Judah

I spent weeks mourning the loss of the life we planned. A life where my child could run and hike and surf and grow to be anything he wanted. A life where I would bring my child home from the hospital. Where each minor cold would not cause panic and anxiety. I wondered in those weeks if my child would have the opportunity to feel my arms, to rest his broken heart against mine. I wondered if the only life he would ever know would be cold and painful and ruled by hospital policy. I wondered if choosing a course for him that would guarantee pain and complication was selfish. Was I choosing a life he would not have chosen for himself?

Amadeus

My last pregnancy was just like all my other pregnancies. No abnormalities, nothing we worried about, nor was our birth team showing any concerns. At 38 weeks, our baby was ready to meet our family. We were shocked because our last baby not only came earlier than all of our other babies, but our labor was a lot longer and harder. We all were so eager to meet the final member of our family. I had a beautiful water birth surrounded by our family, and I nailed my birth plan, but unto our surprise, we had a beautiful baby girl (we were sure we were having another boy)! Moments after our precious daughter arrived, I started to notice a few differences in her face…nothing I was worried about, but she did look a bit different than my other squishy babies. One of my friends/clients had recently had a beautiful son and my daughter had a few features that resembled some of his, but no one was saying anything, so I quickly dismissed it.

Sloan

On April 9th, 2019, Sloan LouElla was born! After 9 years of marriage + fur-baby-parenting, we were adulting to our max capacity (joking, haha, does anybody actually do that?)...and we were excited for our little human-baby. We had prepared, prepared, and prepared. We started a ‘baby box’ in 2016 - just collecting little things for our future human while we were out traveling, shopping, etc - and we were ready for what we thought was going to be a very typical birth/baby experience. After an extremely intense, traumatic, beautiful, life-altering year - we’ve learned that while preparation is wonderful, some of the most amazing, life-altering experiences come from the moments you least expect.

Grayson

We returned to the high risk office for the anomaly scan as planned. That morning, I once again felt an overwhelming sense that something was wrong. The tech that was doing our scan was as pleasant as could be and made no indications that anything looked abnormal. I was feeling relieved and hopeful that all looked good when we went in to discuss the scan with the OB. He looked my husband and I straight in the eye and said "Your baby looks great, healthy and thriving, but he appears to be missing part of his left arm. It seems to just taper off after the elbow." Wow. Talk about a gut punch. My mother's intuition had been right - there was something that wasn't quite right...but oh if only we knew then just how perfect Grayson would be, limb difference and all.

share your storyMacy GilsonSeptember 23, 2019limb difference, the lucky fin project, lucky fin Comment

Cason

Cason was brought back to his father and I, and we were told Cason had ANSD (Auditory Neuropathy Sensory Disorder) and he was profoundly Deaf. In that moment, my world went silent, ironically just like my child's. I didn't hear anything being said, I didn't know what they were telling me, all I could think to ask was, "Will he ever be able to hear?” and, “Is he going to be okay?" I know now that it was just the shock. I have a perfectly growing, intelligent boy just like the day he was born.

share your storyMacy GilsonSeptember 16, 2019deaf, deafness, ANSD, auditory neuropathy sensory disorder, cochlear implants, CI, ASL, American sign languageComment

Bryn

On February 9, 2018 in the late evening and two weeks early - our second daughter, Bryn Ryan Cotant was born and then rushed to the NICU. We were only able to see her for 22 seconds, as she was born in stress with the softest cry and immediately passed over to be evaluated. After what felt like days, even though it was only a few hours, we were finally able to go see her. As my husband, Kris, and I took turns holding her, praying over her and loving on her, we, of course, could sense that things were not totally okay.

share your storyMacy GilsonSeptember 9, 2019special needs, special needs parenting, NICU baby, NICU fighter, au-kline syndromeComment

Leo

After a very normal pregnancy, and semi-normal birth on February 22, 2016, Leo made his way into the world. After the first couple of days my husband and I started to worry that something wasn't quite right. Leo was unable to keep his temperature up and had an odd jerking movement that we noticed. The doctors all brushed us off and insisted nothing was wrong, we were just paranoid new parents. So we took him home and tried to ignore our guts. After just a few days home we couldn't take it anymore. We knew in our hearts something just wasn't right. We took him straight to the children's hospital that was an hour away and hoped they would listen. And thankfully, they did.

Lily

It took my husband and a I a little while to get pregnant. There is a history of PCOS in my family and I wasn’t spared. It took several combinations of medications to get us there in a little over a year with no shortage of tears and frustrations. On March 8, 2018 I got the faintest positive on a pregnancy test. A week later we went in for an ultrasound and our nurse gave us the shock of our lives: twins.

share your storyMacy GilsonAugust 26, 2019chronic lung disease, preemie, NICU, NICU baby, tracheostomy, NICU fighterComment

Owen

“Aw he’s so cute, look at him sticking out his tongue!”

“How come his tongue is never in this mouth?”

“He was born when?! He’s huge!”

“What’s with his tongue?”

These are just a few of the many questions we received and continue to receive about our son Owen’s appearance. He was born with Beckwith-Wiedemann Syndrome, a rare genetic syndrome that increases his risk of developing childhood cancer.

share your storyMacy GilsonAugust 19, 2019share your story, BWS, Beckwith-weidemann syndrome, genetic syndromeComment

Stella

After 5 1/2 years, my husband and I (mostly me) decided that we wanted to have one more baby. We already had two wonderful boys that brought us so much joy and laughter. I love being a mother!! It's what I was born to do. And I felt like they were growing up so fast and I was ready for more. After a year of trying to get pregnant and two miscarriages, we finally had our baby on the way. I could not have been more excited and terrified at the same time. Starting over again after six and a half years was a little intimidating. I was having a fairly easy pregnancy and loving the feeling of growing a little human inside me. There are no words for this.

Gwendolyn

At my 11-week ultrasound, the doctor ordered a blood test to check the gender and ensure everything was genetically normal. For women over the age of 35, this test was routinely recommended. I was elated! I had the opportunity to find out the gender almost 10 weeks earlier than normal, since that is typically not done until closer to the 20-week mark. The genetic part seemed like an afterthought and I wasn’t worried in the least about it. My doctor said the results would be emailed to me, and a week later as I was checking my inbox for the results, my phone rang. I was at work and completely surprised to see my doctor calling because I hadn’t expected a phone call from her. I immediately felt a sense of dread. When I answered the phone my doctor quickly asked if I had seen the results via email yet, and I told her that I had not. Without further pause she said, “Your baby has Trisomy 21”.

Sebastian

I remember when the doctor so non-chalantly said, "Your baby has Spina Bifida." I promise you, I looked at my husband, with a shoulder shrug, like, “Oh, okay,” and then turned to the doctor and asked, "Well, what's that mean?" I'm not sure what we thought it meant, but we were not ready for the diagnosis we were given. He explained to us what spina bifida was, and that it would need to be surgically repaired. Instantly the tears poured out. How could this be happening again?

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