Cure for Selfishness

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 mother...is 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.

Extra Chromosome: Deep Connections/ Pray for Abby

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.

Nichole's health update

Give thanks to the Lord, our God and King,
His love endures forever
For HE IS GOOD
He is above all things
His love endures forever
SING PRAISE!

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 moment...in 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

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.

The Blessings of Being "Mommy"

This is a pretty typical sight at our house. Ellie loving on Nichole. And Nichole looking like, "When is this girl going to stop hugging me and kissing me?" But I have to say, Nichole smiles every time Ellie is around, just not that much when she is stuck in a bear hug for what seems like hours (if you were a baby, you would think it was hours too!)

I love being a mom. If you could hear Ellie's sweet voice when she says' "Mommy." You could not help but smile. Many times, I have wondered if we have that same effect on our Heavenly Father. Maybe He smiles as soon as we utter the words "Father."

Ellie is in such a fun stage. She talks all day long, she has a big imagination, and she lives in her stories, having fun and playing all day (some might say she takes after her mother). She loves to hear stories, and she can make up her own, just as well as anyone else. You would be surprised that she is only two! She has started to pray on her own, and it is so sweet, she tells God stories as well. I can only picture His face beaming with pride as His little princess takes time to talk to Him, not just to go through a list of "please do this for me" or "thank you for such and such," but just to take the time and talk to Him, tell Him stories, be thankful and excited for the little things that happened during the day.

Nichole, well, I continue to be amazed by her. I know that when some people hear the words"Down syndrome," it seems that the Lord is taking us on a "tough road." Nothing could be farther from the truth. This is the sweetest road I have traveled. Not the road I would have willingly chosen, but now that I walk it, I would choose it a hundred times. This little baby girl can touch my heart like nobody else can. Her smiles, I believe, have a little bit of a "heaven tint." It is a beautiful road where we can stop and enjoy life, and discover, along the way, the true value and meaning of life. I pray that someday, the Lord will use me so that others can see, how beautiful it is to have a child with an extra chromosome. That maybe someday, as women hear a pre-natal diagnosis of Down syndrome, they will smile and say, "I am sooo lucky." Because I now know, that I am.

Here are some pictures of Nichole. She is now 6 months old.

"I am soooo confused"

"I guess I will take a bath if I have to"





Here are some pictures of our princess Ellie. I realize that I have no pictures of her wearing a princess crown, butterfly wings, a custom, or her Cinderella dress. I will post some later.
"I love chocolate"

John 9:1-3

Nichole is five months old!

Time flies by, and at the same time, I feel like she has always been around.

More and more I realize how perfect she is for our family. At least she is perfect for me. The Lord has used this baby to do in me, many marvelous and wonderful things. I am not the same person, and that is because God chose a little baby with Down syndrome, to change my life forever!

The Bible does not talk about Down syndrome, actually, I have always wondered if some of the characters we read about had Trisomy 21. Back then, there was no label, they were just people. As a mom, I wish my daughter didn't have to grow up with that label either. However, back then, they did have labels for other disabilities, and I found a story about a blind man. His story has encouraged me and confirmed in my heart what the Lord's plan is for Nichole.

"As he went along, he saw a man blind from birth. His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind."

"Neither this man nor his parents sinned" said Jesus, "but this happened so that the work of God might be displayed in his life."

The work of God will be displayed in my daughter's life! In Nichole's life! And you know? It already is.

I feel like I have learned so many lessons, so profound, so mysterious. And she is only five months old! I have so much to look forward to!

Ellie is great with Nichole. She loves hugging her and kissing her. As a matter of fact, Ellie kisses Nichole more than she kisses her mommy or daddy. And Nichole loves Ellie too! She smiles at her and watches her all the time.

The Lord has blessed us with two beautiful daughters. I am so humbled that He hand-picked me to be Ellie's mom, and Nichole's mom. I think of how Mary felt when the angel of the Lord announced to her she had been chosen to be Jesus' mother. My assignment might not be as big as hers, but I was chosen too, and He has entrusted me with these precious little girls. I pray that I will do the best job at loving them and raising them.

Nichole at 3-months

Do we have the cutest baby or what!

I know Nichole is almost four months, but I figured I should post some of her three month old pictures. It is amazing how many more pictures the first born children tend to have! We have tried to have Nichole's professional pictures taken every month like we did with Ellie. So far we have done her month old pictures...and hopefully on Friday her 4 month pictures :)

Ellie is the greatest big sister. She loves Nichole. She constantly tells her, "I love you Nichole;" "I love you baby sister;" and perhaps one of my favorite ones, "You are my best friend Nichole."
Yep! That's right! Some rolling over action going on here! And do you see the one arm lifted off the ground? She is amazing!
"Thanks for looking at my pictures."