Blurry Edges

Several conversations lately have included the topic of dreams. How often do you remember your dreams? Do you dream in color or black and white? And so on.

I mentioned previously how I have clear, vivid dreams most every night. I’ve started paying more attention to other details besides simply what the dream is about. My most recent observation is that it seems the “lens” or eyes through which I dream are blurry around the edges. As if I can see clearly what is right in front of me, but as I move my eyes or attempt to look beyond what is in focus, I don’t see things well.

I think to myself how true this seems about life, especially right now. For the most part, dealing with the moment, the “right then” is about as clear as things get for me. The moment I start looking around, ahead or even in the past, things get fuzzy. I lose clarity.

It seems we have no choice but to be present and live in each moment. There is a part of my personality, a part of “me” that I either lost or let go of that day in late January when we learned about Audrey’s health. I mostly stopped making plans because I truly had no idea what the next day would bring.

And this has continued each and every day sense. It still feels unnatural sometimes. It frustrates me a lot of the time. I want the edges to be clear. I want to easily see what’s around me, what might come next.

This week as Audrey was busy making progress and moving forward. I was not. I found myself stuck in a place of discouragement. I want to know so much more than I do. I want answers to the big questions.

Sometimes I just want to hit fast-forward and get to when life feels more settled…more normal. And then I stop.

“Stop wishing it away”, I hear resounding quietly in my ear. I need to embrace this, right now. For several weeks it still felt like a transition, while now it seems that we need to settle in. Know that the feeling of transition may simply be a new way of life. Prolonged flexibility.

I think of Audrey’s head. The back of it is quite flat from lying on her back for almost three weeks. PT is encouraging the team of nurses to help avoid this by putting her fully on each side for a period of time each day. The therapist assures me that her head is still quite pliable and there shouldn’t be any permanent damage.

Pliable…I need to be more pliable. More easily flexed and bent but not broken. I am certain that I can flex with much less force today than perhaps this time last year. But that doesn’t mean it doesn’t hurt sometimes.

And a couple of days this week it hurt.

I wanted to be in control.

Trusting the bigger plan was exhausting me.

Hunting for the beauty took a seat in the back of the bus.

And what was I left with? Not a whole-heckuva-lot. How quick and easy it was to get off-balance. I felt empty and uncomfortable. I was not so gently reminded of how bad it feels when I even slightly get off course and my faith shakes.

It’s okay to have bad days, I get that. I have zero doubt that there are plenty more of them to come in my lifetime. But the key is being able to move forward, fighting against getting stuck or sinking. Sometimes I tear up and blink away the salty drops before they escape my eyes. Other times I sob and should perhaps rehydrate afterward from the opening of the floodgates. That’s the truth of it. I won’t pretend that these days don’t happen. But thankfully, I am surrounded by family and friends who stick with me. I believe in a forgiving and grace-FULL God who, at my very worst, shows me love and peace.

I woke up today feeling peaceful. My attitude seemed softer and open to whatever the day might bring. We’ve been watching Audrey’s breathing for several days now. She only has her breathing tube, feeding tube and (yay!) a new PICC line. They would attempt to wean her vent support but the blood gas results would force the doctors to go back up. This started to feel discouraging, particularly because she didn’t need as much support prior to her heart surgery…did something happen with it to require a breathing tube long term? Can she fully recover from the trauma of the operation?

We got to the hospital this morning to see that she had maintained proper levels to continue being weaned aggressively over the past 36 hours. They told us they would attempt a trial extubation…EXTUBATION!

We were cautiously optimistic throughout the day. Trying not to get our hopes too high but praying it would work…that she would breathe.

And she did. She IS. It doesn’t feel very good for her though, her throat will be sore and swollen. She attempts to cry but hardly a sound comes out. A sad sight to see, but it is seeing life. Seeing her react to pain seems to be such a good sign. They will watch her closely throughout tonight and there is a possibility we will be moved to the NICU in the next day or so to continue her recovery.

I want to hold this little girl so badly. And this gets us one step closer.

Soon enough, baby girl, we’ll be nose to nose again. Way to go! You are fighting a good, GOOD fight and in your own time, you have wins and victories. I’m proud to be your mama. Thank you for reminding me to keep the faith. To fight with you and for you. You amaze me, precious bunny.

I pray she will not need to be reintubated. That she will be moved to the NICU so her progress can continue as she gets stronger. I pray for patience as her body takes the time it needs to recover so that one day she may come home. I pray also that her heart stays strong and she has more time to grow before her next surgery. And, I pray that she would defy odds against the gremlin in her brain.

Until next time, and as always…

Love and hugs,
R

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9 thoughts on “Blurry Edges

  1. Rachel, we have been following your story and praying for baby Audrey without realizing that we knew you and your dear family. A friend has been sharing your posts on FB and we have been drawn to your story (and only last week realized we knew you from our years in Stillwater). As I read some of the most recent posts, I felt like my heart was being ripped out … and I knew I couldn’t even begin to imagine what all of you are going through. It’s so obvious that this little baby is surrounded by so much love and that you are fighting this fight with such faith and grace and courage. It’s a privilege to be part of the band of warriors praying for her and you. Love and hugs coming to you tonight from Ohio. Tom and Kay

  2. Rach,
    You continue to amaze and inspire so many. I know that at times you feel the stress and the strain, but you are amazingly strong. You do have the support and prayers of so many people who love you and your family dearly. God is watching over Audrey and you.

  3. Having your life turned upside down without any sign of daily normalcy is beyond belief!! Absolutely every emotion you feel on a day-in day-out basis is more than justified, understood and we all can empathize! Focus on all the progress and the blessings in your life. But more important take the time to care for yourself and renew your strength, in whatever way that you need. Stay strong and know we are all supporting you!

  4. Life can be very hard. God is good. Today was a very good day. Thank you Lord. May you be praised and glorified in the life of this precious child. Fight on Audrey bunny. Hang on mom and dad. Lean on your support when needed. Love.

  5. My heart hurts for you & your family. I continue to pray for sweet Audrey, you & your family. Love & Hugs. Amber

  6. Yay! Way to go, Audrey. What a sweet pic. She looks so much like Cooper. I love her and want to see her again soon. Praying, as always!

  7. Rachel, There is one place in my life where I have never wanted “blurry edges” and that comes from mother love, one of the deepest recesses of my heart. I’ve wanted the same things for my children that you want for Audrey and Cooper, and often came to learn that the course was already set in place~ When it comes to your steadfast love, faith, and determination that Audrey has the best medical care, is loved and prayed for, “blurry edges” do not exist. Know that you and Chrisopher are her chosen parents and that as you love her, she too, loves you. Rejoice in the victories she makes and of course cry and moan and wail, you must. It’s to much to bear at times, even for me looking in from the outside, and thus I light “Audrey’s Candle” each night. Cling tight to Chris and Cooper and your team… Your girl is “clear” about many things~ she wants to be here and is fighting hard to stay. Rest little Audrey~ grow strong in broken places. Take your time and we’ll wait~

    Deep love and faith,
    Your Great Aunt Cynthia

  8. I am so grateful to read of sweet Audrey’s progress. Keep focused forward, making progress step by baby step. Hugs!

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