Tuesday, January 28, 2014

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?




Saturday, January 18, 2014

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.

Tuesday, January 14, 2014

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

 

Tuesday, January 7, 2014

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.



Tuesday, December 17, 2013

Beautiful Butterflies Stories for 2014

“And I pray that you, being rooted and established in love, may have power, together with all the Lord’s holy people, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge—that you may be filled to the measure of all the fullness of God. Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.” Ephesians 3:17-21

How do you measure God’s love? I have things in my life I can measure how much I love it and it loves me. For instance - my morning coffee. I love my coffee however; one day I do but the next I don’t. The coffee grounds come from the same canister yet it could taste different every morning. Perhaps I neglected to measure my tablespoons when scooping the grounds before dropping them in the paper filter. Maybe I added more water than the day before making it strong then weak the following day. However; because of the revolutionary premeasured K Cup every day is a well-balanced day! Just the right amount.

Can you tell that I like predictable days? Like clockwork I start my day. Like clockwork I end it. But six years ago time suddenly stood still when my 28 year old daughter told me, “I think I’m having a heart attack.” My first thoughts were how would she know…she’s never had one before. It must be indigestion. Later we discovered she was right and I was wrong. After three surgeries Kellie became weak and said goodbye to this life and hello to the strong life she longed for. February 29, 2008, Leap Day, was not a well-balanced day for me.

BUT GOD, has taken my weak heart and molded it to be strong with compassion. In six years I wrote a book about Kellie’s life, started a ministry, speaking in front of small and large groups, sitting in front of TV cameras, and have met some of the nicest folks in the world! God has done immeasurably more than I could have ever asked or dreamed. He has placed me in a ministry I would have never thought to ask for. The genetic condition we hid for years has now become the condition I embrace. Is there something in your life you’ve run from that perhaps to turn and embrace it would make you a stronger servant for Christ?

Most of you know my story so for 2014 I’m going to share their story. Their? The stories of those in the Turner syndrome community: TS girls and women, mothers, fathers, brother, sisters, grandparents, boyfriends and husbands! Every Tuesday, starting January 7, 2014, Leaping Butterfly Ministry blog spot will host a guest writer.

 
Above are just a few of my dearest new TS friends who will be guest writers for 2014: Andrea Horner, Emily Markowski, Laura Ridgeway, and Monique Gras. (Names from left to right. Picture taken on a recent trip to Fort Wayne, IN.) They are some of the strongest women you’ll ever meet…not weak!


Monday, December 17, 2012

Merry Christmas!

Years ago I listened to a political talk show host on the radio. Often he would target the words politicians flippantly used in sharing their views on major issues. The host would question if they really meant to say what they said as he reminded his audience by leaning into the microphone with a deep voice to state, “Words mean things.” These three words still ring in the back of my mind as I type on my keyboard.

But there are times when it is just simply hard to find the words as I try to express my deepest condolences to the families who have lost their children to the tragedy in Newtown, CT. What words do you use? Having experienced the kick in the stomach of being on the side of parental hears receiving those unbelievable words …I know words aren’t even heard at a time like that. You’re numb. This can’t possibly be true rang in my ears like a screaming siren. You hear nothing else for days.

As my eyes were glued to the television this morning I began to pray for those dealing with the news of this tragic loss. Then I heard a whisper to grab a pad and start making a list of the words I was hearing. Here are a few: safe, secure, innocent children, protective teachers, trapped, helpless, mental illness, gun control, devastation, state of shock, a week before Christmas, has touched every heart, community coming together, reaching out, not alone, outpouring of support, pray for families, compassion, love, grace, faith is getting them through this, relationship with God is incredibly important, will learn from this tragedy, will celebrate the true meaning of Christmas this year, having joy in the midst of the grief, held together by something greater than ourselves, richer faith can happen, and God is with us.

In Isaiah 7:14 it says, Behold, the virgin shall conceive and bear a Son, and shall call His name Immanuel.” Do you know what the name Immanuel means? God with us!

As you celebrate the gift of God being with us remember these families, students, teachers, community, and church leaders in Newtown. Ask the Lord to make it a New Town under God’s mercy and grace as they experience God powerfully being with them.

Hug as much as you can this Christmas and show the love of Jesus in your smile. I pray it is a sweet time of remembering His greatest provision of all time; Immanuel.