Thursday, May 21, 2009

Her Best Advocate

6 What are your thoughts?
I have been in many situations with Nichole where I quickly realize that the people that we are talking to or watching her, are unable to see my daughter. It is not that they are blind, they simply cannot see past the physical characteristics of Down syndrome. Put plainly, they cannot get past their misconceptions and fears about Down syndrome.

Their eyes and facial expressions become a mirror to what they are thinking,
"I feel so sorry for that baby"
"I am so thankful that is not my child"
"It must be so hard having a kid like that"

There have been times where I have seen smiles turn into discomfort. Or times where a conversation is cut short. It is during these times, that I wish I could say... "How dare you! How dare you look at my daughter that way! Do you have any idea what it is like to have a child with Down syndrome? I don't think so! You don't have one! So stop staring! Can't you just see her as a baby! She is a baby you know? Down syndrome is something that she as, NOT something that she is!" And on and on, I want to become hysterical and get my point across. I am fully aware that such tactics might not get me very far. Instead, I smile, I kiss or hug Nichole and tell her she is beautiful and that I love her. Then I ask Nichole to wave hello or blow a kiss. Most of the time, this comes accompanied by her shy face and a smile. Precious!

But most important, I have learned that nothing I can say is as powerful as what Nichole can do. She has the ability to touch hearts. I have watched how people warm up to her, how their smiles become genuine. I have seen the looks become looks of acceptance, of joy. I have seen faces that have turned around and and say, "Maybe having a baby with Down syndrome is not so bad after all." I have watched people reaching out their arms towards Nichole wanting to be close to her, the same people that had once walked away.

She is showing people the beauty of her life. Her sweet disposition and endearing personality. The peace, joy, and love that she communicates is too hard to resist. The value of her life is quickly recognized. Down syndrome has nothing to do with what really matters in life. She is a little girl with many abilities, gifts and talents.

I have learned that Nichole is her best advocate. She will always be.

Sunday, May 10, 2009

Mother's Day

7 What are your thoughts?
"Welcome to the club." My mother said to me the night I became a "woman."
Even though there was nothing exciting about this "happening," I remember thinking that it meant that maybe someday I would become a mother. Even then, at only twelve years old, I was amazed by the thought that someday, there could be life inside of me. I knew then I wanted to be a mother.

Almost four years ago, Ellie changed my existence by turning me into a mother. I was so excited. She was perfect in every way. Beautiful, funny, creative, smart. She was the little girl I always wanted. To this day, we have so much fun together, she is my dream come true.

I loved being a mother so much, that Andy and I decided to have another baby. Then Nichole was born.

Tonight, I couldn't stop thinking about the first day Nichole came home. It was the first day that I allowed myself to cry over her diagnosis. Thankfully my mom was staying for a few days. I don't know what I would have done without her.

I laid on the couch, saying I was tired. Somehow, my mom knew better and she sat by my side. She gently put her hand on my head and asked, "Are you okay?" I could not hold it any longer, I started to cry, to sob. My mom cried with me too. I crawled into her lap, wanting her to hold me, wanting to be a child again. I did not want to be a mother. I cried and I cried while my mom held me and tenderly kissed my forehead and stroked my back. I wished that she could take it away from me. But she couldn't. She could only love me.

All sorts of questions flooded my mind. "Why did we want more children?" "Ellie is perfect, we did not need more kids," "Our family was complete when we were three." I was helping Ellie wash her hands that night and I started to cry thinking that Nichole would never be able to do that on her own, even the smallest things felt like they were taken away from me.

My heart has changed so much from those days. Dealing with a diagnosis is so hard,, but once we see our children for who they are, not what they have, we embark in a beautiful road. I love Nichole the way she is. I would not have her any other way. She is perfect, absolutely perfect, just like her sister.

I write this tonight, because as we were getting the girls ready for bed, Nichole washed her hands...all by herself. Sure, she needed help to make sure the soap was all gone, but she can do it. I think back to that night with Ellie and realize how lost I was in my despair. So lost, that it blinded me to the truth. The truth is that Nichole is more typical than not. She can do almost the same things that Ellie did at her age.

Our family is more complete because we have Nichole. I am so glad that I get to be her mother. The child I said I didn't want, but the child I desperately needed. And today, I can say with all my heart, with full confidence, she is the child I always wanted...I just didn't know it.

Being a mother...I have two beautiful girls. I love them like I never knew was possible to love. They have changed my life, and I am so thankful.

And to my mother. I love you. You are the strongest woman I know. I want to be like you when I grow up.

To my mami. Te quiero con todo mi corazon. Feliz dia de las madres. No sabes como te extrano.

To my Pata. Fuiste y siempre lo seras, mi "mama pata." te quiero mucho.

To my mother in-law. Ronda, I love you, and I am so thankful for you. You are a real example of what hard work covered with love looks like. I am lucky to have such a wonderful mother in law.

And here are some pictures of my beautiful girls.

Thursday, May 7, 2009

Love the Affirmation!

3 What are your thoughts?
I do not mind the fact that Nichole's development is slower compared to her typical peers. I have enjoyed her so much, I don't think I could say that enough. I think for this reason I rejoice in her accomplishments and all that she is able to do.

Therapy is a part of our lives with Nichole, and unfortunately we take from therapy as much as Nichole is willing to give or show during those times. I share with our therapists all that Nichole is able to do, yet, it might just happen that Nichole has no desire to show them too!

Today was different, as Nichole decided to show off wither her St (Speech Therapist) and OT (Occupational Therapist) they come from AEA (early Intervention) to our home so it is a more comfortable environment for Nichole. She decided to show off today and sign away. Now, when I tell them Nichole can sign...they know she can!

Both therapists are incredible and they are very supportive and encouraging. Last time the OT said she was very impressed with Nichole's gross motor skills and in general. One of them (our ST) happens to be one of my close friends (how awesome is that!) and she really has the gift of encouragement. After our session she called me to say (again) how well Nichole is doing. Not only did she brag about Nichole, but she encouraged me too.

It feels so good to have someone that knows you affirm you and say, "You are doing a good job mom!" Many times I wonder if I do enough for Nichole, could I do more? Not too long ago I was overwhelmed with how many appointments we were having and I cut some therapy, feeling guilty about it. Well, not today, I am doing a good job, the best job I can. What I do at home is more important that what happens during therapy sessions. Sure, those are very valuable, but if I did not work with her at home it would be almost pointless.

Thank you Amy for being such an encouragement! It means a lot!



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