This is Jade

This is Jade. To anyone who doesn’t know her story, she looks like your average 10 year old. If you look closely she’ll have scraped knees and crazy wild tangled hair. Freckles dot her sun kissed nose from playing outside. Her deep blue eyes sparkle as she talks a mile a minute about the goings on in her life. She loves to ask a million questions a day blaming it on her inquisitive nature (her words not mine). Jade is special. She is overall one of the sweetest girls I’ve ever known and many people who meet her agree. People are drawn to her, they are touched by her kind and loving personality. Yet despite how amazingly well Jade has thrived in her 10 years of life, this girl, my daughter, was never supposed to live.

Christmas Eve 2008 I found out that I was pregnant with my first child. My boyfriend Jeff (now husband) and I were ecstatic. Everything seemed to be going well until I had my first ultrasound when I was 12 weeks pregnant. The Ultrasound tech told me I would need to see the Dr. to go over my results. On Valentine’s Day, I got the news that no expecting parent ever wants to hear. “There is something wrong with the baby”. I remember hearing those gut wrenching, stab you in the heart words and just wanting to give up living right then and there. I was frozen with fear as the the Dr. explained that Jade had a cystic hygroma on the back of her neck, which was a sign that something was wrong with her development. She also had a 2 vessel umbilical cord, which was another “tall tale sign” that this wasn’t a “normal pregnancy”. The doctors weren’t quite sure what was wrong without conducting further invasive testing, but they were 100% positive she wasn’t going to be born. They told me I had until 22 weeks with her before I would find that my child had died in utero. A fate that no expecting mother can even begin to fathom. Every week, every day, every minute, every second a ticking time bomb to the unforgiving fate of losing my child that I already loved more than words could express. The Doctors made assumptions about her condition. It could be Down syndrome or Turners syndrome and that most babies with that kind of diagnosis only have a 2% chance of survival, but that Jade’s case was so severe, she wasn’t even in that range. They believed her survival rate to be 0. They said I’d be better off terminating my pregnancy because if by some miraculous chance she was born, she would be severely physically and mentally disabled. My heart was torn out of my chest that day. I don’t think I had ever suffered so much in my 21 years of life. Jeff and I went to our family in tears destroyed by this devastating news, not knowing where to turn or what to do. Our family and friends guided us to pray and give this pain up to God. We needed to understand we were not in control. Thankfully after a long internal battle filled with emotional turmoil, we listened and were able to turn to God and put her life in His hands. 22 weeks came and went and I finally was able to let go of the control I was so desperately trying to have of the situation and asked God for peace. He provided me peace and more than that. He provided us with a miracle. After months of heartache, uncertainty, fear and fervent praying our sweet daughter Jade was born perfectly healthy at 39 weeks and 2 days.

  After Jade was born, we conducted genetic testing that confirmed she does have Turners Syndrome. In reality I had no idea what Turner’s Syndrome was at the time. The words scared me due to my lack of education about it. Turners Syndrome is a genetic disorder that affects 1 in 2,000 girls, and there is only a 2% chance of survival for unborn girls with this condition. At the time I could not believe how scary words are that come with syndrome attached to them. Back in 2008 and even now there wasn’t a lot of information on Turner’s Syndrome. I had never even knowingly met anyone with it, because it is a genetic disorder that mainly effects the endocrine system. It’s not very outwardly visible on the child except for a few markers and their height. There are more severe cases of Turner’s where the child can suffer from heart, kidney or hearing, but all in all, these girls are still your typical girls, doing the same things as girls their age, just sometimes with some medical setbacks. 

  Now that my daughter is 10 we’ve begun to tell her more about her condition. You wouldn’t even be able to tell that she has Turner’s except for her height, which is starting to drop on the growth chart. Despite that, my daughter Jade is doing great! To this day I refuse to put her in the box of a medical label and create limitations for her. Yes Jade is short for her age, but I try to change her focus on the positive. I try to bring her up about her height, I tell her we all were made the perfect height. I will not turn her height into a disability. She is perfect the way she is and I refuse to believe that she can not overcome any challenges that come her way. She has such a positive outlook on all of this. She has more courage then I could ever possibly have. God knew what he was doing when he created her, and I know he has big plans for her!

  Thinking back to when doctors said Jade would have a severe physical and mental disability by the fluke chance she was born, they were so utterly and completely wrong. They have been wrong time and time again. She has done everything early in her life. She crawled, walked, talked, potty trained earlier than the average child. She is highly intelligent, she speaks two languages. And she has the biggest heart of anyone I know. She notices the sad and broken hearted and will go to them to comfort them even if they are strangers. She smiles and talks to the elderly and to small children, and makes everyone feel like a long time friend. She doesn’t have the heart to harm even a single fly (she gets upset at me if I do). She is an avid reader and has a very advanced vocabulary. She truly is a gift from God and perfect in every way. This is what “Turners Syndrome” looks like. This is Jade. I can’t believe what I would have missed out on had I listened to the doctors that claimed to know everything. Don’t give up hope on your little ones over a diagnosis. It may be the most painful and terrifying thing you ever hear in your life, but don’t ever give up hope for your baby. If your baby is strong enough to fight for their lives, they have earned their right to live. They are fighters and so are you. You are the protector of your child, and you have nothing to be afraid of. God’s got this! And with his strength, so do you. Don’t let yourself live with the doubt of what could have been.