"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...
Monday, May 25, 2015
|Run it off|
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.
Friday, May 22, 2015
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.
Thursday, May 14, 2015
|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, email@example.com
Sunday, May 10, 2015
I was talking to a friend recently about miscarriage and told her to give her friend my info and I would help her though it. She remarked how strong I am to think of others when I am going through stuff myself. That text made me think...why am I compelled to help others? I wrote her back something like this; I have had a rough life, a lot of suffering was involved. I cannot change the past and I cannot control the future but I can help others through their trials.
Did you know we suffered from infertility and loss? We did and it nearly broke my heart.
I always planned to be a mother. Watching my parents go through marriage after marriage and nasty divorces I never thought I would get married but kids were always a part of my plan. I told myself that if I was not married by 30 I would adopt a child. I didn't plan to set aside all my plans for a Prince Charming...and then I married my high school sweetheart. Two young lovers eagerly hoping to get pregnant. Nothing should have prevented a 21 and 22 year old from conceiving quickly but month after month, year after year nothing happened. I sat in an infertility clinic at 25 years old looking around at the gray heads near by. I had no business being here, it wasn't fair. Each Mother's day I cried and stayed home with a batch of cookie dough, 80's comedies and jammies. Then a year later God gave me what I always dreamed of, a baby...x 2. Overnight I was a Momma to TWO babies. Two fragile, NICU, micropreemie angel babies. A year later we were amazed to be expecting another baby. After doctors told us we would never conceive another a sweet little one worked his way into our hearts. Then a couple days before my first Mother's day as a mother River passed away. Thankfully a few months after his death we conceived Cora and she was a perfectly healthy, full term baby.
Emma wasn't just wanted, she was deeply and prayerfully and desperately desired. She and her sisters were an answer to my cry to God. When Emma was diagnosed with cancer my heart broke into a million pieces. It is still there, just broken and the pieces are forced together with coffee, prayer, and love. It is not fair. Why us? I never will understand how cancer picks it's people. It happens so randomly but I can say for sure that Karma is bogus. If Karma was true Emma never would have had cancer.
As hard as this journey of motherhood has and will continue to be I am so thankful that God answered my prayers. If He had sat me down years ago and said, "I can give you children but one will have cancer" I would have looked right at Him and said, "I will love her." Emma was the first baby I held who was mine to keep. She looked up at me with those deep brown eyes and she had me. Forever I am grateful that I have little girls who call me Momma.
To honor Emma, raise money for St. Jude's, and destress this gal we will be running the Disney Half Marathon in January. If you are a runner, if you like a challenge, if a half marathon was on your bucket list too, or if you are also just a little crazy...JOIN US! More info on it's way but if you are interested in running with Team Emma in January contact us by email or Facebook and go to this link for more details. Disney Half - Star Wars
Friday, May 8, 2015
May is a big awareness month in our household. It is the month we push to create more awareness and funding to find a cure for both NF, Neurofibromatosis, as well as brain tumors. I do not write too much about Emma's twin Gracie on here but she also has NF1. For those of you not familiar with NF it is a genetic condition or mutation that prevents your body from recognizing that tumors are a bad thing. Without this filter your body begins to grow noncancerous tumors. Usually this is not a huge issue and some people can live a long life before realizing they have this concern. However, for a group of NF people they suffer greatly. Tumors grow in their brain, down their nerve pathways and on their skin. They cause seizures, deformities, blindness, deafness and debilitating pain among many other issues. For the group of kids that show severe symptoms at a young age it is a battle so fierce that I dare not think about it.
Our identical twins are on opposite sides of the NF spectrum. On one hand you have Gracie, she displays the typical NF1 symptoms of cafe au latte spots, behavioral difficulties and bowed legs. She goes every 6 months to the Genetic Specialist but just needs basic monitoring. Emma is all the way on the other side, rare wrapped in rare. She falls in the less then 10% of NF1 patients to develop cancer, she already went blind and she suffers nerve pain (not sure if it is NF related or chemo related).
NF runs the whole spectrum. It is very important that we find a cure and soon. If we can develop a medication or treatment to help Emma's body realize tumors are bad we can give her a long and full life once we beat the cancer. Many of you have asked me, "when is this over?" or "when is her treatment finished?" I usually dodge the question. Why? Because this will never be over for Emma, ever. She will be heavily monitored her entire life. She may beat this cancer only to be hit with a bigger cancer in a few years. This is a lifetime battle, one that cannot be won here on earth. This is why we push for awareness. This is why we need a cure. Please join us this month in sharing about NF and creating brain tumor awareness. Paint your social media GRAY and explain to loved ones why they should care.
You have our permission to share these images on social media as long as the watermark is not removed and you do no fundraising on our behalf with out our permission.
Speaking of fundraising, we have two events coming up. A community garage sale in Modesto the 4th weekend of May and an online auction June 1-7th. She's a Fighter Please contact us by email with any questions or donations, firstname.lastname@example.org.
Monday, May 4, 2015
The next day Auntie Amber came in the morning and we got to play with Sam and Annie at Disneyland. Once again Emma lasted just a few hours then needed a break so we met family for lunch at the Rainforest Cafe and took Emma and Gracie to their Grandparent's house for some quiet time. Mommy, Daddy and Cora returned to the park for the parade and some shopping to get surprises for Emma. On Sunday we had a small
|Emma & Uncle Nico|
It was a really fun visit. It was so nice to see Emma happy and enjoying life. If anyone with a cancer kid is reading this here are some tips that made the two days happy for her and easier for us,
1. Check in with Disability on Main St. before doing anything else. If you child is under 5 I suggest bringing a stroller and having them put the "stroller = wheelchair" sticker on it. This allows you to go through the wheel chair exits and shortens your wait time to 2-15 minutes. Some rides we just carried Emma right on with no wait!
3. Have a stash of busy work and favorite snacks on you at all times. I am so glad I packed a backpack just for Emma with food. It would have been a nightmare to stop and wait in a line every time she was thirsty or hungry.
For everyone else with a young family thinking of a trip to Disneyland as a vacation here are some worth its and skips,
Worth it: An $8 balloon. No seriously. That silly Mickey balloon kept the girls happy for TWO DAYS! Disney Photo Pass, it is a card that you get and each time you see a Disney person with a camera you have them scan your card then shoot. At the end of the day you log on to a site and you can pick the pictures you like and have them downloaded (for a fee). These photographers will also take pictures with your camera but if you are like me you are not going to chance your nice equipment getting damaged at Dland! Magic Hour, when you stay at one of the three hotels you get into each park an hour before opening. SO COOL! The park is nearly empty! The princess meet and greet. Wait in that line, once you are in you get to see at least 4 princesses one after another and the room has air conditioning. Bippity Boppity Boutique, do it! Just buy your dress ahead of time and have your daughter wear it in then do the small package and it is totally worth it! We did the tutu / shirt upgrade and I do not regret it at all but I kinda wish I had bought dresses before. Last, see a parade and get a front row seat. The characters come up to you to say hello.
|Bippity Boppity Boutique|
Our trip was amazing. So many happy memories and so much fun! I have a feeling that Emma will be talking about this trip a lot, it made a big impression on her. We are so glad this vacation finally happened, I guess third time is the charm!
My last thing to say about the trip is this, never take for granted that Emma will be here forever. We are so thankful to Uncle Nico, Aunt Amber, Grandma and Grandpa and Bethany who made an effort to see Emma on this trip. We treat her as if she will have a long and happy life but the reality is you should get your memories in while you can. Please make an effort to move other life events around so you can be at birthday parties or Disney visits. It means so much to Emma but also makes Mommy's heart happy to know that you had time with her while she is healthy as possible and able to see you.