Wednesday, December 19, 2012

Real life.

I find it hard to write here these days, just so many things go through my head, so many things I want the world to know about my miracle girl, about life as a heart family, about our heart friends. I struggle to find the words to show how it feels, how things are going, and so I usually don't write at all. But I don't want to just not write when I feel inadequate to accurately depict the feelings because despite the fact that this blog has generated a rather large following, I started it as a sick scared pregnant momma 3 years ago as a place to keep track of this road, the good and the bad, the medical updates and the feelings. It's not just for the readers, it's for me and it's for Ella.

Trying to put into words just how much Ella is loved is beyond imposable. The constant fear that hangs over my heart when I look at her is at times crippling. To love a child that is "terminally ill" to know that I'm "supposed" to out live her is just a horribly helpless feeling that never goes away. Learning to live with it is the only hope, the only way to live... Whenever I share the fear of not knowing how long we will have her, I am almost always faced with the response of "nobody is promised tomorrow, no one knows how long they will live, I could die in a car wreck tomorrow" It's not said with intent to hurt me and it is a true statement. But it is in NO way the same thing. As the CT school shooting is fresh on my heart as well as many others I realized that even though I am truly heartbroken for these families, I had a very different reaction then everyone else. Facebook and T.V. interviews were flooded with things like "I am holding my kids a little tighter today", and "not taking my kids for granted today". I realize it's a reality check for everyone, but it didn't change anything about the way I treated, or valued, or even thought about Ella. Why? Because everyday is like this for me. No, not everyday do I hear of 20 children dying, but everyday I see well over 100 fighting for life in the hospital fighting a heart defect. I see death weekly, sometimes multiple in a week. I am slapped in the face over and over and over with the ugly truth that this life is fragile. That unlike all these people that send their children off to school with chances of something going wrong so slim, everyday several times a day I look at my child and think is today the day? Is something going to go wrong? Heart failure, a stroke...etc.? It happens so fast. Will her heart just stop today? I struggle to write this, I hope my heart is clear on this, I am in NO way trying to downplay the suffering of the CT shooting, I am heartbroken along with the rest of America, I'm only saying that when you live with death at the forefront of everyday it changes everything. It changes you. I see an out of breath little girl with blue lips and blue fingers, I give her daily medications twice a day. I have two stethoscopes, I have a pulse oximeter, I have oxygen tanks and blood pressure cuff, I have well over 10 doctors in my phone I talk to a doctor/medical supply company/insurance/pharmacy etc. nearly everyday. It is right in my face all day, everyday.

I have the incredible responsibility to take care of Ella, I have never been more proud of anything than I am of being her mom. She is a wonderful person. She is an angel on earth. Yes, she gets cranky and she isn't always perfect, but I will say with all honesty, I have never ever met a better child in my life. Sometimes I worry that people are tired of the constant bragging, the flood of pictures, and videos. I worry that people think I am exaggerating or only looking through "mom eyes" and like I think my child is perfect because she is mine. Then I realized that it's just not true! She really is that wonderful and who cares what people think about my bragging, I mean let's get real, people don't read this if they haven't fallen in love with her too! She gives me a million hugs a day and I give her about two million. She always says "excuse me, please, thanks mom, may I have____ please, she usually goes to bed great, she keeps her pantie's dry, she has an incredible memory, she is super smart, she is happy most all the time, she doesn't throw fits, she isn't loud, she is funny, she is expressive, she sings, she looooves scripture books without our pushing, she is obedient, she stays clean when she eats, she doesn't touch things we tell her not to, she loves to help and she is good at helping, she knows her boundaries in the house and follows them even when I'm in another room, she is creative, and she is my Sunshine in every way.

Living as a heart mom is hard. Sometimes it just down right sucks. I've realized that I have been in a survival mode just trying to make it through these first few years, until things get back to normal when in reality, this is my new normal. That's a big pill to swallow, it isn't going away or getting better. Ella is one of if not the "least complication" heart babies I have ever heard of, her heart defect is the MOST complicated combination of heart defects you can survive and yet she has not had hardly any complications, this is about as "easy" as our life could possibly be. I have had to learn to come to terms with the fact that we have no clue what her future holds. We have to learn a new life, I will never be the way I was before I had Ella. I will never feel comfortable in a crowd again, I will never feel comfortable at a holiday gathering, a concert, a grocery store, hugging anyone, around any children including my own nieces and nephews, I will never be ready to see Ella closer then 3 ft to someone that I don't know everything about. I will never think about the medical field the same again. How can you love and hate something so much at the same time? They saved her life! They torture her. They help her, they hurt her. She has nightmares after doctor visits. I have nightmares that we lose her. Talk about gut wrenching, that started shortly after her diagnosis and has continued. The smells of certain soaps, certain antibacterial foams, saline... all of it make my heart hurt. Memories flood over me... the first time I heard her cry and they rushed her away, the first time I got to go see her, the first time we thought we lost her, the first time we saw her open chest and saw her heart beating inside, the first tear she had, the first time I held her.... all of it comes flooding in, the good, the bad, the ugly. My heart is every bit as broken as hers.

So it's time to find the new us, the new way of life. To find what it looks like, the boundaries, the ways it's time to step out on faith, the new path. It will be normal for Ella, she won't ever know different. Yes, someday she will realize she is different, that she has a special heart, and I know it will hurt her, but it will be her normal. I know that she will hate it at times, I know that she will face fear. As her mom, I plan to do everything in my power to help prepare her for this big, nasty, cruel world. I want her to see the beauty in it, the kindness, the miracles. So, my life will never be the same, it will be forever changed, it's worth it. I'm just learning to know what that will look like, I'm okay with it. It's hard to accept, but once I have, I know that we will have a wonderful life the three of us and the many many people that love us and respect Ella's heart. Hopefully we will somehow come to embrace the changes, well I guess they aren't changes since we have been this way for the last 3 years, but somehow we have to switch from survival to living full lives this way. What that will look like is really a mystery to me at this point. I am heavily depending on our Father who has always been faithful in leading us. I am always outside my comfort zone and that is hard but good. Ella has life and so I want her to get to live it. That will look different then most, and I will be judged by the boundaries, but as long as we are together and following God's leading, we will survive, and we will live. And despite the ugly comments about her life being horrible, it's just not true. Who is to say different is all bad? We have all day everyday together, laughing, making memories, reading books, who wouldn't want that? If you still aren't convinced that she loves and enjoys life take a few hours and look at the hundreds of pictures of her huge contagious smile that she flashes all day and then tell me I'm making her life miserable and that she is not really living. She just may be loved more then any little girl ever by her mommy and daddy, she is adored by her Creator who saved her life despite the odds, and if having love, happiness, friends (even if from afar), and having hope for eternal life through Christ isn't happiness then we don't want the world's happiness.

God is so faithful, this road is hard, my heart is heavy and my pillows often tear stained, but to feel the love and joy that the Lord gives through Ella is worth every missed event, every tear cried, every weakness my body will face. God's blessings are abundant here and I am so very thankful for the 863 days Ella has already spent on this earth. May God see fit to bless us with many many many more.

Have a Merry Christmas and remember the true reason for the Season! Jesus loves you so dearly! We want to spend eternity with you worshiping Him in heaven! We are so thankful for your prayers!


  1. Wow. This is likely the most honest, heartfelt, gut wrenching, admirable post I have ever read. Your family is in my prayers every single day and I think of you all often. My cousin lost her daughter with HLHS at 4 mos and it was the hardest loss I've ever endured. Ella's story has made me so happy because she has done so incredibly well. She is just perfect. I pray that she has many, many more years on this earth. I pray for healing and health all around. And as her mom, I pray for your strength in dealing with all of the emotions you must endure. Thanks for posting this. I can't begin to imagine how hard it must be to put it in words.

  2. Amy, I've been following your blog almost since day one, when you were pregnant, but I've never commented (and through you, I have also followed Emma, Annabelle, and Bowen). I've read the ups and downs, hurt and cried with you, and rejoiced with you. I've looked at the pictures and watched all of the YouTube videos. Ella is a miracle, but so is the grace with which you and Jon handle these circumstances. I've also seen the criticisms of others. I just want to FINALLY take the opportunity to thank you for sharing your journey and being vulnerable and hopefully encourage you. God knew that you guys are the parents Ella needs. I have a special needs child as well and know the heartache and frustration of uncertainty, of not knowing what kind of life she'll have, of watching her suffer and being unable to change it. But she's 14 now, and she has goals and dreams just like anyone else; perhaps more. She has empathy that others don't have because of what she's been through. And yes, she has anger at her limitations. But she loves Jesus with all her heart and had faith that there is a purpose in her suffering. There is always hope. God is good, all the time.

  3. This is beautiful, Amy. I'm so glad you took the time to write this.

  4. Oh My!!! I have not checked your blog for awhile, and pulled it up tonight and was blown away. Amy, you are just so wonderful to be able to put into words how you feel, as best as possible. I truly believe this is something that is helpful to you and to those who have no idea how life is for you. Sometimes we just need to talk or write, or whatever we can do to cope. No one knows exactly how you feel. We check these blogs and are so excited to see how your sweet angel is doing and forget what is behind the scenes. We don't think of those sleepless nights and fear when something is different with Ella. We don't think about the fact that you have to be so careful ALL THE TIME. We don't think about how you wake up and hurry to her room just to look at her to make sure she is ok. People just sometimes forget all these things. We just want those pictures to come and forget everything else. And I cannot believe people make ignorant comments about what you do. But, you know, it takes all kinds to make this world go around. We found that out ourselves. It is hard to overlook ignorance, but you just have to. God Bless you and your family. You are wonderful parents. Don't ever forget that.

  5. I see a sparkle in those sweet baby angel eyes.

  6. I can't imagine what daily life is like for you all. But, I do know God has blessed Ella with amazing parents! Merry Christmas sweet Ella. I pray for a healthy and wonderful new year for you all <3


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