So very close to home…

For years, I have not slept that deep kind of sleep. The sleep that makes a person drool, entertain whimsical dreams, and refuels a tired host.

When I sleep, she stops breathing.

Not in my head. Not in my nightmares. Not fancied up as a worry worth saving. But really, and honestly, and medically stated, stamped, recorded, and delivered. She just stops breathing in her sleep.

The last month has blistered me. Something unseen has rubbed me raw and left me limping. Even still, as I stare at her chest, watch her color, and listen to her gasp and gargle all night long – even awake and actively observing, I sometimes slip into a short sleep that guilts me.

Poppy’s sleep study results came back and they were not good. She still has obstructive and central apnea. She stopped breathing 14 times per hour during the study. She has to stay on the oxygen at night and I am to now navigate surgical options.

I will never understand why I am made to watch my own child suffer. Why I must host the fear of losing her 24 hours a day. I do not choose pain for my children – I have spent my entire adult life creating a safe place for my loves to grow. This world we were tossed into, these clothes of sadness and suffering – none of these fit.

Wednesday, our sweet friend Phoenix with Apert Syndrome, did not wake up. She was a seemingly healthy, 18 month old babe. Phoenix was about to be a big sister, she was reaching milestones, laughing, dancing, and undoubtedly the absolute joy of her loving family.

I learned of Phoenix’s passing early yesterday afternoon – and upon reading the words lost all control of my body for a full few minutes. Paralyzed by fear and with a spirit so heavy and broken that all I could do was shake.

This is not the first time one of our own has slipped silently away.

The Apert family that I have grown into in these last two years is grieving and shaken. These beautiful children come into our lives with HUGE demands and needs and we step up to the task of caring for them extra – every second of every day. It is no small sacrifice. They bring with them so much joy, and so much more sorrow than a mothers heart was made to withstand.

Our thoughts, prayers , and energy is divided among our own children, Phoenix’s family, and the children we have grown to love through support. The community that I turn to is broken and mourning.

As I lay here with Poppy in the wee hours, I am more riddled with anguish than I have ever been. I watch the monitor display her heart-rate and oxygen levels – but it is not enough. I have to feel her breathe. Poppy has been sick for almost an entire month now. The congestion causes serious breathing difficulty. Her heart works harder, her oxygen saturation is lower, her limbs flail and her body is constantly moving to open her airway.

My insides are thinning. The constant waves within crash against my bones. There is an incessant moaning, a hollow wail from my lungs. This is not at all where we were meant to be. Something has gone terribly wrong.




3 responses to “So very close to home…”

  1. Julie Avatar

    God’s bless, you! I totally understand! This is not an easy gift, but it is a great gift with rewards that do outweigh the challenges. Be strong! Phoenix will be praying for us now that she is with God.


  2. Scottie Avatar

    How my heart aches for you! What a special mother you must be. You were chosen, before you were born, to carry this burden. How strong you must be! Remember this,you are not alone as our king, Jesus Christ, has sent his angels to watch over Poppy and strengthen you. I know this is true because his word says it is true. It saddens me that I live so far away that I cannot be part of your lives. You have always been a very special love of mine and you are never far from my prayers.
    All my love for you and your family- Scottie


  3. Lisa Jones Avatar
    Lisa Jones

    Good morning Noelle,

    This morning, my brain woke me up around 4AM. I am usually frustrated when this happens. What’s SO important that I have to wake up now? It’s not like I’m going to solve the worlds problems.

    This morning, however, I now know why my little brain woke me up. It was for you, and of course, Poppy.

    I was clicking around on KGW’s website. Nearing the end of the articles, I saw the picture of Poppy’s little hand. Intrigued, I watched your video and then had to Google to see what six months have brought. Therein, I found this blog. I was saddened, but empathetic, to your posting.

    I have not lost a child. I can’t imagine that type of true, physical, emotional, spiritual pain. I did lose a brother when I was a teenager and know the daily highs and lows that come from a terminal illness. I am now 50 years old and can say that the loss shaped me more than anything else.

    During the four year process of good days, bad days and days when I was left wondering why this inhumane torture was allowed by God to happen, I felt closer to Him than I ever thought possible, down to an anger that was soul crushing. Why? If You’re going to take him, just take him and put us all out of our misery.

    Now, as I get older and know that we all terminal. It’s just a matter of time and, for the most part, we don’t know when. From the point of inception, we are one day closer to death. Some may say that is depressing and morbid. I, for one, chose to look at as I’m one day closer to being with The Lord. My intent it’s not to preach to you. Rather, it is to remind you that God loves you. He loves Poppy. He has a plan. (I’d often times like to have a printed copy, in Excel format maybe?).

    It’s also totally OK to be pissed off at Him too. He’s tough. He can take it. During the time that you, me and Poppy have on this earth, all we can do is try to focus on the big picture. If I die today, I hope that I’ve made a difference in other peoples lives. Poppy, and you, have made a difference. You’ve shown love and caring to others. You’ve done your job.

    I will keep you and your family in my thoughts and prayers. You are a fighter.

    I hope that you found sleep last night and I hope that you have peace on this new day.

    Now that I know we why God, and my little brain, woke me up, I think I will try to catch some zzzs before the alarm goes off.

    God bless you, Noelle. You are loved.


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