It’s not about luck, it’s about hard work.

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A few days ago, I read a post written by a person who ‘did not feel lucky’ to have a sibling who had special needs. Being a special needs mama, that headline was like a punch in the gut. Blog titles are carefully crafted to bring in as much traffic as possible, but this one had the capability to both hurt and draw people in at the same time.

Many people were offended by the post and felt it had the potential to create false beliefs among those who didn’t have experience with special needs. At first, I felt the same way, but then I started to think that every story deserves to be told. While some parts rubbed me the wrong way, it was just one person’s honest perspective. One person among thousands. And for every negative story, there are dozens of positive ones.

No two families are the same, and that rings true for special needs families, as well. There are going to be families who are unable to juggle the special needs aspect and hold their families together. There are going to be siblings who resent each other. But that’s true for ANY family. There are many families, both “typical” and special needs, who do it beautifully.

Unfortunately, the internet doesn’t like positive stories. But that won’t stop me from sharing ours.

No, I can’t predict what the future holds for my family. Nobody can. But I CAN and WILL do everything in my power to make the NOW a positive experience for every person in my family. Liam’s extra chromosome only plays a tiny part in our lifestyle. We are so much more than just a “special needs family.”

We worked so hard to build a strong family unit, and when Liam was born, we worked even harder to have Liam’s special needs fit seamlessly into our lifestyle. When people see my family, I want them to see a happy family first before they even notice Down syndrome, because THAT is who we are. We are not to be pitied or applauded. We are a family, just like any other.

Is it easy? Absolutely not. There are tough moments with ALL of our children. Life wasn’t always easy before we had Liam. Raising children is HARD. Marriage is hard. Life is hard. It’s not supposed to be a breeze. It’s up to us, as responsible human beings, to work our way through the hard parts.

I can’t even begin to compare our story to the author’s story. Our struggles are not the same. The disability is not the same. Our lifestyle seems very typical compared to what she went through. But I don’t want people to get a false impression by reading that story, and believe that it’s the same experience for every family who has a child with special needs.

For me, it was easy to see where things went wrong with the author’s family, but it certainly wasn’t anybody’s fault. It can – and does – happen to any family. What I got from the story was a reminder to keep working hard.

As parents, my husband and I have a responsibility to all four of our children. No child is more important than another, and it’s up to us to make sure each child feels loved, safe, important, and appreciated. It takes a lot of time, commitment, and juggling, but we owe it to Dylan, Lexie, Lily, AND Liam.

It’s also our responsibility to teach them how to survive in the real world. You deserve love. You deserve happiness. But you don’t deserve perfection. Perfection doesn’t truly doesn’t exist. Perfection is the happiness you create from what you are given and the ability to adapt to and make the most of any situation. That is one of the most important skills we can teach our children.

We don’t force our children to love each other. We just set positive examples, make sure they know they are loved every single day, remind them to spread love and kindness always, and we allow their love for each other to grow naturally. I can’t predict what the future will hold for my family or for their relationships with each other, but neither can any other family.  We are family first. That extra chromosome is only a tiny fraction of all the pieces that make up our family structure.  Together, we are whole. I can only hope that my husband and I have made an impression on all of our children and that they carry these important values with them into adulthood. Accept, love, and be kind always.

All I know is that our dedication is paying off. Over the years, their love for each other has taken my breath away time and again. It isn’t forced. It just is.

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Stefanie is a wife and SAHM to 4 children, living in Mars. Stefanie and her husband refer to their children as Phase One (Dylan-Age 13 and Alexandria-Age 10) and Phase Two (Liliana-Age 6 and Liam-Age 4). Phase Three is out of the question! Stefanie’s family became a family blessed with Down syndrome when her youngest child had a surprise diagnosis after his birth. Although the family’s initial reaction was shock and fear, they quickly learned to embrace this beautiful journey and they now realize what the term “The Lucky Few” really means. Stefanie spends her days wrangling chaos. In addition to four kids, her family has 4 large pet rabbits...the more the merrier! In her spare time she loves to embarrass her children by singing show tunes from her musical theater days, come up with messy projects to keep her children busy, chase her children around with her camera, read, volunteer for the Down Syndrome Diagnosis Network, blog at http://www.lexieloolilyliamdylantoo.com and post daily on Instagram (www.instagram.com/lexieloolilyliamdylantoo). Sleep is just a distant memory!

1 COMMENT

  1. I agree 100%! You live each day one at a time,
    whether you have a special needs child or not! Your children only know what you teach them, at first, then they live on what they were taught and what they see and what they learn at school, but it’s their early years that stick with them forever!

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