On to the next dreaded day.......

As if the birthday wasn't bad enough, I now get to dread D-Day. That's death date to you. This time last year Isabella was just getting over her first big pneumonia and we were all breathing a huge sigh of relief. I had spent two long weeks holding her limp, weak body all day and stayed up with her all night. Yes, for two weeks I maybe slept 24 hours TOTAL, while newly pregnant. I'm feeling tired just remembering it. It was rough.....to say the least. As a result I also came down with a wicked case of bronchitis. Laying in bed all night, holding your sick baby will do that to you. I remember laying in Jackson's bed with her, watching her fight for every breath. Adjusting and re-adjusting her nasal cannula, suctioning her out with that awful machine and praying. Lots of praying. We ran her through three antibiotics in those two weeks. Yes three. I gave her morphine for the first time and I was so terrified.

Our hospice nurse had walked me through it, but since she only needed the morphine at night to slow her respirations down, I had to do it alone. Solo. All by myself. I remember giving her the first dose, saying a quick prayer and watching the pulse ox with wide, frozen eyes for one hour straight without flinching. Waiting. Watching. Waiting. Watching. You get the idea. I watched her heart rate drop pretty dramatically at first....held my breath and it maintained. Praise Jesus! She would not die because of the drug I gave her.......ohthankyouthankyouthankyou. I miss her. Even during those nights, I miss her. I know she wouldn't want to relive that moment of time, but I would if it's all I could have. In a minute I'd do again. I poured every ounce of myself into her and I wouldn't change a damn thing.

I had no idea as Isabella turned that corner and suddenly beat the pneumonia that in a month I would bury her. Just as I had no idea as I gave birth to her, that I would bury her 14 months later. That this disorder, this monster would tear our lives apart. Have I ever mentioned that I really hate, hate, hate Lissencephaly? I do.

It's funny because after the pneumonia Isabella did so much better. It was like a cloud had been lifted, she was so alert and happy and clear. She even ate her last month of life and drank juice! She drank juice I tell you! And I am happy to tell you she ate one single STRAWBERRY. Yes siree she did! (I'm telling you I was so excited the afternoon she ate a strawberry I just about called CNN, but decided it wasn't *that* major....almost, but not quite.)

I seem to get more and more distraught about her death as time passes and that puzzles me. I don't know if that is "normal" or whatever, but I think it has something to do with the fact that as time passes I begin to forget her suffering. I just remember her sweet face, her smell and holding her. Oh and of course feeding her....I spent many hours doing that. So I think my heart is so sad because I don't remember her daily seizures and the breathing and the arching and the and the and the. Her breathing was awful....truly terrible. I couldn't take her anywhere without someone asking "is she OK?" "Does she always breathe like that?" "Oh my! Is she sick??" (as they shield their kids as to avoid her disease) No. That's just how she sounded. Everyday. Awful I know. Actually I don't fracking know. I'll probably never know how she felt. What it was like for her. I probably won't suffer a fraction of what she endured on this earth. My sweet angel, my baby girl.

My mind knows it was for the best......my heart just can't figure it out. It's slower to grasp things I guess. My heart wants her back so badly......even despite her suffering. My heart is terribly selfish and would take her back and make her continue to suffer this very instant just so my heart could love her again. My heart is missing a big piece right now, and can you blame my heart for wanting that piece back? My heart just doesn't want to believe that the missing piece will not be put back for a very long time. My heart is stubborn and just won't let go.

I love you and miss you sweet Isabella and I cannot believe it's been almost a whole year since I have held you and kissed you and whispered "goodnight sweet angel" as I laid you down to sleep in your beautiful pink haven. Every part of me aches for you and misses you. You were an amazing little girl and you did so much for so many in your short life. Your spirit lives on in myself, your daddy and your amazing brothers. We will never forget you.........