‘I could feel in my soul something was off about this pregnancy. ‘We can’t find anything worrisome.’ They were missing something, and I knew it.’: Couple uproot themselves for son’s Angelman Syndrome diagnosis, ‘He is our little angel’

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“I got pregnant with my third child in 2014. Having two girls, we decided it would be fun to not find out the gender of this baby. We were so hoping for a boy, but knew we would be happy either way. My pregnancies had been rather easy, with almost no sickness. And this pregnancy was going just as smoothly as the other two.

Courtesy of Courtney Gray

I went to my 20-week ultra sound appointment by myself because there would be no gender revealing. During the ultrasound, the tech told me she was going to have a doctor come in and take a look. The doctor came in and did some additional measuring. By the concern on his face, I could tell they thought they had found something. The doctor then began showing me some of the concerning things on my baby. A little spot on the heart and some shortened limbs. All signs of Down syndrome. I would need to wait a few weeks to do a more extensive ultrasound at the hospital. Those next few weeks had me completely in shock. During this time, I connected with a friend of a friend who has a child with Down syndrome and she expressed to me the joy he has brought to their family; it calmed my worries quite a bit. But I still felt like something was different about this pregnancy, even though it was going as smooth as the others.

The appointment finally came for the extensive ultrasound. This time they couldn’t find any of the worrisome signs that were there before and told me there was a good chance the baby did not have Down syndrome. Again,  I left shocked because I could feel in my soul something was different. I had prepared myself for them to confirm Down syndrome. This left me feeling happiness for a healthy baby, but also an uneasiness at the same time.

In May 2015, I had a smooth delivery of a healthy baby boy about 2 weeks early. They covered him as he was delivered, and my husband was able to announce the gender to all in the room (which is always many people – my dad, mom, sisters, mother-in-law, and sister in laws). It was such a happy moment, but I remember looking to my husband and asking, ‘Does he have Down syndrome?’ My husband replied, ‘I think so.’ They took the baby to get washed and I calmly asked the nurse if he had Down syndrome. She was shocked at my question and said, ‘No! What made you think that?’ I still knew something had to be wrong, they were missing something. But no, he was totally healthy.

Courtesy of Courtney Gray

We named Madden after a few days of having no idea what to name him. I went to type the name Maxwell in my phone to add to a list we were looking at and it autocorrected to Madden. I knew it was the name! Madden Hyrum (after his dad Hyrum) Gray.

Madden was a perfect baby. Calm, handsome, and smiley. Hardly ever cried. Between me, grandparents, sisters, and doting babysitters, he was almost always being held. After a month of trying to breastfeed him without him gaining much weight, we started formula and it was smooth sailing. I was surprised when they recommended he get a helmet for a flat spot for never moving off of one side. I chalked it up to the things I had read about boys being slower to develop. At Madden’s 6-month checkup, his pediatrician told me he was behind on his developmental milestones, and I blamed it on the dang helmet he has to hold up. She recommended getting into some therapies, and I blew it off again as boys being slower to develop. At his next appointment around 9 months, his pediatrician again reiterated he was even further behind on his developmental milestones, and I really needed to get him into some therapies. I agreed and was in a bit of denial there could be something wrong, although I knew deep down there was. I had known my whole pregnancy. Now it was time to get him the help he needed.

Courtesy of Courtney Gray
Courtesy of Courtney Gray

Madden started in-home therapies every single week, multiple times a week, at 9 months old. Speech therapy, occupational therapy, and physical therapy. We had therapists constantly in our home. It became apparent he was severely developmentally delayed across the board. He didn’t babble, and hardly moved. No rolling or lifting his head. We then started seeing specialists. After an ABR test (hearing), genetic testing, and an MRI, the only thing that came back was some ‘white matter’ on the brain usually present with kids with global developmental delays.

After the neurologist met Madden around age 1, he threw out the words ‘Angelman Syndrome.’ We had never heard of such a thing. He said kids weren’t usually diagnosed with it so young, but it was worth testing. He ran the labs for it, and we spent the next week Googling every thing about it. Madden fit every single symptom. I cried and prayed and thought for sure this was it. A week later we received the test results, and it was negative for Angelman Syndrome. We were stunned. At the time, I had a large Instagram following for an e-commerce shop I owned, and we shared a lot of our family. I received hundreds of messages from people all over the world asking if I’d ever heard of Angelman Syndrome because Madden seemed to have it by all the videos I posted of him. I wrote each person saying he was tested and that was not it. We felt like we had hit a dead end.

At the time, we were living in Utah, where my husband and I had both grown up. We were self-employed, and got the itch to move to try some place new and be exposed to new doctors who could help us further our search for a diagnosis. We narrowed our destinations to 3 states, put a poll out on Instagram, and got an overwhelmingly high response of people telling us to move to Texas. We put our home on the market, sold it and all our furniture with it within 24 hours. We traveled to Texas to check out places, and fell in love. We ended up in the greater Austin area. Madden was 2 when we moved and we are so glad we did. Everything fell into place.

Courtesy of Courtney Gray
Courtesy of Courtney Gray

We were quick to get Madden back into home therapies, got him a walker, and got in with specialists at the children’s hospital in Austin. We still felt a long way off from a diagnosis, and had a development pediatrician say we might never receive one. But I was sure we had moved here for a reason.

Courtesy of Courtney Gray

After 2 1/2 years of living in Texas (Madden now age 4 ½), we started to notice some seizure activity and were scheduled for a 48-hour EEG. The same neurologist who ordered the EEG also told us of a different test they could run to see if Madden had a more rare type of Angelman Syndrome. A mutation of the UBE3A gene rather than a deletion of the gene, which was what the other test was looking for. She ran the labs. A week later and the night before heading to the hospital for the EEG, the neurologist called to let me know they indeed had found the mutation – Madden had Angelman Syndrome.

Courtesy of Courtney Gray

Relief, fear, sadness, and stress all coursed through me as I was driving with a car full of kids to a church activity. I started sobbing. I always knew it was this. God had prepared me. My son was truly an angel, and now he had the diagnosis to prove it. When I called to tell my husband, his level-headed response was, ‘Yep, he’s an angel.’ You’ve never met a dad who adores his special needs son and all his milestones like my husband does. He’s our calm.

Courtesy of Courtney Gray

It’s crazy when you have a diagnosis for your child, doors start to open up. The next day at the hospital for his EEG, we were visited by different specialists ready to help us in our journey.

Angelman Syndrome brings on some lifelong challenges. Chances are, Madden will be completely non-verbal his entire life (although we are working on signs and a communication device). He has seizures, low muscle tone, and severe cognitive and physical delays. We give him multiple medications, multiple times a day (which will continue for the rest of his life). He is still wearing a diaper at age 5 with no end in sight. We lock him in a safety bed each night only to have him wake hours later every. Single. Night. This is due to sleep issues which go along with the syndrome. We always have safety medication on hand in case of seizures or severe allergic reactions. We have every door and toilet with a locking mechanism on them in our home. We have to have eyes on him every minute he is awake in case of seizures, or what we like to call ‘tornado baby.’ He’s been known to pour out bottles of syrup, honey, shampoo, smear poop and eat some Tide pods (worst day of my life).

Courtesy of Courtney Gray

Our philosophy on raising a child with special needs is to give Madden every single opportunity we give our girls (ages 11 and 9). We take him on vacations, hikes, and adventures. We live for swimming in water holes and Madden could swim in a floaty years before he could fully walk. I constantly talk to him and tell him all about the things around us in detail. His sisters literally fight over who gets to cuddle and play with him.

Courtesy of Courtney Gray
Courtesy of Courtney Gray
Courtesy of Courtney Gray

He has found his own way of communicating to us using non-verbal communication cues, some sign language, and most recently a PEC board where he can point at words that have a correlating photo in preparation for a device that will be able to speak for him. We document his life almost daily through an Instagram (@maddenhyrum) dedicated to him, and we use it as his journal of accomplishments and hardships. Madden currently attends Special Ed kindergarten at our local public school, and gets to go in the general Ed classroom for some activities.

I honestly wish more children and adults could have the opportunity to spend time around special needs people. They can teach life’s most valuable lessons such as loving without judgement, and finding joy in the little things. Service is an incredible expression of love, and I am lucky to serve Madden by being his caretaker. It has truly changed our family for the better.

Courtesy of Courtney Gray

We acknowledge life can be overwhelming at times for everyone. And raising a child with severe special needs is a test of our stress levels, that’s for sure. Madden will soon be taller and stronger than me and his aggression could increase as his communication and limited ability frustrations grow. I have to constantly remind myself to live for the now, and not to stress about the future. We will prepare for his future life with us, but try our best not to stress about it. This is how I make it through the day. And with a surplus of hugs and laughter from my angel on earth, Madden.”

Courtesy of Courtney Gray

This story was submitted to Love What Matters by Courtney Gray. You can follow her on Instagram here and here, and Madden’s journey here. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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