10 responses

  1. Sharon Muza, New Moon Birth
    October 20, 2012

    I guess I am a “real” heart mom, as my oldest daughter had full blown open heart surgery at 13 1/2 (very old to be diagnosed with a congenital heart defect, her pediatrician saved her life at a well child check up!) I remember sitting in Children’s in Seattle, while she was in surgery, and receiving pages that kept me updated, at each step, and one page said, “her heart is stopped and she is on the heart and lung machine” I almost couldn’t breath. How could my daughter be “alive” and not have a beating heart. It was paralyzing to me. So scary! So unimaginable. Does this mean you are dead, until your heart beats again?

    And you know what, when your child is sick, it sucks! Big surgery, little surgery, unknowns, major decisions, uncertainty, fear, confusion, anger, grief. It doesn’t matter what the situation is, as a parent, it has an emotional (and physical and financial) cost. And that cost is huge. I am so sorry that your sweet boy has had so many struggles. I hope that the way becomes clear and fixes happen. But remember, this baby once slept inside, listening to your heartbeat! so you will always be a “real” heart mom!

    • bakersdozenandapolloxiv
      October 21, 2012

      Crazy! I remember reading her story, but can you remind me what her heart defect was? Back when I read it the first time I was much *less* educated about CHD than I am now.

  2. Aaron Stevens
    October 20, 2012

    I got teary eyed reading that, I am praying for your family, and I know you hear that line a lot. I’m not sayin that as a bad thing, cos I know that God has socreign controll over all of this, and i know you know this too, but I just wish there was another way, a material way the I could help you guys, but can’t at this stage, praying is all I can do at this time,
    Been keeping Apollo in mind through this last week, praying that he will be healthy in time for the flight to Texas, but hey maybe going to Texas like he is may help his case to the Texas doctors to really see how serious this is affecting him.
    I wish I could be there with you guys, but know you are in my thoughts and prayers.

  3. Adriana
    October 20, 2012

    I know exactly how you feel. Even though you feel alone, you aren’t. You are connnected to all of the heart moms, in pain, in love, in prayer and in strength. More prayers going to Apollo. Be strong for him.

  4. Ruth Einfeld
    October 20, 2012

    Renee, I am praying for you and Apollo and your family as you navigate this unbelievable, unimagined journey. Just remember that even in your loneliest moments, you are not alone, but being held by your loving Heavenly Father. I know, I was there…for weeks on end.

  5. Nicole
    October 20, 2012

    I’m speechless. Yet praying earnestly for your little guy!

  6. Lindsay
    October 20, 2012

    I’m so sorry for your lonliness…sorry for it all :(

  7. Michele P
    October 21, 2012

    I cannot imagine how alone you feel, but can I please reassure you that you are never alone?! The Lord is holding you and your familiy in His hands, and so many are covering you in prayer. This post made my heart ache for you! I am sorry Apollo is sick- praying that he is feeling better soon. You walk a tough road, Renee, but I think you are amazing woman of strength, even if don’t feel that some days! Hugs from Virginia, may you have a blessed day!

  8. Marie
    October 21, 2012

    Chronic illness is a lonely isolated feeling that those with chronic illness or live with those with chronic illness totally understand. We say the same words as everyone else, “I’m sorry. My heart hurts for you. I’m praying.”, but those words carry some different meaning. We understand the ups and downs of the emotional roller coaster of the day in and day out, of having “good days”, but the good days are never without shadow over them. The path is dusty and hard. Please know that we are ever cheering you on, loving you, praying for you, hurting for you, rejoicing with you.

  9. Judy Small
    October 21, 2012

    Renee, this post made me just ache for you. I have no answers…just prayers. I wish I could “do” more, but I know that God can do much more than I can in this case, so I will continue to lift you up to Him.

    If there is anything practical that I *can* do, I hope you will make that known so I (and others) can help carry your burden.

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