I am a Catholic stay at home, homeschooling mom to three wonderful boys. My oldest is in college and doing well! My two youngest have been diagnosed with clinical Shwachman-Diamond Syndrome and also have Mitochondrial Disease. Over the years, we have spent a lot of time in the hospital! I enjoy writing and it only seemed natural that I would share our experiences with the hope of helping others.
Prior to the married life, I was in the Louisiana Army National Guard. I spent many years as an enlisted member of the ARNG before going through Officer Candidate School. While in the Army, I received several awards, including The Army Achievement Medal. I received The Army Achievement Medal for meritorious service achievement while serving as Executive Officer of the HHD 165th Transportation Battalion. The Army prepared me for motherhood. It REALLY prepared me to handle life with children with rare diseases. It certainly prepared me for homeschooling three boys, too! ~laughter~ I resigned my commission when my oldest was a toddler. The Army will always be a part of who I am!
I graduated from LSU with a BS in Psychology with a minor in Religious Studies in 1991. I worked as a social worker before getting married and moving to San Antonio, TX. All three of my boys were born in Texas. I love Texas! Once a Texan, always a Texan.
In 2001, I helped to found Shwachman-Diamond America and I am proud of all we have accomplished through SDA. Over the years, SDA has supported critical Shwachman-Diamond Syndrome research, the North American Shwachman-Diamond Syndrome Registry, finaancially support the International Congress on SDS, and worked to get successful bone marrow transplant protocols in the hands of doctors and families. Shwachman-Diamond America also pays for Dr. Harris to present grand rounds to physicians across the country.
But, what defines me as a person? I would hope that people who know me would say that I live for Christ. I would hope that, if I were to be defined by anything, it would be my love of God first. I love my Catholic faith as much as I love my boys and my family. My first prayer for my children, before I pray for healing, is that they love God above all else. I know if they love God above all else, the rest falls into place. I want that for myself, as well. I want to love God above all things. So, while I am proud of all I have accomplished in life, I give all the credit to God. Without Him, I would be nothing and would never succeed at anything. God has been with me from the very beginning of my existence. I was supposed to die when I was born, yet here I am.
Growing up, my family was not religious, did not practice the Catholic faith. God found me on those scared and lonely nights. God protected me. I grew up in a home where my brothers were in and out of jail, kicked out of public school, sent to boarding homes, and where violence abounded. They were addicted to drugs and alcohol. This was normal life for me. Some neighborhood children were not allowed to associate with me because of my brothers' behavior. My youngest brother committed suicide when he was 20. I was a sophomore in high school when this happened and it had a great impact on my life. My oldest brother died of a drug overdose when he was 33 years old, and my middle brother has been in and out of the state penitentiary 3 times. last I heard he was out again, but I have not seen him in 32 years. I saw him at my youngest brother's funeral in 1983 and he was unable to attend the funeral of my oldest brother because he was locked up in the pen. My mother recently passed away and we were unable to locate him to inform him.
My husband and I have lost 18 pregnancies, a total of 19 souls (we lost a set of twins that are buried here in North Carolina). We lost our first pregnancy after our three boys were born, back in 1998. Thomas is buried in San Antonio, TX. These losses have caused us to grow closer together and grow closer to God.
My husband and I have lost 18 pregnancies, a total of 19 souls (we lost a set of twins that are buried here in North Carolina). We lost our first pregnancy after our three boys were born, back in 1998. Thomas is buried in San Antonio, TX. These losses have caused us to grow closer together and grow closer to God.
I love to write (I wouldn't be a blogger if I didn't love to write, would I?) -- I hope that my articles on coping with chronic illness and helping children cope with their illnesses can be helpful to other parents out there. I love to make hand-stamped cards and scrapbook. I have shared some tutorial videos here on my blog and hope you enjoy them as much as I enjoyed making them! I also love to work on Cards for a Cure, just a small way that I can help raise money for Shwachman-Diamond America.
There are blessings to be had in having kids with chronic illnesses, I still experience them each and every day. Our God is a merciful God! I have been abundantly blessed with a loving family and many friends. Thanks for stopping by!
