Have you ever felt lost? So lost you can’t see straight? The kind of lost you dream about and wake up in a cold sweat? I have! I was lost for many years. So lost I couldn’t see the beautiful gift I’d been given. I’m no longer lost! I would say I’m the opposite of lost…I’m home!
To take you on this journey I’ll start at the beginning. In November 2003, I was happily pregnant with my first child. My husband and I were elated. We couldn’t wait to meet our perfectly normal, healthy baby girl. Every month we would read a chapter from our pregnancy book to see what fruit she most resembled at that gestational stage. All things in both of our lives had always been normal, no reason to expect anything different, until Katie was born.
After a week of being in the hospital because of preterm labor and her heart rate decelerating, Katie was born by emergency c-section at 32 weeks gestation, weighing 3 pounds 14 ounces. I’ll never forget the nurses telling Andy to sit down after they placed her in his arms because they were worried he would faint. She was so tiny, but she seemed perfect to us. Perfect through all of the tiny wires coming from her little body. It was really difficult to see her like this, and to top it off I had to leave the hospital on my 30th birthday and go home without her.
She stayed i
n the NICU for 45 days which we referred to as before the news and after the news.
One day while Andy was at work, I was at the hospital hanging out with Katie. The Neonatologist was making his rounds and I can remember the day so vividly, I can even remember the smell of the room. I asked the doctor, “Are things progressing well, I’m beginning to worry because Katie is not doing some of the things the other babies are doing?” I was waiting for him to say, “Oh no don’t worry, she is just fine.” But that was not what the answer I got. The actual answer was the defining moment which changed my life forever. He said, “I think she has neurological issues. She’ll likely go home on a feeding tube and oxygen…but you are a smart lady, you will be fine.” The words rolled off his tongue as if he were an auto mechanic telling me I needed new tires.
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The next few weeks were filled with confusion. Katie began to breathe on her own, so she no longer needed oxygen and started taking a bottle, so we felt that she was fine. 
Some nurses would say there’s no reason to worry, while others said, you just have to wait and see. The words of DOOM! Do you know me? I don’t wait well!!
Katie was finally able to come home. All we had was a very annoying heart monitor. It had many false alarms and one time ended up in the trunk of my car because we couldn’t turn it off. Once we were home, everyone had an opinion, family and friends continued to say, she is going to be just fine. We clung to that hope! 
To say the first year was a roller coaster would be a huge understatement. All genetic testing came back normal…”Yay, her brain is perfect, but she’s 8 months old and still not sitting up. “She rolled over once, she’s fine.” “She cries constantly and chokes when she tries to feed.” “That’s just preemie stuff, she’s fine.” That was the constant conversation in my head. This debate would take me from relief to desperate depression, typically ending up in the fetal position crying all day. Then the night!
One evening we were getting together with some friends, kids in tow. There was one little boy the same age as Katie and it was like a ton of bricks crashed on my head. SHE’S NOT OK! I finally knew, I could pretend no longer, I had to face the fact…our daughter has special needs.
In my next post I’ll talk about the anger that tore me to pieces and how I began to slowly put them back together.
This is amazing!! So proud of you! I love you!!!!
I think this is such a great thing you writing about Katie and y’all are all such a beautiful family and I can’t wait to read your next post!! Thank you for sharing yalls journey with us!!
Love y’all
Jennifer
Cindy you are an amazing woman! I enjoyed reading your story and I will continue to pray for you and your husband’s strength in The Lord!
May God continue to bless you and your family!
Keep on smiling Cindy, and never give up!
Love you,
Dorothy Harris
So very happy and thankful that you have begun to share your journey, even when you are so very busy. Sometimes, God speaks very loud and we have to listen. Thank you for listening and sharing, you will surely touch lives that need your spirit and love of the Lord. Love you and very proud of you, Nat
Cindy,
Thank you so much for writing this. Except for the premature part, I felt like I was reading a personal account from my life in 2006. We had similar experiences with medical staff. Just maddening. Even without a diagnosis, doctors owe it to families to be honest and direct yet compassionate. I can only hope my work on our children’s hospital’s Family Advisory Council at least made some impact in that regard.
You helped me survive. A just read a devotional today about Jacob’s ladder. You were my ladder reaching down from Heaven to me to help me get through each day. Though you didn’t know it, you gave me strength to make it another day. You were a compass for me. Thank you. I love you. I can’t wait to read your postings and learn more about Katie. You and Katie are still a ladder from Heaven for me.
You are my inspiration as well…I know the pain must never go away. yet you live your life and make a difference in so many ways!
Cindy,
I am so excited about your blog! Katie is truly a blessing and taught me as much as I taught her in the classroom. Thank you for sharing your story. It will help many people, as well as, teach others that individuals with disabilities are people who just happen to learn, live and love in their own special way. God does not make mistakes! He inspires and blesses us in ways that we never expect. Now you are following in His footsteps and doing the same through this blog. Thank you! Looking forward to the next post.
Love ya’ll,
Lisa Robins
I love the blog.. its amazing.. Thank you for sharing with us.. This journey is very touching. I have known you for quite some time but never knew the details. Keep writting!
I am so excited that you have started your blog. Sometimes God speaks very loudly to get our attention and you listened. I really believe that your story will touch lives in a way that you can’t even imagine. I know that without a doubt we recognize that Katie is such a blessing to your precious family and to all of us, but what you may not see is what a blessing all of you are to Katie. She has fallen into a family of angels on earth!
God has good plans for all of us. Thank you for embracing this endeavor. I am so proud of you. Love you.
Cindy,
I am so excited about your blog! Katie is such an amazing person (as are you). I believe you will teach others so much as you write about your journey with Katie and growth in Christ’s love. He shows us love and happiness in ways that we could never imagine. I think Katie taught me as much as I taught her in the classroom. I miss those lessons and that smile. I can’t wait to read your next post. Thank you for sharing your story and insights. Miss y’all!
Love,
Lisa Robins
PS – I love the blog name!
Oh How we miss you!! Thanks for reading and I hope you are doing well!
Cindy, I am so thrilled that you have decided to do this! Those of us who love you so dearly but don’t live nearby will get to take peek at you and your amazing family and see your journey of faith. Blessings to you guys!!!
Thank you Lisa! I miss you!! Love you!
Thank you for sharing your sorrow & love . I know you will help many . What a wonderful loving family Katie has.
THANK you for all of your encouragement!!
Sweet Cindy,
What an accomplishment this is! You are an amazing woman full of Gods love. Katie, Lexi, Drew, Andy and everyone in your life are so blessed to learn from your true wholehearted honesty. I love you!!
Thank you for sharing your incredible story!
You have the most beautiful faith. You are an inspiration to me.
Cindy,
U r so awesome!! Beautiful children!! And they r all 3 PERFECT!! Loved ur blog:)
Thank you for sharing Katie’s precious beginning. I cherished every word and look forward to your next post. I will be praying for you sweet friend.
Cindy, thank you so much for writing Katie’s story. Along with you, Andy, and your sweet children are a beautiful family. We look forward to your continued articles. You write so well, perhaps you should consider a book!
Love to all,
Bob and Joan Bruhn