I have just been watching a video on You-tube about a little girl (Gabby) who recently died after open heart surgery. Her mother is on one of the Down Syndrome forums I frequent. The song in the background is You're Amazing (or something like that!)
I have been in tears a lot lately. I am so scared about what is going on with Samara's lung, and with the bronchoscopy she has to have on Wednesday. The bronch isn't in itself a major surgery. It's about as minor as they come. But the only history of anaesthetic that Samara has isn't the best. She desatted into the 20's and caused a pretty big stir in the ICN. Also, there is the possiblility of them finding something that means further surgery on her lung. And that is a terrifying thought.
Young Gabby was such an adorable little girl. And watching the video and pictures of her, I couldn't help thinking that they had no idea at the time that these images would be all they would have left of their little baby. And, I am scared that we could find ourselves just like them. I am terrified of letting go. Of trusting God. No matter what.
I just want to pick her up out of her bed, and hug her so tight. I never want to let her go. She may have only been with us a short time so far, but I cannot ever imagine life without her. The last 16 months since she was born (and the months of anxiety before she was born) have been a massive rollercoaster. There have been high highs, and low lows. And I would go through them all again to have her in our lives. We have been so blessed, that I am scared we are running out of blessings!
Totally illogical. And there have certainly been some hard times associated with her diagnosis.
But I want the whole world to know, that Samara is one incredibly special little girl. She is 'So Amazing', and I love her so much that my heart is overflowing. Sometimes, we have to be faced with what the world would term as 'not so perfect', to realise what true perfection is. She has been fearfully and WONDERFULLY made. And that extra chromosome doesn't take away from that. If anything, it adds to it.