SIDS

My Battle With The Beast

2018, faith, grief, loss, Toby

August holds my fear. It holds my happiness and feeling of wholeness. August is where ‘who I was’ lives and ‘who I became’ appeared. August holds my sons last breath. It holds my whole heart. August holds captive my sons future and every motherly wish I could ever have for him.

As I stand on the doorstep of another anniversary, I have started to wander into the past, hoping to pull with me each and every moment, no matter how significantly small, from our final weeks with Toby. But, as it does in a grievers soul, the terrifying fear and stillness, that lives inside the 24th of this month; the demons that guard the door back into my life two years ago growl and snarl looking directly into my face, almost taunting me. “Come in. Step through that door again. You think you have more armor, better armor, this year? Give it a try.” Taunting me.

There have been moments over the past few weeks when I can feel the anxiety of battle manifesting in my bones. Like my body knows what’s coming, but my mind, it is trying to focus. Realign. The ache inside my bones. The heaviness inside my arms – 9lbs of happiness, to be exact, it’s there. I feel it. My heart beating so fast in my chest, I am afraid that because it is shattered it’s going to break lose inside me and I am going to lose the little pockets of hope that I have been digging for, forever.

Have you ever thought about your heart? I don’t mean what the science tells us. I mean really thought about how big our hearts get when they are filled with love – real love?

How do our hearts get that big?

It’s almost as if the happiness, joy, thankfulness, wonder, awe, pride, excitement – it all seeps out into our pours and tells us “This is happiness. This is what you were made for.” Have you felt that?

I have. I did. Two years ago. Toby was 12 weeks old. I was in the car. Sitting at a stoplight, talking and singing with Luke. I sat and watched both of my boys in the rear view mirror – Luke laughing and Toby looking across the back seat at his brother with curious eyes. My heart swelled. I looked at them and thought “My God. They’re so beautiful. I am so lucky to be their Mom. I couldn’t love them more.”

I am caught in that moment. That was the morning of August 24. Those were the final moments I had with Toby before I dropped him off for work.

How in Gods name could I have left him that day and not known how our lives would change?

I can still feel that feeling, except now when it comes over me, tears flow from my eyes so heavily and they don’t stop for a very long time. My breath is sucked out from within and I can feel all the brokenness inside me.

That’s where my happiness lives – inside the early hours of August 24. When I thought I was living my dream. What I had prayed for, longed for, worked for, wished for – my whole, beautiful family. Literally my pride and joy. Were right beside me and in an instant, gone.

That is also where the deepest pain and sorrow, pain I didn’t even know existed, came alive. It was awakened. Its rumbling that day, its pressure to get out of those places it was locked in, and melt my soul, it succeeded.

That pain is like lava, it is so fiercely hot, paralyzing, it melts every other feeling away. It turns every feeling to stone. It molds your heart into a shape that is unrecognizable and also leaves you feeling just the same – “Who is this? Who am I looking at? What did we do to deserve this? Where is my life?”

“Where is my son?”

August is my month where all these demons come alive. It is the worst month of the year for me – where I have been climbing to get to for 24 months has to wrestle with the Devil and where he wants to drag me back down to. Where my faith is tested every second of the day and where the pain of becoming a grieving mother never dulls.

Pray for me, as I go to battle with this beast. Remind me, in any way possible, that our beautiful Toby is still alive inside all those million pieces that my heart has been broken into. Show my family his love and joy can make a difference in someone’s day. Those are what I arm myself with as the knob turns to open the door on this horrific month.

August holds my son & my heart.

God help this broken mother make it through.

PSA: Spend the Money. Buy the Owlet.

2018, Creating Change, Family, grief, loss, Parenting, The Little Fox | Toby's Foundation, Toby

Over the past week, I have been asked multiple times about the Owlet Baby Monitors.

  • Are they worth it?
  • Should I spend the money?
  • I’m on the fence about this monitor, but…

What is unspoken is the BUT in each of these instances.

  • But, I don’t want to have to worry about my infant while they are sleeping.
  • But, I don’t want to have to continually check if they are breathing.
  • But, I don’t want to have additional anxiety overnight times or naps.
  • But, I don’t want to be you.

I don’t take offense to that last statement.

Believe me. I don’t want to be me either. Every morning I wake up and look at Toby’s face on my nightstand, instead of going in and getting him out of his bed. Every day I put shoes on one child, instead of two. Every day I drop one little boy off at daycare, instead of both of my boys. Every night we pick one set of books to read before bed, instead of having to compromise on two books for two little boys favorites. And, every night we say prayers and we have to tell Toby we love him without seeing him and “We hope you had a good day in Heaven.”

No one wants to be this mom. This family. No one wants this life. No one.

Yes, the Owlet is expensive. But it could alert you and tell you if there’s something wrong with your infant.

Yes, $300 is a lot of money. Owlet offers payment plans if you cannot purchase in full. They have also worked to accept FSA’s through some provider’s health plans across the US. If you don’t know if yours will cover it – contact Owlet and ask. 1-844-334-5330.

From a family who has done the whole shower/registry list – if you are contemplating placing one of these monitors on your list of needed items – do it. Skip the swing or the bouncer. Family and friends are more likely to purchase one of the more expensive items because these are normally must-have items for a baby. The Owlet Smart Sock is a must-have.

The Owlet is able to tell you heart rate and oxygen levels; sleep trends; red notification reports to view and talk with your doctor about what led to the red notification, and all of this data can be instantly shared with your family or doctors. Every single day.

Yes, they say that the first three months of an infant’s life are the most vulnerable. The Owlet can be used up to 1 year old – imagine not having that anxiety for 12 months.

 

We have spent the last month talking to a number of daycares in the Pittsburgh area who have never used a device like the Owlet, but are open to the conversation and once they have learned what it can offer their families and staff that care for infants each day, they are receptive to having these in their programs. This is another step in offering families “peace of mind” when they have to leave their little ones each day and go to work.

The Little Fox – Toby’s Foundation will continue to push this conversation and the importance of using this monitor with your infant, starting right here in the Pittsburgh area. That is part of our mission – to promote Safe Sleep and to educate others about safe sleep practices and the tools available to families to try and prevent a SIDS death.

This is our mission because this is our life. Toby may have only been here 12 weeks and 5 days, but his life and his memory will make a difference to the lives of others. I know our son’s impact is far from over and as grieving parents, it is our job to keep his memory alive and help prevent our grieving parents’ circle from getting bigger.

If you have questions about the Owlet or any of the organizations across the US that are partnering with Owlet, like The Little Fox – Toby’s Foundation, please contact us. We would be happy to talk with you about the device and any open application calls that we know of to possibly receive an Owlet for your family for free.

thelittlefoxfoundation@gmail.com

www.thelittlefoxfoundation.org

 

If you need confirmation from someone else on the importance of this device, check out Jessica Alba’s interview with InStyle Magazine on Parenting Tips – skip to 1:36.

https://www.instyle.com/videos/jessica-alba-parenting-tips-breast-pumping

21 months & Lots of Prayers

2018, Creating Change, Family, grief, Joy, loss, The Little Fox | Toby's Foundation, Toby

Guys! It’s official – The Little Fox | Toby’s Foundation is incorporated & approved! 🦊

In just two weeks time all of our paperwork was reviewed and approved. We were told to not expect anything for 6-8 weeks. As soon as I started to read the letter last night I thought “This is all Toby’s doing. He’s opening doors again!”

He knows his momma and she can’t wait for anything, especially when there’s work to be done, families to help, and lives to save.

I laid down with Luke at bedtime last night and as we said prayers, thanking God for another step in this journey, and saying goodnight to Toby, this came through my thoughts…

“Get some rest momma. We have lots of work to do.”

By God’s hand and Toby’s guidance, we’re going to make a difference with The Little Fox. There are many hopes & dreams for this nonprofit and our plan is to take it one day at a time. There will be opportunities that are a perfect fit and others that will not work for us. We will do our best to make the right decisions and help as many families and children as possible.

Thank you to every single person that has helped us over the last 21 months. Without the support, comfort and encouragement of our family, friends, neighbors, community, local businesses, other grief families, other memorial foundations, doctors, Owlet, and every anonymous, kind hearted person that has found a way to touch our hearts and to help our family – THANK YOU!! We would not be here, if it weren’t for all of you.

Stayed tuned to see what we’ll be working on next. We’re currently matching donations for the Owlet Smart Socks in the Pittsburgh area to be donated over the next few weeks. Then, our focus will turn to August. With our Foundation Board established, we’ll be working together on an event for August where we hope to see many of you. We will also be doing our “Random Acts of Kindness” campaign, which will kick off August 1. We hope to see as many participants as last year and see the ways that Toby’s joy can travel around the world.

Please keep our family in your prayers as we approach Toby’s 2nd Birthday on May 27. This does not get any easier as the months go by. Our hearts remain broken, missing Toby beyond belief. We know the best way to honor our son is to help others and share the joy that he gave our family with those children and families. That is what we are doing and will continue to do.

God Bless,

The Sterns ❤️

#thelittlefox #joyfortobystern #SIDS #journeythroughgrief #august24 #ourangeltoby

20 Months of Emotion

2018, Family, grief, loss, Toby

When I first started my professional career I told my mom, “I’m going to have my own company in my 30’s.” I wanted it to be a combination of marketing and community involvement. I never could have predicted that my company would be founded in memory of our son. We never could have predicted how August 24, 2016 would alter our lives. We could have never imagined the impact that Toby’s life would have on so many people and families.

We spent most of today going through legal steps for The Little Fox. We made phone calls, wrote emails, looked at other fundraisers, researched contacts to connect with to help with the mission of Toby’s Foundation. There is joy in seeing milestones completed and seeing an official starting line for this project that we’ve been working on a mere weeks after Toby’s death. There is also an overwhelming sadness that can creep in. We wonder “why us?” “Why Toby?” “Why can’t we trade it all to have him back?” There are no answers, but that is grief. Especially over the loss of a baby.

We went to visit Toby today. We stood at the foot of his grave. It was windy, raining, and so gray. I stood there staring at his stone, but I couldn’t feel anything else. I felt like I was watching us from afar. There was no sound. Over and over in my mind…20 months. 20 months since this cemetery became part of our weekly routine. “I really cannot believe this is our life,” I said out loud. Dan just looked at me and squeezed my hand.

Instead of taking a day off work to take our two boys to the Zoo, the Science Center, the park, our time now is spent visiting our youngest son, at the cemetery. Bringing flowers or crosses, cleaning his headstone, talking to him while we cry.

It is unbelievable. The way our lives and our family has changed since August 24, 2016. 20 months of heartache. 20 months of wondering what Toby would look like now, what words he would know, what his favorite book would be. 20 months spent trying to live each day to the fullest, because we have experienced exactly what it means to not know “when your time on earth is done.” 20 months of trying to make a difference through Toby’s memory in the lives of others. 20 months of missing my son more than any number of words could ever express.

Third Star To The Right

2018, Family, grief, loss, Toby

Today marks another month without our son. It marks more milestones and brings with it more triggers – second spring break trip; first trip with the kids to DC; laughing with cousins and pictures where Toby’s always missing.

Luke reminded us multiple times today that you are here with us and there have been little signs while we’ve been away that tell us you’re never far away.

I sat on the train on our ride back today, listening to Luke tell us his favorite parts of the day and I just kept thinking “Would you have liked that? Would Toby be sitting on my lap looking out the window? Or sitting next to Luke watching him battle super hero’s on his table?”

I don’t have many words today. Other than, the pain is horrible and I’m convinced the constant loneliness I feel cannot be filled or replaced. No matter how much time has passed or how many stars we wish upon.

We were at the Smithsonian’s Air & Space museum today and in the planet exhibit a photo of the solar system caught my eye, but it wasn’t the planets, it was the stars and how vivid they were on the wall that made me stop and look at it closer for a moment.

It made me think of Peter Pan and I walked away thinking “I wonder what star you are?”💫

Learning to Live

2018, faith, Family, grief, loss, Parenting, Toby

Life is hard. Grief is harder. It gets worse before it gets better. This makes everyday challenges & situations sharper and hard to not take directly to heart. I look around the world some days and then I look at Luke and think “Am I doing this right?” Honestly, some days I’m not sure.

My heart has been very heavy lately. Some days I feel like I’ve been pulled back into the first few weeks without Toby. It’s scary. It’s sad. It’s heartbreaking. There have been a few days that I’ve felt so consumed with grief that I questioned how I have made it for 18 months. I don’t know. I don’t know that I ever will.

I sat on the floor the other evening after folding a load of laundry, with Toby’s picture book in my lap, crying. Crying because I didn’t have laundry for him. Crying because in 18 months I haven’t opened the drawers in his room, except for once. And the one time that I did, the sight of clothes he never got to wear and the smell,his smell, made me so ill I shut it and haven’t dared open it since.

I cried for at least a half hour. I could physically feel pain inside my chest and the tears on my face. It hurt, but felt like my body was unloading emotion that I couldn’t hold anymore. I’ve had so many of those moments since this year started.

When this year started I promised myself I was going to try a few [different] things to try to manage my grief. I started to read the Bible. No specific book or part, just random, open up and start reading. Yes, of course, I am searching for something in what I’m reading; some sign of Toby; some direction for our family’s path; some sign that God has a plan for us. Something.

To be honest, I don’t always find that. But, on the mornings that have followed, there have been devotions in my prayers for things that are not among my daily thoughts or things weighing on my heart. I don’t have a sure sign of where they come from, but I am starting to think that maybe it’s God’s way of using my pain.

There is a spot in the events of the day that Toby died that causes me so much pain. This spot is a place, outside our home, that I have to see and face daily. And everyday I sit there, with the heartache, the pain, the death of my son, staring back at me. I’ve succumb to its presence in my daily routine. Some days I cry. Some days I stare. Some days I have to close my eyes and remind myself to breathe because PTSD kicks in and the sounds all come rushing back my head. Some days I stare, as I sit in my car by myself and say “Why?”

About a week ago I was near this spot and the one thing, the one physical thing that always brings the emotion back, had been blocked, by a pile of dirt. I looked at it and was genuinely surprised that the pain that I expected to feel, that I felt daily, wasn’t there. “Huh.” I heard myself say. “A break?” I was asking God.

We all have those moments. Those moments when we plead with God for a break. Or a sign. Or an answer. When we’re in the midst of frustration or disparity. When we haven’t had a day go right.

These moments are more devastating for a grieving parent. These moments are faced with unending questioning of how strong we are; how much we can handle; how misunderstood can we be; how rude and uncompassionate people can be; how quick to judge society is; how much more can our heart break; before enough is enough. It is a continual test, to which the answer and the Judge is not in this world.

I have a lot to learn in life. Some things, through the years. Some things, through experience. Some things, through prayer.

A lot of the weight I am physically carrying is because of fear.

Fear of no control.

Fear of the unknown.

Fear of my heart not having any more ways to break.

Fear of not being able to save those most important to me.

Fear that I may forget. Forget anything.

Fear of disappointing my parents, or worse, my children, because I’ve been so handicapped by grief that I can’t give it my all.

These are all worth fearing, but do you know the ultimate fear of a grieving parent?

Fear of what will never be.

Fear of having to carry that pain – every.single.day. – for the rest of my life.

There is no “getting over” the loss of our son. It pains me that anyone would even think that would be possible for a parent or family dealing with any kind of infant or child loss. There is no timetable for grief.

What I’m struggling with is learning to live with grief and without Toby.

God’s Timing

2018, faith, Family, grief, loss, Parenting, Toby

I lay in bed last night listening to the rain on the windows of the house. The wind blew so fiercely it felt as though it was something swiping through the air, grabbing, lifting whatever it could – then it was gone. I listened to it for a few moments. It happened two, three, times. It felt like I was having a déjà vu moment. I closed my eyes tightly trying to recenter my thoughts, away from the weather outside, then the rain hit again. When I opened my eyes, it hit me. I hit the home button on my phone and Toby’s smiling face appeared; I scanned to the date – the 23rd.

17 months ago Toby was asleep in his crib. 17 months ago this morning I could have looked at him on the monitor and he would have been right there. 17 months ago I could have walked down the hall ten steps and been standing over him. Today, if I walk 10 steps, everything’s still there – except Toby.

For the past 17 months I have honed my “selective hearing” powers. Although well intended, more often than not, a cliche phrase hurts me, more than someone saying nothing at all.

He’s in a better place.

God needed another angel.

Everything happens for a reason.

God never gives you more than you can handle.

…Yes. Yes, actually he can. He did. I was given more than I could ever possibly handle. Our son was given to us – healthy, beautiful, thriving, sweet, handsome, funny, loving – absolutely perfect. Exactly what we prayed for. Then, after 12 weeks and 5 days on this Earth, in one strong swoop, like the rain/wind last night, he was taken from our arms and given his wings.

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It rained the night of August 24. I remember sitting on our living room couch, staring at the wall, listing to the rain. It was pouring. I literally could not wrap my head around what was even happening. I thought “Why would Heaven be crying? They gained the most beautiful angel this evening. They have Toby – why would they cry?”

I’ve had many different discussions with people over the last 17 months having to do with our control in life. My realization thought 17 months of grieving the death of my son – we have no control.

We can do everything possible. Reroute our days; change our schedules; plan for everything; stress over the ‘What if’s?’ It is not in our control.

Matthew 24:36 says:

“But about that day or hour no one knows, not even the angels in Heaven, nor the Son, but only the Father.”

We think that we have time. Time to get healthy. Time to take a trip. Time to move across country. Time to take a job you’d never considered.

We think that we have more time. I’ll call my parents tomorrow. I’ll apologize in a few days. I won’t say something like that next time. I will stick up for them (or myself) next time.

What if there isn’t a next time?

We are on God’s watch. Here on Earth.

During the first few weeks after Toby died I walked around in a fog. I’d replay moments in my mind and guilt would set in – What if I didn’t do enough for him? I’d literally drive myself into a paranoia. Until one day, I was so deep in grief and angry with everything and everyone. I stood in our empty house, at Toby’s crib, with my hands gripped on his bed rail – yelling anything and everything to the Heavens.  “Are you listening? We are good parents and we love our boys with every breath we have.”

I sank to the floor, crying, repeating “Why did you take him! I don’t know how to do this without him! I can’t do this without my son!”

This dark day forever changed my relationship with God. No, I did not receive an answer from Him. I will not have an answer until the day I stand before his thrown, Toby in my arms. I have accepted that. I have not yet accepted His timing. I have not fully placed my trust in His Plan.

This is what I am working on.

There have been numerous times over the past few months where I’ve veered off course. My light has gone out and I’ve had to stop and re-center my thoughts. Sometimes this takes days. I deal with anger, despair, loneliness, emptiness. It is very heavy and dark. But I fight for the light.

We were having a really hard time a few weeks ago. I cried every day. I withdrew from anything that wasn’t necessary. I felt like I was sucker punched with another round of grief. I was fighting for light. I stood at our kitchen sink looking out the window. The ground was blanketed with snow. The sky was grey and I thought “This looks like my life. I never thought this would be my life – no color.” I blinked and to my amazement, right down on our fence post sat a cardinal. There it was – my light. I’ve held onto that moment for the past few weeks – it’s been my center. I am waiting patiently for the Lord. I am working to be brave and courageous.

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To our sweet Toby – I hope your days in Heaven have been beautiful. For every day that passes, I am one day closer to seeing you again. You are our light and Luke is our rock. I will never have a prouder moment than being your and Luke’s mom. I love you to the moon and back, baby boy.

Xoxo,

Mommy

 

“Wait, my daughter, until you learn how the matter turns out.”

—Ruth 3:18

18 Month Milestone

2017, Family, grief, loss, Lucas, Parenting, Toby

To our sweet boy, who would be 18 months old today: my mind lately is continually trying to visualize what you would look like today?

I look at Lucas from that age and wonder, ‘would your hair be as straight? Or as blonde?’ I doubt it. I think you’d look very much like Daddy with darker hair and eyes. Sleeping is becoming hard again. I feel like it’s my body trying to adjust to a routine that we should be in, but we’re not, because you’re not here. I keep waking up in the middle of the night and then I’m awake for an hour or so. Staring through the crack between the window and the blind, wondering what you’re doing.

The past few evenings I wake up from a dream I’m having, although I don’t know what I’m dreaming about. My eyes seem to be slightly open and there’s flickering light but when I open them, I’m wide awake and it’s pitch black. I’ve convinced myself that it’s you and your angels visiting us in the night. I wish I could open my eyes quick enough to see you.

We’re working on getting the house ready for Christmas. I wish you could see it. Luke loved the lights when he was one. He’d sit and laugh looking at them. Everywhere I go I see fox ornaments. Aunt Megan said the other day “I’m not sure if they’re everywhere or if we just find them because we’re looking.” I feel the same way, but again, I’d like to think they’re little signs from you.

Daddy, Luke and I miss you, Toby. This really isn’t getting any easier. But we are trying. I look at pictures of you smiling and close my eyes, hoping I can still hear you laugh. Your laugh made my heart flutter and it made Daddy laugh, too.

On the way to work this morning, Luke said “We’re going to play baseball and Toby and I are going to win the trophy. No one else.” I’m sure you’ve heard us tell him that he can’t always win and that he’ll always have teammates. But, this morning, I said “Good. I like that plan.” My heart hurts knowing how much he misses you and knowing how much fun you two would have together. If you can, maybe visit Luke in his dreams. I know he’d love to run the bases with you, Toby.

Daddy and I will stand at home plate to high-five our boys as you score the winning runs.

Happy 18 months, baby boy.

I love you.

Mommy

My Faith in God

faith, Family, grief, loss, Marriage, Parenting, Toby

This has been a difficult week for our family. Grief is hard. It’s exhausting. It comes from nowhere. No warning. And it stays, for as long as it likes. You can have a good moment and the next you are crying. That happens with me a lot. Your body can ache from the physical pain of grief, not just pain from your heart.

We pray for strength. We pray for understanding. We pray that Toby sees every tear that we cry, not because we want him to see the pain – there is no pain in Heaven. Our prayers are that he see the love. The love that comes with every break of our hearts and every tear we have shed over the last 14 months.

I am sharing this because we have said from the beginning that we want to educate people on what it is like to be grieving parents. To have our infant son, die. This is what it is like.

 

Image may contain: grass, plant and outdoor

Today I read a post from another grieving mother reflecting on what she feels when she visits the cemetery. She talked about experiencing peace and a connection with being there with her child. I envy her perspective. I envy this amazing trust she seems to have in Gods plan.

Today, while it started off well, quickly turned difficult. My arms ache to hold Toby, to hear him laugh with Dan or Luke, to feel his hair and see his bright blue eyes.

I drive home past the cemetery most days and most times I need to stop. But today there is more anger here. I hate that the ground has fresh cut grass – that reminds me of how long it’s been since we buried him. I hate that the leaves are falling – a reminder of a season that I used to love, but now holds my broken heart. I look at his stone and want to pull his name from the marble. I don’t want there to be an end date etched in there. I don’t even want to be here. As I start to descend over the hill to this hand-picked spot, I can’t make it past the last stone before his, before tears stream down my face. Every time.

I want to have faith in God’s plan. I want to have joy in knowing Toby is in Heaven walking in His Kingdom. I want to take heart in knowing that he felt no pain – that his heart will never break, like mine or Dan’s.

But as a grieving mother, sometimes my faith in God is shaky. My vision in his goodness is blurred by days of tears, wishing for my Toby to be back here, on Earth, with us. Sometimes, even falling to my knees to pray, my heart still feels heavy and my arms empty when I get back up.

——

 

Do not be afraid to ask about Toby. Do not be afraid to ask how we are feeling. And also, on a day when we may not want to talk, please understand and do not hold it against us. You do not know what we are struggling with. You do not know the memories that are flashing through our minds. We understand that too. We only pray for patience, consideration and respect.

We are parents of two beautiful boys, who are our world. They are loved unconditionally and they make us very proud.