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.