Author: Nacy

Learning About Axenfeld-Rieger Syndrome “My pregnancy with Mehlani was overall normal and healthy. I was 18, I didn’t have any serious medical Issues, every doctor’s appointment was quick and easy. My labor was the same way. Everything went smooth and after 10 hours of labor, our baby girl was born. Mehlanis’ father and I were in awe of our precious baby and ecstatic to receive our first child. We had no idea anything was different with her eyes, not until our last day at the hospital. It was a Friday and we were going to finally be able to check-out…

“’Trisomy 18.’ ‘Incompatible with life.’ ‘Why would anyone want a baby like that?’ I think back to the day those words shook my pregnant body to the core and crushed the deepest parts of my soul. I quickly went to Google searching for hope. Instead, I found none. I closed my web browser feeling worse than when I opened it. I didn’t understand how the baby so full of life within me could be THAT sick. I didn’t understand how she was so beautiful in her ultrasounds, yet the doctors would only tell me about how ‘scary’ she would look.…

“MY TWO QUEENS! There are many times in life where you get to watch wonderful things happen. I have been so very lucky to have witnessed one of these wonderful things unfold under my eyes and couldn’t be prouder of these two girls. These two young ladies have made a huge impact on my life and have taught me so much – Skye Lemay and Delaney Inabnet. Skye, I have known and taught for over three years and Delaney, I have known just over a year, but I have come to think of her as a daughter. So here is…

“Steph and I met when I was 16, and she was 18. At the time, I was dating a girl who introduced me to her friend group. Steph just so happened to be a part of it. We were both in our wild stages of life, and although we noticed each other, we weren’t really trying for one another. Years went by, and in that time, I got pregnant with my twins, and she got into in a very serious relationship. We had our own lives that had nothing to do with each other, although we did keep in contact…

“After having one miscarriage and one ectopic pregnancy it was time to have the talk. My husband and I sat down in January 2015 and decided no more children. It had been a hard, painful road, but we were a happy family of 3. We let pain, fear and ‘what ifs’ take over. The very next day I saw one pregnancy test in the bathroom. Something was telling me to take it. My mind was like ‘just do it so you can throw it away and close this part of your life.’ To my surprise it was positive. I had…

WE NEED YOUR SUPPORT: You’ve read our raw and emotional stories of hope, compassion, grief, healing, and kindness. Unlike many publishers we have not put up a paywall, but we depend on contributions from our amazing readers. We’ve had 200 million likes and 10 million shares…and now, we need just $5 from you. Become a Love What Matters supporter on Facebook and receive exclusive stories and videos while also helping us to keep spreading the love throughout 2019. “When I was 18 years old, I had an abortion. The reasons were deplorable. I was in my first year of college, with a boyfriend I…

“Our story started long ago, when I was about 12 years old. That was when I realized that my future would look different than other people. That is when I knew I would someday adopt a baby with Down syndrome. Fast-forward to 18-year-old me, meeting the love of my life. When I met Kevin, we quickly fell for each other. Right away, I told him not to fall in love with me unless he wanted to pursue that for our future family. I am one lucky lady. That amazing man of mine not only fell in with me, he fell…

“At our 20-week anatomy ultrasound, we had a scare. The ultrasound tech could not find our sweet baby’s stomach on the ultrasound. As she continued to look, I noticed she was also spending a lot of time looking at her brain. They had found a CPC (Choroid Plexus Cyst) on her brain. The doctor came in my room to explain that these are ‘pretty normal’ in most growing babies and it should resolve on its own. She then explained that, with these two findings, there was a very low risk that the baby could have a genetic disorder. She was…

“Six words, six little words made my whole world fall apart. ‘Your baby may not make it’ – I jumped off the exam table and threw up in the trash can. I was 22, pregnant with my first baby boy. I should’ve been ecstatic, preparing to welcome my sweet boy. Instead I was attending appointment after appointment to find answers as to what was wrong with him. My now husband and I found out we were expecting on our 5-year dating anniversary. I cried, I was scared and excited simultaneously. I warmed up to the idea and just kept thinking,…

“‘I have to share this. I have to know I’m not alone. I have to let others that feel this same way know that THEY are not alone. I look ugly, there are tears and snot running down my face. I probably haven’t showered in days. I’m wearing my old Star Wars shirt (do I really want people to know I love Ewoks?). Yes, I must do this. Collect yourself, Kylee. Everyone is safe, and now it’s time to share. You promised you’d share the good, the bad, and the ugly on this journey. But what will people think? Will…

“This was the most terrifying part of Judah’s first few weeks in this world. Spoiler alert: it has absolutely nothing to do with Down Syndrome. When Judah was 3 weeks old and on his actual due date, he had his first evaluation. This is when a service coordinator and some experts in early intervention are sent to your house like Fairy Godmothers. These ladies hugged, loved on and inspected my baby boy for the services he would need. In Judah’s birth story, I may have given the impression that once we were home, we were healed. This was not exactly the…

“Have you ever had that moment where you realize you finally have everything you ever wanted in life and feel so utterly grateful that you can’t even put it into words? Like your heart is literally going to burst it is so full? I have. And less than a year after I felt that bliss, my life – as I knew it – was completely and utterly dismantled from top to bottom. Myself and my husband – the love of my life – had been trying to stabilize my personality-disordered teenage son (from a previous marriage) for several months, after…

“December 2nd, 2017, the day my life changed forever. My baby girl was finally here with me. I should have been high on endorphins and deliriously happy, but unfortunately, there was doubt, fear, anxiety and my ‘new mom’ high was stolen from me. Amelia came in to this world with a short, extremely weak cry and bearing unexpected news that sent my family and me spiraling into the unknown world of a life with a medically complex child. My pregnancy with Amelia was after a pregnancy loss at 11 weeks. So, besides the anxiety that comes with a rainbow baby,…

“I’ve always known I wanted to be a mother. But that’s not to say I was always ready or even interested in kids. In my childhood and as a teenager, I was never that girl that was into playing with babies. I honestly felt like I didn’t know what to do. Growing up the youngest in my family, it felt extremely foreign to be around younger kids (even with all my attempts at babysitting). It wasn’t until I was a 19-year-old college student and offered a long term nanny job that my life completely changed. I learned a lot, made…

“Our miracle, Samuel (Sam) Patrick England, was born on January 4, 2018 at 25 +5 weeks weighing only 1lb 4 oz. He has been a miracle from the beginning. As someone who struggled with miscarriages in the past, we thought we were ‘done’ having babies because we didn’t want to push our luck. I was 8 weeks before we found out I was pregnant. We did genetic testing at 10 weeks solely to find out the gender, little did we know that our world was about to changed forever. Nicole Chatham Photography Our results came back as having a high…

“It was just another pregnant Sunday. As a family, we were preparing however we could to welcome a new baby any day. We did every piece of laundry in the house, which seemed like 638 pieces and it might have been since we had a family of five at the time; we cleaned all day. I was exhausted and nauseous all day. I assumed it was because our new baby, Lincoln, would soon make an appearance because I remembered my three previous pregnancies ended in exhaustion and nausea. Lauren George My middle son and I went to the mall to…

“‘You’re having twins!’ The ultrasound technician looked at us with a huge smile on her face, ‘what? Are you serious?’ We couldn’t believe we were pregnant with twins. Our prayers about having twins had been answered. The next appointment we attended was to measure the fluid behind the babies’ necks and that’s when I knew something was wrong. The technician told us it looked like there was a build up of fluid on Twin B, but that she wasn’t positive. That’s when I started to get worried. A week later we got a call from my doctor. Just as I suspected,…

“My husband and I were married a few months after we graduated college. One and a half years later, we welcomed our beautiful and healthy baby girl. When she turned one, we started talking about having another baby. We were excited and were expecting a similar pregnancy to the one I had with my daughter. After our second try, I took a pregnancy test and, to our excitement, we got a positive result. Lisi Lopez We decided not to tell anyone until we went in for the ultrasound. The technician probed around my belly awhile. I noticed that my husband’s…

“I never really knew what it meant to be a true advocate for a child until we had our last. We were sent to the hospital for a low resting heart rate and suspicion of Down Syndrome. After arriving at the hospital shortly after our daughter Amadeus was born, we were greeted and taken care of quickly. The nurse that was getting our information at check in was harsh and rude and couldn’t believe we delivered her at a birth center and after she checked her body temperature, she quickly whisked her away without warning, leaving me (in a wheelchair…

“When I placed my order I said, ‘Regular amount of chromosomes, please!’ That’s what everyone else got and what I wanted too. They called me shortly after my order was in production and said, ‘Great news, we went ahead and upgraded you to extra chromosomes for free! You’ll receive the extra chromosomes with your completed order in 9 months.’ What?! I was mad! All the other orders I had seen displayed via perfect Instagram posts did NOT have extra chromosomes. Well I decided that receiving my order with extra chromosomes was better than not receiving an order at all, so…

“What you see in the picture is completely different than what I see. Courtesy of Erin Statz The only reason why I I know you view it differently than me is because I know something about one of the children that you don’t. You see two children holding hands and playing on a playground. Nothing special, just cute as usual. Children playing like they usually do, like they should be doing. But it is so much more than just that. The little boy on the left has Down syndrome. When we found out after he was born the doctor thought…

“In June of 2015, just three weeks before reuniting our long-term foster boys with their family, we found out I was pregnant. We were shocked and elated, to say the least. Our oldest daughter was 8 years old and the heartache of losing her foster brothers was quickly overshadowed by a joy I can’t put into words. It felt like God was rewarding us for opening our hearts and our home to foster care, and it was the greatest reward I could imagine! Courtesy of Tammy Pearl By 20 weeks, my pregnancy was going smoothly, and I felt great. But as we…

“What does Down Syndrome mean to you? Stigma created by society lead us to believe that this condition was a disability, disadvantage and something to be feared. Today I want to share our story with you about how one precious soul changed our entire perception and view. Courtesy of Aimee Clarke The day I went into labour, I was sitting at my desk at work when suddenly, I had a feeling as if my waters were breaking, but surely not he’s too early! I quietly got up and ran to the bathroom and called my midwife, she proceeded to tell…

“I was previously married and went through several rounds of fertility treatments including intrauterine insemination and in vitro fertilization (IVF). These either weren’t successful in granting pregnancy or ultimately ended in miscarriage. The heartache and loss, especially the feeling of being a failure at being a woman, ultimately caused an end to that marriage. I also have a pretty complex medical history that includes Endometriosis, polycystic ovarian syndrome (PCOS), Hashimotos, methylenetetrahydrofolate reductase (MTHFR), severe small fiber neuropathy, Postural Orthostatic Tachycardia Syndrome and Gastroparesis just to name the bigger things. In April 2013, I was a member of Match.com and as a…