Courage, dear heart

our ridiculous countdown app

Well, here we are with officially less than one month to go before Louisa's Big. Bad. Fontan. Pretty much everything in her life so far has been leading up to this point. The research dollars are put into trying to keep single ventricle kids alive in the critical stages before the Fontan. The first 2 surgeries she had were paving the way for the Fontan. During the Fontan, they'll stop her heart again, cool her body to something like an insane 60 degrees, and slow her brain function so they can complete the process of replacing the pumping function of her missing ventricle with a passive circulation network that sends the blood directly from her body to her lungs. If we were talking about college basketball, this would be the Big Dance for Louisa. This is where the blue babies are supposed to turn pink. Her oxygen saturation has been dropping and is now running in the low 80s or high 70s, hopefully we'll be up somewhere in the 90s when we're done here. But "post-Fontan" life is kind of a weird black hole where we hope medicine will catch up in her lifetime to deal with the serious complications that come with living long-term in the Fontan circulation. Her one ventricle will get tired of doing all the work on its own and her other organs with start to suffer the consequences of blood backing up in the system. But that's getting way ahead of the game, which is a problem I consistently struggle with... 

Right now we have 28 more days to live in the pre-Fontan world. I've placed Louisa in the basket and pushed her out into the roaring river before, but she was just a cute little cuddly blob back then. Now she's so much more fully my Louisa. She says, "Mama down?" and points to the pillow with her blue little finger tip when she wants me to lay down next to her. She wants her dad to throw her "up high" when he gets home from work. She wreaks havoc on Kelvin's puzzles and the little girls' tea parties and she cuddles on the couch with the big kids late in the evening. So basically I'm hemorrhaging anxiety (possible??) at the thought of going back and it's building everyday. Some days it comes in handy like yesterday when I planned all the dinners for the next four weeks until surgery. And some days it sucker punches me and I end up trying to hold my guts in and crying on the little stool behind my closet door. I've been shutting down, I've been lashing out, and I've had a few minor panic attacks at Meijer noticing expiration dates that are after the Fontan. On one hand there are millions of unknowns and on the other hand is the hard reality of what I DO know -- I've been in that stupid consultation room waiting for them to come in and tell me if she's still hanging on or not. The memories and fears press in as April 18 inches closer on the calendar. I think about all the heart moms who haven't made it this far in the journey and who would give anything to feel this pre-surgery anxiety right now and it just hurts even more. It is incredibly hard to admit that you have absolutely no control of what goes on in the operating room where life and death happen every day. I grasp at straws and think that if I at least UNDERSTAND what's happening in there and if I have all the right questions to ask and know what all the numbers on the monitor mean I'll have just a tiny bit of control. So I read and I research and I join the facebook groups and it never makes me feel any better because, surprise! I still have no control. I am forced to go back and cling to the one who actually IS in control and who I know will meet me in the furnace when I have to dive back in head first.  I remember reading these verses from Isaiah 46 over and over before Louisa was born:

"Remember this and stand firm... remember the former things of old; for I am God, and there is no other; I am God, and there is none like me, declaring the end from the beginning and from ancient times things not yet done, saying, 'My counsel shall stand, and I will accomplish all my purpose,'...I have spoken, and I will bring it to pass; I have purposed, and I will do it."

I love my Louisa Joy so much, but there is one who loves her more. And she is invincible until His good purpose declares her not to be. She is a covenant child and the reality is that I cannot lose her. My fear of death right now threatens to consume me at times -- I'll be walking through Target looking for an Easter dress and all of a sudden it's a funeral dress. But what a week it is to remember that no matter what, it doesn't stay Friday forever -- Sunday is right around the corner where death is dead. "Death is swallowed up in victory. O death, where is your victory? O death, where is your sting?" And all of my fears will be dead too. I feel weak and scared, but I have been praying for courage.

My cousin made this and gave it to me this morning... I'm so thankful for saints like her who show me courage and give me courage:

 The quote comes from The Voyage of the Dawn Treader:

Drinian's hand shook on the tiller and a line of cold sweat ran down his face. The same idea was occurring to everyone on board. “We shall never get out, never get out,” moaned the rowers. “He's steering us wrong. We're going round and round in circles. We shall never get out.” The stranger, who had been lying in a huddled heap on the deck, sat up and burst out into a horrible screaming laugh. 

“Never get out!” he yelled. “That's it. Of course. We shall never get out. What a fool I was to have thought they would let me go as easily as that. No, no, we shall never get out.” 

Lucy leant her head on the edge of the fighting top and whispered, “Aslan, Aslan, if ever you loved us at all, send us help now.” The darkness did not grow any less, but she began to feel a little—a very, very little—better. “After all, nothing has really happened to us yet,” she thought. 

“Look!” cried Rynelf's voice hoarsely from the bows. There was a tiny speck of light ahead, and while they watched a broad beam of light fell from it upon the ship. It did not alter the surrounding darkness, but the whole ship was lit up as if by searchlight. Caspian blinked, stared round, saw the faces of his companions all with wild, fixed expressions. Everyone was staring in the same direction: behind everyone lay his black, sharply-edged shadow. 

Lucy looked along the beam and presently saw something in it. At first it looked like a cross, then it looked like an aeroplane, then it looked like a kite, and at last with a whirring of wings it was right overhead and was an albatross. It circled three times round the mast and then perched for an instant on the crest of the gilded dragon at the prow. It called out in a strong sweet voice what seemed to be words though no one understood them. After that it spread its wings, rose, and began to fly slowly ahead, bearing a little to starboard. Drinian steered after it not doubting that it offered good guidance. But no one except Lucy knew that as it circled the mast it had whispered to her, “Courage, dear heart,” and the voice, she felt sure, was Aslan's, and with the voice a delicious smell breathed in her face. 

In a few moments the darkness turned into a greyness ahead, and then, almost before they dared to begin hoping, they had shot out into the sunlight and were in the warm, blue world again. And all at once everybody realized that there was nothing to be afraid of and never had been. They blinked their eyes and looked about them. The brightness of the ship herself astonished them: they had half expected to find that the darkness would cling to the white and the green and the gold in the form of some grime or scum. And then first one, and then another, began laughing.

                                                        

Courage, dear heart.