Now, for the hard stuff

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Five minutes ago Poppy’s nose started running. I just sank into the wall and slid down into a small onslaught of silent tears and horrific heart-pain.

I am so tired inside. My body can take quite a beating and still kick without a noticeable lag… But my heart is drooping and dragging along. Two nights ago Poppy woke from sleeping with piercing shrieks of pain… It lasted about 6 hours with obvious peaks every few minutes. It took everything left in me to get us through the night. She is my daughter. She is 20 lbs of pure love and absolute light. I know I am a broken record – but this is not fair.

And then there is the ever-present guilt. So many mothers out there have children with ailments and prognoses far worse than hers…

But even the thought of such pain makes my chest collapse.

I am really ashamed of the thoughts that bash around inside my head. I know that I am intelligent enough to grasp the severity of this syndrome and also see the blessing in the undeniable fact that there are GROWN men and women out there living normal lives with this very syndrome – But I also see (three times this week) mothers finding their precious children

Gone.

I sob with the thought.

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Every single second of every single day I am afraid that she will stop breathing. I feel imprisoned. I feel tricked, betrayed, forgotten.

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6 thoughts on “Now, for the hard stuff

  1. I wish I was there and could give you a big hug and make it all go away. I know I can’t. I don’t have an answer for you, however I do know that GOD has not forgotten you, Kieran or Poppy. It’s very hard to keep the Faith when faced with such horrific challenges and none of it makes sense.

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  2. This is so hard my dear Noelle. I know it must test every bit of your strength, & then come back to see if you have anymore strength to test. Miss Poppy is so little, so strong, so beautiful, & yet her life has been so hard with hardship in the future. Yet, with all of the trials, the deep cost to you all, you are one amazing family rich in real love. You are the only mom that could walk with little miss through all of this; I am convinced of this. God knew what mommy Poppy needed & He also knew what sweet baby you needed. Please know that there are many many people praying for you all, loving you all, & being taught valuable lessons about true love by watching your story unfold. I love you my beautiful friend & you are constantly in my heart & prayers! ❤

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  3. Noelle, I am another Alma mama and have been following your story through your blog these past months. They feel like small things, but I wanted to let you know that I have been holding you and Poppy in the light and opening my heart to carry a little (just a fraction, I know) of the heaviness you feel. And I shared about your Christmas tree sale with local friends. Please share if there are other particular ways that I can be a support. Sending strength and rest your way.

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  4. My nine month old is healthy and happy, but I still have visions of something horrific happening to her. She is this amazing light in my life, so I think it’s just my worst fears coming to the surface that somehow I could lose her, or her lose me, or some kind of harm coming to her. To love someone so much can be scary. One day at a time. Kiss, smell, and snuggle that little bundle.

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  5. I am working the night shift and I had to go back to the start and read her whole story. Your words “Every single second of every single day I am afraid that she will stop breathing. I feel imprisoned. I feel tricked, betrayed, forgotten”. I can’t tell you how many times I watched my sister feel this. Still feel this, when she tries to go on vacation, out of state or even out of town, and she can’t turn her phone off, in case her son needs her. Needs her now because of love and normal needs of what my 12 year old would need, not for the health reasons. It changes the needs that you both will go through. Its so wrong and God did not do this to Poppy, it just happened, but he did put you in charge. If ever you need any help please know we are here for you, I know my sister would be there in a second for you and help you through any of it. Are you kidding, we would love to hold that beautiful baby of yours and your son is an amazing brother. My nephew has a brother 3 years older, the same care, he cares for him. As her sister and Aunt I just now feel comfortable turning my own cell phone off when sleeping, fear she needs me, even if its to just say he has a fever and taking him in for a look.

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