Holiday Prep

Somewhere Fall happened when I wasn't looking. It is amazing how time flies by when you are not

on weekly chemo! The girls are happily decorating for Christmas and enjoying the fact that they can fully participate in festivities. Last year we were under house arrest or we were inpatient from chemo so we sat out on many things. This year Emma has already been to Disneyland, attended a birthday party, and been to church!

A few things have been happening in the background. We are waiting to find out which wish Gracie will get for her Make a Wish. She keeps asking me if we are doing it today! She is very excited. Emma got new glasses after we saw the Pediatric Neuro Ophthalmologist. It seems that her one seeing eye is getting better post chemo and we actually got to decrease her prescription! What a blessing.

Daddy and I have been running more races and working on getting healthy for this kiddos. His back is much better, he still has painful days but he is finally able to go to work and do yoga with me at night. I have seen a huge change for the better in myself. Not only do I look better but I feel better and that is a good thing because as I feel better Emma feels worse. She is really struggling with her emotions and hyperactivity. I feel so bad for her, she is so advanced she will say things like, "I am so grumpy and I don't know why!" It makes me want to cry. We are still waiting on Psych to see us at Stanford so in the mean time I have her deep breathe with me, do yoga, and apply her oils. Lately she has been asking to run with me so I am going to start taking her with me on a small loop at the

beginning of my run and drop her off to finish. If anything it will give her a good healthy outlet for all this energy!

Upcoming things: We go back to the Neuro Surgeon right before Christmas to check in and go over everything, he is the NF expert at Stanford. When we go we will be taking teddy bears from Trader Joe's to the hospital for all the kids who are stuck inpatient over Christmas. If any locals want us to drop off any new and unopened toys or jammies we can bring them for you! Next week I will be sending out the She's a Fighter Christmas boxes to Alanha, Adriana, Ariana, and Izzy. If anyone was planning on adding anything to their boxes please get it to us this week.

Normal or Not?

I spend many days pondering this question, is this "normal"? Am I seeing normal behavior from twins? Is this normal for a premature baby? Is this normal for a child who has brain tumors,NF1? Is this normal for a child who went blind at 2 years old? Is this normal for a little girl who underwent weekly chemo treatments for a year?

As parents we try not to compare. We try not to say what is normal and abnormal for a child and instead see the child on a spectrum. Ya, in a perfect world.

If I was a perfect mother I would never ask myself the normal question. But I am flawed and I ask that those questions above to myself several times a day.

For a child of her age Emma has been through so much. She has not lead an easy life. I argue with myself to give her room. But...

Life with Emma is not easy. She is easily angered and throws wild rages. She rarely sleeps and we have tried everything from essential oils to noise machines to light to no light to security objects. No matter what we try she is up several times a night. She turns on the lights, runs through the house, toilet papers my bathroom, empties an entire bottle of shampoo in her dry hair, and paints with toothpaste. I hide things and she finds them. We take turns getting up with her at night and directing her back to bed only to be met with an Emma rage at 3am. Now the whole house is awake.

I try to have her work out with me during the day and do yoga to center her but each thing I model and do with her I am met with fierce resistance.

So I spend my days asking, is this normal for a 4.5 year old? Will she grow out of it? Will it just get worse? As we wait for Stanford to get us into their Psychiatric clinic wait and pray and try to run off my frustration. I love this kid and the questions of normalcy just will not stop.

The Spirit of Giving and Receiving

The spirit of giving.

Ari of She's a Fighter turned 3!

In our home we do not tell our kids that Santa is a physical person but rather that he was a real person and embodies the spirit of giving. We use the story of St. Nicholas to teach our girls that giving is always rewarding and inspires others to do the same.

Sometimes things are given to us. This week we had an amazing and unexpected gift from a group of Mothers of Multiples. It came at a time when we were really struggling emotionally and physically from life just beating us down. Poor Daddy threw out his back and was in and out of the hospital and different doctors offices for meds and tests. He was missing work that he would not get paid to miss because it was a new job with no vacation saved up. I took that precious gift and placed it in our home safe for the end of the pay period when we run up short paying bills. That night I slept soundly knowing our needs would be met.

We also had Gracie's Make a Wish ceremony this week. I cannot think of any gift that would brighten her day more than getting to dream and wish BIG. She had so much fun talking about her favorite
things. Her three wishes were to, 1. Be Princess Sophia for a day (from Sophia the First) She said that meant going to a castle and having a tea party. 2. Seeing Cinderella's castle at Disney World. 3. To swim with Mickey Mouse and the gang on a Disney Cruise. So now we wait for the Make a Wish board to meet and pick which wishes they can grant. Typically they give the parents two options. We

will keep you posted!

Giving to others. This is something I really push in our home. We are constantly raising money for other fighters we know or sending them little cheer up gifts. Even if it is just sending the Chemo Mama some Starbucks funds, we know a little goes a long way! Each holiday season I have the girls individually give something to someone that is outside of our regular gift exchange circle. This year they have been helping me make and find special presents for the other four girls in She's a Fighter.

Celebrating 3 more months off chemo

Through out the last two years of giving to cancer friends we have occasionally been met with some resistance from others. Why are you helping that family? Aren't they wealthy? Now that is sad. Giving is not about NEED it is about LOVE. When we give to these other chemo and cancer families we are not asking for a W2 or passing judgment on what they chose to spend the money on. If they need food or gas and the money helps with those needs that is fine. If they money pays for Breakfast with the Characters to make a chemo princess smile that is wonderful. If it buys a pretty dress that brings a smile to the face of a child that constantly struggles with pain that is fantastic. If we only gave to those who are physically poor we would miss an amazing opportunity to reach out to those who are emotionally bankrupt. If you take anything away from this post I hope it is this, we accept gifts in LOVE and we give gifts in LOVE, no strings attached.

Now I hope that inspires you to give to others as well! This time of year Children's Hospitals are always in need of new and unopened toys for kids that are there on Christmas Eve and Christmas Day. For the last two years we were inpatient and were given a new gift. It actually made me cry both years because I saw Emma smile wide at the sight of a huge box of toys where she got to pick one. If you are local to us we are taking gifts from us and teddy bears collected from our local Trader Joes to Lucille Packard Children's Hospital at Stanford when we go see our Neuro Surgeon on Dec. 22nd. We can take anything you gather along with us. If you are not local I encourage you to find your own neighborhood Children's Hospital and drop off a toy or two, I promise that toy will get love!

Healthy Family Quest

Self care. I cannot tell you how many times loved ones have told me to "take care of myself so I can take care of the girls". Easier said than done! It is a slippery slope, the kids were up all night then awake at 4am. You stare at the half eaten toaster waffle and think, "sure, why not just have that for breakfast?". The kids are running circles around you, no time for lunch so you skip it. Baby is teething and refuses to nap so snack comes and goes with nothing of value in your tummy. At 3:00 you feel like you were run over by a truck so you reach for the coffee. Dinner is spent shoveling whatever you can into your mouth so you can get the monsters into bed. Life with three toddlers. I know it well.

Life is hard enough with three kids and then you lump in depression, severe medical issues, body conditions like PCOS and hypo glycemia and you know what you have? An overweight, unhappy Mommy Monster!

For about a year now Daddy and I have noticed that our Gracie is never full. She will eat and eat and eat until she throws up. At her last MRI we found a reason for this behavior, her hypothalamus is greatly enlarged. Combine Mommy Monster with the fact that one of my children will struggle with healthy portions and weight gain from something she cannot control and you need an overhaul. I needed to lead by example in healthy eating, proper portions, and exercise. If she grew up seeing me do it and it was all she remembered maybe she could avoid a life of weight struggles.
We went into Emma's next MRI and Daddy threw his back out, he was literally crawling to the car for me to take him to the ER. They told him he was over weight and had a herniated disk. Enough was enough. So I joined Beachbody.

Why? So many reasons. In your 20s you can "fake it to make it" with your weight and eating habits. Then 30 hits, three kids are born, and the game changes. Life doesn't stop when you have three girls in 20 months, it was hectic. Then the word no one wants to hear, CANCER. My baby had cancer. Suddenly the world spins with doctor appointments, MRI tests, drugs, surgeries, and tears...so many tears. Two years later Gracie was diagnosed with brain tumors as well. After this I couldn't handle my emotions on my own and went on antidepressants. The irony in antidepressants? You feel better emotionally but they cause you to gain weight in all the wrong areas leaving you depressed about your body. A little weight gain never bothered me before, I could just run it off. But now in my 30s, depressed, chasing three toddlers through a hospital I was unhappy about my body. It had betrayed me. First it couldn't handle the stress of cancer and now it gets fat. Body hate. I needed an outlet so I started running, pretending I was running from the cancer, the
needles, the medical debt. I loved it but I hit a wall at the 5k mark. My body would just collapse. I knew I needed to cross train and make food work for me, not against me if I wanted to get to my goal of a marathon. So I started Shakeology and joined a 21 Day Fix. After only one week I ran a 10 mile race and after two weeks I had lost 3.5" and was back in my skinny jeans. But the best part is I had energy, my crazy coffee cravings lessened, and I was happy. For the first time in two years since Emma's diagnosis I was happy.

If you want to follow along in my family's journey to being healthy you can follow me on Instagram (anyaheidenberg) or my webpage,
www.beachbodycoach.com/anyaheidenberg. I am only going to post on our blog and Facebook page ever so often so we do not annoy any of you.

Stable

The day started and ended with tears.

I stood in the kitchen, back to the entry clutching my coffee that was catching tear after tear. My husband was lying in bed unable to move from a herniated disk and I was waiting for the doctor offices to open at Stanford. The MRI on Friday seemed light years away. The last few days had been a blur of doctor visits.

Low point.

My friends call me SuperMom because I do it all. Alone. No family near by to lend a helping hand or do a grocery run. Just me and a husband who normally works long hours but is now out of commission and a dear friend who helps way more than she should. Amber comes when she can but 99% of the time I do these appts alone with at least two of our three children. The thing is, I do not feel like SuperMom. I feel like an empty shell of the human I used to be. At times I gain some of who I am back. In down times of meds or when Daddy has a holiday off. As I ran the 10 mile Serena SF run across the Golden Gate Bridge two weeks ago I saw a glimpse of her. The woman I want to be. The woman that aggravates an old ballet injury in her hip on the second mile climbing up what can only be described as a "baby mountain" but says, "I will finish what I started." Then she crosses the finish line.

The day started in tears with me wondering who I am and if I can handle all of this mess. After a few hours my calls were returned. Clear scans...stable...made the right choice. "I am sorry, what? Can you repeat that?" Then the Oncologist said something that will ring in my head forever, "You are stable. You made the right choice to pull her off of Vinblastine." Tears.

The day ended in tears but this time happy tears. I was right. I had been right all along. She was stable now. I could breathe.

This is not the end. Emma will still be monitored every three months for the foreseeable future. There may be more meds and there most definitely will be more surgeries (next one in three months on her blind eye) but for now we are free. Free to enjoy the holidays with no meds. Free to train for my marathon and go to Disneyland and be a normal family. Freedom means so much.

This week was rough. It taught me some valuable lessons. First, that I am capable of pushing beyond my limit. Second, that some people will never come to help no matter how bad things get. I need to

let that go if I want any type of relationship with them. Third, being a single mom SUCKS. Hats off to Amber who does it alone (but not for much longer! Congrats on the engagement!)

What is next for us? Well Daddy is off work for a week with no pay. Awesome, right? I am trying to host shows and sell things to make up the difference so I can still pay bills AND get Christmas presents. If anyone wants to order Matilda Jane for the blanket promo please do through us so my girls can get some goodies for Christmas! I will be starting a new home business this week as well to try to make some income from home. I know what you are thinking, "Does she have the time for that?" No, no I do not but do I have a choice? No. I am going to just do something for income I am already doing anyway so I will be a Beachbody Coach. If anyone is interested please contact me for info, if I can do it with all my craziness you can too! Last, and the most fun, we will be throwing Emma another No More Chemo party but this time she has requested Anna and Elsa themed. We will only have a couple friends over and all handmade since we are low on funds but I am Pinteresting away with Emma to come up with something fun!

Before I sign off a HUGE thank you for all your prayers and thoughtful messages of concern during this time. It means so much. I know you do not see this side of it but it usually makes me tear up and smile that someone cares so much. We love all of you and are so thankful you are on this journey with us!

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.

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.