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 in 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.