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For Our Community

Dealing with Down Syndrome

10-21-2016

It is national Down syndrome month and I am lucky enough to be the mom of a beautiful little girl, Dylan who just happens to have Down syndrome. However, lucky isn’t the word I used at the beginning. The hardest four words I have ever heard in my life were, “she has Down syndrome.” Just like that, I felt an array of emotions. I felt like my life was over and would never be the same again. There was some truth to that, my life would never be as it was the day before I found out Dylan had Down syndrome. It would be better!

As nurses, we are forced to confront some extremely difficult and very sensitive subjects with patients and it is so important to have self-awareness. I am one who has experienced both sides and has found that some things were so helpful and others just weren’t. I would like to share some things that I hope will help the next time you are confronted with helping a family through the first time they hear the words, “your baby has Down syndrome,” their first few days in the hospital, their first admission for sickness, and their routine/sick visits in the clinics.

  • First off, please never say, “I’m sorry.” There is no need to apologize for a beautiful baby being born. Instead, say what you would say any other time “congratulations!” Parents need to hear this. Our very first nurse with Dylan came over to me and said “Congratulations! She is beautiful and she will do amazing things, just take her home and raise her like you would do with any other child.” At the time, I remember feeling like those were just the words I needed to hear as I was on the brink of tears and feeling completely overwhelmed. I felt empowered and this is what I want our parents at Bozeman Health to feel. It is our job as nurses to help make this happen.
  • Next, please know that parents sometimes need a shoulder to cry on and if you cry along with them it is ok. We care and caring hurts sometimes. Also, there will be times when no words need to be said. So, the next time you walk into that room at 2 a.m. and a new mom is crying, just give her a hand or a hug. It is ok to show emotion. Just listen to them and be there for them.
  • Please don’t say, “A downs baby or they have downs.” The baby/child has a name and is a person first and foremost. They just happen to have Down syndrome. It doesn’t define them and as a parent, this is offensive, like it is a bad thing to have. They only have an extra chromosome after all.
  • Please don’t say, “They are always so happy.” They are kids and kids as we know, are not always so happy. My daughter has thrown her fair share of fits and I guarantee you she is not always happy.
  • Please be aware of your surroundings because you never know who might hear what you are saying. The “R” word took on a whole new meaning once I had Dylan. I know it can get thrown around in casual conversation but it really shouldn’t and has no place being said in the hospital setting or anywhere really for that matter. It is a derogatory word and once you become, “a special needs parent” this word is heartbreaking. No one would want his or her child referred to as this and although it’s not meant that way, once it is said it can never be taken back. I know for me it took almost a year to work up the courage to tell people not to use that word in front me. Patients can hear things, so please be aware of words you say. Like we teach our children, once things are said they can’t be taken back and the hurt is already done.

We are nurses because we care, we are compassionate, we are trustworthy, and we are advocates for our patients along with so many other things. I never knew I would be a nurse who was the mother of a child with Down syndrome, but that has become a title I am proud of. I have been fortunate enough to be able to help so many new families starting their journey of being parents of a child with Down syndrome. Like I said, empowerment is one of the best things as a nurse you can provide for families. Knowledge is power; we have the knowledge and with that knowledge, we can empower these families that so desperately need it. I was empowered to help start a Down syndrome support group here in the Gallatin Valley which then turned into a non-profit that provides funds to help families with medical bills, adaptive equipment, learning aids, education and so much more. You never know what the words you say to your patient may inspire them to do. I’m sure our nurse never realized what an impact her words had on me. We can do the same for our patients.

We know we can always do better. You can never stop trying to find better ways to do the things we have always done, just because they have always been done that way doesn’t mean it’s the best way. The words and interactions we have with Down syndrome patients and families took on a whole new meaning when I had Dylan and I realized I could do better.

Dylan is the one thing I never knew I needed and now she’s the one thing I can’t live without. This is the feeling I want all families to have. The birth of their baby is a joyous occasion. Although it can come with so much fear, it is our job to help keep the focus on the fact a beautiful life just entered this world and they will do amazing things. They are more alike than different and capable of so many things. It is our job not to limit these babies, children, and adults but to empower them and their families.

Categories: Simply Healthy