Monday, January 23, 2012

Tomorrow is Moebius Syndrome Awareness Day

January 24, 2012, is the second annual Moebius Syndrome Awareness Day (MSAD). So if you or someone you love has Moebius syndrome please wear your Purple and spread the word about the rare disorder. Sharing about Moebius may help to bring awareness which will hopefully bring more research and finally find what causes this to happen in the first place. Thanks!

Sunday, January 22, 2012

Loosing a child!

Today my friend got that phone call that every mother dreads. My friends daughter is dead. She was a daughter, a mother, a wife, a sister, a granddaughter, cousin and friend. There is a whole left in many lives where Shanda use to be. Even though Shanda is in the place where we all strive to go, we still hurt and mourn her passing. My heart breaks for my friend. There have been more deaths of young people than I can count lately. Lord I just pray for the families who must come to terms with thier loved ones being gone forever. As I read my friends post on face book "God you didnt even let me say goodbye" I just broke down and cried. A mother begging for just one more minute, one more opportunity. May we all use each minute to the fullest and appreciate the ones we love.

Wednesday, August 17, 2011

In my last post I mentioned my excitement over a new grandbaby on its way. Well my daughter lost her baby. It was extremely heartbreaking. I will never as long as I live forget the look on her face when the ER doctor told her the baby was gone. The baby's Name was going to be Bentley! I will forever think of this little angel and look forward to seeing her in Glory!

Tuesday, April 19, 2011

Hey peeps, Its been awhile since I posted. Things are looking up somewhat. I found out I am going to be a Nana again. My Daughter Brittney is expecting another baby, she has a singleton and a set of twins already, the Father of the new baby is a twin also so we shall see if she will be having another set of twins. Everybody needs to be thinking pink. We only have one granddaughter and 6 grandsons. THINK PINK YALL!!!

Thursday, February 17, 2011

My mouth and Facebook

I continually find myself in trouble for voicing my opinions and feelings on my facebook status. So today I will post on my blog and give you the option to click on the link or not :)

To be honest, I feel like my world has been rocked by the actions of a few people and there is just no escaping it. As hard as my husband and I try we just cant move forward. We give ourselves a pep talk every now and then and say, "this is it, it's time to put the worry aside and move on." It helps for a few days then it 's back to the old and bad habit.

Over a week ago, an incident happened that just took our breath away. Our family is going through some rough and rocky roads once again and we can hardly believe it. To make things even worse, its happening to two loved ones.

The phone rings and I cringe. That call that every parent dreads is coming one day. We have spent the last eight years dreading the calls. I have lost count of how many times I get a call and the voice on the other end is obviously seeking help. Don't get me wrong, I want to know when help is needed, but what i want most is for help to NEVER be needed. For lives to be functional and prosperous.

On top of my many other health and life issues, this constant problem is putting me over the edge. Some days Greg and I are strong and hopeful but other days we are soaked in despair. We are so blessed to know the Lord and are very faithful people. God has always been good to us. I am not one to say, " This is a learning experience God is taking us through." No. it's not, let me break this down for you. This is immature individuals who have no self control or integrity who's actions cause a reaction and the ripple effect affects many!

It may be offensive to some that I speak out about my feelings. However I feel I have mentioned no names so no harm done. The fact is, what is happening is wrong and you are taking the choice away from us by continuing this lifestyle. I only have one life and I'm tired of living it worrying about these things.

Now to find the solution. Perhaps we could run away to some beautiful island paradise. Or maybe change our phone numbers, or maybe even our names. We couldn't do that because we would miss our babies terribly. I don't want to run away, I want them to fix this, I want them to make better choices and decisions based on fact not what people tell you. Choose the people you spend your time with wisely. Demand to be treated with respect and never allow another person to steal your dignity!

Ok, so I think I know now what I have to do. From this day forward I will never let another person steal my joy. I will speak my mind (carefully) and choose wisely the people I spend time with. I will forgive, but I will not let things slide. I will love and be loved but I will never be a doormat. I will dish out advice when asked but I will never be angered when not accepted. I will give God the glory for all things but will not blame HIM for the trials. Most importantly I will love my family unconditionally no matter how many times the phone rings and gives me heart palpitations.

Thursday, January 20, 2011

January 24th is the first ever MOEBIUS SYNDROME AWARENESS DAY! I was born with Moebius Syndrome and Polands Syndrome in 1965 ( I know, I'm getting over the hill) Im so happy to see that we are finally getting some recognition and awareness. I'm very grateful to all the people who made this day possible. The world needs to know we exist and we deserve the funds for research.

Thursday, November 18, 2010

I just love the idea of popping popcorn in a christmas ball. Fun for the kids and the big kids. Check out this link
http://www.kckpl.lib.ks.us/ys/crafts/BALL.HTM

Saturday, November 6, 2010

Moebius syndrome

I was born with Moebius syndrome and Polands syndrome. Thanks to the internet and finding other people with Moebius and Polands on facebook, I am finally better understanding both of my disorders. I have always had questions that could never be answered because these disorders are extremely rare. Its a long story that I would like to share with my family and friends especially my new Moebius friends who can clearly relate to my life experiences. So check back often to see if i get myself together and start telling my story. It has been a long rough road but it was a journey well worth taking!

Prayin for Little Brianna

My heart is heavy for a little baby girl Named Brianna who also has Moebius syndrome. Her trach came out and she was without oxygen for over 20 minutes. She is thought to be brain dead at this time but more test will be done. It does not look good for any positive changes. Please keep her and her family in your prayers. She has a Caring Bridge page you may visit to read her story.
God knows her needs better than we do, but i sure would love for her mommy and daddy to experience a miracle from God!
http://www.caringbridge.org/visit/briannabrockner?ref=nl

Thursday, October 14, 2010

So happy For the Chillean Miners


What an awesome blessing from God that all 33 Miners were saved yesterday from the mine that they were trapped in i believe 69 days! How in the world does a man survive those conditions and come out the same? God I pray for healing of thier hearts and minds, and that they always give You the glory!!!!