Celebrating TS Moms
Yesterday was Mother’s Day, so we want to feature some of the amazing moms within the Turner Syndrome community. Thank you to all of the amazing moms who support the TS community!
It’s going to be okay. There is absolutely nothing that cannot be managed. You will read and hear some negative expectations about what your child may struggle with but she will surpass every expectation. My daughter is an excellent student at a top university studying to be a teacher. Nothing stops her. Your butterfly will be wonderfully smart and capable of amazing things. We received a Turner Syndrome diagnosis at 17 weeks pregnant via amniocentesis. After a quite stressful pregnancy of unknown, our perfectly healthy daughter, Elvie, was born September 2016. She is our bright and shiny light who defies the odds! I had never heard about TS up until my 16 year old daughter told me she was pregnant, she was 6 months pregnant when I learned of the pregnancy and immediately I made Dr Appts only to learn there was a problem with the pregnancy and our Angel had a condition called Turners Syndrome. It is scary of the unknown but once she was born we knew we had a Miracle Baby regardless of the circumstances. There will be hard days when your TS girl will notice the things that are “different” about her, especially when other kids point them out. Be ready with a list of all the things that make her uniquely beautiful and special. It’s been a stressful pregnancy journey so far but there are resources out there and sometimes you just need to go with the flow. It will very likely feel overwhelming in the beginning. Learn as much as you can through organizations like TSF, but understand your daughter is not her diagnosis. She will amaze and test you like any other child. You will have an extra level of gratitude for her, knowing all she has and will yet overcome. TS may sound scary at first diagnosis, especially in utero, but keep the hope alive and give that baby a chance to be born and thrive! I was given the option for abortion and I’m so happy I chose life! My mom is my rock and has been a great advocate for me for 27 years! Being a mom to a 27 year old woman with Turner Syndrome and autism is no easy task. She is so strong and she’s my inpiration! Love you mom! Happy Mother’s Day! I have never heard of TS until my pregnancy with Meredith. I’m blessed she is here with me and learning everything about it. She is only 5 months and still learning. I just enjoy every moment and take it 1 day at a time. I have join a support group and it really does help! My daughter is an absolute joy to be around. She has some struggles in life, but takes them on full steam ahead. Cherish the time you get with your butterfly no matter how long or how short. God chose us to carry such special babies. We should never feel ashamed. We should always feel proud, I AM SO THANKFUL FOR THE TIME I HAD WITH MY DAUGHTER. God has truly blessed my husband and I with our daughter, Everly. He hand picked us the most perfect little miracle butterfly! Everly is doing amazing, she is hitting all her milestones, and she is the happiest little baby! She is now 16 months old, and she’s walking, babbling like crazy, and she’s just so smart! I’m such a proud mommy, and I just can’t thank God enough for choosing me to be her mommy. Everly is not letting TS define her, and she is and has beaten all the odds 🙂 Take it one day at a time. Everyday is a new experience and yesterday is great memory. You never know what the day will bring. I try to live in the present and not think ahead too much. My daughter has taught me that miracles are real and they can happen. I found out Alice had Turner’s Syndrome while I was pregnant. Turner’s truly is a spectrum and not knowing which features Alice would have was heartbreaking. The information available through the internet is varied also, so as a parent the uncertainty is scary. I delivered full term with no complications and so far Alice does not have obvious physical signs of Turner’s. I remind myself that we are fortunate to have a course of care outlined for us and that our baby is healthy. Many parents face health issues with their children and the best thing is to have resources and care. We are blessed with a baby girl who seems no different than her two older sisters. I know there will be treatments in her future, but for now we are loving and enjoying our sweet baby. My second pregnancy was a rollercoaster, I know how difficult having a diagnostic could be I want you to follow your guts. Put all your faith and love in the baby growing inside of you. No matter what you can find on internet, or ask doctor no one knows your baby yet. Trust in her, she is a fighter and get her involved in supreme love…you are a team now, to overcome what ever it takes. My advice to parents of TS girls is to not compare your daughter to ANYONE else. They are so unique and special and it will only drive you crazy to constantly compare! My mom is so fun and young-at-heart. This photo was taken in San Antonio, when she came to visit me during a work trip. Getting the diagnosis is scary. Getting that first echo is scary. Taking your newborn daughter to her first cardio and endo appointment is scary. It shouldn’t be. I was scared and nervous during all of these things, I shouldn’t have been. My girl is a miracle, I’ve never loved anything more. She’s so smart, far beyond in her development. She is two and a half months old now and has already beaten so many odds. These girls are simply meant to be. TS is scary, but it shouldn’t be. You take it one day at a time, you chew up, swallow and digest every little bump in the road and you continue to love her like you’ve never loved anything. Sometimes, you’ll hold her and cry when you have your bad days and think, “why her?”. But if not YOUR daughter, if not the very strongest parts of you, then who? She would not be the girl God intended her to be without her diagnosis. You would not be the woman God intended YOU to be without her diagnosis. It will shape you both in ways that you will never know. She will become a softer, sweeter human because she will understand struggles that most don’t. She will be strong, because she faced so many battles and conquered them, most before she was even born. You were built to handle this, she was built to handle this because she is the embodiment of every strength you’ve ever carried within you, and it’s amazing to get to hold in your hands the result of all the fighting and all the good things that you’ve ever done in your life. So don’t be scared. Have faith, and know that you hold a light that very few people get to experience in their lifetime. You are so blessed. She will be beautiful, and perfect, and smart and wonderful, and okay. That’s what I told myself every day during my pregnancy, because I was scared, and I shouldn’t have been; because she is everything I ever dreamed her to be. And your girl will be everything you ever dreamed her to be, and then some. Your biggest inspiration, your greatest love, your wildest adventure, your very best friend. 💜🦋 She is only 15 months, but she is so wonderful and such a gift. She is such a sweet, smart, and beautiful little girl. We never knew how much we needed Lola Mae. She inspires us everyday with her strength. The TS community never leaves us feeling alone. Enjoy everyday. Live in the moment and never assume the worst. Each moment is so precious. Grateful for Mom taking me to appointments and teaching me our Catholic faith. I love you, Mom! We found out about Josie’s TS at 10 weeks gestation. We were told she absolutely would not make it “much longer” every week until 22w. Her hygroma and hydrops started to resolve on their own and we prepared for a live birth! Josephine was born with coarctation of the aorta and had a very successful repair surgery at 13 days old. We spent one month in the CICU for her heart but otherwise, she was completely healthy! She did come home from the hospital with an NG tube but we were able to remove it after only a month. She is now almost 6 months old and thriving! She is in the 3rd percentile for height and weight but hitting all of her developmental milestones and is such a happy little butterfly! It was the scariest and most confusing time of our lives after her diagnosis during pregnancy. Miracles do happen and these girls are RESILIENT. She and my Dad are my biggest supporters. While every single day during pregnancy is scary, once your baby is here, it feels like a weight has been lifted. Yes, there are hardships ahead but taking them all one day and one doctor’s appointment at a time helps you to enjoy truly enjoy the miracle you have brought into this world.