wave on wave...

Monday came and went with lots of rain outside and lots of sleeping for Miss Courtney and her Mama inside. We both needed it. Badly. 

So we took over the sofa, hot coffee at the ready for Mama and extra snuggles for my sweetie.  We watched Hallmark movies, Castle re-runs, listened to "The Secret Garden" on the iPod and napped when the ZZzzz's attacked. I gotta say it was not a bad way to spend the day. 

Miss Courtney is now weighing in at 77 pounds. It's hard to watch. We changed formulas and that seemed to help her with some gastro distress issues she was struggling with. She is much more comfortable and smiling again. That is such a gift to us right now. 

Comfort and smiles are the best. 

Once I put Miss Court to bed, Jerry and I watched a few episodes of NCIS on DvD and then we headed to bed. Me? I tried to sleep, I did. I just didn't have it in me. After an hours of counting sheep, praying, counting sheep again and again, I quietly came downstairs. 

I headed into Miss Courtney's room and just watched my girl sleep peacefully. Sometimes her innocent beauty just takes my breath away. It doesn't come from me, it comes from God. That peace and that sweetness that she radiates every moment of every day. I stood there and began to have a panic attack. 

My heart started beating and I was sweating and my hands shaking. I just could not control it. I was looking at my sweet girl knowing that there will be a day when I come into this room and she will not be here. It just hit me square in the heart and I lost it. I grabbed a pillow from her bed and sat on the floor and wept into it. 

Grief comes wave on wave out of nowhere these days. I love my babies. I love them with all I have. The thought of not seeing Courtney's buck toothed smile or hearing her trucker laugh just breaks me. I don't know how I will survive without my Courtney with me. 

The very thought takes my breath away. This long goodbye may be the end of me. Truly. 


I stayed on that floor for hours going over memory after memory in my head. The day I found out I was pregnant with Court after we had miscarried our second baby. The day we found out she was a girl. The day we chose her name. The day she was born and we got to meet her, hold her and take her home. 

They let us take this beautiful creature home. US? For reelz? The day she had her first siezure. The day of her baptism. Her first ER visit, her first admit, her first allergic reaction. The day they told us she would not survive her first birthday. Her third birthday. Her seventh birthday. 

The day she took her first "steps" in her gait trainer at the age of six. The day she said "Maaa" for the first time. So many memories. So many GOOD memories to outweigh the bad. We have been so blessed by her life. This child has changed Jerry, Jonathan and I at our very core. She has changed how we look at the world and all the awesome souls in it. 

Courtney teaches us everyday what the "dignity of life" actually means. 



She is "seen" as perfect and unique in our eyes and in God's. 

She is honored and her dignity remains intact with every diaper change, chair snuggle time, story read, song sung, every tube feeding given, every doctors visit, late night holding, reassurance during a seizure and massage and bath given. 


With waves and waves of love. 

Now and forever. Here or in Heaven. 

Always baby girl. Always. 

"We humbly thank you for any help paying Courtney's extensive medical bills 
and taking care of her final arrangements**

We Love the Lenaburgs - Team Courtney Fundraiser