Thursday, May 23, 2013

3 weeks to go... Lord give us strength!

With Ella's next open heart surgery approaching faster then I can even fathom (3 weeks from today), I find myself having the same feelings I felt as her birth and first set of surgeries approached. I just keep trying to get Jon to take the three of us far far far away, somewhere where all this just isn't real. If only that place existed this side of heaven. I can't even put into words the pure joy that I get being around Ella. The other day Ella randomly walked up to me, grabbed my face with both of her hands and with her face a few inches from mine she said, "You're the greatest!" and then she gave me a huge kiss on my cheek. This world is a brighter place because of her sunshine.

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.


  1. I'm offering a prayer of thanksgiving today for you all. God certainly chose the most perfect parents for Ella. You have done an amazing job making tough decisions with which I can't even fathom being faced. The three of you are all clearly perfect gifts.

  2. Beautifully written. Prayers for all of you.

  3. Amy, such wisdom flows from your words, for you, too, have made tremendous growth in only two years. With our heart babies like Ella and Emma, we know from the first breath not to take their days for granted but to treasure every one. We know from week 20, pre-delivery, that God has chosen to gift our families with babies who will write their own life stories and who will teach even their doctors a thing or two. What we don't know is how completely and with what joy they will gift our lives. And so they arrive on this earth with lessons to share, gathering people from all walks of life and from around the world to pray together. The Prayer Warriors call for miracles to heal our Lil Heart Warriors. Maybe they don't see as deeply as we families do that the lil ones ARE the "miracles." But we know that's exactly what Ella and Emma are, our gifts from God, to love and treasure every day!
    Love and Prayers from Emma's Nana Jana

  4. What a beautiful and poignant statement. I can't imagine anyone going through this with more grace and wisdom than you. You are such a strong and loving mom. Ella and the whole family will be in my prayers.

  5. My friend's son just had his Fontan Procedure this morning. I know his Mommy feels much of what you have described. This little man is the light their lives and so special to his extended family and church family. We have been praying hard during the months leading up to this day and especially today and will continue through his recovery. I will certainly keep your dear Ella in my prayers. This little guy had complications with his previous surgeries and caths so the anxiety was high leading up to this. Thankfully his surgery is over and he did great. He is recovering as I type and while that is tough, he is doing so well. I pray for the same experience for your Ella. I am sure God will hold her tightly and be with you both as you support her. She is great hands. Love and prayers to you all.

  6. Amy, you are tearing at my heart. God bless you and your family and that precious angel of yours. Thank you for writing to all of us on how you feel. We WANT to share the burden. What else can we do as a group of people who don't even know each other or in my case don't even know you at all. I found your precious angel through Hope For Emma's Heart. Ella and Emma. My oh my. What precious little girls. We as "blog followers" are connected in a wonderful way. PRAYERS to all of you and as the day approaches, keep us informed so we can pray a little harder.

  7. Amy praying hard for your family. This post both cry tears of joy and pain. For any little precious child to go through all she has gone through hurts my heart. But she has a wonderful mommy. There is no one better foe that role then you. Ella has touched so many lives and is such a blessing. She has touched my life and I havent met her. But I enjoy watching her grow from pictures and post. You are AMAZING!
    Whitney Jackson

  8. Praying so much for you! I know I was feeling very similar things for 2 yrs thinking Joey almost died and he was still sick from the trauma...just a little but nothing compared to you. Also, I had to let Jim go in plastic surgery when he was a baby. So very hard. I will pray this month. What needs do yal have? Love you both!!! I mean three!

  9. Thank you so much for sharing a little bit of Ella with us. I look forward to reading many many many more updates on how well she is doing.
    This post had me in tears. It was so beautifully put and clear to read how straight from the heart it was.
    Again, thank you for sharing with us. It is clear to see all the amazing love you are all surrounded by, and the endless prayers and love.

    Sending amazing positive energy and light from Canada!

  10. My heart breaks for your family as I read this post. I can't imagine what you face every day. I know God has his hand on Ella and I pray that he continues to lend her to us for YEARS to come. This little girl and her mommy and daddy have taught me so much as I have followed her blog. Prayers in Jesus name for Ella Dawn.
    - Susan

  11. Amy and Jon,

    You can be sure that our family is and will be praying for little Ella. We stand amazed at our most gracious Father who does all this well. All of this has been ordained from the foundations of the earth and all that God has planned will stand. There is such comfort in knowing that we can trust the One who loves us more than we could ever imagine and will walk with us through all of the trials this life will bring. We watched a video of what this surgery will entail and we were all amazed at how God has given doctors the knowledge and skill needed to make changes to a heart that doesn't work the way it should. It was truly amazing to watch.

    I am so thankful for you and Jon and the wisdom that you seek daily. You two are very mature and God is doing a work in your lives that will impact all of eternity. Keep seeking and clinging to God....he will never disappoint you.

    Please let us know what we can do to help you. You most certainly have our prayers, but we would love to help with any physical needs as well. We are here for you if you need anything.

    The Cole Family

  12. Keeping you in our prayers!! May our Lord, God bless u with his grace!!

  13. I am Sara Winters Burk's Aunt Kathy from Minnesota - I follow your blog always and pray for you as you face surgery tomorrow. Our oldest daughter was very ill as a ten month old with hemolytic uremia but God did a miracle in her life and now she is almost 40 years old - married and living in Denver. I pray that God will give you many more years together. God bless you and keep you and make His face to shine upon you and give you peace.


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