A year ago today, we headed to the ER to see what was causing you so much pain, sleepless nights, and awful days. We were maxing you out on rescue meds regularly. We had multiple calls with your doctors each day and when they told us that we were maxed out on doses, we knew we were headed in the direction of an admission. We just weren’t expecting one as early as Christmas Eve.
We could tell the ER doctors were grasping at straws. Your bloodwork came back normal so they were wondering if your ovaries had twisted - a very rare possibility but one to rule out all the same. The ultrasound tech was looking to see if that happened but she couldn’t even find your ovaries. We were sent back to our ER room just to be sent again to Ultrasound to have another tech look for them…and still no success.
They found the same kidney stones we had discovered before but they were still non-obstructive so they didn’t think they could be the cause your acute pain.
They saw some levels of constipation on your X-ray and wanted us to do a clear out. Your doctor had already just given us instruction to do an enema that morning at home to see if that was the cause of your pain…only we had to do a second one as well because you didn’t respond to the first. I hated that morning so much.
Enemas and suppositories were becoming a regular part of your life. I hated them so much because I knew you loathed those things. It felt so awful to have to do something “for” you that I knew caused you so much cramping and discomfort. We would hold you so tight after the enemas to show you how much we loved you and just wanted you to poop and feel better. I hope you knew that.
Today, we don’t have to go to the hospital. We don’t have to worry about enemas. Your doctors don’t need to be called. We don’t have to administer your meds. There are no syringes to be cleaned or put away. We don’t have to blend your food. Your fluid intake doesn’t need to be tracked. Your nurses don’t need to be updated on the latest doctors orders. The shows on your iPad don’t need to be changed 1,238,582 times.
We also don’t get to hold you. We don’t get to gaze into your eyes. We don’t get to hold your hand. Your sweet but sometimes powerful punches don’t need to be diverted. The iPad is off. The house isn’t filled with Little Baby Bum songs. We don’t get to hear your squeals. Your giggles are only heard in heaven.
A part of me is trying to reassure myself that this Christmas will be so much better - you’re forever separated from pain and forever immersed in joy, we can do “normal” family things without thinking about an admission, without worrying about you anymore…
But my heart…my heart can’t make sense of a family that can never be fully together again. There are no more “My whole heart in a photo,” pictures anymore…because you’ll always be in heaven. My heart can’t feel joy today because we’re separated. My heart grieves your last Christmas Eve…heck, the entirety of your short almost 4 years. I wish things were so different. I wish you were still here…just in a different body. I wish your healing had happened on earth.
This Christmas Eve, I’ll keep you so close to my heart. I’ll sit in your favourite chair and swing away. I’ll ask Jesus to pass on extra kisses to you from me, your dad, and big sissy. I’ll tickle your sister for you - I know how much you loved to make her laugh. I’ll hug your daddy really good for you- I know how much he misses you.
I know Jesus will hold us real close these next days and I’m so grateful. I know I’m going to have moments and even hours of nonstop tears and it’s all to be expected, I’m sure…our first Christmas without you.
Missing you extra, Sweet Girl.
Mom
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