A year to reflect...

A year to reflect,

Over this past year there has been more pain and hurt than I have experienced in my lifetime. I have lost a few friends and family members in my life, seen really sick people-but nothing and I mean nothing compares to watching your child suffer for months and months from a horrific disease like cancer and dying at too young an age. But I really am a glass half full person and I can't help but try and see the positives in life. Mary was that way too. Everywhere I go I see her positive influence. She could see the bright light in a dark world. She was and will always be my blessing and my forever miracle. Maybe she didn't survive this disease but she did defy many many odds along the way.  And her lone existence was nothing less than a miracle. She taught me so much. If you ever had that little bathroom book with all those life lessons in it, it reminds me of the types of things Mary would have taught us. So I have compiled a list for you. Then I have compiled a list of things I have learned along this journey. Some of these "life lessons" may also be in this book. I didn't intentionally copy. Maybe the author had a similar experience as me. Smart person. I believe you can choose to continue your days on this planet being a sad and miserable human and feel you were dealt a shitty hand-or you can take control and make the most of what you have. And you can find the rainbow after the storm. Trust me I have days that feel like the storm becomes the hurricane, and then the flood, and then the blizzard, etc. etc. But the truth is no matter what...nothing good or bad lasts forever. 

Mary's Life Lessons:

Don't miss a fun moment.

You can sleep when you die.

Dance like you don't care who is watching!

Wear pink and purple and blue and 

whatever you like together;) Create your own style.

Be kind to everyone!

Put others first!

Smile often.

Sing loud and proud.

Question life. You don't have to follow the ordinary path. 

Try everything once.

Travel if you get the chance.

Make new friends.

Be a friend to those that need one the most.

Stick up for the underdog.

Sisters are your best friends.

Brothers give the best hugs and kisses.

Hug tight and kiss on the lips.

Love God with all your heart and all

your soul.

See the beauty in everything.

Run at full speed.

There is something nice to say about everyone.

Soak in every drop of happiness.

Keep your eye on the prize.

Laugh at yourself.

Laugh often.

Be an individual and never apologize for who you are.

If you are a little quirky, embrace it! You will stand out.

Be a leader. And a positive influence. 

There is much more but these are just some of my favorite 💗

Lessons I have learned:

If your kids are driving you crazy, take a second to breath in and be thankful for the crazy.

Don't rush life. One day you will want it to slow down.

Count your blessings everyday.

Life is short-make the most of everyday.

Forgive easily. One day it might be too late.

Say what you want to say,  and say it when you want to say it.

Don't live with regret.

Live in the moment. 

Say "I love you", mean it and say it as much as you can.

Some things are out of your control and you have to accept it.

Don't live in the past but focus on the future.

If you have healthy and happy children you have everything. 

It IS the small things that count.

Material things don't bring you happiness.

Teach your children to have empathy for others.

Find a cause near to your heart and work fiercely to make a difference.

Slow down and make lasting memories with your family. 

Celebrate the special moments.

Celebrate your child's individuality and let them express who they are. 

Encourage your children to be caring and kind and giving. 

Let kids be kids.

You can not spoil your children by hugging them too much, kissing them too much or sleeping with them too long. 

They actually enjoy it when you embarrassed them a little in front of

their friends ;)

Get involved in their life. 

Bake and craft together. 

Housework, cleaning, chores and cooking can wait....listen and communicate with your child.

Have meals together as a family. 

Just always be thankful. There is always something to be thankful for.

Always.

As Mary's "heavenaversary" approaches so does my anxiety. Being that September is Childhood Cancer Awareness month it doesn't help. I am trying to stay positive and grounded. Thank you for your continued prayers and support and love to our family. And most of all understanding. Again, if you want to honor Mary on September 2nd you can visit the cross in our backyard and pray or leave a special message, visit the beautiful "Golden Garden" at RUMC or just send up a

ballon and/or wear a shirt in her honor. And you can always give to our fund in her honor that we will use to fight AML.

http://curechildhoodcancer.kintera.org/faf/donorReg/donorPledge.asp?ievent=1164142&lis=1&kntae1164142=904AA4AA5CD848D88D2C937BECDF218B&supId=425394591

Was the party a success?...

Was the party a success? 

The NINJA party, I would say, was a success. It came together and I think it met all of Whit's expectations. He didn't have a lot of expectations. He wanted his party at home. He wanted Chinese food, because ninjas originated in China (google it). He wanted a homemade cake with Lego ninjas on top and his closest friends there. He wanted to borrow his uncles "real Samari sword" because he said real nerds have those and Uncle Kendall apparently has 3! Ha. Love you Uncle Kendall. And if you are a nerd you are a totally cool nerd!!!

I spent the last week preparing and adding extra things to Whit's list to hopefully make it even more special. An amazing waterslide was ordered, we ordered ninja masks and swords, a ninja piñata, I drew tons of ninjas, and an Asian dojo, and copied Asian writings. Real Asian take out boxes (it helps when your husband's company makes these) for goodie bags were gotten. The suspense was building and all seemed great until the cake and brownies were a flop the night before. I went to bed sad and depressed and feeling like the party was ruined because I couldn't come through on the cake. But I woke up the next morning and with Steve's help I realized a cake can be bought and it all really will be ok. And it was. No matter what we do nothing will take back two years of missed birthday parties. And a cake mess up  is part of the small stuff that we can fix. 

It WAS a good day. Emotional in some ways, stressful in many ways, but to hear several "ninjas" say it was "the best party they have ever been too!" and to see the big smile on Whit's face-made it all worth it. Tomorrow is his real birthday and his last request is to have a family breakfast at Waffle House before school😝 So that is what we will do. We will miss Mary and prepare for her "Heavenversay" this week but we also know in our heart that she was here enjoying the day with us. And that she is always proud of her brother and sister for moving forward in life without her and still finding happiness. It is ok to miss her and still be happy. A lesson I am trying to teach myself. Another lesson I am trying to learn  is don't cry over the things that can be fixed. And don't dwell on the past and try to erase or fix it. The only choice we have is to move forward. #movingforwardisachoice

 

Almost a year...

I have decided to start a blog. Something I thought I would never do.  I don't really read blogs. They usually bore me. They seem to be people bragging about their seemingly perfect lives, political views, homeschooling their kids or whatnot. But I also never thought I would lose a child. Lots of things I thought would never happen to me. Lots of things I thought I would never do. I will be taking a break from Facebook starting on September 2nd Mary's date of entering Heaven. I will do this for my own sanity, but journaling keeps me sane.  I will periodically update this blog on the "Prayers for Mary Elizabeth" page.  I will keep you up to date, for those who are interested, on our family and what is going on in the world of childhood cancer. 

It is hard for me to believe it has almost been a whole year. A year without my miracle child and my first born daughter, Mary. The worst year of my life. I pray things get better. I don't know if they will. How have I survived? Barely.  Hanging by a thread. I don't really know actually. If my children have come through minimally unscathed then it is an absolute miracle. I don't know what the future holds but I hope I can find some good and some blessings along the way-in the midst of this mess. The year of firsts without Mary has been almost unbearable. This next year of seconds with be just a reminder that she is really gone and my life is moving forward without her. I chose to share my pain and hurt and our story along the way not because I really wanted to let people in, because really I didn't. I didn't like telling our story. It wasn't pretty. It isn't pretty. But childhood cancer is such a gory story that hasn't been told enough. Too many details have been left out. I can 
understand why. But if someone doesn't tell it then nothing will be done to change the details of the story. I have tried to tell the raw truth to help move the change along. But in doing so it has also destroyed a little part of my soul. It makes it all very real. Too real. I hope in doing so it has also done some good. I will keep telling Mary's story. Her legacy is beautiful. She was the most beautiful soul I have ever known. If I had the choice to go through this pain over and over again then I would choose "yes" every time without hesitation just for the chance to be her mom. She made me proud everyday. I have decided to take a break from telling our story and from Facebook for a little while. I will continue to journal and share my feelings and the journey on my terms and in blog form but I think It is important to step away and heal a little. The wounds are too fresh and the pain too raw. I will keep fighting and working towards a cure but I just need to be private for a minute. I need to focus on my family and kids a little more and start trying to put my life back together. I am looking for my happiness and trying to find  a new purpose. Who knew at the age of 43 life would be so confusing. These are suppose to be the best years of my life, not the most painful and difficult years.  I need to be a healthy person so I can be a productive person for those who need me the most. Following so closely these new diagnosis and losing 
so many kids to this awful disease is more than I can bear right now. And I hope it is more than you can bear. Please help us keep the fight going, the awareness going, and the money raising campaign coming along. It is the only way we will make a difference.  September is "our month" to shine and we will. But we must keep telling the story all year long. One child dying of cancer and suffering from this illness is one too many. 

I know I have told this story before, but a few weeks before Mary passed she told me, "Mama if I have to die so others can live then I am ok with that. And so many of my friends are in Heaven and I miss them." When she said this to me it broke my heart and I just cried. I really couldn't hear it. I didn't want to hear it nor did I truly understand her wise words.  It was only a couple of weeks before her passing and during this time I was busy making deals with God.  I believed Mary could be healed and be the miracle the world needed to see in order to believe... But now I think I understand that if she had lived then people would not have seen the real devastation of this disease or realized the real need we have for change. By her living things would not move forward like they should. Lives would not be touched and people would not "see".  As hard as this was for me to comprehend I now think this was the truth I didn't want to "see". Now I just have to accept it, forgive, make peace and find purpose in this outcome. But that is on me. Thank you for being a support to our family and others.  Most importantly thank you for not forgetting Mary and her friends...ever. This is always one of the biggest fears we have as a parent who loses a child too soon. Thank you for keeping her spirit alive-always. Mary's story is far from over. 

If you would like to donate to our fund you can do so at this link: www.curechildhoodcancer.org/united
United for a CURE

I am a Believer in CURE

Today I attended a luncheon for volunteers with CURE to learn how to get more involved. The group is called "Believers" and I personally think it is a great name. You have to truly believe in something for it to work and I really do believe in CURE. Today my faith in them was just reaffirmed and I was able to also be with my other two partners in crime: Anna Bozman, Lake's mom and Erika Depa, Melissa's mom. You might think I already know a lot about CURE but there is always more to learn. In the pictures I am posting you can see the sad childhood cancer facts that are absolutely true and that absolutely exist. I won't repeat them here but they are good to know and carry in your memory. When people ask you why we need a change you can know the facts.

What does CURE do exactly? And why should you give and help with fundraising? Here is why I believe you should:

3.2 million was raised by CURE last year and given toward trials and research. This is for childhood cancers that get little funding by the government.
25 projects are being funded as we speak.
A scientific advisory council works many hours behind the scenes to decided which projects will be funded by CURE.
Approx 8 hrs per proposal is spent deciding if it is a valid project. These projects are from hospitals all over the US. Many are at CHOA but also at Emory and Seattle and several others.
They focus on research that can have clinical application within 5 yrs. This is so important. Getting research to the bedside as quickly as possible is what is best for these children. They do not have years to wait for treatment options.
Of the $ that CURE raises about 55% goes to research and the other % goes to help families.

These are some of the ways CURE helps families:

Resource bags with supportive materials when they enter treatment.
Open arms meals at the hospital.
Counseling services.
Emergency services to help with bills etc.
Bereavement care.

CURE raised over 5 million dollars total last year!

Volunteers are always needed. You can go on the website, which by the way is new, and you can sign up easily. And I hope you will.

Ways to help:

1. Wear gold and spread awareness
2. Coins4CURE
3. Bow campaigns
4. Do your own fundraisers

Anna and I were taking today about how we volunteer and work hard with a smile on our face. We will make a hundred bows and cover ourselves in glitter as many times as it takes if it helps to make a difference-all the time knowing it won't ever bring our babies back. When we stop and think about that it can be really sad and depressing. We could easily give up. And sometimes we feel like we want to. It can be frustrating. Did anyone fight this hard for us? All this work is not going to do our child any good, it is too late for them. But when we think of our friend's children still fighting and the children yet to be diagnosed we have to do what we can to help. Children can't fight from a hospital bed and their parent's can't fight when they are busy just keeping their child alive. It is our job and we have done a poor job up until now...that is beyond obvious. It is also beyond obvious that no one has cared enough before now or more would have been done for these kids and we would have come further with childhood cancer treatment options. Your child might be next. Don't be naive to think this is not a fact. So I will be here to continue bugging my fiends and neighbors for money, lobbying for more research and making a fool of myself-whatever it takes...until my last breath. And I know two other ladies who will be making fools of themselves right beside me. 😉
United for a CURE