This Is Why I Write

I write because I am broken.

And I have found great beauty in this brokenness because of the great love and compassion that surround it.

When my second daughter was born with Down syndrome, she challenged what I viewed as perfect, worthy, important, and valuable in life. I had received her as a broken baby, only to quickly recognize that I was the broken one. The treasures I have discovered along the way are not found in strength, performance, eloquence, character or confidence. They are found in brokenness, where beauty is found unexpectedly as a result of God’s love and compassion transforming my life.
- Ellen Stumbo

That was the beginning of my brokenness. Once I recognized who I really was, a beautiful journey began to take place. Yes, I am a writer, and writers write. However, it was through writing that I explored my feelings, my thoughts, ideas, dreams, and passions.

I felt passionless for along time. Then suddenly I had a baby girl with special needs that made me recognize how self-centered my life was. Acknowledging my brokenness gave me passion to live life different. I needed to be broken.

Through my personal blog, I began to share about life with a baby with Down syndrome. After a while, I began to receive emails from other women who were struggling with a new or a prenatal diagnosis of Down syndrome. Somehow, it seemed, my words touched their heart and they needed someone to talk to. I prayed for each one of these women, and soon I recognized I was part of a greater story where I only had a small part to play. But however small, I considered it to be an honor and a “high calling” so I continued to write.

When our “special needs” family expanded by adopting a child with cerebral palsy, I began to write about adoption. Mainly, I was writing about the emotions of adoption, because I wanted to be honest and real about the process. Adoption was hard. I wish someone had reached out to me and affirmed that my emotions were normal. After almost a year, when I finally had someone in the adoption community to talk openly and honestly about all my feelings, I knew it was time to share those through writing.

I write because I want to offer hope, courage, and community to those reading my words.

I write because I don’t want the hurting, struggling, or broken to think that they are alone in this journey of life.

And I write honestly, because if I only tell you what makes me sound good, perfect, or like a worthy pastor’s wife, then I have cheated you in some way. If I tell you that adoption is hard, but I don’t tell you that it took me more than a year to feel any love for my child, I have alienated you if you too are an adopting parent struggling with love. If I tell you that I struggle with anxiety, but I don’t tell you that almost a year ago I had to ask for help, then I have made you feel lonely in your own struggles thinking nobody will understand or that you are “worse off” than the rest. If I tell you that being a parent is a joy, but I don’t tell you that at times I feel like a failure as a mother because of my media addiction, then I am not allowing a level of accountability or honesty to enter into my life, and maybe yours too.

The most personal is the most universal, the most hidden is the most public, and the most solitary is the most communal. What we live in the most intimate places of our being is not just for us but for all people. That is why our inner lives are lives for others.
- Henri Nouwen

And this, this is why I write.

 ***

Linked up to the writing prompt, Why I write

Why I Didn't Write a Review About Last Year

It is typical in the blogosphere to write a review about the year we leave behind. I tried to do that, I even included the topic for one of the writing prompts. Yet, if you read my post  you might scratch your head and wonder why I shared so little. But that is my professional writer blog, so it was all good. However, this is my personal blog, where I get more personal and sometimes a little bit raw. I didn't have the emotional energy to write a review about last year because it was hard. There is a reason why this little blog has been neglected in the last year too.

As much as I share about brokenness, there are some broken places I don't write about. Mainly because I don't know where to draw the line when it comes to writing or sharing about ministry. When your husband is a pastor, church is a big part of your life.

Church has been hard. Really hard. Maybe it is the difference between being the associate pastor to being the senior pastor, I really don't know. But I do know that it has been hard.

This summer, I was ready to walk out. Not just out of the church, but I was done with ministry for good.

We were in the pits of discouragement.

Andy and I attended a pastor's retreat at that time, and I don't know where I would be in my heart if it had not been for that time spent away and resting before the Lord.

In a small church, you end up doing all the jobs, and you also end up getting all the heat (for the things you do or the things you don't do).

Oh some things have been good, exciting even! Some new people have come and our church is now hosting a clothing give away once a month that I really love to be a part of. Yet, the ministry here has been hard and incredibly lonely.

And this is where I struggle to share more, because it is still so hard and so lonely.

Emotional distress has a way of affecting your physical health too. I've always had anxiety issues. I even joked about being hypochondriac, but these issues became very real for me. Almost a year ago, after another night of sleeplessness and realizing I could no longer function, I told my husband I was making an appointment and going to the doctor to get some meds. I have always been one to encourage women who need help to deal with depression or anxiety to do what they need to do to get rid of the veil that blinds them and keeps them from enjoying life. It was incredibly difficult to look at myself and realize that I needed help too. It was humbling to "trade places" and be in the receiving end.

It is especially hard when you see your child being so susceptible to your emotional issues that you begin to see some of those (in a smaller scale) in them too. What a wakeup call!

Although I did not end up taking regular meds, I have changed some of my diet and I take a lot of supplements because my issues are related to some significant deficiencies in my body. Adrenal fatigue and hormonal imbalance do a lot to your brain's chemistry that prevent those neurotransmitters from firing properly. Of course there are spiritual issues going on too.

It has been a slow progress, and writing this makes me feel like a failure and a whiner. But it is the truth, and it is part of my brokenness.

I also know that I have been doing this in my own strength, keeping God at arms length. Recently, I have been convicted about my prayerlessness, and the fact that if I read my Bible 10 times last year I might be pushing it. Yes, I am the pastor's wife whose Bible gathered dust throughout 2012. Because for some reason some people expect a pastor's wife to be more spiritual than your average woman. I am not, I am so broken. And this year I have done a lot of asking Him, "Are you in this? Do you care? Why did you bring us here?"

But I know God is not done with me yet, He is not done with this little church either. He has not promised that things will get better, and I am not planning on that either, but He has promised to be with us. So this year, I am clinging on tight. This year, I am getting down on my knees because I desperately need Him.

My eyes will focus on Jesus because I know it is still going to be hard, but doing it on my own was no good. I just need Him.

Whatever His plan and purpose is, He has us here now. And even if there is a storm, His mighty hands hold me tight.

***

  

(I am not looking for advice or suggestions).

A Treasure that Brings Joy {a guest post}

When our sweet Elizabeth Clare entered the world on August 10, 2011 and we heard her cry, I wept and wept and wept. I wept in joy and in relief. After losing our dear Andrew Jon two days after his birth at 26 weeks gestation almost two years earlier, this was a very hard pregnancy. I was always waiting for the bad news to come. Waiting for the doctor to come in after one of our many ultrasounds and say, “I’m so sorry...” Waiting anxiously to see if we would hear the baby’s heartbeat at the regular check ups. Waiting in fear that I would lose this baby too. It was so hard to trust in the Lord and to wait in hope. To hear her cry was the greatest sound in the world!

I knew something was wrong when two nurses came in the next morning and told me they had talked to my doctor and that I should call her once my husband and I were together. Not able to wait, I called right away. “What do you see when you look at Elizabeth?” my doctor asked. And I started to cry. I told her the things I’d noticed that morning as I took the hat off to get a good look at my beautiful girl...small ears, different shaped eyes, something different with the shape of her head and her nose...yes, the nurses had noticed those things too, along with some other physical markers that were consistent with Down Syndrome and they wanted to do a blood test to be sure. More tears. Tears for the dreams I didn’t even know I had for her that now seemed to die with those words. Fear of the unknown; what will her life look like?...will she have friends?...what kind of care will she need?...tears. And then, immediately after that I heard the words: “She has been chosen for us and we have been chosen for her” and “I’m going to learn to love in a whole new way” go through my mind and heart.

I called a dear friend from the hospital. Getting her voice mail, I left a message. She called back a little while later saying, “When I heard your message I thought ‘The Lord loves the Lichty’s so much. They have a Saint in Heaven and a saint on earth!’” And I was so blessed by her beautiful response. Her joy and excitement helped to ease my fears. She knew, in loving their precious son with special needs, what a gift we were being given.

When my husband Joe, got to the hospital later and I told him about Elizabeth’s diagnosis, his response was, “I don’t care, she’s my daughter!” He immediately picked her up and snuggled his precious little girl. We shared the news with people by saying that Elizabeth was born with an “extra chromosome of love!” And it’s so true!

We love loving her! Her older brothers delight in delighting her. She makes us all better and we want to be better for her! She has brought a new joy and a new spirit to our home. We don’t know what the future will hold or what challenges we will face, but that is just as true for all of our children. Our job is to love her and help her reach the potential God has for her, just as it is for each of our children. When we say our family prayers more than one brother always prays, “Thank You God for Elizabeth and the joy she brings us!”

How do I respond to people who share that we “have already been through so much?” and “Why did this happen to you?” I tell them, “We are the blessed ones! Don’t feel sorry for us! We love her so much! We can’t imagine life without Elizabeth!”

Yes, there are doctor appointments and specialists. And there is therapy and interventions through the school district. Yes, there are days of anxiety and fear. Yes, there are questions and stares. Yes, there is all that...but there is so much more focus on the life and the love and the joy and the laughter that makes our home and our family complete. Don’t be afraid! We never lose when we choose to love!!

We wouldn’t trade Elizabeth for anything! I can’t look at her and not smile. Her life is a gift, a precious gift, and she is going to teach us about life and love and God in ways we can’t even imagine! Thank You Lord, for the treasure You have given us in Elizabeth. We are blessed!
________________________________  
About the author: Shelly Lichty has been married to the love of her life, Joe, for twelve years.  She is a homeschooling, tea drinking, card playing, girlfriend loving, mom of six children.  The oldest five are boys-Lawrence, Michael, James, Philip, and Andrew-who is in Heaven and their youngest is sweet Elizabeth.

Down syndrome {on her 5th birthday}

It seems unbelievable that five years ago Down syndrome entered our world when Nichole was born. That day replays in my mind every year on her birthday, fresh as if it has been not too long ago. It is no cliche, but rather a truth when people say, "kids grow up too quick" and "time goes by so fast." I was so scared.

If only I could redo that day, when I saw my baby come out of m, her back side displaying her thick neck confirming that she in fact had Down syndrome. As if in slow motion, I saw her naked back side coming to me, ready to rest on my chest. Down syndrome about to be handed to me, not my baby, but a condition. I wish I knew then what I know now.

This little girl has come to steal my heart. She has given me purpose, passion, and direction. She changed my life. This child of God entrusted to us is a gift. Yes, there is something about Nichole, something that touches my heart and spirit in ways nobody else can.

Her celebration of life touches my heart and makes me wish I celebrated with the same gusto she does. I wish I could feel the joy she feels, and I wish I could love unconditionally the way she does.

Nichole spent her birthday sick. And although she had a rough day, being sick, with a fever, and congested sinuses (not to mention the worse attendee at her own party). She still managed to expand my heart, and make me fall in love even more.

As we had lunch together she announced, "I help you" and she stirred the eggs. She also told me several times, while pointing at her head, "I sick." Because she loves the attention of her dismay.

She is my angel, and she holds my heart. I am who I am today in a large part because of her. her influence is making a mark, and her contribution to her mom, her family, and those that know her is already significant. This little girl is in the business of changing lives, and I have the honor to be her mother.

I live you rascal, with every ounce of my being!

Do I Matter? Do I Make a Difference?

I opened my closet and studied the options dangling from my hangers. What was I going to wear for our family photos? Certainly not a formal dress, a t-shirt, or the styles from a decade ago that somehow still hang in my closet.

I am not a fashionista. Ask my trendy 18-year-old sister and she will tell you she would love to revamp my wardrobe. I really don’t think much about clothes and I have no reservation taking the hand-me-downs from friends. So why exactly did I feel a lump in my throat? Why did I feel emotional over my limited attire? Was it because Andy teased me that all our clothes were dirty and the piles of laundry spilling from our rooms and bathroom were proof of my incompetent housekeeping job?

I grabbed two shirts and presented them to my friend who was taking our pictures. She picked the one that matched best with the girl’s clothes.

“I just don’t ever buy clothes for me.” I self -consciously said to Melissa. “I only spend money on clothes for the girls. They are the ones the really need them since they are growing and wearing them out. I just wear jeans and a t-shirt most days.”

In that moment, I could have walked to my room, closed the door and cried. The emotions felt so raw that I knew this was not a simple case of, “I have nothing to wear!” 

So what was it then?

The truth is I felt embarrassed.  My laundry had never been piled that high. I was swimming in a sea of dirty clothes, dirty dishes, and unplanned menus, struggling to stay on top of necessities, like clean underwear, or a peanut butter and jelly sandwich. Melissa was visiting, she is a Children’s Ministry Consultant and she is good at what she does. She had come to do training for us and we learned so much from her. She is making a difference in the lives of children across the United States by investing in the churches that invite her to come. My job, on the other hand, consists of my little home and there was evidence I was failing miserably with my maintenance skills.

As I opened my closet, I was really asking: Do I matter? Do I make a difference? Am I more than a mom and a wife and a housekeeper?

God I am failing at this homemaker thing, I don’t seem to get it. I honestly don’t even enjoy it, it is a chore. I need your joy to do the simple things of raising my family. Yet I know there is more to my life than cleaning and cooking and folding clothes. Help me to see what you see when you look at me. Help me to understand your plans and the season of life I am in right now. To embrace it with joy, to follow you wholeheartedly.

And it is in the moments of brokenness where I experience God’s love and compassion transforming my life. He sees me. The woman. Not the mom, cook, or house cleaner I see, but me. A 31-year-old woman that He created to have dreams and hopes and stories and ideas.The one that is right here and right now for a purpose.

Yes, what I do matters to my husband and to three beautiful little girls that have been entrusted to my care. I know that what my girls see happening within the walls of our home will shape who they become. A loving mommy in a ponytail, t-shirt and jeans can mold little hearts and help them grow in love, compassion and acceptance. My interactions with people at the church and with friends matter. My involvement with the girl’s school can make a difference.

I am thankful that God does not tire of reminding me of truths I can easily forget.

“What about we go to TJ Maxx and we get you some nice shirts.” Melissa proposed the following day.

And so to TJ Maxx we went, and I found some cute and stylish shirts. My sister will be proud of me.


Linked to:
Playdates With God
Sharing His Beauty
A Handful of Heart
The Better Mom
No Ordinary Blog Hop

Broken Pieces

 The solid, untreated wood draws me in – so real, so present – a symbol of the great sacrifice offered on behalf of my sins.

Each thorn on His brow, each slash on His back, each drop of spit on His face, and the three nails that pieced His skin, all suffered to save my broken soul. His life offered in exchange for mine.

The earth trembled, the veil was torn, the dead rose to life.

Surely this was the Son of God.

With my broken pieces I run to Him; His open arms ready to embrace the daughter who easily forgets.

He breathes life into me, covers me with forgiveness, and lavishes me with unending and unconditional love.

A gift of life.

You paid the ransom for my soul. I belong to you.

Although I am made up of broken pieces, I offer those freely. All of them.

Take these broken pieces and make them into something beautiful.

Take these broken pieces and use them for your glory.

Take these broken pieces and change me.

I will follow you.

A Hope and a Future (A Recycled Post)

This story took place 2 years ago on Christmas day. I thought it would be nice to recycle this post and remember...

I sat up in bed and took a deep breath. The air cold and stale from the scent of vanilla air freshener, mixed with the cigarette smoke that oozed from the walls of the black and white one-room apartment. The dark brown curtains tried to conceal the light, yet the morning sun had managed to send a few gray rays to sneak around the folds of the heavy curtain.

A little girl pulled on my sleeve and made the sign “eat,” followed by a string of Ukrainian words. Then in English, she managed to say, “Banana.” It amazed me how for Nina the thought of food was enough to brighten her day, while all I could think of was that it had been six weeks since I had been home, and today would be an especially hard day. It was Christmas.

I carried Nina across the room and set her on the black leather couch that functioned as the living room. I pulled a black coffee table close to her, hence turning the living room into the dining room. Thankfully, there was a DVD player and I had brought some DVDs from home. I played “Signing Time!” for Nina often. She loved the music and I hoped that more signs would stick with her besides the sign for “eat” so that we could improve our communication.

While Nina watched the show, I proceeded to get breakfast ready for her: chamomile tea, dry cheerios and a banana. I set all three items on the small black table and she smiled. I knew we would do this again at least two more times that day. It was always the same, the only things I could get her to eat were bananas and dry cheerios. At least she was willing to drink different flavors of tea.

Once she was settled I turned on my computer ready to check my e-mail messages, it helped me to feel connected to my home. Nevertheless, there were few messages that morning. I realized I was angry that everyone else was happy enjoying their families, while I was stuck half way across the ocean. I settled to find Christmas music on-line and searched for Amy Grant’s rendition of “I Will Be Home for Christmas.” I wanted to sing along, especially the line, “I will be home for Christmas, but only in my dreams.”

After my little outburst of bitterness, I decided I needed to lighten up my mood and find a little Christmas cheer. I plugged in our tiny Christmas tree that was no taller than my forearm. The cleaning lady had brought it for us just two days before. I found a Christmas playlist on-line, and I cranked up the volume.

I sang and danced in the middle of the room while Nina watched intently. Then I scooped her up in my arms, weighing less than my two year old, yet twice her age. We danced and twirled to the music. It was a great ball to which we could wear our pajamas. The lights of the Christmas tree giving the perfect colorful glow to the small room.

However, Nina had lived most of her life with little attention, and after just a few songs, she was done with me, done celebrating Christmas. I set her on the white and black checkered floor and she crawled to the corner where she had a few toys. I knew she would be in her own world until she was ready to eat again.

I sulked the rest of the morning. I was engrossed in my own pity party and the little girl playing at my feet was oblivious as to how I felt. I began questioning if it was worth it. The adoption journey had me emotionally drained and it seemed as if Nina couldn’t have cared less about me. Moreover, back home, I had a husband who missed me and two little girls that cried for their mommy and could not wait to see her again. Every day being away from home was getting harder.

As I caressed my wounded thoughts, I looked over and watched Nina play with a box of crayons. She was dumping them out and then putting them neatly back in the box. For a second she looked back at me, made eye contact and smiled while waving the box. Then she continued with her activity, absorbed in her world. Yet, she had given me a glimpse and acknowledged me, if only for a second.

As simple as that moment was, it was the moment where my Christmas miracle happened. My eyes were opened to the beauty of the scene that took place before my eyes. I was not simply looking at a once orphan girl; I was looking at my child.

The journey of adoption had pushed us against a race of time trying to get our documents ready to get Nina. We had until her fourth birthday to rescue her, all because she had Cerebral Palsy. We knew that in her country she would die if we did not bring her home before that dreaded age where children with special needs are taken from their orphanages and sent to mental institutions. These are places where there is no hope and no future. The possibility of adoption is gone and most children die within a year after being tied down to cribs with little food and no medical intervention.

On that Christmas morning, I had chosen to be depressed wishing for what I did not have. Thankfully, I was reminded of what a wonderful day it was and how much I had to celebrate. I had a new daughter.

The little girl sitting by my feet would never have to go to an institution. She would never again know hunger or abuse. Nina had a family, with a mommy and daddy and two sisters. Her disability would not stop her, but rather she would be able to overcome her limitations with a family standing strong behind her, cheering her on. She would go to school, learn to read and write. There was so much in store for her and her life was full of potential. Nina had a hope and a future.

There were many sacrifices we had to make in order to rescue her and bring her home. Was it worth it? Absolutely!

“Nina” I called. She stopped playing and looked at me again. “Merry Christmas sweetheart” I said.

She didn’t understand what I was saying, so I did the best I could do at the time to show her love. I poured her a cup of more chamomile tea… with an extra spoonful of sugar.


Linked to:
Women Living Well
Word Filled Wednesday
Works For Me Wednesday
Winsome Wednesday
No Ordinary Blog Hop

First Chapter Finished

Well I did it, I finished sharing the beginning of my personal journey with Down syndrome. I suppose if it were a book, this would have been the first chapter (although it would have been quite long!). The story, obviously, does not end here since Nichole is 4 years old.

This is something I would like you to know. Nichole is a light in my life! She is the daughter I always wanted, I just never knew it. I would not change her, Down syndrome and all, for anything in the world. Yes, she is exactly who God created her to be. She has been my teacher of life, she has been my joy, she has been the source of endless love. I really want you to know that.

I wrote 24 posts sharing what it was like to deal with the diagnosis of Down syndrome. Hopefully, I was able to communicate with you how God met me in a dark place of brokeness, and how He used Nichole to change my heart.

If you did not get a chance to read, you can start by reading my first post or "Prologue": Road Marker 321.

At the end of each post, you should see a link to the next entry.

If you did get a chance to read. What did you think about it?
If you have a child with Down syndrome, were you able to identify?
If you do not have children with special needs, was this helpful to you?
Were you ever in a situation where you had to chose love?
Have you ever been in a hole where God pulls you out and holds you in His arms?
Have you experienced flashes of color in your life that you never knew before?

I would love to hear from you. I got to share my heart with you, and it would be an honor to hear your heart too.

So Much Love

Every test Nichole had at the hospital came back negative. Yet, one test would lead to other tests, as her blood work continued to show abnormal liver activity. During the following days, as we waited for Nichole’s several tests to be done, I became obsessed with reading “Gifts.” I cried with every story. I underlined words and phrases that spoke to my heart, and I wrote on the margins of the book. 

Andy, on the other hand, was reading all he could on-line about the different tests and possible conditions doctors talked about.  We laughed, as one of the doctors asked Andy after discussing a certain test that would be done the following morning if he was a doctor too. 

“No” Andy replied, “I just have a lot of time in my hands to research.”

The fact that my husband was so knowledgeable of what was taking place medically gave me incredible peace. I did not have to worry about Nichole’s health. I was working on finding my new dreams, and expanding my hope for the future.

“Honey, listen to this” Andy said to me one afternoon as he clicked on a link for the National Association of Down Syndrome. “There is an article here called: If People With DownSyndrome Ruled the World.”

“Is it good?” I asked.

“Affection, hugging, and caring would make a huge comeback” he read.

“I like that!” I responded.

“The words “clean” and “fun” would be used in the same sentence” he continued.

“Oh! I really like that!”

“Weather would be the only essential news item.”

“Hey! I exclaimed, “That is the only part I care about too!”

We laughed. I sat by him and we read the article. We laughed. We smiled. And we agreed, the world would be a much better place if people with Down syndrome ruled the world.

“If God showed up right now” Andy said, “And offered to take Down syndrome away from Nichole, would you chose that?”

“I don’t know,” I answered truthfully. “I think I would want to right now, because it is so new, so different. Yet I feel that if I made that choice, I would be missing out on something big. And I would regret it. What about you?”

“No. I want her to have Down syndrome” Andy responded, “God intended for her to be this way, and I would not want to change that. God has great plans for her.”

“Yeah. I think He does too.” 

In the middle of the night, I walked back in the dimly lit corridors of the hospital after depositing 2 fresh bottles of milk in the fridge. The night nurse approached me.

“Hi Ellen, how are you guys doing?”

“So far so good. They still can’t find anything wrong with Nichole, so I guess that is good”

“Yeah…you know, I noticed that book you are reading.”

“The book “Gifts”?”

“Yes. I hope you don’t mind, I flipped through it a little bit.”

“That’s okay”

“I just wanted to say…that you are very lucky.”

“I am?”

“Yes you are. My husband works with adults with disabilities, and well, we have fallen in love with people with Down syndrome.” She smiled, “We have been trying to adopt a baby with Down syndrome, but there is a huge waiting list.”

“Really?” I asked surprised.

“Yeah. We have looked at international adoption too, but it is so expensive, we just can’t afford it now. We have 2 kids, and we are done. The only way we would try again, is if we had a guarantee our baby would have Down syndrome.” She laughed at her own statement, “I know! It sounds crazy! But you are lucky. You have been given a precious gift. And you will have so many blessings in your life because of her. There is just something about Down syndrome, I don’t know what it is, but it really is special.”

“I think I am beginning to learn that.”

“Well, I don’t want to keep you awake any longer; I just wanted to say that.”

“Thanks…actually, do you mind if I give you a hug?”

“Not at all.”

I hugged the night nurse. I did not catch her name, and I had not spoken to her much that evening, but she had given me a gift too. She was so genuine. She did not see my child as broken, or as a mistake. She knew she was perfect. And she knew that the gifts that would come to us because of Nichole, were gifts she wished she could have in her life too.

After 6 days, we left Mayo’s hospital. The diagnosis was no more than an immature liver that was just taking a little bit longer to learn how to work. We had medicine and we would be back in 2 weeks to do more blood work.

We picked up Ellie at my mom’s house and spent the night with her and my sisters. Nichole was held, kissed, and loved.”

The next morning we drove back, happy to be making our way home. It occurred to me that just 3 weeks before; I had taken a broken baby home. I had been devastated about her diagnosis and had wished for my life to be different. This time around, I was coming home to celebrate life as a new mom. Love had quickly taken me, all of me.

Flashes of color I had never seen, began to make their way to me. I was mesmerized by the colors, taken by their beauty. 

How was it possible, that I had gone for wishing for my baby to die, to knowing that I desperately needed her? How was it that in 3 weeks, my baby girl had taught me more about unconditional love than I had ever known in my lifetime?

This was not the road I would have chosen willingly. Yet, now that we traveled that road, I knew, just as Andy knew; that I wouldn’t want it any other way. And like Andy, I had been surprised by joy. Joy, and peace, and love. 

There was open, unknown space before me, but I would feel the warmth of my baby girl as I held her close. She would lead the way. I wanted to begin the journey. A journey into a beautiful wildness. It would be a journey full of love. So much love.

The End

Don't miss:
Road Marker 321

My Body Is Cooking a Baby: Part 1

My Body Is Cooking a Baby: Part 2

My Body Is Cooking a Baby: Part 3

The Dream

Level 2 Ultrasound
Your Baby Might Have Down Syndrome
Surprised by Joy: Part 1
Surprised by Joy: Part 2
Surprised by Joy: Part 3
Surprised by Fear
We Belong Together
A New Family
She Has Down Syndrome 
Nursing 
She Has a Broken Heart 
Fooled Them All 
My Mother's Arms 
Tears Flow 
She Is My Own 
I Chose Love: Part 1
I Chose Love: Part 2
Flashes of Color

Flashes of Color

As we drove to Mayo’s hospital, Ellie talked. She talked about how excited she was to stay with Grandma Chachi for a few days, and the fun things she would do with her aunts. Andy and I listened mostly, distracted by thoughts of Nichole and what the prognosis would be.

 At times, we drove in silence. I thought about Jennifer, Ellie’s best friend with Down syndrome. A little girl I had watched for a year and had fallen in love with. It amazed me how little I ever thought of her diagnosis. Jennifer’s life was beautiful.  My baby, like Jennifer, was God’s precious gift.

“I don’t think I can do life without her.” I finally confessed.

“I can’t either” Andy responded.

At St. Mary’s hospital, my mom waited for us in the lobby with my sister Luisa. She hugged me tight and kissed me.

“We will take care of Ellie, don’t worry. And we will be praying. We have everyone praying at church too.”

“I know” I said, “We are grateful for all the prayers.”

We made our way to the third floor of St. Mary’s hospital. They were waiting for us. On Nichole’s crib laid a set of diapers, wipes, and a cozy blanket. The nurses were friendly and caring. They made small talk, smiled, and offered to help us get comfortable for the night. We realized, from their attitudes, that even if Nichole had biliary atresia, which was serious and potentially fatal if not treated, it did not mean she would die. Tests would not begin until the next morning. We had an entire evening to sit and wait.

A “Child Life” specialist, a sort of social worker, came into the room and offered several things to make us more comfortable. Among those things, was a laptop, so that we could check our e-mail and keep in touch with our family. We accepted the offer and she was back within minutes with a computer.

The first thing Andy did was research “biliary atresia.” He wanted to know what tests would be done, and what those were for. While he was glued to the laptop, I was glued to the pump, making sure my baby would have milk.

“I think we need to find out as much as we can about Down syndrome,” Andy said as I fed a bottle to Nichole.

I had checked out every book on Down syndrome available at our local library. All of those books had been depressing. Pages on all the ways my baby would be different, inferior, and broken. Words describing all the things that could go wrong, and the many challenges we would face. Every time I had tried to read one of those books, I had closed them after a few pages and cried.

“On-line?” I asked.

“Yes, on-line, but also we should go to Barns and Noble and get some up to date books. Not those outdated ones from the library. I think that is all garbage.”

“Okay” After a pause, I added, “Maybe we can go while Nichole takes s a nap.”

Later that evening, we walked into our favorite bookstore; a preferred place for our date nights. For the first time, we searched for the “special needs” section. When we found it, we were amazed at the hundreds of books on the shelves. 

I have been so blind at the world around me. I never really noticed children with special needs, but there are so many…

Autism. Aspergers. Cerebral Palsy. ADHA. ADD. Sensory Processing Disorders. Turette’s Syndrome. Spina Bifida. Deafness.

The list went on.

Finally, squeezed among the many books, I noticed the words “Down syndrome.” I pulled books out of the shelves, trying to decide what I wanted to read. I did not want lists of doomed futures. I did not want guides on how to teach my child gross motor skills or speech. I was looking for hope, for dreams, for a bright future.

Andy walked to me and handed me a book.

“I think this is the book you need to read,” he said.

On the cover, a naked baby was held by the strong hands of a father. White letters in contrast with a gray- blue background that surrounded the picture read, “Gifts.” Underneath the photo, the subtitle, “Mothers Reflect on How Children With Down Syndrome Enrich Their Lives.”

I quickly flipped to the back cover, “Having a baby with Down syndrome is not something most parents would willingly choose. Yet many who travel this path discover rich, unexpected rewards along the way.”

I could feel my heart beating faster. I opened the book to the foreword and read the first line. “Your life will have flashes of color you never knew possible.”

My life will have flashes of color I never knew were possible.

Those words, so real, carried with them great power. The hope and dreams I was searching for were contained in that sentence. I held the book close to my heart. In the middle of the aisle at Barns and Noble, I kneeled down hugging a book. Tears showing up once more, I closed my eyes in an effort to make them stop. Yet tears kept pouring out. And through my tears, I smiled. Because for the first time, I was not crying because I was sad, I was crying, because I knew my life would have flashed of color I never knew were possible.  I was crying, because I had been given a gift.

Next: So Much Love

Don't miss:

Road Marker 321 
My Body Is Cooking a Baby: Part 1
My Body Is Cooking a Baby: Part 2
My Body Is Cooking a Baby: Part 3
The Dream
Level 2 Ultrasound
Your Baby Might Have Down Syndrome
Surprised by Joy: Part 1
Surprised by Joy: Part 2
Surprised by Joy: Part 3
Surprised by Fear
We Belong Together

A New Family

She Has Down Syndrome 

Nursing 

She Has a Broken Heart 

Fooled Them All 

My Mother's Arms 

Tears Flow 

She Is My Own 

I Chose Love: Part 1 

I Chose Love: Part 2

I Chose Love: Part 2

In a heap, on the floor, I faced the dark hole I had been living in since Nichole’s birth. It was deep, murky, and tight. It had become a prison.  Life happened around me, yet I was stuck. My tears had been so abundant I would soon be covered in my own grief. My despair over what I saw as unfair would be what would cause me to drown, not my baby, and not her diagnosis. I had been blinded by the unending tears. 

In the hole, I stared at my ugly selfishness. I had been consumed with what Nichole’s diagnosis would mean to me. I was bitter over the loss of my dreams and expectations. I had not stopped to think what the diagnosis would mean to Nichole. Not beyond questioning if she would always live with us, what any medical conditions would come our way, or if she would marry. Even then, those concerns were about me.

Would I be able to stand before the Lord and answer to Him for the lack of love I had felt with Nichole? Could I live knowing I had held back from loving my baby because she was not what I had expected, not what I wanted? 

This selfishness was a reflection of my imperfect heart. Nichole, only 2 weeks old, was so beautiful, and she was perfect. 

I don’t make mistakes.

I was broken, so broken in fact, that I needed Nichole.

She is my own. Will you love her too?

I pulled myself to my knees. I stretched out my arms to God and declared to Him, with every ounce of strength I had…

“I chose love Lord. I chose love. From this day on, with everything that is within me, I chose love!”

And God pulled me out of the hole, and held me in His arms. Because He had chosen love for me too, His broken child.

Next: Flashes of Color

Don't miss:

Road Marker 321 
My Body Is Cooking a Baby: Part 1
My Body Is Cooking a Baby: Part 2
My Body Is Cooking a Baby: Part 3
The Dream
Level 2 Ultrasound
Your Baby Might Have Down Syndrome
Surprised by Joy: Part 1
Surprised by Joy: Part 2
Surprised by Joy: Part 3
Surprised by Fear
We Belong Together

A New Family

She Has Down Syndrome 

Nursing 

She Has a Broken Heart 

Fooled Them All 

My Mother's Arms 

Tears Flow 

She Is My Own 

I Chose Love: Part 1