23 March 2014

Down's Babies....

Life has been pretty busy lately, with appointments, friends, World Down syndrome Day, trying to get Adele's Over the Rainbow Baskets all organized and trying to keep a house organized and clean!

I put a phone call into one of the hospitals, the NICU in Calgary, so that I could get their fax number and explain the purpose of the baskets. The conversation went a little something like this...

K....Hello, I just wanted to explain a proj...
Rude lady....Who are you?
K....I just wanted.....
Rude lady.....Who is your doctor?
K....I am trying to expl....
Rude Lady...What is your name?
K...This is what I am trying to explain to you.
Rude lady....Who is your doctor?
K...I have started a project, to help bring some comfort and joy to families who have a child born with Down syndrome.
Rude lady...We don't have any Down's babies here.
K....Our little girl...
Rude lady...We don't have any Down's babies here.
My voice is now just a little bit louder and I am getting mad.
K...Our little girl spent 42 days in the NICU, so I know that there is a good chance that little ones born with Down syndrome will go into the NICU.
Rude lady...We don't have any Down's babies here. I will grab the unit clerk.

As she was putting me on hold, she made sure to say into the phone "OH MY GOD!!"

New person answers the phone.....
K....Is this a nurse?
I explained what had just happened on the phone and she apologized profusely for the clerk's behaviour. She loved the idea of the baskets and was eager to pass it onto her manager.

I got off the phone and I cried to James. I was so upset by the words and behaviour from the unit clerk. I think I was in shock too. This is the first person who parents talk to when they call the NICU. They have a baby in the NICU. Who are you, that you think it is ok to speak to somebody the way you did? I was appalled. This is why I was so upset. I am very sensitive when it comes to my children, and when you shout that you don't have any Down's babies in your NICU, I took it as a total lack of respect for my child. First of all, you should know how to properly answer the phone. Second, you should know the correct medical terminology. Do not call any child a Down's baby. They are children first, our children.

World Down syndrome Day! I went into the local elementary school last week, almost every day and gave presentations for nine groups of students on Down syndrome. I think that it went really well. I love the honesty, the naivety and the love that children have for babies.
One story from one of the boys touched my heart. While I was presenting to the grade five students, I asked if anybody knew the word that sometimes people with disabilities are called. One little boy put his hand up and he told the class that the word is 'RETARD.' He then went on to tell us that this word was used long ago and that it was an acceptable word to use, but not any more, it is a hurtful word. He then proceeded to tell us that his brother is autistic. His eyes filled with tears. My eyes filled with tears. The teachers in the room, their eyes filled with tears. He explained that his brother has been called retarded. More tears. I asked him if it hurt his feelings when his brother was called a name. He nodded his head. More tears. I could see the pain in his eyes and the hurt in his words. It was a moment, a moment where the whole class was silent. The whole class listened and I could see that the students realized that words can hurt. We don't always understand that when we use certain words, we are hurting siblings, friends, aunts, uncles, grandparents, moms and dads. You are not just hurting the one person who you are using the word against, it's a whole community.
It was a moment that taught us all that we need to be more aware of our words and actions.

World Down syndrome's Funky Sock Day!

Something else that was beautiful was when I spoke to the Pre-K classes. When they looked at Adele, all they saw was a baby, a cute baby. They don't see Down syndrome. They were excited to touch her fingers. They were excited to show love. They told me repeatedly that she was so cute. I realized that we need to start educating our children at a young age about differences, about how to be a good friend to others. If parents are not speaking to their children about how to be a respectful and kind individual, we are failing as parents.

It was a great week. It felt good to make a difference. It felt good to show my community that I care about our children. I believe that we are all given our children for a reason, there is a purpose. We were given Brinley and Adele and it is up to us as parents to encourage them to make a positive difference in the world. It is up to us to help our girls discover their gifts, talents and strengths. It is up to us as parents to show our girls that they can reach their full potential, no limits. I will continue to advocate for both of our girls and to reach out to others and hopefully make this world just a little bit better. Educate. Advocate. Awareness.

We are trying to lose the soothers....working out smashingly well ;)
So silly!
Sweet princess <3


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