The transformation to a special needs parent

I’ve been putting this off for months.

· What do I share?

· How much?

· When?

· Do I even want to?

· What will people say? Think?

· Am I putting Mack at risk to be judged as soon as someone sees his photo, let alone meets him in person?

The same week we closed on our first ever home, we received a call…

“Hi Whitney, it’s the genetic counselor. We know what’s wrong with Mack.”

It was just like any other call. I listened, asked as many questions as came to mind at the moment – I’ve learned that if you have someone “important” on the phone, or in the room at an appointment, you ask every question THEN and THERE; that window of focused attention closes quickly…for you and the specialist.

I asked, “wait, spell it for me.” She said SATB2 associated syndrome aka glass syndrome.

“Ok, what does that mean?” She explained that this syndrome is new (meaning it’s just being detected through genetic blood test) within the last few years.

She then says “He’s one of 50… in the world.”

Ok, 1 of 50 got it.

The genetic counselor continued, “It’s like this, we have a planet for you to land on, but we don’t know much about the planet.”

At that moment I felt a little confused. I was unsure of why I was being told all these important, life changing things, that we’ve waited on for 2 years, over the phone.

I was sure they would call and say (like they have so many times before) we didn’t find anything.

She assured us that this was “de-novo” – genetic but not hereditary. This did not come from Adam or I, it is something new in Mack’s genetic makeup. It “just happened” no reasoning. She also said he should have a normal life expectancy and he should continue to learn, we don’t know how slow or fast but he should make progress.

Then the counselor continued to say “your chance of having another baby with satb2 is less than 1%. BUT if Mack (bare with me as she says the first statement that almost broke me) could ever get to a point where he could even have children, he would have a 50% chance of passing it on.”

“WAIT. WHAT?!”

All that!?! I understand how his chance goes up to 50% if he has children. BUT she just said “if he could ever get to a point where he could even have children.”

Right after that I said, I need an appointment so that my husband and I can sit down with the doctor and talk about ALL of this. We hung up. I tried to fill Adam in from my notes scribbled down on my bank envelope.

A few months before they ran the genetic exome sequencing, Adam and I were questioning ourselves. What are we looking for? We both agreed he’d been put under too much testing. But what’s too much? We wanted to just sit on things for a while and see how he progressed.

“Maybe he’s fine and we are just making more out of it then it is.”

But nothing explained all the missing adult teeth, the abnormal MRI brain scan, all the developmental delays (he was being evaluated at 12-18 months at 3 years old, and his speech was at 3-6 months.) But we were over the blood tests, full body X-rays, MRI’s, appointments. We wondered if we were doing more harm than good.

We gave it a few months. He was progressing, but slowly. There were times when we thought the progress almost stopped completely. Macks grandmothers encouraged us to make follow ups. We did.

I googled and googled and googled. I wanted to give the geneticist a path to go on.

I felt like I was one of the experts. I know Mack day to day, his symptoms, his personality.

I found something called Angelmans syndrome. They tested him. Negative. We did a few more, negative.

The geneticist decided with the teeth, no speech, the delays, etc., she wanted to do a whole exome sequencing.

Adam and I would need to be tested too. The lab looks at all of our DNA to view side by side. We promised ourselves if this came back negative we’d stop all the doctors for a year and just let Mack be Mack.

We both agreed they wouldn’t find anything– the chances were 30%.

After THE CALL, I updated our family by text. Yeah, text. Our whole life changed with that phone call. And I thought texting was appropriate? To tell the people that we love the most, and that love Mack the most, two sentences consisting of “We got a diagnosis for mack. He has satb2.”

Not sure of my thought process? Maybe in my state of shock that was deemed ok? Maybe I wanted to play it down more than it was? I don’t know. I have no idea why I felt okay to text “my people” the most important information I’ve ever received in my life. But text it was.

In that moment, I thought I turned into a “special needs parent” and Mack into a special needs kid. Would people start using different terms when they talked about Mack? It made me uneasy at first. We don’t know what his future really holds…

Little did I know, special needs fit him to a T. He’s been a special kid for a long time now. He’s different, he’s exceptional, he’s extraordinary, he’s our savior, he’s our rock, he puts our whole being into perspective, he teaches us, and he lights up our world. People will be better because of Mack. He will change people, and he will accomplish many things in his life.

I was already a special needs parent – something I was always supposed to be.

I’m not comfortable with the phrase “God only gives you what you can handle,” but I 100% agree that Mack chose us. We have the kids we are supposed to have. Everyday he’s changing me and shaping me. I don’t want to know what the world would be like without him. Mack makes Adam and I better people, and he’s making his siblings better people – stronger & kinder.

Mack is currently receiving 5 therapies a week – which explains the lack of photography blog posts lately…haha! His preschool (St. Andrews) has been the best thing that could happen to him right now. The teachers are caring and understanding, they are good with all my pamphlets and crazy mom talks, and are happy to have Mack as part of their class. He has an aid that helps him through the day, and Mack runs away from me (and to the trains) as soon as we arrive.

Our therapists in Dare county have been 100%. Advocating and helping Mack get what he needs is a fight I thought I’d need to fight harder for. Our Outer Banks community has your back, no matter what. They all want the best for Mack.

I was scared to become a special needs parent. I had to let go of the future I imagined all three of my kids would have. I had to let go of college, moving out, getting married, having kids. I had to restart. I had to grieve.

Maybe Mack will do all those things, maybe he won’t.

We will not limit him. We will push him, hard. He will be the best Mack he can be.

We were meant to be his mom and dad, and I don’t want a life without him.

I’m not scared anymore. I’m strong, I’m happy, and I’m whole. I’m a parent, and I’m a special needs parent. I got everything I never knew I needed.

Photos: Genevieve Stewart Photography

Video: M.M. Peer Films

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