A season of grief

People talk about going through various seasons in your life and how they will eventually pass (which is true!) whether you want it to or not. The thing about grief is that it doesn’t pass until you join the one you’re missing. I am going through a season of grief, except this season will last the rest of my life. In the grand scheme of things my lifetime isn’t that long, but when you’re in the midst of it, it feels like an eternity. Thinking about the rest of your life without the child you love and fought so hard for is hard to grasp. There’s just something so unnatural about living without a piece of your heart.

I’ve never been a fan of winter. I hate the cold and lack of sunshine. This “season” of grief feels like I’m stuck in winter. Some days feel hopeless and dark, but occasionally the sun does shine. I know my grief won’t always feel exactly the same (it comes in waves and at times knocks you off your feet and drowns you). I know God has a plan in all of this; I know He has never left my side even as I walk through the darkest days; I know I will see my baby again. As the seasons pass I have fewer days that send me to the floor in tears, but it’s not because it doesn’t still hurt immensely. It’s because I’ve had to harden myself so as to not always feel all the pain that is ready to break out at any moment, and often without warning. I have learned to compartmentalize my feelings so that I can function and make it through another day without breaking down in public.

Grief sucks. It completely transforms who you are and redefines how you see the world.

You find that things that would annoy you before are “non issues”and not worth the time and things you could easily handle before become very overwhelming. I’ve made decisions that would shock the previous me!

As the seasons pass others expect you to be better and they look with anticipation when they ask how you’re doing, as if this time it’s going to be “great.” Someday might be a “great day” again, but it could be years before it feels that way. Until then I wait with anticipation and seek out the beauty God will bring out of the mess this world is. I’m not home yet.

Trying to be a light

What is it about light that mesmerizes us? I could sit and stare at a burning candle or a fire in the fireplace for ages. Addy loved being parked in front of the fireplace too and would become entranced by the flames. I’ve been reading a book by Patsy Clairmont called “Catching Fireflies” in which she goes into depth about all the different forms of light and their impact on us, starting with God saying “let there be light.”

There’s something about being told your child won’t live more than a month that has you desperately seeking a light in the darkness that seems to surround you. It only takes a small glimmer of light to give you hope. Because no matter how much darkness is around it can’t hide even the tiniest flame. I found my light through other parents who have gone before me with a child diagnosed with Trisomy 18. I find myself more in awe now of those who gave support and advice to me after their child died, because I find it extremely hard to do now. I jumped in all the Facebook groups and shared my experiences and knowledge I had gained while Addy was here, but now that she’s gone it’s harder to do. I guess I feel like my advice isn’t wanted or needed because I ultimately couldn’t keep my baby alive.

It’s really hard to be a light for others and provide some hope when it feels like your story didn’t end the way it should have. It’s hard to see others get the miracle you begged and pleaded for. It’s not that I want anyone to join the horrible club of burying their child. I want other kids with Trisomy 18 to beat the odds too and show doctors they deserve to be treated as any other child. It just brings about the questioning again when others get the miracle I didn’t get. But in reality I’m looking at it all wrong. I did get the miracle. God allowed me to love on Addy for 26 months and 10 days (plus a couple hours). According to the NICU she shouldn’t have lived past a month, but she did! It’s been almost 8 months since I held my silly, crazy, sweet, and giggly Addy Grace, and today is the first time since she died that I’ve shared a medical experience with a Trisomy group. It’s really hard to be a light for others and give hope if I don’t say anything.

“You are the light of the world. A town built on a hill cannot be hidden. Neither do people light a lamp and put it under a bowl. Instead they put it on its stand, and it gives light to everyone in the house. In the same way, let your light shine before others, that they may see your good deeds and glorify your Father in heaven.” Matthew 5:14-16

Then Sings My Soul…

“The Lord is my strength and my song; He has given me victory” Exodus 15:2

Addalyn was my singing partner; she didn’t care that mommy couldn’t carry a tune, she’d raise her voice with me and we’d sing every car ride and many times throughout the day, because life should be a musical. She loved mommy’s remixes and ability to find a song to fit any occasion.

Music has been a source of healing for me, but not just any music. I crave worship songs and any other christian song that expresses how I’m feeling.  I still enjoy an occasional secular song, but not as often as I used to.  Having my vocal cord issues has not helped (it’s not like I was a wonderful singer in the first place haha), but it also hasn’t stopped me from singing.  The speech therapist was surprised I could vocalize sounds with a paralyzed vocal cord and nodules on the other.  Apparently it paralyzed in just the right place for me to be able to vocalize sounds (it still cuts out randomly and I have almost no range , but a voice is a voice and I thank God for allowing me to keep it).

When I sing now it’s not just about the music or the beat, I connect and feel the lyrics I’m singing…it makes me cry at times (ok, pretty much daily), but it also makes me feel joy and hope for what’s to come, it also makes me laugh, oddly enough (mostly at myself and my voice being way off or completely cutting out when I’m trying to jam out in the car). I’m the one you can catch at a red light singing my heart out, and occasionally adding some moves, if needed. I need the reminders that others have been able to put into song. I have a pretty extensive play list right now that I listen to every day, but there are certain ones that I always have to skip through to find and listen to. The playlist that has these songs is still “untitled playlist” because I couldn’t think of what to name it…”life sucks?” “sing until it doesn’t hurt?” “make the pain stop?” there’s not really an appropriate name for it. I thought I’d share some of my top favorites, in case anyone else needs some songs to jam out to in your pain and remind yourself that God is good even though it doesn’t feel good at times.

Just Say Jesus by 7eventh Time Down

Press On by Building 429

Glow in the Dark by Jason Gray

Our God by Chris Tomlin

Exodus by My Strength and My Song

Stronger by Mandisa

Get Back Up by TobyMac

Diamonds by Hawk Nelson

Trust in You by Lauren Daigle

Wait and See by Brandon Heath

Eye of the Storm by Ryan Stevenson

When I’m With You by Citizen Way

You Carry Me by Moriah Peters

Praise You In This Storm by Casting Crowns

Even If by MercyMe

Keep Getting Up by Mandisa

Lions by Skillet

You Make Me Brave by Bethel Music & Amanda Cook

Where I Belong by Building 429

Move (Keep Walkin’) by TobyMac

Make a Way by I Am They

Old Church Choir by Zach Williams

Promises by Sanctus Real

I’m sorry if your life sucks right now too, but this too will pass (and sometimes it might not pass until you leave this earth). In the meantime, crank up the music and make a joyful noise with me (mine is definitely a noise)!

 

Happy New Year?

It’s hard to see the happy in the year to come. I will be starting a new year without my baby girl, and I just don’t want to. Too bad I don’t really have a choice, life goes on and so must I. Looking back over 2017 overall I’d say it’s been the worst year of my life. It started out amazing with Addy turning 2 and me having more time to spend with her (I only worked two days a week). But May 21 is when that all came crashing down and my world has forever been changed.

I worked so hard to find all the doctors who saw value in her life and would fight for her with me, I found the best pediatric therapists who came 6 times a week to help Addy with her development, I found a job that allowed me to spend more time with her but still help us stay afloat, I developed a system for giving Addy a blended diet with very little support from her dietician…except I didn’t really do any of those things. I thought I was in control of so many things and that I had figured out how to juggle it all (pretty much on my own). But all of that gave me a false sense of security that I was in charge of what was going to happen. That doesn’t mean I didn’t give God any of the credit; I thanked Him every single night as I lay in bed listening to her breathe (or talk and laugh) until she fell asleep. I know God has always been in control, but when you take on so many things, at times you feel like you’re in it alone and you’re the one in charge of what’s going to happen next. I’m thankful Addayn’s death was not a surprise to God, even though it was for me. I can’t imagine living in a world where things take God by surprise. I know He can and will use this heartache.

As we enter 2018 I’ve decided to make some resolutions (I’ve never done that before!). My overall resolution is to be healthier. I want my relationship with God to continue to grow and be healthier than it ever has, I want to keep working on a healthy marriage, I will not commit to any weight loss but I will commit to running again (when it’s not freezing cold…I did 6 miles a few days before Christmas and the cold front came in) and eating healthier (that’s vague on purpose haha), and I need to be healthier mentally and emotionally (that’s where this blog comes into play…it will help me get things out that I need to) and by finding ways to serve others so I’m not focusing on my own grief all the time. Im not looking forward to a new year without my Addy Grace, but I am looking forward to seeing all God has in store for me this year.

“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”

‭‭Jeremiah‬ ‭29:11‬ ‭NIV‬‬

Not sure what I’m doing

I’m an introvert. If you know me personally, this isn’t a big shock. I don’t talk much to those I don’t know well, and I prefer not being around crowds. As I’ve been facing this nightmare of figuring out how to keep living without my baby girl I’ve found that expressing how I’m feeling has been helpful. I’ve also found that I’m not good at writing in a journal (I’ve done it off and on since she died in May), but I can sure write some lengthy Facebook posts. Haha. So, instead of long drawn out posts that most people scroll past anyway, I’ve decided to write a blog. If nobody reads it, fine, but it will be an easier way for me to get out what I’ve been holding inside, and maybe help someone else experiencing the grief I am.

Grief is now a part of my daily life, but so is laughter. Grace is what keeps me moving forward in this world full of pain and heartache, knowing it will end. Lightning bugs are a reminder that we are all here for a short time and our goal should be to shine bright, to give hope when it feels hopeless. (A little explanation behind the seemingly random name for my blog).

As I enter into 2018 I will share how I’m surviving with a piece of me missing and hopefully share some beauty that I long to see rise from the ashes. God is good and His plans for me are perfect.