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.