The truth is, my heart is breaking, because even though we've known all along that if we were blessed with her this long, we would face this next surgery, but it doesn't make it easier. Yes, kids survive this surgery all the time, in fact we expect Ella to survive, that being said this is still a MAJOR open heart surgery, and things sometimes just go wrong. The complications after the surgery are also terrifying. Not to mention the life expectancy is significantly less then we would like after this surgery, they say typically 30 to 40 years max. Of course with Ella having a combination of heart defects and the oldest survivor only being around 9 years old, we really don't know what to expect.
I've said it before and I'll say it again, there is a very fine line between living in fear and living in denial. I am constantly reminded of how sick my sunshine is, by her body language, the dusky blue tint to her skin and nails, the being out of breath when she tries to play... all of it, all day everyday reminds me of our reality. I know she is terminally ill, that is an indescribable feeling, to know you are supposed to outlive your own child, it's a feeling that if thought about for more then a few moments at a time can in every way destroy you. It can steal the time you have together, and I refuse to let that happen.
My time with Ella is full, it is happy, there are tears of sadness and tears of joy, there are snuggles and dress up, dancing and make believe. There are movies and story times, snacks, and potty breaks, laughter, and picture taking. There is memorizing and cherishing, there are prayers and dreams, there is hope for a future and reminders to live in the now, there are messes and clean up songs, there is swinging and hide and seek, there is pink laundry and messy hair. There are things in sets of 3 that make me smile, like three toothbrushes, one just the right size for her baby teeth, now alongside the two big ones, somehow completing what would now look bare as two. There are tiny brightly colored bowls and spoons amongst the white and black dishes that grace the sink and dishwasher. There is a special seat in the back of the car that seems to fit, there is a big white bed in the room off the hall with a special chandelier that we leave on dim all night. We get to wake up every morning to sounds that remind us of our miracle and we watch her sleep peacefully at night and she looks just like an angel. We have so much love in this house that I'm sure at times I will burst, being her mom is such a gift. You see, all these words don't even come close to describing how amazing life is with this special miracle.
Ella is an inspiration to be better, she is brave as I fear the future, I am brave when she is scared, because that's what being a mommy is all about. To hold your baby girl after a nightmare, to hold her tight after a shot, to give her a bubble bath and popsicle after she gets sick, to make hospital waiting rooms fun, to hold a shaking baby down for her own good as she screams "no thank you" and stares in your eyes with questions and fear. To see her paralyzed and sedated on a ventilator, chest open and heart beating inside. To see tears slide down her cheeks out of closed eyes even though she can't move. The constant questions of wondering if you did everything right, wanting to do something, anything... but being helpless. Watching as they give her "poison" to save her life, or possibly take it, the last resort as she is slipping away in the night. Long days and sleepless nights in hospital rooms. Standing on the sidelines as friends and family continue life as normal without the constant pain you face, realizing you're not the same person anymore. You know they can't understand, yet wishing they could. Day after day in the house unable to go out into public at the risk of your baby getting sick. I sometimes think that's why when God made me, He added a little bit of "homebody" and "germaphobe" then He lead me to a husband that is supper supportive and gave him a talent for self motivation and loads of common sense to make working for himself possible, creating a flexible work schedule and a lack of exposure to people. Then He created Ella, perfect and beautiful, kind and funny, smart and strong. Someone you can spend 3 years straight with nearly 24/7 and still not need or want a break. I still miss her when she is sleeping... you see God knows what He's doing, I'm so thankful.
This life is harder then I could put into words, but I believe because it's so hard, it makes all the wonderful parts even better. I will never take for granted the simple things like little pink laundry, and a tiny tooth brush, because I know, someday, far before I'm ready, those things will begin to disappear whether it's because by God's grace she grows up, or because He decides to take her home. For me, I choose to love Ella with all that I have, I won't hold back my love for someone that will be taken because I would miss out on the most amazing human on this planet. She shows me love in ways no one can comprehend, every smile reminds me why we fight for her, every laugh has come because of the pain she has endured. So as we begin to prepare for this next hospital stay, I will remind myself that it is for her greater good and that God is in control whatever the outcome. I may have to say it a million times an hour, but I will speak truth to my soul.
I feel so blessed to have Ella, I can't even describe it. Truly my life without her in it doesn't make since to me, I can't even fathom it. So much to fear, so much to treasure, so many tears. If these are the last few weeks we have with Ella I pray she knows more then ever just how much we love her. Hang in there baby girl, fight, show HLHS/IAS just how big your God is, mommy and daddy want to fight this for you, it seems too much to put on a 2 year old for the 4th time, but we will do everything we can to help you. I know you won't understand why you will be hurting so bad, I know you will feel so very sick, I know you may think we let you down, but baby our hearts are hurting too, we are so sorry. Oh, Lord, please give us strength.