whimper. She accurately describes the dark feelings, the loneliness, the pain, the sorrow. Things she says hit home for me in so many ways.

On Monday she was talking about a story we are all familiar with from VBS or Sunday school. Shadrach, Meshach, and Abednego. They failed to submit to the king's demand to worship him and instead clung to God's promise to protect. They were thrown into a firey furance to die a horrible death. Instead God met them in the furnace and saved them. God came to the rescue. They went into this death march saying, God can save us. But if not...

But if not? God can save you from death and danger but if not...then what? You praise Him still. The thing about those three brave men is they were saved, from death. However, they were not saved from a life of working for a mad man who once tried to kill them all. No, they will live out a life on the edge always wondering what will set him off again. They were saved by the miraculous hand of God but it did not solve all their problems. Yes, God could save us but if not we will still praise Him and cling to His promise to protect and provide.

This week as I pondered "But if not" I set out to do an online auction for Emma. A month ago when I was planning it with a group of an amazing women we hoped to repeat how well we did last year. We wanted to give Emma as much support as possible in her account to pay for all the expenses that pile up. Then Gracie got news that she was entering the battle field. Suddenly my need for this auction to do well multiplied. God heard our cry for help. The auction is still open for a couple days and we already tripled what we did last year. The blessing of these funds means so much more than anyone can imagine. It means we will not have to worry as much and we can focus instead on Emma and Gracie's health. If you have not had a chance to visit the auction yet please do, so rarely do we get a chance to witness God's provision in such a tangible way. It is truly a miracle. She's a Fighter

It Means...

"It is always darkness before the dawn." In my life I have found those immortal words to be true. The only problem arises when you cannot find the darkest point. You think you hit rock bottom but another thing comes along.

Gracie's MRI is June 24th. I know you do not know what to say. I am also at a loss for words. When Emma was diagnosed with Neurofibromatosis 1 we knew that her identical twin would share the disorder. We also knew that Gracie had some complications at birth that may come back to her at on older age. The fact of the matter is Gracie could very well end up with brain tumors and challenges related to her birth. Why now? Every doctor we talked to about Gracie wanted to wait until she was at least 4 years old to test her further. So here we are, three kids...one with cancer that has no cure and one entering the hospital for her own battle.

What does this mean? It means that I will be at the hospital twice a week with Emma for chemo and occupation therapy. It means I will also be at a hospital or other facility at least once a week for Gracie's rehab. It means Gracie will also visit the Genetics Specialist, Oncology team, and Neurologist. It means that if Gracie has brain tumors two of our three kids will be fighting the cancer dragon. It means we will live in hospitals...even more so then now.

How will we do it? I have no idea. No really. No idea. I have no game plan. I have nothing. I just know that we will need help but until Gracie is diagnosed I am not sure how much or what kind. Until June 24th I am staying busy trying to raise funds for the loads of more medical bills to come. We have the She's a Fighter Auction starting on June 1st. Once that is over I will be opening a small boutique for the dresses I have been making. All the profits will go toward gas, babysitting, and house cleaning.

Some of you have asked how you can help. I wish I knew. My request is to use your best judgement, if you feel you can help in someway then we accept. We still ask that if you run a fundraiser you get approval from us first but other then that the answer is yes, we accept.

I really hope this is the darkness before the dawn...

Please Excuse My Mess

Run it off

You may notice that Mama here is messy. I will not apologize for it or make excuses either. When I found out Gracie will have a battle as well, that I might have TWO kids with cancer my world shattered again. Not enough Mommy to go around. Normally I have more patience, normally my house is a little more clean, normally my gas tank is full and my car sparkles, normally I have showered and put on make up.

But this is not normal. I might look like a Mommy but I am skin and fried brain held together by caffeine and prayer. I have been pushed way past my breaking point. 

This week I was hit by emails, blog comments, Facebook messages and thread comments offering prayer and love. It was so heartwarming to know that as we pick up a second sword to fight a second dragon we have an army at our side. I cried tears of gratitude as Mamas with their own battles offered to help or sent love. I laughed as friends tried to cheer me up with funny memes on social media. I sat in prayer with CDs and books that loved ones have sent to me over the last few months about finding Joy in sorrow. The outpouring of love was amazing.

Along with the good always comes the not so good. I keep reminding myself that 90% of the time people have good intentions and not to take things personally. However, there are specific cliches and statements that seriously offend mothers of cancer fighters. Mostly I did not respond to these this week out of fear of being rude and or sarcastic. Things in writing cannot be taken back, I took a step back and let it alone. 

Some of you may not know these hurt so badly. So please excuse my mess as I try to talk about my frustrations. I may not be eloquent but I am going to try. I am not targeting anyone specifically, please remember how public our fight is and we receive many comments on many forums throughout the day. 

"God doesn't give you more than you can handle." False. If it were true there would be no foster kids because their parents could handle them, no rehab because no one would be self medicating with drugs and alcohol, no suicide because people would know they could handle what cards were dealt.

 "Be strong" or "Just keep going." As if I have another choice? This phrase makes me feel like I have to be perfect all the time. No, there are alternatives. Instead tell me to be mad, rip an old shirt into a million pieces, break plates, scream into a pillow, go for a run. Tell me to lose my shit and feel the pain. If I am "strong" all the time I will break beyond repair, we need to let grief out in productive ways.

Here are great things to say instead.
"Oh crap, I'm sorry!"
"So not fair!"
"Can I help?"
"God helps you handle what you've been given, turn to Him."
"I am praying for you."

While I am on the subject please no more stories about people you know that died of cancer or NF. I try not to think about the fact that most likely I will out live two of my three kids...I don't need reminding.
 

Thank you to everyone who rallied this week to support us. The people who selflessly gave of time, energy, and talent to help with our online auction. We are so thankful for the outpouring of love. When the dust settles we will certainly return the favor but for now we are a mess and really do need the help. Please keep offering, I have a hard time asking for help.

Extreme Parenting

Micro preemie baby = hard, twins = super hard, Neurofibromatosis kid = difficult, 3 kids in 20 months = nuts, cancer kid = heartbreaking. Put all those together and what do you have? Me. I call it Extreme Parenting. Just like an Extreme Sport there is an element of danger, your life is on the line, and others look at you like you are taking crazy pills.

Today I added something to the list. About a year ago Brad and I started talking about getting Gracie some type of therapy to help with issues she has had since birth. I put in a referral to our family doc but the local specialist was booking months into the future. 8 months later we finally saw the Neurologist. Just as we suspected Gracie has something going on that requires attention. We will not be disclosing her diagnosis just like with Emma's specific type cancer. We do not like labels and people tend to jump to conclusions about quality of life and life span range. We are not sure yet if her issues are related to her condition at birth, NF, or another disorder. He ordered an MRI which will tell us which dragon to fight.

I fear the MRI. Night after night I am visited by fears of having two of my three children in the Oncology dept. Or the other fear is Gracie has a whole different dragon requiring an equal time investment to Emma...time I do not have.

When we had infertility issues I prayed to God for children. I pleaded with Him to send us a child. Back then I never imagined I would end up with such Extreme Parenting. Although I love our children with all my heart and would still pick them in a line up of all the children in the world I wonder...will this be what breaks me? Can I handle another issue? But most of all, why God? Why me? Why us?

Please pray for us as we fight Gracie's new battle as Emma's war rages on in the background.

Run Away

First run of our training, ground zero.

I believe there are only two reasons why women run, 1. Toward something or 2. Away from something. They might be running toward prebaby weight or better health which is the most common. There are a select few of women who run away from things. I am not a runner. In fact, I usually say that if I am running you better as well because I am running for a good reason like a from a bear or zombies. However, when life becomes dark I find myself grabbing a pair of running shoes. I huff and puff and curse under my breath but when I am finished with my run I feel so much better. It is the good kind of hurt. Maybe it is because it is because I am imagining I am running away from my problems.

When Emma got sick I did not run. It was the first time that instead of turning to my sneakers and the outdoors I closed the door to hide inside. Now that I have help for my depression I am searching for outdoor activities to lift my spirits. Emma and I do a lot of gardening but I needed something just for me, something quiet...something with out kids.

So I became a little crazy and signed up for a half marathon. Have I ever ran 13 miles? Nope, never. When I was running before Cora was born I was running 2.5 miles and loving it but this is a lot further. Emma's battle has taught me to chose memories over items and to start crossing things off my Bucket List. Right now I cannot pick up and go to Europe but I can train for a Half Marathon.

The first day I set out with Cora in the double stroller and made it a mile and a half. I think I could have kept going but I am starting slow. I am calling that day ground zero. By October I hope to be well within the qualifying time. 

So this January a team will run for Emma to raise money for childhood cancer. We are hoping to run for St. Judes but the charities have not been announced yet. I am asking you to join me. Join me by running with us, join me by cheering us on, join me by helping us to raise money for the team to donate to the charity. I ask you to reflect, do you have a reason to run?

If you would like to join our team we have a secret group on Facebook to chat and support each other, contact us by email or on Emma's page if you would like to join, throughemmaseye@gmail.com