God Doesn't Make Mistakes!

“For thou didst form my inward parts, thou didst knit me together in my mother’s womb. I praise thee, for thou art fearful and wonderful. Wonderful are thy works! Thou knowest me right well; my frame was not hidden from thee, when I was made in secret, intricately wrought in the depths of the earth. Thy eyes beheld my unformed substance; in thy book were written, every one of them, the days that were formed for me, when as yet there was none of them.”

Psalms 139:13-16

I was diagnosed with Turner’s syndrome when I was 14 years old, and did not meet anyone else with Turner’s syndrome until I was 19. I think I always felt a bit different, even though we lived a very active life in Idaho. I still think I had questions about why this happened to me! 

It was the winter that I was about 16 that I went on a retreat with others my own age and found Psalm 139. It became clear to me just how much God loved me and that He had created me with His own hands and plan. Who was I to question why God had made me with Turner’s. I think it was a big turning point to my acceptance of my diagnosis and all that comes with it.

At 53 years old now, I am very blessed with a healthy body otherwise and continue to be active and productive. God has also given me a growing network of friends and support through the Turner’s syndrome Society. I have been to national conferences and learned so much. It is a joy to meet wonderful people like Debbie whom I met in Anaheim, CA.

I encourage everyone to get involved, it will change your life, “no mistake”.

Liz Howard

Kent, WA

How to be an Overcomer

^“You, dear children, are from God and have overcome them, because the one who is in you is greater than the one who is in the world”. I John 4:4

2013 was a rough year for me however; it was the most blessed year, too. I started last year with a new job, but within a month I lost that job. I lived with no income for nearly 4 months without having the ability to collect unemployment. It was a tough blow. However, I started a new job in the spring as a Pharmacy Technician. What a blessing!

Also, I was able to go to my first Turner Syndrome Society Conference in Dallas, TX through the support of Leaping Butterfly Ministry and my blessed sweet friend, “Mama Bee”, Debbie Browne, who sponsored me. I made treasured friendships from all over the country.

God had something bigger in mind for me at the conference though. I discovered I had a couple of congenital heart issues with an echocardiogram. It had gone undetected for 30 years. It was like a bomb was dropped in my lap as I am not one for roller coaster rides. I would not have known about the conditions with my heart had I not gone to the conference.

When I found out my new TS friends immediately gathered around me in the hotel lobby. They loved me while I was processing the information. That was the love of God in action. I was not alone as God put His arms around me through these sweet women. This report gave me the urgency to get the proper care. Today my doctor says I am healthy and was caught at a great time where I can be monitored. I cried because many don't get the catch this early because when it comes to heart symptoms you usually aren’t aware until it's too late; often there is already a dissection. Even though it was news I was not expecting I can now do something about it.

During last year people showed me love, support, encouragement, and provided help where they could. At the time of unemployment my family, especially my mom, friends, church, and community resources, God provided for my needs. What the enemy meant to harm me was used for good. How? When I had no income I realized I still had food, a roof over my head, transportation, my gadgets...phone, computer.

God was so close to me this past year as I found myself in a place where I had to rely on His strength and not Andrea’s. It was the hardest yet sweetest of times in my journey and relationship with Christ. He works out all the details of our lives and it never fails to amaze me. Look for it. He will be with you during your most challenging times.

Remember Peter and the storm?  If we focus on Jesus we walk towards Him to rise above the storm. Peter’s feet were steady on the water until he lost eye contact with Jesus and began to sink. Keep our focus on God. It’s the only way I know how to navigate the ups and downs that life brings. With Him we can overcome!

Andrea
Kansas City, MO

 

The night I received the news at the conference about my echocardiogram results. My new TS friends were right there to cry with me and love me through this news.

 

I am an Overcomer...how about you?





Long Time Coming

“God will meet all your needs according to his glorious riches in Christ Jesus.” Philippians 4:19

In 1958, at the age of 4, my doctor recommended that I be taken to Pittsburg Children’s Hospital to have surgery on my webbed neck. Seems like yesterday. I was in a room by myself, placed in a crib with a top net over it as if I were in a cage, and received shots to put me out for surgery. The next thing I remember was waking up with my parents by my side, wrapped up like a mummy with over 100 stitches in my neck from my shoulders to my head. The wrapping left me with holes for my eyes, nose and mouth however; it was plenty of room to see my dad with a big walking doll for me. The doll was bigger than me!

Later I was placed in another room filled with other children. In 1958 children were placed in a children’s ward with many others. My home was far from the hospital so it was hard for my parents to come visit me. Plus, my mother had to take care of three other children; my siblings.

I quickly made friends with another girl in the ward who had been badly burned. Since we were both dressed up like mummies we didn’t think the other was weird. Her parents were there all the time and visited with me too.

The whole experience was pretty traumatizing to me and my parents as you can imagine. Thank goodness Turner syndrome girls are being treated differently today.

Now at the age of 58 my life is different because of all the wonderful TS ladies that have come into my life. The first TS woman I ever met face-to-face was Amy a year ago. She is such a beautiful person. Then I met Lisa, Jennifer, Martha, Ann, Christine, and of course Lauren and others. I have a TS pen pal in England, Samantha, and two very special little 3 year old TS twin girls. I keep in contact with them and their beautiful mom, Erin.  I love them all! I’m so grateful to the good Lord for placing these people in my life.

I attended my first Turner Syndrome Society of the United States Conference in Dallas, Texas last summer and met so many more TS women. It was an awesome experience!  I met Deborah Rios and Debbie Browne. They both work endlessly for Turner syndrome and Deborah’s husband, Jimmy.

God has blessed me so much to let these ones come into my life after growing up not knowing anyone else with TS. What a blessing it has been to have a chance to meet and know so many even though it took a while to find them this late date in time.

Bonnie Rubis

East Brady, PA

 

Bonnie at the TSSUS Conference in Dallas, Texas summer of 2013.

Amazing Friends - Part 2

(Continued from last week…)

“I praise You because I am fearfully and wonderfully made; your works are wonderful, I know that full well. All the days ordained for me were written in your book before one of them came to be. How precious to me are your thoughts O God!  How vast is the sum of them!" Psalm 139:14, 16-17.

Successfully I navigated through high school, but later ran into a barrier in higher learning with math. This is when I first decided to go a Turner's syndrome conference to learn about non-verbal learning disorder.  I suddenly understood why I was struggling! 

After facing many obstacles I applied for clinical work in a registered nurse program.  The clinical instructor advised me to withdraw from the program due to my struggle with technical skills and prioritization on the floor. I conceded. I soon transferred to a state university to take classes for a General Life Sciences degree. It gave me the ability to work for five years at a laboratory and stay home with my supportive parents to save money. After five years I had a desire to go back to school for a medical technologist degree.

Working in the lab pulled me away from God’s call to be involved with people.  I got up my gumption to apply at a couple of nursing programs, not thinking anything would come of it.  A few months later I was accepted into one of the most prestigious nursing programs in Kansas! I went straight to the disabilities office to get all the help I needed.  It took me four years to complete the two year program because I was going part time and working part time. Later, I was refused my certification after my graduation and passing of NCLEX (National Council Licensure Examination).  They were concerned about the Turner syndrome diagnosis and whether I could accomplish the job.  After battling this, I got my degree and now am working as a Psych RN!

The LORD did it! :)

Monique

Kansas City, MO

 

Amazing Friends!

"You hem me in - behind and before; you have laid your hand upon me. Such knowledge is too lofty for me to attain." Psalms 139:5.

Recently, I have been blessed to have made a good friend, Andrea, who connected me with amazing Christian friends! Andrea suggested we travel to Ft. Wayne, IN, last November, to join in with other ladies who have a heart for ministry; all touched by Turner syndrome. I said, "Sure!" I had no idea how important and beautiful it was going to turn out to be! These ladies hearts are to lift up Jesus to help others touched by Turner syndrome, too.

We instantly all connected when each explained struggles encountered with Turner syndrome, which is a chromosomal disorder with many varied presentations/experiences. Individually are touched in unique ways, but its core is small stature and growth; bot in height and secondary female characteristics. Also, related is infertility and nonverbal learning disorders. We continued to share common struggles obstacles Turner syndrome women can have in living independent successful lives. My greatest obstacle has been dealing with nonverbal learning disorders; verbal learning is easy, hands-on-is more challenging. I will be sharing more about this on January 14th's Leaping Butterfly Ministry Blog.

Monique
Kansas City, MO

(To be continued next week...)

Monique at Barnes and Noble book signing for Loving a Leaping Butterfly.