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Read MoreAt 20 weeks pregnant my world turned upside down. We got the news from our doctors that Paisley had a rare lethal form of dwarfism called Thanatophoric Dysplasia. Thanatophoric Dysplasia or TD for short is a severe skeletal disorder characterized by a disproportionately small ribcage, extremely short limbs and folds of extra skin on the arms and legs. The term Thanatophoric is greek for "death bearing". Children with this condition are usually stillborn or die shortly after birth from respiratory failure, however a small number of individuals have survived into childhood and a very few beyond. Survivors have difficulty breathing on their own and require respiratory support such as high flow oxygen through a cannula or ventilator support via tracheotomy.
Read MoreFrom Discovery to Diagnosis: How I Learned Both of My Children Had Autism
Stephanie Hanrahan retains all rights to this article, which was first published on Tinkles Her Pants.
It’s fair to say all moms are overworked and underpaid. That’s just part of the contract that involves caring for little people. But what no one really signs up for is overtime, and that’s what I got. Double overtime actually.
Also known as two children with special needs…
Read MoreThe Universe knew that I would love her. That I would fight for her, advocate for her, and be everything she needed from a mother. I felt like my entire life had led up to this, had prepared me for this: to be Ivy’s mom. Maybe that’s why I’m such an empath. Maybe Ivy will need a mom who is empathetic, compassionate, and loving. Maybe that’s why I’ve advocated for others in the past— it was all practice for Ivy. But then things shifted again. And instead of thinking that Ivy needed me, I started to realize that I’m the one who needs her. She saw me and said “Yes. She needs me. She needs me to be her daughter.” It’s not Ivy who needs me. I need her because she completes me, completes my family, in ways I never realized. She’s a balm to my soul, a salve to past wounds. Ivy will teach me things I didn’t think I needed to know, or maybe didn’t want to know.
Read MoreHi! My name is Jennifer and I am mom to two amazing kiddos-twins, Lilith and Edison. My husband, Adam, and I have been married for 6 years. We tried for several years to get pregnant, struggling with infertility and other health complications. So when the day came that we were told we were pregnant—miraculously, with not just one baby, but TWO—we were elated! We chose not to find out their genders until they were born.
Read MoreSilas wasn’t even 24 hours old when he failed his first hearing test. As a brand new mom trying to juggle hormones, breastfeeding and everything that comes with this, I don’t think the possibility of Silas actually being deaf ever really crossed my mind. Before we left the hospital he had a repeat screening and I figured everything would be fine but instead, my perfect brand new baby boy failed the newborn hearing screening in both ears for a second time. I desperately asked for words of encouragement from every doctor and nurse that had wandered their way into my room, almost begging them to tell me that this was common and seen often, even if it wasn’t.
Read MoreOur little warrior, Ryder, has been in and out of the hospital since he was born. He received an emergency blood transfusion when he was two weeks old and has been challenged with an uphill battle since. He was diagnosed with a rare blood disorder called hereditary spherocytosis, which is something he will have his whole life.
Read MoreOn November 27th, 2018, my husband and I went in for my 22 week ultrasound. We went in so excited because we were finally finding out the gender and were planning a gender reveal party later that night with our friends and family. The tech wrote it on a paper and the nurse called my sister in law to let her know the gender (since she was the one making our cake pops for the reveal). Once the tech had written down the gender, we met with my doctor to discuss the ultrasound. The first thing he told us was, “We need to talk.”
Read MoreWhen my husband and I found out we were pregnant, we were so excited. We weren't exactly planning for a baby just yet, but we couldn't wait to be parents. I chose to take a blood test at 10 weeks to find out the gender, but we were surprised with much more. When the results came in at about 15 weeks, I got a call to come in to my OB’s office, and I did not like the tone of voice on the other end of the line. My husband and I reluctantly went to the appointment, expecting horrible news. We were told at first that it was Turner's syndrome, and then they thought it might be Trisomy 18 or Trisomy 21. I was crushed. What I took from our conversation was that we were not going to be able to keep our baby.
Read MoreIt seriously seems just like yesterday we heard the words, “Your baby tested positive for Down syndrome." My eyes still well up in tears when I think of that moment. The world froze. I could see myself looking from the outside in. It did not feel real. We were devastated. We felt like it was the worst thing to ever happen to us at that time. This is simply because we just didn’t know any better. We had never been exposed to Down syndrome, or any special needs, for that matter. If we only knew the love and joy that was to come we would never have worried.
Read MoreMy husband and I had been married for only nine short months before we found out that I was pregnant. We weren’t exactly “trying” for a baby, but we were both thrilled and nervous upon seeing the first positive pregnancy test! The first few months flew by, and despite the pregnancy handbooks and websites that warned of first trimester symptoms like morning sickness and food aversions, I didn’t experience a single symptom! In fact, physically, I felt great. At my first OB appointment, my doctor assured me that my baby’s heartbeat sounded normal, and the ultrasound technician sent us home with images of our perfect little bean. At that point, we were expecting a normal, smooth sailing pregnancy with a perfect little baby at the end of it. (Boy, were we in for a surprise!)
Read MoreLooking back at the day we went in for Joseph's ultrasound, I remember how quiet the room was and how the tech said, "The doctor will review and call you if needed." It felt odd, but in the moment we were excited to share the news that we were having a baby boy! A day later we found out about our right hand man. We shared the shocking news with close family and friends immediately but it took us a month to share with others. We did it by posting this picture and telling this story…
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