Thursday, April 21, 2011

A Scary Weekend

There are days when the world of Trisomy 18 weighs very heavily on my shoulders and I wonder how much more of this I can take. This week was full of those days. I was sad and worried, and that is not a good concoction.

I guess it's been in the making. Who am I fooling? It's always in the making. But what took my heart down a road it always wonders if it can handle was reading about angel Brianna's birthday. This precious little girl--oh how I have soaked a tissue over her. I went back and skimmed over some of her mother's blog posts, taking myself back to a time when this was all so new to me. I came across Brenda's post when she was told by Brianna's doctor that she probably had two weeks left with her daughter. The flood gates opened, and my heart broke again.

This breaking. Sure, it's for Brenda and Brianna, but I'd be lying if I said it wasn't for me, too. Please forgive my selfishness, but I took myself to that place where all I had was two weeks. I panicked. I mean, how do you cram a lifetime into those two weeks? Can you give all the love you planned to give? Can you lasso the clock and corral it to slow its pace? Can you create memories so deep that you will always remember a smell, a laugh, a smile?

All of this went through my mind. Then I argued with God. I can't do this. I am not strong enough. And every time these thoughts would sneak into my mind, I would, once again, hear Trust Me.

Then Lily got sick. On Thursday, I took her to the doctor, expecting a UTI. I felt confident that's what it was. She was whining a little, vomiting again, and had a strong-smelling diaper. They checked her urine, but we had to wait until Saturday for the results. Saturday came, and no UTI.

I knew something was wrong. Lily just wasn't herself. She's always smiling and rolling around and making happy noises. Here she was, frowning, very lethargic, and making this whining/moaning sound. Plus, her stool consistency had changed and had a very acidic smell to it.

I couldn't help thinking back to Brianna, and I found myself worrying. Is this the moment when everything comes crashing down? Is this when something inside of Lily begins failing? With Trisomy 18, you just never know.

This worrying made me even sadder. That two-week story kept playing in my head, and it was all I could do not to cry at any given moment.

By Monday morning, Lily seemed worse. More moaning than whining, lots of sleeping, no smiling. I texted our prayer warrior, Mama Ray, and called the doctor for another appointment. Basically, all she could come up with was a stomach virus, but she put in a request for an abdominal scan, which Lily was due for anyway, to check for Wilm's tumors. By the end of the appointment, though, it seemed as if Lily was feeling a little better, but I still didn't want to let my guard down.

But what about these Wilm's tumors? It happens that one of the symptoms of Wilm's tumors is an increased growth on one side of the body (plus general discomfort and malaise, loss of appetite, and vomiting, to name a few). It just so happens that Lily's right leg is a little longer than her left and a little thicker around than her right. Are these symptoms a sign of something we're praying Lily never has to deal with?

Her abdominal scan was today. Hopefully we'll hear back from the doctor tomorrow about the results. Being that tomorrow is Friday, I hope I won't have to wait the weekend, but if I do, Lily sees her nephrologist on Tuesday, and I'll definitely talk to him about this.

I'm happy to say, though, that Lily is back to her old self--smiling, rolling around, and making happy noises. By Monday night, she was all better.

And Mama Ray--you must be SOME prayer warrior! Thank you for your willingness to jump right on it!


  1. Bless you, Jill, and you too, Lily. We know those worries all too well. I'm so glad she's feeling back to her happy self. Hoping you got the results and they looked good. Happy, blessed Easter.

  2. Always thinking and praying for you. So glad to learn that Lily is doing better. With Love Shannon (Oliver and Sylvie's mom)

  3. Bless your heart Jill. I am Annabel Leigh's Meemaw and I still read Brianna's blog even though she is gone.It's real hard to not be scared when you know all of the if's that can happen. I believe Annabel and Lily are both still here because people are faithful to pray for them.But being in a Christian walk you also know that when God is ready for them our time will have ran out.We just have to pray that God's will is done in their lives.I pray for your Lily and also for Annabel Grace and all of the Trisomy babies out there.Will be anxiously waiting for her scan report.Keep the faith...Cynthia

  4. thank you so much for verbalizing what we all experince. There is not much peace and with every illness the little voice, or lack of peace is there. I miss Brianna, I was so blessed to have met her and to have know her parents. Her picture is still on my wall. Praying and so happy your Lily is back to her normal. Thank you for your writings.

  5. This is my first time reading Lily's blog---and wow, how powerful and breathtaking your words are expressing your love and concern for your precious baby girl yet showing how your faith in God being what comforts you! I feel truly blessed to know Lily and her amazing family! I don't know how to be a prayer warrior but I will definitely continue praying for Lily as best as I know how! Allison C