Monday, October 19, 2015

Break the Silence

All mothers, especially mothers who stay at home and homeschool, have "those" days. The days where you find yourself thinking, "I love you but I sure do not like you right now." or "why are my kids being jerks?" Guilt sets in right away for even thinking those things. The children I prayed for through all those years of infertility. The children I fight for daily to have a better childhood then I had and two loving parents who are present in their lives. These precious gifts from God.

Then Emma steals her baby sister's cracker and hides it in her shirt lying to my face. Do not tell me there is no such thing as original sin!

Life with three little girls is hard. Add in PTSD from chemo trauma / surgeries, NF related behavioral issues, and the fact that there are TWO of them and you have yourself a really good party. Lately this party gets started between 2 and 4am. Emma wakes up and begins to wake the entire home by turning on lights, yelling "good morning", and demanding pancakes. Try explaining to a four year old with trauma that 2am is not the time to party and you will feel like you are hitting your head against a brick wall.

Brad and I have noticed that these hard days are happening more and more. The home dynamic is becoming nonfunctional. The girl's have an NF specialist at Stanford that says these issues will only get worse and not better so we are getting the girls into behavioral intervention.

Why am I sharing this? These past few weeks I have felt so alone. An island of suffering with no one who understands. I think there may be more of you out there with NF kids facing similar issues but embarrassment prevents you from speaking out. To be honest, I am embarrassed too. I have one very well behaved child, I can take her anywhere and she will sit and play and be sweet. My twins on the other hand, you need the patience of a saint! I am sharing because I hope to connect with some other NF parents or adults and pick your brain for ideas to help the girls and our family. Please break the silence.

Saturday, October 10, 2015

2 years

2 years ago at the pumpkin patch
Two years. Half of Emma's sweet and short life. This week marks two years since we first discovered Emma's issue with her eye. It was a normal day, we took the girls to a local pumpkin patch and I was taking pictures like usual. When we got home Brad mentioned that one of Emma's eyes was drifting off in a few of the pictures. He was right. I made an appointment with the pediatric optometrist expecting to come out with eye patches and a possible surgery date to correct crossed eyes. Instead we left with strict orders to report for an MRI. He saw a tumor. That is when everything changed.

I am not the same person I was two years ago. I morphed into some kind of superhuman that runs on coffee and prayer. I know weird acronyms like ANC, I know what size needle Emma's port takes and how to access it properly, I now huff as I fill out "health history" reports on paperwork for Vacation Bible School and new doctors. I carry hand sanitizer. I live appointment to appointment. In downtime I still hold my breath and pray for no more bad news. Pills, pills everywhere. Mostly for Emma but now some for me. The person who took pride in diet change and essential oils to help nearly anything now takes daily medication for conditions related to stress. Your heart can only take so much, this I know to be true because now I take medication for my heart.

You never think it will be your child. It seems too horrific to imagine that your child would look like those St. Jude's posters. Then one day when you are holding a chunk of hair in your hands that came
Last year sleeping off chemo
off her head the horror of it all sinks in. Your life has changed.

You long for the day when it will be over and you fight as if there is a finish line. But the sad reality is it is never over. Emma is on her first break in 2 years from doctor visits, we start again in a couple weeks. Has this felt like a break? No. When you are strong because it is your only option your body and soul is worn down to the point that when you get a break all that happens is you realize how horrible it all was and have an emotional breakdown. I have said in both a teasing way and a truthful way that I might need a stay in the "loony bin". Honestly, if these three didn't need me so much I would have checked myself in a long time ago.

Two years. My life has been turned upside down for two years. It is all Emma remembers and that makes me so sad. She tells everyone, the person at Target, the lady in line at Trader Joe's, "I have a port but I don't go to the doctor anymore." For now...what if this all starts again? I shudder to think if Emma and I have to go round 2.

This week
The reality is Emma and I will never be the same. We walk this earth with both physical and emotional scars but I try to see that as making us more beautiful. Just like a war veteran has a story to go with each scar we do as well. We have a story and it is epic and it is ever ending.

This week I was building a Pinterest board for Gracie's Make a Wish. She has lower verbal skills then Emma so I thought a visual display of her favorite things would be helpful to the wish granters. We came across a quote in our search, "Even miracles take a little time." The Fairy Godmother said that. I believe that it is true. God is working in our lives and even His miracles take time. Until then I run on coffee and prayer.

Thursday, October 1, 2015


I have said for years that I did not believe in Karma. Can you blame me? No mother of a child filled with brain tumors wants to think somehow that was put on her for something she did in the past. How horrible. However, today I was chatting with another mom who is in this battle and said that I do believe in a smaller form of Karma. The kind that if I invest time and energy and resources into this extended family of childhood cancer and tumors that it will come back to me. Not always in the way that you expect but it is always just what you need. Some how we survive and I truly believe it is because of our Faith in God and our help from kind people.

Katie and I daydreamed up this plan to run the Disney marathon for a group of girls. That morphed into a conversation about how terrible the holidays are for families going through chemo and hospital appointments back to back. For two years our holidays have been taken over by brain tumors. It sucks. It is not a normal Christmas at all and it comes and goes but leaves this feeling of being "robbed". Last year I tried really hard to have a good Christmas for the girls. I started making and finding presents months ahead of time and set up fun activities for the whole month of December. We did have fun but we were alone. No family at all. That stinks.

Well not this year for our six girls. This year we designed an online auction to raise funds for these girls to have a happy Christmas, whatever that means. If it means toys that the family could not regularly afford because of high medical bills then it is toys. If it means a family outing that would normally have to wait for funds then it is that outing. If it is flying family out to the hospital to spend the holidays together, even if it is as a hospital, then it is for flights.

I am so happy to help these other girls! You may have noticed that both of our twins were in the auction, I did that for a reason. Gracie has her own set of tumors and challenges that earned her a special Christmas but I also wanted a little funds to let the girls play St. Nick to other kids. Emma, Gracie, Cora & I will be buying gifts or necessities for other friends that we could not get in the auction. If you know of a child who needs Christmas cheer, maybe he is inpatient in the hospital, maybe she just lost all her hair from chemo, or maybe you know another family with multiple sick children like ours. We want to hear about them!

Thank you for everyone that donated, played admin, and won items. It was certainly our smoothest auction, everyone paid on time and we had very little drama! Let's hope that continues as we get all these items mailed out!