I found Jenna through Instagram and I love the things she shares and talks about, one of those being raising a child with a disability. I especially love the analogy she shared in her story below about what it’s like. She is a radiant Mother and a beautiful soul.
Jenna Gines is the oldest of 5. She grew up in Tooele, UT. She went to Utah State University after she graduated high school in 2005. She served a mission for The Church of Jesus Christ of Latter-Day Saints in Birmingham, Alabama from 2008 to 2010. There she met her husband. They both served in the same area for around 6 months. There were three sets of missionaries and they all became good friends. He got home in January and she got home in February. He went to her homecoming talk she gave in church and the rest is history… They got married in August 2010 in the Salt Lake City Temple. They now reside in Utah and have 3 beautiful children who she gets to stay home with.
When I went to college in 2005 I started working at a residential program for people with disabilities. I worked at two different homes and eventually became a manager for one. I worked at a preschool for kids with autism and a summer camp that had all ages and all types of disabilities. Working with these people became my passion. They brought me so much joy! I thought about doing Special Education so I began taking classes. I loved all that I learned, especially disability etiquette and all the different types of disabilities. It was so interesting to me for some reason. I became very passionate about the fact that it’s the largest minority group and any one of us could join it at any time. I became very passionate about the treatment of people with disabilities. I wanted to be an advocate for them.
And then I started my other dream job in 2014 when my first son was born, a stay-at-home Mom! It was quite a transition for me but I loved it. I’ve always looked forward to being a Mom but I missed my other passion.
And then my second son was born.
He was a surprise for us in every way. From getting pregnant, when our first was only 10 months old, to my water breaking and him being born 3 weeks early. He was healthy, beautiful and THE best baby ever. Literally. He ate when he was hungry, fell asleep whenever he was tired, so chill and so perfect. From the very beginning, I knew there was something about him. I remember telling my husband, there’s something about this boy. I didn’t know what but I could feel it.
When he was around 8 months old, family asked us if we noticed his eyes. They were kind of clicky when you rocked him back and forth. I hadn’t noticed it and I said, I’ll mention it to the pediatrician. So I text our doctor and sent him a movie clip of his eyes. He said it looks like he has nystagmus, do you notice anything else about him? And I thought, well now that you say that, he’s not sitting up, he’s not rolling very much. Even brother who crawled at 14 months and walked at 20, was sitting at 8 months. He said, let’s have you go see a neurologist to make sure it’s just his eyes and nothing else is going on.
The neurologist had us do an MRI, EEG, go to the eye doctor and blood work. The MRI was normal. Such a relief! The EEG was normal. No seizure activity. Such a relief. He did, in fact, have a little nystagmus and strabismus, which is crossed eyes, and he needed glasses. Cutest thing ever!
After they received the blood work, she had us come back in and said, we think Jackson has Congenital Disorder of Glycosylation, type 2. Wait, what? How do you say that? Will he walk? Will he talk? And I got emotional. When we started this process I knew we would receive a diagnosis. I just knew. But it was like I forgot that day. It kind of caught me off guard.
I mourned the little boy I thought I had. I mourned the life I thought we were going to have. I was so excited to have two boys, 17 months apart. I was so excited to watch them grow up and go through life together, play sports or whatever they wanted to do together. Of course, they still would, it would just be different.
I let myself feel everything. Process it. Let it sink in and then I accepted it. It wasn’t the life I was picturing but it was a new life. And that’s exactly what it is when you receive a diagnosis for your sweet baby or child! It’s a new life.
This poem below explains it perfectly.
WELCOME TO HOLLAND
by Emily Perl Kingsley“I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, ‘Welcome to Holland.’
‘Holland?!?’ you say. ‘What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.’
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say, ‘Yes, that’s where I was supposed to go. That’s what I had planned.’
And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.
But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.”
I didn’t think I would personally go to Holland. I just wanted to work there, enjoy everything about it and the beauty by visiting. Little did I know that I would have a change in my own flight and land there. Little did I know that my two passions would be combined.
When you see someone who walks, talks or acts differently, say hi and make a new friend! Don’t be afraid to ask questions and don’t hush your child who is asking questions. It’s okay to be curious. It’s okay to want to learn. Staring and not saying anything at all can be more hurtful. Talk about the things that are different and then talk about the things that are the same. I promise you’ll find more in common than different.
So here we are enjoying every beautiful flower and hoping that we can help others see the beauty that we see every single day.
Having a disability or a child with a disability isn’t sad, it’s different. That’s what I want people to know and see. It’s a beautiful, new life!
Silently Surviving Souls 