Wednesday, May 28, 2008

Cure for Selfishness

3 What are your thoughts?
Yesterday our family went to a get together for families in our area that have been blessed with a child that happens to have an extra chromosome. It was great meeting other families, and seeing their babies, children, and even a young adult.
We have been on this road for almost 8 months. It is not a very long time, yet, so much has happened in that time. So much has changed in my heart.
I came home and I read my journal. It is sad to read how I felt those first few weeks, but it is part of the journey. I know, that someday, those hard times will be used for the glory of God, because what came out, was love that I had never experienced before.
I used to think I knew unconditional love simply by being a mother, I would have done anything for Ellie. When Nichole was born, I realized, I had much to learn about the true meaning of giving unconditional love. In my journal I wrote, "Nichole has made me see the ugliest parts of my heart, parts that I never thought would even exist. Parts that surprised me and have brought me to tears. These parts are the most repulsive forms of, well...selfishness."
During all my grieving, and tears, I never really thought about Nichole. I thought about me. How I felt, what the diagnosis would mean (to me), what my life would be like.
God is good, and he never let go of me. Never gave up.
I hate selfishness, I wanted to be rid of it! I got down on my knees and held my two week old baby and said to the Lord, "I chose to love her, with everything I got, with all that I am, I chose, from this day on, to love her!"
Letting go. I had to let go. Of my expectations, of my agenda, of my ideals, of my selfishness.
I would not have Nichole any other way. She is an amazing gift. That God would chose me, out of all people, to be her humbling.
I wish I could say I am no longer selfish, that I got it! I am only human. There are many areas in my life where I am still selfish, areas where I need to let go, and people that I need to love. But for now, I smile because of God's work in my life, and I lift up my arms and praise God for the baby He has chosen to teach these lessons of love to me.
Cure for selfishness.
Letting go.
Choosing to love.
A baby with Down syndrome.

My sister took these pictures of Nichole when she turned 7 months old. Pretty cute, isn't she!

P.S. For those praying for Abby. She is taking baby steps as she is recovering in the hospital. Next week I believe will be a months since she has been in the hospital, fighting for her life. But the Lord is good, and she continues to improve little by little. Please continue to keep her in your prayers.

Tuesday, May 20, 2008

Extra Chromosome: Deep Connections/ Pray for Abby

2 What are your thoughts?
Imagine with me that you are walking in the mall, when all of a sudden you see a teenage girl shopping with her mom. You run to them with a huge smile and say, "Hi! I had to come meet you." Then you turn to the mom and proudly show off your child and say, "I have a child too!" You are probably smiling, thinking, that would never happen.
Now imagine with me this same scenario, except the teenage girl has Down syndrome. In my world, I would run to her and proudly show off Nichole. The other mom will most likely smile, introduce her child to me, and ask to hold my baby. we will exchange stories about those first months. We might exchange e-mail addresses and phone numbers. We might even get together after a few days and talk over a cup of coffee. All of a sudden, we have found in each other a friend.
Nichole has introduced us to this wonderful world, where instant and deep connections are formed. A world where strangers, easily become friends. A world where regardless of where you come from, you know, you simply know, that the truths of love and life shine through those almond shaped eyes, and we have been affected and changed by our children.
What we share, cannot be simply described. It can, however, be easily felt.
This is how I met my friend Stephanie. We are both members of a Down syndrome forum. We had been e-mailing each other and found out we had a friend in common, Marisa. Stephanie is originally from Iowa. Thirty minutes away from me. Last march, Marisa, Stephanie, and I got together. It was wonderful to meet her and Abby, her daughter. Abby is only five months older than Nichole.
Stephanie and I talked and cried together. we shared stories, and we shared our hearts. We had just met face to face that day, but we were instantly friends.
Today Abby is in the hospital. she has been there for two weeks. It started as pneumonia, then RSV, and now Abby is in critical condition. Taking steps forward, but sometimes hanging in there by a thread. I will go see them for a few days.
Please pray for Stephanie and Abby. pray that the Lord will show His love to their family. That He will give them peace. That He will give me the words to say, and the love to give.
Andy and the girls are staying. Please pray that they don't miss me much. Grandma Darla and Grandpa Ken will watch them today. The Glandon family will watch them the next couple of days while Andy works.
Please ask God for a miracle. Pray that His power will be evident in little Abby's body.
Thank you.

Pictures from last March of Nichole and Abby.

Monday, May 12, 2008

Nichole's health update

1 What are your thoughts?
Give thanks to the Lord, our God and King,
His love endures forever
He is above all things
His love endures forever

Nichole had an EKG a few days ago. An EKG is basically a type of "heart scan." They put all this "stickers" on her chest, arms, and feet, and they clip on this wires that are connected to the EKG machine. The patient is to lay very still as the machine works and the scan is taken. Going in I knew it would be a challenge, since I do not know many seven month old babies that lay still for 15 minutes. However, Nichole showed great interest in her mommy's soft voice telling her stories as I stroked her face. It was quite an intimate front of two nurses...maybe not that intimate.
Nichole's doctor came in and checked her. He listened to her heart and announced that the EKG looked great and he no longer can hear the heart murmur. He says it is very possible that the hole in her heart has closed on its own! I asked if she would ever need surgery, and the doctor said, "No!"
The next day Andy took her to have her blood drawn for a thyroid check, and again we had great news. Her thyroid is perfect!

Just thought I would share the great news!

Touching Hearts

1 What are your thoughts?
It has been a long time since I updated, so I will try to remember what has happened in the last month that is worth sharing.
A month ago I was invited to speak at a local MOPS group about Nichole. I was so excited to go and share how beautiful life is with a child that has a disability. I wanted to talk about the "real" feelings I experienced, as well as the beautiful road we travel, and how the Lord led us to that discovery. I wanted to share my heart towards Nichole and the beautiful world she has opened up for us.
One thing I know, is that the Lord has a plan, and His plan for our lives include Nichole. I also know, that Nichole was sent to us to touch our lives, and the lives of her family and those around her.
I was excited, but I was also nervous. I was for the first time going to share with a group of women the really ugly parts of my heart during those first couple of weeks. But I was also going to share the powerful love of God that has overtaken me as I chose to love this small, precious baby. And I was going to share how this road is the sweetest, most wonderful road I have traveled.
My friend Melinda came with me. My friend Kim had invited me to speak. It was wonderful to have those familiar faces. I cried a lot, after all, Nichole was only six months old, and this journey is still fresh. I was honest and open, and I prayed and prayed that the Lord would use the words that came out of my mouth, and that Nichole and our family would not simply be a "story."
When I was done, the Lord continued to move. Through tears a mom shared that her son also had a disability. She confessed that she had been carrying guilt around for the feelings she had had towards her son, but now, she could say she had felt the same way, and know that it was okay, and that God had forgiven her. Another mom shared she had never loved her sister who had a disability, but from that day on, she would chose to love her. Two other women talked to me after we met and they shared their stories. Their children are 'typical,' but their little ones in fact, belong to the Lord, and it is an honor that He had chosen them to be their mother.
Nichole is seven months now. Somehow, she inspires love in people. Somehow, her smile seems to splash you with rays of love from God. Her life has already changed the lives of so many people. Most of all, my own.



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