There are a lot of mixed opinions out there in the Down Syndrome blogging world. A lot of authors of blogs I follow have even gotten flak for portraying too positive pictures of life with Down Syndrome. That they are not being realistic and parents who are facing a prenatal diagnosis should know how it really is. So here’s the thing…
It’s hard. It’s more challenging. It hurts. It’s scary (at first). There’s more work involved.
I’m no fool. I know that the vast majority of expecting parents do not wish for a child with an extra chromosome; that they pray or hope with all their being that their child is not born with Down Syndrome.
Although there are some spectacular people out there who get it even before becoming a parent. My friend Danielle shared with me an insightful post from a mom who was told her unborn child had multiple markers for DS during an ultrasound. She, unlike most in her shoes, celebrated immediately; knew it was meant to be because she was special. And then her child was born without DS and she was a little bit let down. Wasn’t what she was expecting. What a beautiful story. The complete opposite of most of our stories. The devastation most feel when they receive a diagnosis. But here’s a mom who doesn’t have a child with Down Syndrome, and I thought, “Wow, she really gets it!” You can read her post about it here…. http://momastery.com/blog/2012/07/07/birth-story/
There are parents out there too who are dying to adopt a child with Down Syndrome. Who know there’s something special there that they’d love to add to their families.
But still, this is the minority.
Most people don’t want it to happen to them.
I once had a woman tell me all about her having been tested because of her older age when she was pregnant with her children. That I shouldn’t feel guilty for not having the testing because I was so young at the time of my pregnancy. I responded by saying we are so happy Annie is here and we love her the same as we would had she not had Down Syndrome. And this woman turned to me and said, “Of course you do Dear, she’s here now. You didn’t know, what can you do?” This stung. This woman made the assumption that had Mike and I known, we would have made a different choice. The choice she would have made had her prenatal testing been different. How awful.
Before Annie, before Mike even, I remember getting emails from my pregnant friends excitedly sharing the news that prenatal testing showed no birth defects, nothing wrong, that everything was perfect so far. And I was happy for them of course.
I know it’s not something you wish for. I know I didn’t. Just like the mother whose blog I shared, I too sat in a silent room at my twenty week ultrasound, waiting for the doctors to tell me what was “wrong” with my baby. There was a marker, a big one. One that indicated a 25% chance for Down Syndrome and serious heart defects. Unlike her, I cried. I prayed, “Why me? Why this baby, our baby?” I confess the heart defect was much scarier than the Down Syndrome, but still, I didn’t want either.
And that’s the sad truth. Most parents don’t want to hear this news. That the news is something that comes along with the option to terminate or give the child up for adoption. That doctors and society claims that the quality of life of an individual with Down Syndrome is less. This topic I will be discussing later this month.
But for now I need to get back to my point. Which I am having a hard time staying focused on today.
Most people don’t wish for a child with Down Syndrome because if nothing else, it comes with more challenges than a typical child. I won’t lie, I won’t sugar coat it… it does.
It is hard. It’s hard to watch babies younger than yours walk and talk and climb, when yours is nowhere close. It’s hard to answer the questions that always come, “Why isn’t she walking? What’s wrong with her?” “Why can’t she drink from a bottle?” It’s hard to worry about hearts and other health issues that are more common or associated with Down Syndrome. It’s hard not knowing when milestones will be reached. It’s hard.
It comes with more challenges. Parents of children with Down Syndrome never stop advocating for their children. We have to fight for the best therapies, best interventions for school, best opportunities to help our kids work to their full potential. We have to convince others, unfortunately, that their potential is tremendous. We have to work with our children everyday on fine motor skills, gross motor skills, speech. So, it’s more challenging.
It does hurt. It hurts to think of your child being treated differently or made fun of because of her diagnosis. It hurts that most people are glad or grateful it’s not them. It hurts that babies can be and are sometimes chosen to be terminated because they are like Annie. The worry for their future can hurt. It hurts when people say insensitive things. It hurts.
It is scary. It’s scary when doctor after doctor knocks on your door at the hospital just hours after your baby is born to tell you all the tests that need to be done. It’s scary to think about your child’s chest being cut open for surgery on his or her tiniest heart. It’s scary to think your child may never walk. It’s scary to be uncertain if your child will be able to hear. It’s scary to worry about all the health issues your child “might” face because they have Down Syndrome. It’s scary.
It is more work. It’s more work to schedule therapies and appointments and testing that a typical child wouldn’t need. It’s more work to find alternatives for feeding or head support or communicating. It’s more work to find extra hours in the day to work on development and continue what therapists are teaching and wanting us to practice. It’s more work.
BUT IT’S SO WORTH IT. IT MAKES IT THAT MUCH BETTER.
If you’ve every felt the great satisfaction and tremendous pride after being faced with something extremely challenging and working your butt off to ensure success or at least felt the self-gratification from your enormous efforts, you know what I am talking about. Some people choose the easy road. Would rather have everything handed to them. Luckily I learned far before Annie came into my life, that that’s not the life I’d want. That hard and challenging and scary, sometimes even hurtful things in our life not only bring the best opportunities for growth in life, but are the greatest gifts. I wouldn’t take away any of the challenges, heartache, or hard times in my life. And there have been many. I wouldn’t change them because they have shaped me. Have taught me about life and love and how to treat people, but more importantly about the importance of a positive attitude.
An incredibly wise former student of ours here shared a quote today that applies to what I am trying to say here perfectly. He wrote, “The happiest people don’t have the best of everything. They just make the best of everything.”
So as for painting too positive a picture, I don’t think the authors of such blogs are lying or hiding anything. It’s just a different attitude. Not everyone has this attitude and that’s okay. There are parents out there that would take the DS away if they could. And that’s okay too. Some have a harder time with acceptance and hurt and challenges. Totally normal.
And maybe some people don’t agree with presenting such a positive picture of life with Down Syndrome when there are obviously more challenges. But I don’t think we’re leaving anything out. For us anyway it has been far more wonderful and beautiful than I can ever imagine life without it.
And it’s always better with a positive attitude. When I am sad that Annie can’t walk, I find a way to be grateful for the extra time with her in my arms. When we finally get that therapy we worked so hard for her to get, I sit back completely gratified and watch the progress that follows. When I think about people being mean and hurtful, well I think of it as a filter, Annie and I don’t want those people in our lives anyway. I have learned that people being insensitive is human and forgivable. Though there are health issues to look out for and worry about, we thank God everyday for the health she has now. We focus on the blessings not the challenges and being able to do that alone has been a blessing in itself.
I am stealing a quote from one of my favorite blogs. You can find her blog here. http://kelsicorner.wordpress.com/ And just like her Kelsi is to her, Annie is the child I never knew I always wanted!