You're 6. I feel like we're crossing over into to new territory. You haven't been the "baby" for awhile now. You are moving into big kid frontier.
You amaze me when you say things like, "you've got a point there" when we're in one of our debates. Or "Mom! I've been around the sun 6 times now!"
You are creative and smart. You see patterns and symmetry that most people wouldn't pick up on. You could be an architect someday. You're fascinated by space, it's vastness and its beauty. Space crafts and rovers, meteorites and astronauts. Maybe NASA? Or maybe you'll be a super hero? You certainly have the energy for it! With your cape tucked away or your spidey suit right under your regular clothes, the way all good super heroes dress.
Though your rough and tumble, I see little hints of sensitivity when you still come up with arms wide open and say "hug?" Or you sneak into my bed in the middle of the night, you're careful not to wake me but in in the morning I smile when I find you there. When I was in the hospital, you weren't afraid of me with all my tubes and cords, you gently sat beside me and brought me presents you and daddy picked out in the gift shop.
I love to see you take care of your baby brother "Buggers" as you still affectionately refer to him. (This is a derivative of "Joel bug" his nickname from birth because of how tiny he was). You teach him to share and try not to laugh when he gives you love taps. You help him up and down and show him that anything can be a toy with a little imagination. Then there's the sound effects and giggle fests. Only you can entertain him the way you do.
You adore your older sister and though since your independence has blossomed you two have the occasional spat, I know the feeling is mutual. The two of are so very different in the best way possible. Still, you could play video games together for hours. You love it when she reads to you and perfects your costume for whatever role you might be playing in your imaginary adventure for the day. Heck, even tag is fun with her.
I'm so very proud of your place in our family. But sometimes, though you never say so, I know you get lost in the middle. While we're all laughing at the baby or fussing over how cute he is. While we are applauding your big sister's guitar playing or basketball skills. Sometimes I see it on your face or the way you say, "mom, I can't do it as good as Jayda does."
I want you to know today and everyday there are no favorites in this family. There is plenty of love to go around. Each of you are gifted and unique and I can't wait to see what kind of man you will be someday (take it slow though, would ya?)
I hope someday in the future you will read this and it won't be a surprise to you. Maybe the art of blogging will be long lost but these words will still hold weight. I know you don't like mushy stuff but you mean the world to me. Birth order aside I love you all the most and nothing can or will ever change that.
I've acquired several new ones during my bout with sickness.
We define them as amarkleftbyahealedwound...
When we catch a glimpse of our scars some are meaningless and we may not even be sure where or how we acquired them. But if the wound was deep enough, even though technically healing has occurred, sometimes scars still cause pain. I have little x's on my sides where tubes were inserted to drain the fluid out of my lungs; these x's cause searing pain on some days, it hurts to breathe during these episodes. I have scars on my neck and my arms, my chest and fingers. "Battle wounds" I've heard people call them. Some may fade over time but others will be permanent. Becoming accustomed to my scars and learning to see them in a different light will be part of my journey as I continue to heal both physically and inwardly.
However, our souls tend to heal much slower than our flesh.
Because the figurative scars, the ones that don't show up in the mirror, can often hurt just as bad, if not worse, than physical ones. Sometimes they are relentless, they linger, they cause inexpressible pain in the deepest parts of our beings. Some may be self inflicted, others we didn't ask for. We can try to numb or ignore these scars, hope they heal in time, but I'm not sure they always do heal. Some scars run so deep we may carry them with us indefinitely. Our memory flashes like scenes from a horror movie when we are alone or when they are triggered in certain ways. We pray for the hurt to stop and often the answer is: grace is sufficient.
We teach our children not to stare or ask questions to just keep walking when we encounter people who look a little different. I've had to deal with that in public and I'm bothered by the fact that I'm bothered.
I don't think I'll ever look at people in wheelchairs the same. People with limitations. People with disfigured appearances. People with scars.
Instead of quickly averting my eyes and pretending there's no pain in the world I'll ask myself, "What is thier story? What scars can't I see?"
And maybe we should be asking that of all people. The rude people, the insensitive or impatient people. The prejudice ones, the addicted ones, the ones who are screaming for acceptance. The quiet ones who don't step on toes, the perfectionist, the ones who work to earn thier worth.
"What scars are you suffering from?"
So where does that leave us?
I don't pretend to have easy answers but I suppose it's a little like accepting outward scars. We learn to see them differently. We learn they don't define who we are and we learn to define beauty much differently. We trust in a God who makes all things beautiful in His time. The one who walked this earth and felt our pain and has the scars to prove it.
I believe freedom can come despite our scars. It's hard not to be consumed by our outward appearance in this world and it's even harder to bear our soul scars. These days, I'm learning to check my heart more than I check the mirror.
I was nervous, excited, a little unsure about how we would make it all work, especially after the night before. I don't think I had slept or ate in the previous 48 hours. All the wedding preparations had us fighting over something petty. I have always said if I were to do it again, it would be just me and you and the officiate, maybe a few friends and family in some beautiful clearing out in the forest. It would be simple.
Nonetheless it was a lovely ceremony and once I walked down the aisle and my dad lifted the veil, I looked deep into your blue eyes and knew: "we are going to be ok"
Still to this day, I think about our late night conversations. Sometimes we would drive around for hours just to be together and talk. Sometimes we would sit on the porch of my moms house. We mostly talked about our experiences with God. I had grown up in church and you were a few years into your surrender with God. We we were pretty different in our beliefs but mostly I remember grasping grace for the first time. I grappled with the idea that I could neither earn Gods love or lose it. Not only did you talk a lot about this love, you fleshed it out in the way you accepted me, the way you accepted my daughter.
That's how I knew we would be ok. Now I was not naive. I was no stranger to dysfunctional relationships and we both came from divorced families. We regularly got on each other nerves before we were even a couple. I felt like I was standing on the precipice of a huge cliff, the view both terrifying and breathtaking at the same time. I knew if we jumped there was no turning back; but for once I was ok with that.
I knew that if we leaned into this grace and practiced it regularly with each other we would be ok.
Fast forward ten years later:
I knew you would be an incredible father to our 3 crazy kids.
I knew you work hard at what ever job you had whether or not it was your dream job.
I knew you would be a servant and put my needs before your own.
I also was sure we would fight and pout and have to apologize for a thousand ugly words or attitudes. We would have plenty of opportunities to practice forgiveness.
I knew we would face hard times not only relationally but financially, physically and spiritually.
It didn't surprise me that you would be the kind of husband who would spend every night sleeping in a waiting room for a month when I was in the ICU. Then spend another two months sleeping in the most ridiculously uncomfortable recliner next to my hospital bed.
This last season of our life has been trying to say the least. However I have joy in the fact that we made it through in one piece and that God is continually healing us both together.
Words can't express, though I did attempt it.
Here's to 10 years and 10 more and as much time as were allowed together.
Not until I have something impressive to tell you. You may have read my latest story (one post back), my dramatic narrative of my 3 month stay in the hospital.
Truth is: it feels like not much has changed.
Yes, I am home now and my kids are with me. Last week I spent one full day alone with them. Despite a few eye rolls, my 12 year old did most of the work. Thank the Lord for half grown little people and all thier youthful energy. I wait longingly for the day I can have even half of that energy back. Some days it feels like I might not ever get there.
You see I still can't walk very far without getting winded, my trach site is still open, I still cough and get choked up if the air is not just right. My chest tube sites can feel like knives in my side from scarred tissue. My hands are a mess, still not healed from blood pressure meds in the ICU. I need help going up and down stairs. Withdrawals aren't the easiest thing I've ever experienced. I still can't drive, can't pick up my baby, can't bathe myself, and can't lay on my side because I feel like my lungs might cave in. These are just my limitations right now, big or small, there they are hanging over me day after day.
This is why I don't want to write. I want to tell you my story from the end. When I'm healed, when I feel like me again and everything is back to normal.
But lately God whispers to my heart, "Tell this part of your story even though you feel its undone. Tell it from the middle; tell it from right where you're at. And remember, I Am still writing."
I don't want to seem ungrateful. I keep saying I'm so glad that God let me keep participating in life and I have a new outlook on everything. Sometimes I people watch from my wheelchair and I just think how much we take for granted the everyday, just to be walking around on 2 feet; to be healthy enough to go to work or to take care of people we love. "Do you know just how beautiful your life is?" I ask myself. So I admit I'm human and impatient and I want my miracle to be finished. But it's just not quite there yet.
But as I lay still and wait for sleep I try and count the things I can do.
I can walk some, there was a time my legs forgot how to work.
My trach site is going on its 7th week and it's. so. very. close. to being healed.
My coughing fits no longer last for several minutes leaving me exhausted and feeling defeated.
My scarred tissue will heal and the doctors seem hopeful that most of my fingers will too.
I've dropped most of my meds, only one to go. My very conservative doctor even felt safe to take me off antibiotics.
I need less and less help on the stairs.
I taught baby Joel to climb up into my chair for a cuddle. When I kiss his soft little head I vividly remember how I longed to be able to hold him a few short weeks ago.
As for the other limitations, I know I will get back to them in time.
It's not always the first thing I want to ask myself but I try, "what CAN I do?" Instead of dwelling on things I can't.
Another thing I can still do is encourage people through writing, through sharing my story openly and honestly. So if your in a place that feels like you're in limbo or progress is antagonizingly slow, just know I'm right here with you in the middle. It's not always a fun place to hang out but it is one where we can exercise our trust in the One who is still writing.
I'm embarrassed to even try to say thank you for all you've done through all of this.
You've been my personal nurse. You may have a nursing career but this is something different. You have sat by me countless hours; sometimes talking, sometimes silent. You have changed dressing after dressing, coached me on medication, and made sure that I understood the fast talking doctors. You've sponge bathed me, changed my bed pan, my clothes and my sheets almost every day. You made sure I was as comfortable as I could be. You learned trach care and wiped mucus off my neck countless times. You've came early stayed late, and even stayed all night just because I was really nervous about having another tube put in.
More than a nurse, you have been my faithful friend. You have waited with me and been bored with me. You've watched endless hours of HGTV with me. You have brought me almost every meal only to throw most of it away because I was too sick to eat. With tears in your eyes you told me you would rather quit your job than have me sit in the hospital alone. You listened to my fears and cried with me. You encouraged me with words Jesus would whisper to my heart. You have modeled sacrificial love and servanthood with out even blinking.
I won't be able to thank you enough in this life time. I can never return the favor and you probably wouldn't let me if I could. Because you're just being you.
And I know this is just what good mothers do. They have staying power. A supernatural energy to protect their offspring, to shelter them when there is a storm.
I'm starting to want to put a few things down. I've waited and waited because:
1. I can't stop coughing
2. I'm not sure I wanted to remember.
Thankfully I don't remember the first half. When I hear the bits and pieces I shudder. I rejoice that I'm alive. I cry because I just don't understand how quick life can change; it can be ripped right out of your hands. But mostly I cry because of how prayer really does affect our world.
A lot has been shared on Facebook so you may know most of this story but this is my telling, my perspective.
My whole family had been sick and I was the last to get it. It came on pretty strong with aches, sore throat, coughing, that kind of thing. Two days of this had me at urgent care where they concluded I had the flu but they couldn't give tamiflu since I was still nursing Joel. Rest and fluids and you'll be fine he told me. I went home to a miserable night of coughing up blood but I wasn't worried because Google said unless it's bright red no cause for alarm.
Early that morning I felt like I was having an asthma attack, only I grew out of my asthma years ago. I felt so weak and breathless that I couldn't get out of bed. I was getting scared and knew I needed help. Of all nights to forget to charge my phone this had to be the worst. Unfortunately John was sleeping downstairs with the baby since I was sick. I resolved to at least get to the top of the stairs.
I crawled out of bed over to the stairs. I tried calling out but I was breathing so hard I couldn't get my voice loud enough. Luckily there were some toys and random things laying in the hall. I started pitching them down stairs. John stumbled over and once he saw me he knew something wasn't right. I whispered in broken speech that I could barely breathe. He carried me over to the big windows in our room and opened them hoping the cool air would help clear my lungs. He left me sitting on the window seat to see if he could find some medicine. I sat there feeling so weak I might fall out that window.
In a matter of minutes the squad was parked outside with its red lights streaking across its surroundings. A paramedic carried me down the stairs of our skinny row house and next thing I know I'm taking an ineffective breathing treatment and trying to answer questions through restricted breathing. It felt like someone was hugging me too tight and wouldn't let go. I was afraid but never imagined the outcome to be remotely serious.
Once in the ER they tried different breathing masks to no avail. And after that my memory drops off. I don't know if I blacked out, I've tried so hard I just can't remember.
Apparently I was transported to a couple different hospitals until I ended up at the UC cardio vascular ICU. During all the transporting and trying to figure out what was wrong, things were going downhill fast and I was in multi organ failure before they knew it. Friends and family were gathered, prayers were going up and hope was shaky. Once at UC, the process of saving my life was set into motion. I was on a vent, ECMO, had a tracheotomy and put on every drug under the sun. I was there for a month fighting to live but I remember nothing. Just flashes.
I remember being strapped to the bed while tubes were inserted in various areas of my body. Fighting, I remember fighting to get up and seeing the pictures on the wall of my life, my beautiful family that my grieving yet prayerful mother had taped up. I remember trying to communicate so hard but just not being able to. I remember tears and horrible nightmares. But I also remember the staff lining the hall as I was wheeled out to be transferred to a Long Term Acute Care facility at Christ Hospital. They all clapped with smiles and waves, celebrating my life. I really didn't understand still what I had been through.
I was in LTAC for another month trying to repair some of the damage that was done. I've had chest tubes, feeding tubes, IVs, a trach, and more pain than I thought my body could endure.
I've lost most of my muscle mass which I'm trying hard to regain. Right now I'm in rehab doing just that. For 3 hours every day I am up exercising and relearning to balance and walk. It can be really exhausting after lying in bed for as long as I have. I was terrified to come here, scared that I couldn't do it. But I've been surprised what a little trying can do.
I've been up, I've been down. I was depressed for the first part of my stay that I was conscious. I was in shock: how could the flu knock me down so hard?
(Which I'm learning more and more that it wasn't just the flu, but more like a rare H1N1 combined with strep which led to double pneumonia and infection in my blood). But the more I heard about the darkest part of this story, I can't help but be thankful that I made it. I've seen miracles before in other people's lives and my own. But our day to day life tends to make us forget.
We forget that miracles aren't just in the thin pages of the Bible that's tucked away somewhere. They don't just happen to other people. The thing is miracles happen during pain and suffering. We don't see miracles in the everyday drive to work, do the dishes life. Maybe things come together like extra cash comes our way right when we need it. Or we find our car keys just in time. No. Miracles involve pain and grief, hurt and true loss. Miracles can be slow, they can be a process. We might not always recognize them. And maybe sometimes they don't show up at all and we are heartbroken and we ask why. I wish I knew but I don't. All I know is that I'm here against all odds.
I met another guy like me, he came with his wife to visit my room. I think his chances of living we're even smaller than mine, but there he was sitting in my room talking and laughing. Living proof of healing. Another miracle breaking through suffering.
I really don't know what to make of all this. I'm still processing and probably will be for some time. I suppose miracles are really just mysteries to us and sometimes all we can do is be grateful. I feel like I've barely scratched the surface. As I sit here in rehab and look out the window over the city I think about all the people milling around down there. I think about their stories, their pain and if they've experienced miracles. My story feels so little, so small in this huge hospital filled with hurting people. I look at them and try to smile. I pray for their miracles to come soon.
I couldn't be more grateful to the people around me and my family. If you said a prayer or encouraging word. If you visited, waited in the lobby or brought food. If you have sacrificed time, vacation days, or a drive to Cincinnati. Some very kind friends organized a benefit to raise money for our medical bills. My hairstylist even came to cut my hair to make it more manageable. Maybe you sent a card or made a card, maybe you clicked 'like' or shared an update on Facebook. You might have bought a gift or gave money. Maybe you listened to my story. If you're reading this now: thank you from the bottom of my heart. Every little bit has gotten me through. I can't thank you all enough for your support.
I stop and think all the time, "I can't believe it has almost been one year." Time is such a fluid concept but it just keeps trudging on day after day. Yes, some days it flies by and we think "where did it go?" But this last year? It has drug on and on. Its felt more like 2 years, maybe 3. And when I think, "I can't believe it" its from sheer joy that it's almost done, it feels like an accomplishment.
Before you dub me a cynic, let me explain. I've alluded in my sparse blogging over the past year how Joel will just. not. sleep. I know, I know, babies aren't supposed to sleep and they have to learn and they will eventually and so on and so forth. All parents go through sleepless nights and weeks and *cringe* years. I get it. It's nothing unique or out of the ordinary. Most people look at me like I'm crazy when I say my baby won't sleep and maybe they are thinking "what did you expect exactly?"
Some perspective on what I mean when I would say "he won't sleep." He would go down in the evening at varied times and wake up every 2 hours on the dot. He would eat and usually go right back to sleep. (There was an occasional night/series of nights when he would wake around 4 am and think it was morning.) He would "sleep" for 10-11 hours before he was up for good. Now this is totally what you expect from a newborn. (At least my other two were like this and were for the most part good sleepers by the time they hit 6 months. Joel must have missed the memo on how we do things around here.)
Naps? 40 minutes tops. Sometimes 20. Other day time habits? Constant eating. Nursing every 2 hours, baby food 4 times a day after he turned 7-8 months. Before that it was more varied because he stopped having regular bowel movements when we initially tried cereal and purees at 6 months.
Initially this was really concerning because his doctor was starting to think something may be up. After one appointment around 6 months, he had a CDC done and it came back with a really low iron level and some other irregularities so our doctor directed us to the ER at Children's Hospital. We were there all night, waited 7 hours or so to get in. Once we were seen, they ran every test they could think of only to find nothing wrong and joined us in our confusion as to why we were there. We left with a prescription for a multivitamin iron supplement. Cherry flavored.
So with the health issues ruled out, I thought, "Am I doing something wrong?" That's when the search was on.
I pored over all the books, blogs, and articles about baby sleep. I tried to apply scientific reasoning as to why his sleep cycles weren't connecting. I tried all the methods I could think of: I co-slept, he slept across the room in a crib, and then I docked the crib to our bed with one side down. Before that I tried him in a swing, a mama roo, a rock and play, a pack and play, and even in a car seat for crying out loud (he was sick!). I swaddled, tried a sleep sack, footie pjs, just a onsie. I let him cry within reasonable time constraints,(maybe he will get tired and give up?) I picked him up at every little sound (maybe he is waking himself too much?) I've nursed, not nursed, nursed one side at time (foremilk, hind milk imbalance?), my husbands given him formula at night. I have tried cereal before bed. I have even tried to feed him baby food pouches in the middle of the night. White noise. Music. Pacifiers. Gas drops. Essential oils. Cool mist. Room darkening curtains. Baths. Massages. Night time rituals. Desperate. Completely desperate. That's the phrase you are looking for.
Putting this story out here is risky because I know how quickly unwarranted advice can come in from well meaning sources. I am guilty myself of offering up advice because something worked for my child. I feel accomplished and want to share that with you. But advice in this situation makes me feel like you just don't get it. I mean I have been in the newborn funk for almost an entire year now. Normally, I would love advice and trust me I have gotten plenty of it this last year. I am not just a prideful, do it my way kind of gal, At one point, I was asking advice of every mom I would encounter. "Oh you had a baby?? Did they sleep longer than 2 hours at a time? Were they nursed or bottle fed? Did you have a bedtime routine or follow baby's cues? When did you night wean? Did you try anything I haven't tried? Tell me your entire process of how you get your baby to SLEEP."
Nothing worked, nothing helped. I was so tired, I was irrational. I was consumed by not sleeping, it's all I could think about or talk about. I was obsessed, I was angry, I was weepy. My days were blurry and unfocused. I felt like I was stuck in a miserable cycle and like a victim to my life. I had zero energy to do the things that help me feel normal. Not a fun place to be. Sure there were plenty of those moments where I would let my mind rest on how grateful I am for my healthy baby (mostly when I was holding him through nap time because I just couldn't take the chance of him waking). There were plenty of smiles and giggles and celebrating new milestones. But for awhile, those were all experienced with the dark cloud of no sleep hanging over my head.
Now this probably sounds like a rant, a complaint letter of sorts. And in a way it is. Venting is part of the healing process, no? But it's more than that. Because you know what finally helped a little, tiny bit? Acceptance. To just throw in the towel on trying to control the situation and researching every last detail. To just say this is my life and this is how Joel is for the time being and I am done fighting. Writing this all down feels like a pledge to just be vulnerable to the unexpected. Really this applies to all things about our children we aren't madly in love with. To take whatever happens and just roll with it. Instead of dreading and fearing every cry, counting every missed hour of sleep I would just think "I can get through this moment. I will find a way to deal with whatever arises." And one little moment at a time, even though I was (am) still tired as ever I felt the fog get a little lighter.
Then around the beginning of this year Joel started to sleep 3 hour stretches at night consistently. Not a vast improvement I know but it had to count for something. The only thing I was doing differently was laying him in his crib every single time he fell sleep. Even if it was for only 20 minutes I thought, then that is 20 minutes I will use to do something for me. No cleaning or tending to other kids, just only taking care of whatever needs I had been putting off for myself so far that day. By the time he was 10 months, he was starting to take longer naps in his crib. He will usually sleep an hour or maybe a little more if he had a rough night .
And now at 11 months, he can sleep up to 5 hours at a time. He doesn't do this every night and still this is nothing to write home about but it tells me he is able. Hope is in sight as he gradually progresses to a full nights sleep. I usually still wake up every 3 hours and pray that I can go right back to sleep. Most of the time I can, but sometimes I just have to get up because I think my body is just conditioned to waking so often. So I will wake before the rest of the house and have tea and write and do things that help my soul to feel rested even if my body is not.
So I don't have a happy ending where I tell you things are back to normal and I conquered the no sleep drudgery. I have no awesome advice or moral of the story. I will say that I have never valued empathy more than I do right now. Empathy is the one response I have received that makes me feel like I just want to say "thank you, you get it". When someone says "oh man I have been there" they help validate that his not sleeping is not a result of my failure to do something but that sometimes babies and life just throws you a curve ball.
I remember sitting in the chair in my room nursing Joel not too long ago listening the this podcast where this mom describes her sleep struggles. And I just laughed... and then I cried.. and then I laughed and cried at the same time. It felt like a small victory to have that reaction as I listened to someone say "me too." This mom talks about how sometimes we measure our mothering by how well our children sleep, which sounds silly to say out loud! But unfortunately I think it's true and I could write a whole other post about why it is and other cultural norms that we unnecessarily frame our parenting by. Suffice it to say while her experience was not exactly the same as mine, hearing her voice it and some of the reasons behind it just lightened my load. Revealing our struggles is empowering both for us and our witnesses. It gives them permission to do the same. Empathy is a powerful practice.
This was all over Facebook some time ago but in case you missed it:
::Brene Brown on empathy::
Thanks so much for reading and for being empathetic listeners ;)
Jenna
PS...If any of this post sounds even a little familiar to the season you're in or have experienced.. run to this post over at Sarah Bessey's blog: The Nightwatch such a beautiful, real account of night parenting with purpose.
