When Life Doesn’t Go As Planned

The second I found out I started planning. Within a few weeks, walls were painted, furniture was ordered and assembled. I was so ready.

I think I’ve always been this way. With our wedding, I had everything figured out so quickly that I ended up having to cancel our wedding planner. With our house, I had a binder that laid out, step by step, how I wanted everything to look so by the time we go to the designer we were done in less than an hour. (If you’ve ever built a house you know that it can take hours). While this sounds really good, sometimes it comes back to bite you. This was one of those times.

We waited three years after getting married to think about having kids. That seemed like the perfect amount of time to me. All my life I dealt with symptoms of PCOS, so we thought it would most likely take a while to conceive. False. Just a few months later and I was sending pics to my girlfriends trying to decipher the positive symbol on the pregnancy test. We were ecstatic. And so began my habit of diving head first into planning.

I started buying clothes early whenever I found a good sale. I started getting books and flash cards and toys. I got so many things in advance, that when it came to the baby shower, there wasn’t very much left to put on the registry. In my mind and in my home we were ready to roll.

Then the ultrasounds came.

At first, they thought that my doctor had estimated the due date incorrectly. So they moved it and had us come back again. Then they told us that it was a girl (woohoo!), but that she was growing a little slower than they had expected. So they had us come back again. Before I knew it, we were doing ultrasounds twice a month. I had more pictures of our precious girl then I probably had of myself, and she wasn’t even born yet! The anxiety started to rise. They assured me that she was growing proportionately and that she was probably just going to be petite. Then they told us that they believed she was growth restricted. I started asking all kinds of panicked questions. “Do you think she has dwarfism?” “Did I do something wrong?” “Am I not eating correctly?” They assured me that it was fine and that we would just keep monitoring her closely.

As we got closer to our due date, the decision was made to induce at 37 weeks to see if she would grow better outside the womb. I will say, as a planner, that I kind of liked the idea of knowing exactly when I was going to be going to the hospital instead of waiting for the random time at home. So we arrived at the hospital Monday evening with all our bags and all my plans.

Labor ended up being really quick. I mean, she was only 4lbs 4oz, so there wasn’t much to it. I had the epidural as soon as I could after hearing horror stories of women waiting until it was too late. By 2:30 that afternoon we were welcoming Kayce into our arms. I had some intuitive concerns, but we were so happy that I quickly brushed those aside.

I was a mom! We were a family! Best Day Ever!

Then things started going sideways. In the middle of the night, the nurses took Kayce to the NICU because she wasn’t holding her temperature. The following morning, a nurse came into our room and started …

“I know the pediatrician you chose, and I think he’d be ok with me telling you this.”

…wait, we hadn’t even seen the pediatrician yet…

“We’ve seen a few characteristics with your baby and would like to proceed with genetic testing.”

…umm…you mean my beautiful little girl that I’ve barely gotten to hold yet?

“Oh…I see you have company. Are you ok with me talking about this in front of them?”

…a little too late, don’t you think?

Let me pause here to say that our room was full of friends from our church community group. Thankfully those were my closest and dearest friends, so if anyone other than family were to be with me at that moment I’d want it to be them. Still… I’m pretty sure she just broke a few patient confidentiality regulations here.

So what went from an amazing delivery to a deep dark hole of uncertainty had begun. We ended up spending a month with Kayce in the NICU. We attempted to avoid that one nurse as much as possible (mostly for her own safety, I think my husband was about to blow a gasket every time he saw her). We became extremely close to our nurses in the NICU who we still consider family to this very day. They sat with me all day while Drew was at work. They held me when I sobbed and told them that I couldn’t even muster the courage to hold my daughter. These were dark, dark days.

All the plans I had made. All the things I had purchased. They were now mostly obsolete. Or at least that’s how I felt.

Two weeks after she was born, we went into a room with our parents and an amazing nurse/friend. The geneticist came in with the test results and told us that we were lucky. We were lucky because out of many genetic syndromes our daughter could have had she had Wolf-Hirschhorn Syndrome. Don’t get me wrong here. It’s a syndrome that causes severe developmental delays, epilepsy, issues with speech and a host of other things. But we were lucky. Most kids with WHS are extremely loving and happy children. And the spectrum is so great/unknown that we were going to live life waiting for Kayce to show us what she would/wouldn’t do. We talked for probably an hour about family history, which was clear of any special needs, and found out that 80% of the occurrences of WHS are random. It is also made up of 80% girls. Not much is known about WHS and it is extremely rare. We weren’t sure we’d ever get the chance to meet another child like Kayce. Again…we were wrong. Thank God we were wrong.

We went back into the NICU and tried to digest the news. I quickly began to learn what it meant to live day by day. Step by step. There were no more plans. I had no idea what I was doing. We left the NICU when Kayce was 4 weeks old and had finally hit 5 lbs. And the journey began.

God knows our hearts. He knows our limitations and He also knows our potential. While I was in labor, Oceans by Hillsong United was playing in the background. It took on a whole new meaning the second I held my daughter. We really are lucky. Wherever Kayce goes, she shines light on everyone around her. You can’t help but smile when you meet her, and as she immediately reaches out for you to hold her. She doesn’t know a stranger. She loves unconditionally. We’ve learned to celebrate every little thing that she does. She’s made each of us better and stronger.

Although it’s going to take a lot longer for her to fit into some of those clothes I bought…Although we might not use all the flash cards and toys…Although all my well-made plans flew out the window and somewhere far beyond…I’m happy. I can’t promise that I won’t completely stop making plans. But I do know intimately that God is the ultimate plan maker and that His plans are a whole lot better than mine could ever be.

We went from a normal family to now having a child with special needs. Something I knew nothing about. But God knew, and He had started putting all the puzzle pieces into place… But that is for another day.

Ticia

 

 

4 Comments

  1. Thank you for these words. We had a daughter Sadie in 2013 with Wolf Hirschhorn and due to her severe issues with her Kidneys, we lost her 4 months later. But like you i was a planner and learned to throw those out the window. So happy to see your sweet baby.

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    1. Thank you, Terra! I’m so sorry about your sweet Sadie. WHS takes on so many forms in different kids. We’ve been lucky with Kayce and are aware that it’s not always the case. Sending love to you and your family!

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  2. Brought to tears reliving our journey with our precious Kayce. I’d like to add (because she won’t) that Ticia showed such strengh and grace during those first difficult days of learning of Kayce’s diagnosis. Drew, my son, displayed courage, compassion and his father/ husband insticnts immediately kicked in to protect ” his girls”. I have never been more proud of him. We feel so blessed that God has given us this extra special little girl. She is everything we as Christians strive to be. Kayce is always kind and smiles no matter who you are or what you have. She looks you in the eyes and the love flows from her causing your heart to swell and overflow. She is beautiful, but she doesn’t know it. She radiates peace, unconditional love and the joy you feel just by being in her presence lasts well after she is sound asleep. I thank God everyday for this gift called Kayce.

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