{community}

If you follow my Instagram account @mrs_t_park you know that I am currently working tirelessly to adjust Bernadette to our new CPAP machine. I’ll write a separate post about that eventually but for now, the quick version is… Bernadette was diagnosed with severe sleep apnea not long ago. She is currently having 20 episodes an hour where there is some sort of obstruction in Bernadette’s airway causing her to briefly stop breathing, 20 times an hour. Scary, I know.

Either way, the CPAP (continuous positive airway pressure) was delivered a couple of weeks ago. The plan was to have her wear the mask for all naps and at every bedtime. Sounds easy enough. NOT!

She fights it. She pulls off the mask from her face. Actually, if her arms are not swaddled she will grab it before I can even clasp the hooks together. It’s quite ridiculous really. I started pulling out all the tricks in the book I could think of and then some.

I want her to associate the mask with sleeping and as a positive. I don’t want her to look at the mask and start getting upset before I even pull it over her head. In order for me to even get the mask on her face, it means swaddling her and then slipping on the mask while she sucks on her pacifier. Luckily for me, her teeth are just now popping in so I’m not overly concerned about any dental issues with the pacifier.

Once I’m able to accomplish that part, I sit in the glider with her, gently rocking her to sleep. Some nights it’s quick and I can set her down carefully in her dockatot. Other nights, that means sitting there for hours to keep her asleep and comfortable. Some nights it means getting up after we have been asleep for an hour and sitting in the glider with her for as many hours as I can stand it. Once she wakes herself up, she’s upset. She manages to breaks free from the swaddle and scream as she the moves the mask from her nose to some other part of her face or neck. The process starts all over again, or some nights it doesn’t.

Living in this state of exhaustion isn’t easy. My emotions are more on edge, ready to break free and let loose from deep within. I mean really though, how much more exaggerated are life’s hardships when you are that sleep deprived?!

Either way, I was at the women’s group at church this morning, hesitant to go of course due to my current state but felt it was important to go.

I got up late, put myself together and rushed out the door.

I arrived late, always embarrassing to me but nothing new and sat in the back with Bernadette. With listening ears I tried to multitask taking care of my little child while listening to the talk about marriage. I ended up taking Bernadette out to the nursery because her sweet little vocalizing was making it hard for me to focus.

It ended and we broke up into small groups to discuss things related to marriage. I, oddly enough, was not in the sharing mood. Partly because I was processing through all the wonderful nuggets that were shared that morning but also because sleep deprivation was running deep and when I am this sleep deprived, the only thing I can even think about is sleeping. And, what would it be like to have peace and quiet for an hour without all my small littles calling for help. It would be nice for an hour, right?!

My turn came around to share a recent victory in my marriage. I couldn’t think of a thing after thinking for several minutes while my friends shared some beautiful things.

Fatigue took over and my emotions spilled out. Tears threatened to escape my eyes as I quickly said “we are in survival mode right now.” It is the truth! David and I take turns putting Bernadette to bed, rocking her to sleep so we can attempt to set her down and get some rest ourselves. I primarily get up in the night with her because I want to, first of all, and David has to be awake enough to go to work the next day. My days consist of appointments and therapies and while it would be nice to be all there completely, it’s not as crucial as David heading into work.

My prayer request was for sleep of course but that we would do ok with the little amounts of sleep we are getting. When I am tired, I lose my patience quicker, I am less grace-filled, I am quick to blame, quick to anger and not as slow to speak as I should be.

My friends of course agreed to be praying but then offered to step in and help. The idea that this group of friends would come over and let me nap while watching my kids is the most thoughtful idea I’ve heard in weeks! Just the fact that they would be willing to set aside their precious time to lend a hand means the world to me.

I’ve felt distant to my community lately. My schedule has been out of control and leaves little time for play dates or phone dates for that matter. But today I realized that even though life feels like it’s warp speed ahead and my connection with my friends isn’t as often as I would like, they are still there. Rooting for me, encouraging me, ready to step in when and if they can. But the fact that they still offer means more to me than words could ever express.

I know how important community is and how hard it is to find and maintain. But friends, it is so necessary. I think especially as young moms who are up to our ears in all things kids. Find your people and love them hard.

3 thoughts on “{community}

  1. I’m a retired Registered Nurse, and I’ve been using CPAP since January. I’ve achieved daily compliance from the beginning, but I’m still sorting out the mask situation. I’m not claustrophobic, but all of the different masks I’ve tried have been very uncomfortable. I wish little Bernadette could know she’s not alone as a new CPAP user!

    You may have received some of this advice already, so please excuse me if what I say sounds repetitive.

    Show Bernadette she’s not alone by showing her pictures of other people wearing CPAP masks.

    You can craft a “play mask” from a small plastic food tub, a plastic tube, a small cardboard box, and some elastic, fashioning it to fit on the face of a doll or stuffed animal. You can help Bernadette put the mask on the toy and supervise her play with it, for just as long as she’s willing to do so.

    You can also try what anesthetists do when anesthetizing children for surgery, and “flavor” Bernadette’s CPAP with a scent that she enjoys. My Respiratory Therapist suggested using a drop of a relaxing essential oil on a saucer placed a few inches away from the machine’s air intake.

    If you have the time, I’d be pleased to see you visit my blog (https://butterflybefree.wordpress.com), where I’ve begun posting about my CPAP experiences.

    Best wishes to you and your family as you get over yet another health hurdle!

  2. You may also consider acquiring some children’s books about CPAP, to add to Bernadette’s storytime library. Growing up hearing these stories and seeing their images routinely among all the other books you read to her, should help her maintain compliance with her therapy when she gets older. I found these titles on Amazon:

    My Tired Brain: A Child’s Journey to Understanding Sleep Apnea
    My CPAP is Okay
    I Don’t Do Sleep Well
    A Monkey, a Mouse and a CPAP Machine: At Home with Rufus the Chatty Chimp

    I haven’t read these books, so I can’t evaluate them, but the first three have positive reviews (the fourth simply has no reviews).

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