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.