‘Will they hold her like I do?’ No, they won’t. I’m supposed to protect you.’: Mom advocates for her children with Down syndrome, dyslexia, and dysgraphia, ‘Our differences should be celebrated’

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“I am from Oklahoma (I am Cherokee Nation) and after finishing my Bachelors degree I wanted to pursue my Masters degree. I moved to St. Louis, Missouri and earned my Masters degree (in Sociology, majoring in statistics and minoring in mathematics). Around this time I met Brandon! We fell in love, married, and very soon had our first daughter, Zenora. We knew we wanted more kids, but had no idea we would have four. Mason was born two years after Zenora. Kora was born another four years later, and our big surprise, Zoe, was born another six years later.

maternity photo
Courtesy of Krystal

At our very first OBGYN appointment during our pregnancy with Zoe (20 weeks in utero), the doctor did an ultrasound. He said he noticed something ‘different’ about Zoe’s neck and he said he thought she might have Down syndrome. It was that easy! It required no invasive tests and the doctor was quite positive and upbeat. In fact, he was nonchalant and told us funny stories about an adult who has Down syndrome that he knows. Brandon was shocked. I was not. However, I did have a time of grief knowing that she would probably have some medical problems.

woman holding her baby with tubes
Courtesy of Krystal

This is what I wrote the day before her major open heart surgery:

I’m going through the fire. I wish my eyes had a faucet so I could turn it on and let my tears flow freely. I’m not quite sure why they don’t. Maybe I feel like I have to be strong for my 3 month old baby. Maybe I’m too tired to weep.
I pray for my baby, my child, and my family. I pray for her doctors and the surgical team. Do they know she likes to talk? Do they know she loves music? Will they hold her like I hold her? No.

I don’t want to let go. I don’t want to relinquish my child to an anesthesiologist. I don’t want her to walk the line so close to…
I know she will not only benefit from open heart surgery, but thrive thereafter. She’s strong. Literally strong! She packs a punch and kicks hard too.

mom holding her baby
Courtesy of Krystal

Oh my child. My baby. I would hold you forever if I could. I would squeeze you gently to my chest, nuzzle my face into yours, and hug your tiny body forever, if I could.
I’m supposed to protect you, but I’m ushering you into scars.

Seems like a juxtaposition like no other for this mama. But I know I will.
I will pack your favorite soft blankets, and your most comfortable clothes that easily allow access to multiple tubes and wires. I’ll pack soft wash clothes because hospital wash clothes are bleached and hard. I’ll pack a pillow for myself (because I won’t leave your side for long).
I’ll pack and then daddy will drive us to the hospital and we will give our baby, our child, to a team of pediatric specialists. And we will pray. And we will pray. Pray.
I’m going through the fire and I feel like a lump of clay.

I’m not the only one going through the fire. There won’t be just one child going to the hospital. We will all go. My baby has three siblings that will go too. A brother and two sisters that love her, that share a home with her, and share laughs and hugs with her. Three siblings that are careful and cautious around their baby sister. Three siblings that worry about her and pray for her. Three siblings that will be separated from their home and from their family, at least for a little while.

young boy holding his baby sister
Courtesy of Krystal

There is only one other that can soothe her and hold her just right, her daddy. Daddy will cry. Daddy will count the minutes until he can hold her to his chest and walk her around again.

dad holding his baby girl
Courtesy of Krystal

It will be tremendously difficult, but we have faith. My faith gives me strength and peace. I will rely on the Wonderful Counselor, Mighty God, Everlasting Father, Prince of Peace. There are also hundreds of people praying for my child. There is a beautifully orchestrated stream of volunteers from church and from the Ronald McDonald charities. Our family is ever loving, ever giving, and extremely generous.

I’m going through the fire, and I just want to share. I feel like a lump of clay. I pray to God, mold me and make me, after his will, while I am waiting, humble and still.

‘I humble myself under God’s mighty hand, and he will lift us up in due time. I cast all my worries on him because he cares for us.’ 1 Peter 5:6-7

We do so much to help Zoe. She is nonverbal but she understands everything we say. I think that is such an important distinction! Just because she doesn’t have verbal words or sentences, doesn’t mean she has nothing to say. Contrary! She has so much to say, and she understands so much. We use very specific and clear language so that she acquires that information, and also so that she might speak someday. For example, we don’t use ‘baby talk’ or use fast, mumbled, or cluttered language. We try to model good speaking, and clear language so that she learns and grows to do the same. We also use sign language in conjunction with speaking. Zoe learns sign language extremely quickly and she signs successfully to communicate her wants and needs.

Zoe also stims quite a lot. A stim is basically a regulatory behavior that someone might do to make themselves feel comfortable. An example could be twirling your hair, or tapping your foot. Zoe’s stims are sensory seeking. She loves sensory input. She stims by brushing her eyelashes with a finger, which we try to redirect to brushing paintbrushes or silicone brushes with her finger. She grinds her teeth, which we try to redirect with other sensory play.

Zoe is a very social person! We try to keep her in as many activities as possible, for example, school, church, playing with friends, or just going around other people at her siblings activities. She knows no stranger, and loves meeting new people! She has no reservations about walking up to a person (child or adult) and touching their shoulder and saying ‘HI!’ I never shoo her away from these experiences (unless of course it would be dangerous). I encourage her to walk around as much as she wants to and meet new people. We’re not at all ashamed of her, and we encourage her to be herself.

While Zoe is a sensory seeker, Mason is a sensory avoider. While it is visibly obvious that Zoe has a disability (Down syndrome), it is not obvious that Mason has a disability. That’s important, because just by looking at Mason, someone might have immediate expectations on how he should behave or what he might be able to do. Before third grade Mason was diagnosed with severe dyslexia and dysgraphia (he writes like he reads). He also has speech problems and he has dealt with sensory avoidance. The most important thing to note about Mason’s (he is now 14 years old) learning disabilities is that he has developed amazing coping skills. He has learned to live with, adapt alongside, and indeed succeed in most areas of life in spite of having such severe learning disabilities. I can imagine someone like him, during a different era, would’ve probably never learned to read or go to school, and quite possibly he would’ve been extremely discouraged.

boy stacking rocks at the beach
Courtesy of Krystal

The opposite is true for Mason today. He has amazing special education teachers. He is confident and happy. Mason is twice exceptional. While he has severe learning disabilities, he has incredibly amazing engineering skills! He can build or fix almost anything that requires spacial, relational reasoning. He is a master builder and creator. He will put together extremely complicated lego sets, or other things requiring assembly, in a blink of an eye. Where most people might spend days on a project, he will build it in an hour. Visually, Mason just sees the world differently. I don’t know exactly how to say that so it’s fully understood, but Mason does NOT see like I see. He sees everything, a room, a yard, a chair, a complicated pile of rocks, a river, a piece of paper, everything in 4D. I don’t know what or how he sees, so I can’t explain is exactly, but he literally has amazing abilities to build, construct, or re- construct anything.

My ultimate dream for Mason is that he reaches his full potential, that no one or nothing holds him back. Mason is in a fully inclusive school. I hope that Zoe will also be able to attend an inclusive school. I dream that Zoe will be afforded as many opportunities as neurotypical students so that she can learn and advance. Inclusivity is about more than inclusion, it strengthens everyone, and benefits everyone in ways I’m sure we don’t even fully understand.

teenage boy with glasses and a hat
Courtesy of Krystal

I want people to know that no matter what your abilities are, no matter how different you are, you can succeed, and you should be surrounded by people cheering you onward! I like to think of disabilities as ‘different abilities!’ We are all different, and that should be celebrated, not shunned. We are all such a big variety in the human race, not one of us should think we are better than another, or that our way of learning is better than someone else’s.”

family portrait outside
Courtesy of Krystal

This story was submitted to Love What Matters by Krystal from St. Louis, Missouri, USA. Follow her on Instagram, Facebook, and her shop. Submit your own story hereand be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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‘Stop Googling. Enjoy that little baby in front of you, exactly where they are at. Because this little person will astound you.’: Mom to child with Down syndrome shares 12 touching reminders

‘You don’t fit in. Old friends move on without you. They go to theme parks. You go to hospital rooms.’: Special needs mom pens ode to ‘the parents who feel like they don’t belong’

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