Thursday, November 6, 2008


I have an amazing opportunity to leave for a few days for a religious retreat. Back in May, a friend suggested that I would enjoy the experience, and I began thinking about what it would take to make it happen within my level of comfort, "one day." Initially, I couldn't imagine it happening at all. That's because, with Mallorie demonstrating apnea from her first day of life, my life since her birth has revolved around watching her breathing. It's more than the normal, have a newborn and be afraid to leave the room to take a shower, because what if the baby stops breathing? This baby does stop breathing.

We've had some scary times, times when we have had to breathe for her. And a night when I woke (twice in the same night) to sounds I didn't recognize and Mallorie looking like she was having a seizure, because I had become so sleep-deprived that my body in self-preservation mode, just slept though the alarms and incorporated the noises in my dreams. That night, she had had so MANY episodes of apnea that I'd stopped hearing the pulse ox alarm, and it was only the grunting noises she was making (and God) that woke me in time to "bag" her and get her breathing again.

We have come a LONG way since those early days. For one thing, we learned after that really scary night, that a really low caffeine level was allowing the apnea to rear its ugly head, and we have since become experts at knowing we have to bring her in for a blood level any time she has a days or nights of apnea in a row. And since she's not growing as fast as she did when she was a newborn, she doesn't need dosage adjustments as often, anyway. For whatever reason, apnea hasn't been the major discussion point in our lives in ages, but it is still there. And I don't sleep deeply at night. Just as in the early weeks and months of having a newborn, I still don't pull the covers up too closely around my head when I sleep, because I need to be able to hear the alarm, or the quiet little noises Mallorie makes just before she starts spitting up, so I can give her some water to rinse her throat and stop the cycle, or reposition her to make her more comfortable and less likely to aspirate. And the others in our family seem to not hear her apnea alarms as easily, so I just don't leave home overnight. Ever.

So back in May, when I thought about what would be barriers to me attending this retreat, I thought about the nighttimes and wondered how I could ever feel safe if I was gone at night. I thought maybe ... if we could find nurses or someone else to stay up with her at night. So when the OB who cared for me during Mal's pregnancy also mentioned the retreat, I mentioned my concerns about nighttime, and wondered if I could bring my breastpump. (I had heard you have to give up your keys, watches, phones, ...) She said the pump was OK, and they'd try to help figure out the nighttime situation, and later she got back to me and said she had nursery and L&D nurses who said they might be able to watch her at night. One was one of Mallorie's many "moms," Helen, who was the nurse in charge the day Mallorie was born and present at her birth.

I know. Who ever gets kindnesses like that?? So I began to think, I could go on a retreat.

But over the past few weeks, I got a little crazy over how in the world I, in my OCD-ishness, was going to type out a "care notebook" and include every little thing someone would need to know to care for Mallorie while the rest of the family slept. And I was going to create that notebook in my "spare time." (Do any of you moms out there have a template? Have you done such a thing?)

There are just so many things I needed to include, even if all meds are given before the family goes to sleep. I was thinking I needed to add pictures of her best sleeping positions, explanations/pictures of how to "prime" her feeding tube instead of plunging from above (to avoid stimulating reflux), ways we've learned to stop the gag/vomit cycle, .... You get the idea. I was dreading the process of getting ready so much, and I was going to need 2 retreats just to get over the stress!

Then Tracy, our sweet friend/nurse who already knows Mallorie so well, told us she would be happy to watch Mallorie all those nights. So now, instead of writing out instructions for all those amazing volunteers, all I have to do is ... well, nothing!

But you know I occasionally seem to worry, anyway, so if you don't mind, please pray for Mallorie's health while I am away, and for me to just let go of the worry and enjoy the experience. The other kids, I know can survive illnesses and bounce right back. Truthfully, probably Mallorie can, too. But you know. I like to try to feel like I've got everything "set up," so nothing can go wrong.

Exactly 21 months ago today, I had to open my hands and let go of control, in somewhat the same way I feel like I'm being asked to do today. Though my sweet doctor tried to give me control of parts of the experience that day, truthfully, none of us had control of what God was going to do in that room on that day. And God did just fine on His own. :)

So today, I'm loosening the grip again, and going on a retreat. My first one ever, by the way!


Cathy said...

Our mantra for your weekend will be "Let Go and Let God" right?
Love you, Connie and praying for this to be a great experience for you.

Jessica mommy to Alex/ RTS said...

HAVE FUN! GET REST! Promise me when you sleep you will pull the covers up around your face, snuggle in and sleep.
Love you!

Kenzie said...

YAY Connie! I know we had talked about this before and I am so happy that you are going... for sure, no reservations. Tracy is going to take great care of her and with John and the kiddos there... everything will go super smooth.

Have a wonderful time and I'll be praying for your retreat time and Mallorie's health and safety while you're away!

Love ya lots,

Laurie said...

Oh Connie,

Yay for you girl!!! I just know so many blessings await you at the retreat and I am praying that the Lord really makes you relax and let go. Sure sounds to me like He has everything planned out for you and the perfect people to take care of our Mallorie. Wow, you sure are growing girl and I am so proud of you. I know it is hard to loosen the grip and when it gets hard, He will gently pry your fingers and heart off.:) I will be praying for Mallorie's safety, and for you to be blessed beyond measure with the refreshing filling of His Spirit. Oh and Happy 2l Months to Mallorie and you. She is such a joy!! I love you Connie.

Love and Hugs, Laurie in Ca.

Finding Normal said...

God brings us who we need. That's one of my many mantras!
I hope you have a restful retreat. :)

The VW's said...

I hope you have a wonderful time and are able to not worry, knowing that she will be in great hands! I've been struggling with this as well. I still haven't found a way to be able to get away overnight, but your story gives me hope! Have fun!!!

jb said...

My dear Connie,
The above post nails it: "God brings us who we need." He brought you a way to experience the wonderful opportunity of this retreat and He gave you the courage to seize the opportunity! Kudos to you, my dear friend. I just caught up on you posts since 10/31, what a sweet picture of Mallorie, she is precious and I am looking forward to more picutres of her, I would love to see her smiling! I also love that you are willing to take a risk, break a rule here and there and give your daughter a treat! How did she like that turkey? I love the support you get from your pedi and whoever wrote that your relationship with her is special is so very right, how very lucky for Mallorie and both of you. I am I knew you wanted to write about the apnea, but what you wrote about the Fight was so very moving. I am not a parent, only a legal guardian of a 49-year old man with mental retardation and some other mental health diagnoses and some significant behavioral issues (lots of medications), so it is from that perspective, although different, that I understand the Fight. But you and all the other Moms and Dads and others continue the Fight, it is what is right, although exhausting and frustrating, but when you have a win, it is such a sweet win and it gives one the courage to keep on keeping on. You are a wonderful mommy, woman and friend and I am truly blessed to have you in my life, even from a distance. I know what you get from and bring back from this retreat will 're-vitalize' you and I am so pleased it all worked out for you to go. How sweet of Tracy to be with Mallorie and how wonderful she knows Mallorie so well. John and the others are missing you, I am sure, but everyone will be fine and happy when you return. Thank you for sharing so much of your life. I love you, Connie.

May said...

yes we gotta have back up we can trust, cos we're human and we all need a break from what is a herculean task. glad you're getting one!