Opportunity is on the Road in the Middle of Nowhere

When I met Debbie Browne a few years ago she told me her story and we immediately bonded. She had a daughter with Turner’s syndrome and I had a sister with Down’s syndrome. We both learned through life’s circumstances there is always joy in the journey. Taking the time to find the good in any circumstance will lead you with joy through the journey of life.

For example, on a July 4th trip my 6 month pregnant daughter and I ventured to Missouri to visit a friend dying of cancer then to Illinois to celebrate with family. We drove her new car with OnStar on our 12 hour journey to our first stop in Missouri with our dog, Bella.

Around midnight, while my daughter was driving, she hit a piece of tire debris. We didn’t think much of it and kept driving along the Interstate bubbling with enthusiasm and talking about our goals and plans in life. Several hours later, halfway to our 1st stop fear set in. SaLise’s car had less than 10,000 miles and the engine light came on and overheated. We looked around at the fields on each side of us in that pitch dark sky and realized we were “On the Road in the Middle of Nowhere”. My daughter broke down crying in fear and said, “Now what are we going to do?” Does life ever feel like you are in the middle of nowhere?

All I could do is literally laugh out loud. What seemingly sounded like a great idea was quickly turning into a very scary moment. All I knew was the 4 F’s I was taught as a child. Faith, Family, Fun and Fortune. I reminded SaLise what Faith is; the belief in something that you can’t see. We are all called for GOD’s purpose. I knew GOD had something in store for us. There is opportunity in everything no matter if it is good or bad.

It took an hour to travel a few miles to the hotel only to be turned away because they didn’t allow pets. We were in Savanna, Oklahoma where the population is 730. We went to the truck stop and talked to the clerk, he shared his story about his teenage son who recently died in a car accident. He offered to look over the car and said he knew who could fix it, Bob. It was the radiator. Bob called his friend that owns a parts store, only to find out they don’t carry new car radiators. We called the dealership and they said it would be a week. Now what? Bob and I were determined to find the opportunity. Bob found an old minivan to rent with an old fashioned typewriter rental agreement.

Lesson learned: Opportunity is on all roads…even when you are in the middle of nowhere.

Paula J. Foulk

The Life Analyst

Houston, TX

She's a Miracle!

At 19 weeks pregnant, a routine ultrasound would tell my husband and me if our 3 big girls would have a sister or brother. The tech announced it was a girl! We celebrated then my husband left for work. Later my doctor came in to speak with me with a look of concern. He told me they had seen a small cystic hygroma on the back of my baby's neck indicating several different chromosome disorders.

I left the office, hurriedly unlocked the door to my minivan, sat down and sobbed. I was full of despair, hopeless and felt utterly alone. My husband, Jeff, couldn't understand me as I sobbed between describing the doctor's concerns. I tried to calm myself down. It wasn’t something I could fix.

Later we were told she had puffy feet - a marker for certain chromosomal disorders which could develop into hydrops in other parts of her body. We decided to take the materniT21 test by extracting some of the baby's DNA from my blood.

A week seemed like an eternity as we waited for the results. I imagined the worse and mourned for a baby I didn’t even know yet. We were on vacation in New Hampshire with our family when we got the results. Her test was positive for Turner syndrome. I found myself still desperate and alone - unable to reach out.

Upon returning home to Texas, I decided I had to make a change in my attitude and relied on my faith. I reached out to my mother's group at church and also found some resources online where I put my name in for information. It wasn't long before I received an email from Debbie at Leaping Butterfly Ministries who met me for lunch to help ease my fears as she reassured me everything would be okay. She told me stories about her precious daughter, Kellie, who had TS. She knew how precious my little Clare was to me and made me feel like she was so special - a life to be treasured. My daughter, too, deserved the same all children do - love, tenderness, care, and God's grace.

Mom's prayer group passed around our request to other prayer chains and friends. Prayers saved me from the depths of sorrow as I was able to start focusing on the health of my baby. The unconditional love and prayers I received during my pregnancy and even now from friends, family and those who don't even know my family absolutely filled my heart.

Clare Frances Hynes finally arrived on November 21^st 2013, screaming and wiggling in all her glory at 5 pounds, 10 ounces. She stayed in the NICU for 1 week while we waited on results from tests on her heart and other organs. She was discharged the day before Thanksgiving and the entire Hynes family gave thanks to God in unison, like never before.

Clare has been home for 5 months now and has enriched our lives like we never could have imagined. We now can’t remember a time without her. Her infectious smile brings tears to strangers - a life invaluable.

God is now using me to reach out to prenatal moms receiving the news of a Turner syndrome diagnoses to share how Clare is our miracle!

Jessica, Mother to Clare

The Woodlands, Texas

 

Clare Frances Hynes

What’s in a Name?

There are so many wonderful things I could say about my husband however, there was one thing I had an issue within our marriage. Vinnie wasn’t very good at picking out a nickname for me – or, so I thought. You see being a “little person” I’ve had endearing nicknames like snuggles, precious rose, and, of course, my favorite…Princess.

About a month into our marriage, while I was busy cleaning and Vinnie was relaxing in the living room watching football, he called me into the room, looked at me with the warmest loving eyes and said, “I figured out a nickname I can call you.”  So excited to hear what sweet expression of love he thought of I said; “Ok what is it?” His answer.  . . “You’re my Bee”!  “You mean the insect?” I responded. “Yeah, you are like a busy bee buzzing around our house and sometimes you can even sting me if I get on your nerves. It’s perfect!”

All I could think of was that Vinnie only saw a busy, buzzing insect when he looked at me. Wow, how romantic! I did not respond to his revelation and let him call me his “Bee”. I was annoyed and thought, “Whatever!”  It wasn’t until after my heart surgery that God revealed to me that nickname could be endearing and inspirational.

While recovering from heart surgery, I read Mary Kay Ash’s biography and my ah-ha moment came when she made reference to the beauty of the Bumble Bee and how unique it is. You see the Bumble Bee, when looked at aerodynamically, is not capable of being able to fly. It took scientists numerous years to discover God’s creativity and the truth behind its ability to fly.  Mary Kay Ash quoted, “Aerodynamically, the bumble bee shouldn't be able to fly, but the bumble bee doesn't know it so it goes on flying anyway.” This hit me like a bolt of lightning. I am a BEE. 

Praise God He saw me through my heart issues, Turners syndrome, deployments as a Marine’s wife, and a divorce. And, like the miraculous Bumble Bee in Mary Kay Ash’s story, I can declare – no one told me I couldn’t make it through the struggles I have, so I just did, hand-in-hand with my precious Lord and Savior who has been there every step of the way showing me love, mercy and grace beyond what I deserve.

Would like to end by saying ladies you are all beautiful and amazing. No matter what you face in this life, good or bad, trust in God with all your heart, let His words guide you...and BE THE BEE!!!

“The Lord delights in the way of the man whose steps he has made firm; though he will stumble, he will not fall, for the Lord upholds him in his hand.   I was young but now I am old, yet I have never seen the righteous forsaken or their children begging for bread. They are always generous and lend freely; their children will be blessed. Turn from evil and do good; then you will always live securely.  For the Lord loves the just and will not forsake his faithful ones. Psalm 37:23-28.

Emily, 33 years old 
Fort Wayne, IN

 

Emily, the Bee!

 



More Blessed to Receive and To Give

Although the title of this blog seems odd you will soon discover the meaning. For if it weren’t for receiving there would be no money to give.

With growing interest in awareness for Turner syndrome I was approached by a young lady by the name of Danielle who asked me a question I could not ignore or explain away, “Have you ever thought about providing a gala to raise funds for Leaping Butterfly Ministry to do bigger and better things?” “A gala? Me?,” I exclaimed and within 2 months a gala was planned with 800 invitations mailed for a country club that only seats 200. 

I found myself in the same crisis as I did when I first published my book, ‘Loving a Leaping Butterfly’, with 2 questions plaguing my mind: What if you only sell one book? What if you sell one million books? So it was with the gala should no one support the gala. I had to leave the results to the Lord.

God, once again, proved to me that He is always in control as my questions have nothing to do with His sovereignty and for a first time gala, for a ministry and condition not many have heard of, there were 115 in attendance. Statistics state to have 30 for a first time event would have broken records yet we clearly surpassed that figure. Not only with attendance, but with giving as well.

Ten incredible woman came to my side to form a gala committee, local merchants donated over and above what we could ever expect, friends bought tickets for the tables then gave generously at the event. Laughs and smiles could be heard all over the club, as every little tiny fear of putting an event together in just weeks melted away into a time of great glory.

The event raised $32,000, expenses for the event have been paid, money is available to have a bigger event next year, and two checks were given to the Turner Syndrome Society of the United States. One check presented to them was for $4,000 for research plus $3,120 for 12 scholarships for TS women to attend the TSSUS summer conference in Jacksonville, Florida. These women have never attended a conference before in their lives.

Goals for next year are to double the gala attendance and giving as we now enjoy the status with the IRS as a Public Charity. LBM looks forward to continue bringing awareness and support to over 80,000 girls and women in the United States alone. What a testimony it has been to me, and many others, as we watch people get excited to give and then receive. So awesome to be the conduit.

Acts 20:35 says, “In everything I did, I showed you that by this kind of hard work we must help the weak, remembering the words the Lord Jesus himself said: ‘It is more blessed to give than to receive.’ ”

And, 2 Corinthians 9:7 says, “Each of you should give what you have decided in your heart to give, not reluctantly or under compulsion, for God loves a cheerful giver.”

 

Debbie Browne presents to TSSUS the 2 checks. 

Pictured from left to right: Debbie Browne, Cindy Scurlock,

and Deborah Rios. 

Linking Up With Friends

I was eleven when I found out I had Turner syndrome. I so remember that day. I was at my cousins for the summer visiting. My mom called and asked me if I was sitting down. I told her no but I can. She then proceeded to tell me that they found out what was wrong with me. She then asked if I was willing to start taking shots to help me grow. I told her yes. That's when our journey to all my doctor appointments started. I went to Michigan State University Hospital every three months, then every six months, then once a year and now I don't go anymore.

I was in denial for years about having Turner syndrome. I stopped going to doctors for it. I felt like I was the only one with this. Then one day I woke up and decided I wanted to find others with Turner syndrome. I contacted my sister Jenni and she gave me the TSSUS (Turner Syndrome Society of the United States) website. I contacted them to see if there were any support groups around where I lived. They told me there was one in Grand Rapids and one in Detroit. A wonderful lady by the name of Mary met me in Battle Creek and that's when I met someone with TS for the very first time. 

We met a couple times then she introduced me to Connie. One day Connie emailed me and told me about a wonderful lady that was starting a group in Fort Wayne, Indiana. She asked me if I would like to go with her to support starting the group. I said sure since Fort Wayne is a lot closer to me. At the meet and greet I met  a couple wonderful ladies. I met Emily and Beth who helped me through a lot of things. Then a couple months later Laura came to the group. These wonderful ladies are such great people to have as support.

I then found out from the group that there was a Turners syndrome conference every summer and the next one would be in Dallas, TX. I didn't think I was going to be able to go due to financial reasons yet I was honored to be able to go due to Debbie Browne, with Leaping Butterfly Ministry, who sponsored me. It was a great experience for me as I met so many incredible ladies. Now I can't wait to go to this year's summer conference in Jacksonville, Florida.

If you haven't found a group then call the national office at TSSUS. They will be more than happy to link you with an awesome group like mine.

Amy

46 years old 

Amy on the far right.

From a Mother's Heart

The following is written by a mother who lost her daughter with complications from Turner syndrome. Cathy was the first to reach out to me, Debbie Browne, when I lost my daughter 5 years later. I'll never forget our sweet tearful lunch, how Cathy met my aching heart where it was, then ministered to me in ways that only she could. It changed my life forever and gave me hope and insight on ways to minister for the future. Thank you, Cathy, for your gift of time and understanding. Now join me in remembering her precious daughter, Adrienne.

Adrienne’s short but full life of only 23 years was a difficult journey from day one. Yet she always managed to master such a positive outlook on life. She was an overcomer who accomplished any challenge thrown at her, especially her medical issues for which she struggled with since she was 5 weeks old.

It was her being “different” that was the hardest for her to accept. At 5 we were told that she had ADHD, but I knew it was something a little more. Adrienne had above normal intelligence however she just didn’t have appropriate behavior at all times leaving her with little to no friends. It was so sad from a mother’s perspective.

She continued in her own way to make the most out of her life by being cheery, positive, and working towards that “normal” life that she desperately sought. Being her mother it was always heart wrenching to see her try so hard and have to deal with the disappointments. Adrienne’s determination allowed her to pull herself back up and move on. I don’t think many of us, including myself, would have ever had her strength to deal with life’s cruelties as graciously as she did.

On April 2nd, 2003 is when everything changed as I discovered her in the middle of the night with a dissected aorta. I called EMS at 2:30am and they worked hard to save her until 3:30 but I knew she was gone. The doctor ordered an autopsy to confirm her condition because at the age of 23 there was no obvious reason she would be in such a critical state. They asked if she had fallen on anything for which I answered no. The report came back as a dissected aorta. Later I discovered that this can happen to those with Turner syndrome with a low survival rate.

I will always have Adrienne in my heart, thoughts, memories and prayers. I love and miss her very much and now have an understanding of what people mean by “a broken heart”.

Thank you Adrienne for 23 years of unconditional love and bringing me closer to God after your death. You will be my best friend always.

You Mother,

Cathy

Houston, TX

Beautiful Adrienne.

Hannah's Hope

This guest post is penned in loving memory of Ava Elizabeth Reed and Karina Nicole Robledo; and in honor of their Mommy's, Amy Paulsen-Reed and Jessika Robledo, TS moms who held their tiny stillborn daughter's for only a moment here, but will hold them in their hearts forever.

"Rejoice always; pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus."  1 Thessalonians 5:16-18

Every good thing you've ever been told about grandparenting is true, and then some. Hello, I'm Patti Hayes, and I'm a grandmother of four, two-year-old Nathanael, one-year-old Sarah, and two miracles  on the way, one of whom we know is a girl because she has all the indicators of Turner syndrome.

The first cyst was discovered at nine weeks gestation, but my youngest son and daughter-in-love left that appointment hopeful. Four weeks later, at Leslie's next OB appointment, a second ultrasound revealed another cyst on the back of baby's neck. A Maternity21 blood test followed, and our days of brutal waiting, painful trust, and agonizing hope began. As a family we entered what some have called God's Waiting Room where Peter & Leslie, Hannah's parents, continue to have front row seats.

Prior to January 13 I'd never heard of Turner syndrome or any of the other medical terms, cystic hygroma, aortic coarctation, lymphedema, and hydrops, just to name a few, that have since become part of my vocabulary.

I accompanied Peter and Leslie to their first appointment with the specialist, a Perinatologist who specializes in fetal and maternal medicine. He drew a diagram to explain the ultrasound pictures and answered our questions. When we left that meeting our hearts were heavy and our heads were spinning with the grim prognosis.

Now, almost twelve weeks later, following three appointments with the Perinatologist and one with the Pediatric Cardiologist, I'm happy to report that  Hannah's condition has improved immensely. There is only a small indication of the cystic hygroma that for so many weeks posed the threat of hydrops, and baby girl was even given a cardiovascular score of nine out of ten by the cardiologist. Though our specialist has cautioned we're not out of the woods yet, he is guardedly optimistic.

Our darling third grandchild is due July 15, so we still have some weeks remaining in God's Waiting Room, where the waiting is anything but passive. Rather, it is a time for believing God for a miracle, hoping in His Word, giving thanks no matter what, and trusting in His Sovereignty.

Hannah means grace of God, and Beatrice, her middle name, means bringer of joy, so this sweet little girl who captured our hearts long before we dared hope to get to meet her has already lived up to and beyond both names. If you'd like to join us in prayer and be a part of Hannah's hope, we would be humbled by and deeply grateful for every prayer offered on behalf of Hannah Beatrice and our family. 

Patti, Hannah's Grandmother

Tampa, Florida 

 

Love bears all things...

“Love bears all things, believes all things, hopes all things, and endures all things.”

1  Corinthians 13:7

Our story begins with our first ultrasound we had with our daughter, Alba. We were excited, scared, everything an expectant parent would be. With just 15 minutes into the ultrasound, we heard the words "Cystic Hygroma" for the first time in our lives. We were devastated. Our baby was sick. We knew at that point our baby either had Noonan syndrome or Turner syndrome. A few months later we had a Amnio and that's the day we found out our Alba was a little girl...with Turner syndrome.

As the pregnancy progressed, other issues began to show up. Five days before Alba was born we found out she had Hypoplasitic, also known as Left Heart syndrome. We heard another suggestion for the first time…"Heart Transplant".

On September 22nd, 2010 our little miracle was born. Alba was very puffy, but so full of life. Doctors immediately placed her on life support and within 9 days old she was flown to St. Louis Children's Hospital for transplant evaluation. After many issues in St. Louis, the doctor decided to list her for a new heart.

On November 27th, 2010 Alba got her new perfect heart after she had coded twice, endured 30 surgeries, and beat everything that has ever been thrown at her. She is now an active 3 year old and even though she shows a lot of the characteristics that go along with Turner syndrome, Turner syndrome will never define her.

God has shown us that nothing can hold anyone back if you love and believe. We never lost hope that we would have our little Alba home someday because all things are possible through God.

Jason Carter, Alba’s Daddy

Together we change lives and create awareness for Turner Syndrome, CHD, and Organ Donation.

To learn more about The Alba Carter Foundation, please click: http://www.acarterfoundation.org/

 

Little Alba and their foundation blankets.



God Has a Special Plan

"Yet you brought me out of the womb; you made me trust in you even at my mother’s breast.  From birth I was cast upon you; from my mother’s womb you have been my God." Psalm 22:9-10

I am a 59 year old with TS.  We sure hadn’t heard of it or knew anything about it when I was diagnosed at age 16.  I did meet three other girls with TS while in the research unit of a children’s hospital in Chicago.  I also have sarcoidosis, a rare autoimmune disorder, which I had never heard of either.  To top that all off, I was diagnosed with leukemia a year and a half ago.  God has blessed me because it is slow progressing and I haven’t had to start chemotherapy yet, even though the doctor said that the genetic makeup shows that it can be rapidly developing.  

I have an Associate Degree in computer programming and worked for the state of Illinois working up from a data input operator to a computer systems analyst until retiring.  I am married and we were very blessed to adopt a newborn girl.  She is now a 33 year old woman, married three years ago, and became the mother of our beautiful granddaughter and a lawyer at the end of last year.  I really enjoy retirement and am very active in church activities and Bible studies.  I am also involved in a women’s ministry that tries to bring God’s Word to the unchurched. In my spare time I like reading, embroidering, and we like to travel.  We have been to London, Scotland, the lower Mississippi River on a river boat cruise, Alaska, and most recently Israel.

My biggest challenge of having TS is the ear infections, ear surgeries, and therefore the profound hearing loss.  Luckily the hearing aid and transmitter that I wear help a lot.  I truly believe that God has a special plan for each and every one of us who he chose to be conceived and born despite the TS odds against us.

Janice Suttie
Springfield, IL

 

Janice and her husband, Robert.





With Love

“Be completely humble and gentle; be patient, bearing with one another in love.” Ephesians 4:2 NIV

I remember the day that I found out that I had Turners Syndrome. I felt like a lab rat being poked and prodded. The worst part of the day was feeling different.  To realize what was ahead of me was frightening and made me feel strangely alone.  I went to school the next day and everything felt weird. While others talked about the next episode of “Saved by the Bell”, all I could think about was if I would be able to give myself growth hormone shots.

Just when I thought my life was on a ‘downward spiral’, God did something amazing that changed my outlook and gave me hope.  I was walking into math class when one of my classmates rolled her pencil onto the ground right in front of my feet.  As I bent down, she bent down, too, to look straight at me with a huge smile and whispered “you have Turners Syndrome… don’t you?”   Completely shocked, I answered with a timid “yes”.   Her smile grew huge as she exclaimed, “me too!”

Her name was Nikki. Through conversation we discovered that we went to the same doctor that was helping us through our growth hormone treatment.  I truly believe that God sent Nikki to me that day. She took me under her wing and the things that were overwhelming me when facing Turners Syndrome became more of an adventure.  Nikki and her mother, Holly, really helped my mom and me through the first couple years of growth hormone therapy. They also introduced us to the TSSUS support group in our community. Even though we were never close friends we truly shared a special bond. Even on a rough day in high school I could always count on seeing Nikki and her encouraging smile and nod when we would pass each other in the hall. I truly felt that I was no longer alone.

Nikki earned her wings on March 12, 2005.  She truly was an Angel. The biggest lesson I have learned from Nikki is no matter what you are facing in your life be willing to reach out to others and share love and be an encouragement to everyone. You never know who God might be placing in your life that might just need what you have to offer.

Emily
33 years old
Fort Wayne, IN

Future Plans

“For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.” Jeremiah 29:11

I have Turner syndrome. I used to be angry. Angry at the doctors. Angry at the growth hormone injections I took. Angry at my parents. And…angry at God. I went through a period in my life where I believe that God was punishing me for something. I was damaged. I was cursed. I wasn’t supposed to be on this earth.

Maybe it was the hormones I was taking, maybe it was depression, maybe it was the years of teasing by classmates, maybe it was the fact that I was different and I knew it, but I was a mess. I quit going to church. I fought with my family and those who loved me the most. I was angry. I was hurting.

There was no great flash of lightning, no loud voice, no angels coming down from heaven to comfort me. Instead, on night in my bed, sobbing,  I cried out to God and He heard me. His little child. He touched my heart and soul where I was hurting. I wasn’t healed, but I was well on my way to repair.

I am now proud of who I am. I am no longer ashamed or angry. I still struggle at times, but I know the Lord has a plan for me and a reason why I survived this long. After all, the odds were against me…against all of us. Who else but the Almighty Father could keep us safe and alive this long in our lives? We shouldn’t be here. Only God can defy those odds and incorporate me and my life into His Divine Plan.

At times when I am at my lowest, the words of the serenity prayer are my comfort” “Trusting that You will make all things right,
If I surrender to your will,

So that I may be reasonable happy in this life,

And supremely happy with You forever in the next.”

I will settle for a little happiness in this world for an eternity of overwhelming joy in the next.

I have TS. But I also have God by my side. He knows where I’m going in this life even when I don’t.

Lauren
Butler, PA

Words of Encouragement

"Do not love the world or anything in the world. If anyone loves the world, love for the Father is not in them. For everything in the world—the lust of the flesh, the lust of the eyes, and the pride of life—comes not from the Father but from the world. The world and its desires pass away, but whoever does the will of God lives forever." 1 John 2:15-17 NIV

I was surprised when Debbie asked me at dinner while she was visiting if I could write a blog about being a husband with a wife who has TS (Turners Syndrome). I never thought that anyone would want to know my opinion, but the dinner conversation proved otherwise. Everyone at the table stopped and listened to what I was about to say.

In my mind, there isn’t a difference between being married to a TS woman versus a non-TS woman. Being married is being married. Anyone who currently is married, or has been, knows what I mean. It’s a choice that each person makes every day. I choose to be married to my wife, and the fact that she has TS makes no difference to me.

Admittedly however, there are some things that I have to deal with that might not be evident in other non-TS marriages. The main issue that underlies everything is that of self-image and self-esteem. Turners Syndrome is sometimes characterized by physical traits which make the TS woman unique. This uniqueness is usually played out as being different in our materialistic and ‘looks’ oriented world. Due to this fact, many TS women view themselves with this same worldly view, and subsequently, have a poor self-image. This poor self-image can manifest into low self-esteem and even depression. A husband has to know this going into the relationship, and be there for his wife. Words of encouragement cannot be used enough. Being there to help cope, listen to, and be a shoulder to cry on is a must and a husband of a TS woman has to be ready for it. 

Another hurdle of a TS husband is the inability of your spouse to bear children. Again, in the end this falls back to the self-image issue. Due to the fact that my wife can’t give birth to our child, she feels inadequate as a wife, and even felt it necessary to apologize for not being able to give me a child. This again is a worldly view, and one that’s ingrained into women from a very young age: you’re defined in this world by being a mother.  Don’t get me wrong here; I’m not trying to downplay the biological clock that is inside every woman. As far as my role, I had to be OK with potentially not being a father, and not passing on my name via blood; a man’s version of the biological clock. But again, if I wanted to be with my wife, this was a hurdle that had to be jumped. In the end, it was easy to hurdle, after I got over my own selfishness. I realized that I’d give up anything to be with my wife, including natural-born children.

I like TUSSUS’ motto for husbands; “Silent Strength”. It sums up quaintly what it means to be a husband, especially one whose wife has TS.

Vinnie, Husband to Emily
Fort Wayne, IN



Vinnie and Emily Markowski at Barnes and Noble for Debbie' book signing in Fort Wayne, IN.

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.