A Tribute To A Great Man

Uncategorized

Our family lost a great man this weekend. After nearly 4 years of battling ALS, my Uncle Tommy took his walk into Heaven.

Uncle Tommy was a kind and happy individual. He was always smiling and when he laughed, you couldn’t help but laugh with him. He was always one to be doing something – fixing or constructing; quad riding on the weekends; playing volleyball and just enjoying life. 

He loved his family – Aunt Denise, Shawn and Brit. His brothers and sisters. He loved his nephews and nieces like they were his own and he was always excited to hear what was happening in our lives, even as we grew older.

Tom was a Steamfitter and was proud of the work that he did and who he worked with. We used to talk about construction projects in and around Pittsburgh. When I told him something our team was working on he’d always say “No way? You guys are working on that?” while he grinned and shook his head. Happy for me.

Uncle Tom loved the beach. Cape May was a special spot for him and we spent many summers there growing up with our extended family. He loved to be out in the sand playing Frisbee or even throwing bags with the guys. Soaking in all the sun and time with his family. I am glad that my husband Dan and brother-in-law Kyle got to experience that special place with him, too. 

When he was diagnosed with ALS no one could believe it. Tommy, the one who was always on the go; always active; always instigating someone to make the group laugh – diagnosed with a disease that literally stops people in their tracks. We all had to know that he wouldn’t go down without a fight or a smile. 

That’s exactly how he was. Every time he had a setback, he and Aunt Denise always found a way to make it work; make him comfortable; and keep him at home.

On the visits when it was warm, you could find him on the deck. “Yeah, Denise moved me outside so I could enjoy this sunshine and warm weather” he’d say with a smile. What an example he set for all of us, that even on the bad days, there’s a way to find sunshine.

The last time I was there to visit him, I brought Zeke. Aunt Denise was so happy to see him and brought him into Uncle Tommy and he laughed and said “Look at all that hair! He’s beautiful!” I cried standing next to them, watching as Aunt Denise held him on Uncle Tommy’s chest so he could talk to him and give him a kiss.

We talked that visit about life and grief, heaven and God. I asked him how he felt and how he managed to be so upbeat and what he said to me, is something I’ve replayed in my head nearly every day since.

“I talk to God and pray. I have a lot of time to sit here and think and look out the window. There’s a lot we won’t ever have answers for Kate, but we have to have serenity and be thankful for what we do have.“

What a way to look at life and what a strong faith in God and a plan not visible to us.

His daughter Brittany got married, in their home, nearly a month ago. Shawn, her brother, married them. Looking at photos, Uncle Tommy looked happy and brighter than he had seemed in months. I smiled looking at pictures from that day, seeing the happiness and pride on his face and seeing how happy Aunt Denise looked to have everyone home and all together.

Uncle Tommy, Mom, Aunt Jamie, Uncle Ron, & Uncle Jeff at my cousin Shawn’s wedding in August 2014

These last few weeks he was tired, but still “with it” when it came to talking with everyone. My mom and Aunt Jamie told me how he talked about “seeing Daddy” with him, as well as others, on certain occasions. When he started to tell my mom about his experience, she said “I know” and he said, “Did I tell you? How do you know?” “No, Denise told me when I came in,” she said.

“Denise! Denise, what are you doing telling everyone? What are you, like, the internet?” Everyone laughed, including him.

I was amazed and proud of how open he was about what he experienced and what he saw. As he spoke about having – he was given serenity in his final days.

I am very proud of Uncle Tommy, in ways words can never express. We all are.

We were downtown for a race Dan was running with his students on Saturday morning when Mom called. I was with the boys and we were about to cross the Clemente Bridge. I had checked the weather before we left home and while rain wasn’t in the forecast, the skies were filled with grey clouds. I talked with Mom for a few moments and then started to walk towards town. I stopped on the bridge to look at the City of Pittsburgh skyline and the ballpark and as I stood there, the sun started to come through the clouds. I was thinking, how fitting that the Pittsburgh Marathon was happening this weekend. Uncle Tommy had run his marathon and crossed the finish line, with Pup (his dad) holding his hand and taking him home.

I just keep wondering what Uncle Tommy, Pup, and Toby are doing now? My son now gets to share his days with two of the best men I was blessed to have beside me as I grew. I really hope they’re all sitting with their toes in the sand now, laughing.

Notes to My Younger Self

2019, Family, Home, Joy, Marriage, Parenting

I wish I could go back, 10 maybe 15 years, for a lot of reasons, and teach myself a few lessons for the road ahead.

Pray more. For others. Pray for people that hurt you. Mentally, emotionally, intently, unintentionally. Just pray.

You don’t have to pretend to agree with anyone. You are entitled to your opinion. That doesn’t mean you have to be rude. We all have differences. That doesn’t make it wrong. As long as your opinions or beliefs are not hurting someone, have them. Own them. Be proud of them.

You will go through pain in life that you never could expect. Don’t close your heart from it and also don’t be ashamed of it. We all go through pain. Some people’s pain we see; we know. Others, we often have no clue. But I know when my pain is the most raw, the last thing I need is someone to treat me like I don’t matter. That’s the worst. So don’t do it to others.

You really will find a whole new level of love when you have children. I could write a book on the things I’ve learned about love and pain since I turned 30. Be ready for the love – and heartache, that comes with parenthood.

When you do become a mom, your heart will change. You will find your focus hones in on little faces that remind you so much of yourself, but also have their own personalities, that couldn’t make you prouder.

Just like you may not be someone’s “cup of tea” your children may not be either. This hurts and is so hard to let settle. Maybe don’t let it settle? But, also don’t let it eat you alive. Protect them. Be in their corner. Be their biggest cheerleader. Love them. Tell them – even if they say “you told me that already, mom.” Tell them again. There will come a day when they need all that love and need to remember how much you said it to them.

Even in your 30’s – adults can be mean. They will be mean. All that “stuff” doesn’t stop because you left high school. And you know what, sometimes, it hurts more than you think it should. No matter what you do, you can’t change people. You can however tell them they hurt you and then, walk away. You will feel better.

Stop apologizing. I am not telling you to be oblivious, but if you genuinely know what you’re doing is right, do it. And don’t apologize.

Your parents won’t agree with everything you do in life. And they will tell you that. But, the moment you make your own decision and tell them your “why” they will see that their hard work paid off. That you listened to them, even when they thought you weren’t. And even if you fail, you are still ready to own it. This only happens 1% of the time. Be ready for it when it does.

Give someone a pep talk (even if it’s yourself). Tell them what they’re doing right. Write them a card – just because. Recognize their “give” so they don’t miss it to.

Friends will change. Your circle will evolve, grow, shrink, look really different. This is not a bad thing. All that stuff I said above? It changes who you are and who you will need and want around you. Pick your tribe, circle, framily based on your heart – not on others and not on society. You will be so thankful for that later.

Don’t be afraid to guard your family. This may seem odd, but let me explain. Your children need someone to stick up for them, until they can do it on their own. If they can do it on their own. Be their voice when they need you to be. And don’t let bring you down. Secondly, guard your marriage and/or your relationships. This is hard. It often takes a backseat to your children and it should, but that does not mean it should sit on the sidelines for 18 years while your children grow. It also doesn’t mean that it’s ok for people to take advantage of your vulnerability or weakness. That is just plain wrong.

Pray. Didn’t I mention that before? Pray at night. Pray in the morning. Pray in the shower. Pray on your way to work. Pray with your kids. Pray with your spouse. Pray, more than just when things are bad. You will see a difference in your outlook on life when you pray.

Listen. You don’t always need to respond to something or someone. Sometimes we just need to listen.

And just when you think your heart couldn’t get any bigger – it will. Adulthood brings a lot of emotions and experiences, but it can also bring more growth. Don’t be afraid to grow.

You know the song “Momma said there’d be days like this?” Yea, there are a lot of them. But, there’s also a lot of good.

Find it. Be it. Spread it. Give it. Teach it. Acknowledge it.

ENJOY it.

The Path of Transition

2018, Creating Change, Family, grief, Joy, loss, Parenting, Toby

I’ve spent the last week swimming in baby items. Most of which were Toby’s. The switch over of the nursery has hit me in waves. I feel joy & love in my heart in places that have been so broken and painful for 25 months, it scares me. Then the pain begins and the tears fall while every sense is engaged by grief – my eyes see flashbacks to certain moments when Toby is right with me; I can smell him when drawers are opened or blankets are moved; the sound of toys that jingle or crackle take me back to the 2am feedings where he would be wide awake and the happiest baby, just wanting to laugh and watch you talk to him.

I can’t make it through a day lately where I don’t have a huge breakdown, missing Toby and wondering how on earth am I going to be able to mother our third little boy without constant fear?

I’m not sure there is an answer, enough therapy, or strong enough medication to take away the fear.

Yesterday I pulled the car seat from the basement. It was buried in the corner of the room where items that needed to be gone from site were placed two years ago. It had never been cleaned. The interior inset had spit up on it and smelled moldy & musty. Toby’s frog toy still hung from the handle. When I pulled at it, it rattled back to the top. I imagined him laughing, watching me, even though I was crying.

I spent an hour last night pulling the whole thing apart. Shouting the entire inside before placing it in the washer. I wiped down the straps and placed them in hot water to soak overnight. But I couldn’t stop thinking that this was the last place I saw my baby boy. He was in his seat, happy as can be, when I left him that morning. That evening, we brought the empty seat home. And Toby never came home.

I pulled the insert out of the washer this morning. Clean. Smelling of detergent. No sign of the marks that were there last night. Those pieces of Toby that had been there for two years were gone. I was mad at myself for cleaning it, well knowing it had to be done, but wishing to God the pain could have gone down the drain with all that other muck.

I put it all back together and brought it upstairs, setting it in the stroller in the living room. I sat on the piano bench and stared at it for a few minutes, tears welling in my eyes.

There are many days lately that I can’t believe how close we are to having our third little boy home. How quickly it went. How some days it doesn’t even feel real. Being on the cusp of 30 weeks pregnant and after doing this two times before still feeling like, “Am I ready? Can I do this?”

It’s that motherly fear.

It doesn’t go away. It manifests itself in different pockets of pregnancy and the newborn stage. We’re all afraid of something. If you don’t think you are then your lying to yourself. No one knows how to do this. No one does it perfectly. The grass is not greener on the other side.

Maybe you’re just getting more sunshine that day?

Did you ever think about it that way?

I didn’t until lately.

Through continual prayer, novenas, and the help of Toby from Heaven, I’ve been able to walk through the last few weeks, grieving when I need and for as long as I need, and focusing on myself and my boys. I know that is where my focus needs to be right now.

Two years ago, when I started writing about our journey, the word that resonated with us; described the 12 weeks and 5 days we had; and also symbolizes how we made it through another day without Toby, is JOY.

#joyfortobystern became our rock and became a trend that was spread across the US to share Toby’s story. The impact it had on everyone who read about Toby or saw his picture was remarkable to see and many times we witnessed how Toby brought JOY to others, in their time of need.

Toby and his JOY are with our family now as we stand at the doorstep of another chapter for our family.

I have faith that God will see us through.

I have faith that Toby will guard our family with his army of Angels.

I have no doubt that we will experience JOY again in the coming months and it will be delivered by our blue-eyed angel, Toby, who sits at His Thrown and is now protected by His graces for eternity.

I have faith that Toby’s JOY will support us as we wade through memories of him and make new memories with our third little boy. As we transition from #ourfamilyoffour to #ourfamilyoffive.

The memories. The grief. OUR journey.

2018, faith, Family, grief, Joy, loss, Toby

Today was a hard day. Pregnancy after loss is so hard. There is hope, yes, but the moments that need to happen before a Rainbow arrives are so challenging.

I’ve talked before about how Toby’s room has remained the same since the day he died.

Today, much of that changed.

This is our choice. This is part of our promise to Toby, and to ourselves. To continue to move forward, but in a way that carries Toby with us, as well as we can, as if he were here.

We are about 10 weeks away from our third baby boy’s arrival and have held out until now to do these hard things. This morning we emptied his crib and took it apart. We stood around it for some time crying, gripping the rails. His fox fitted sheet still on the mattress; his binkies in the corner of the crib; his sleep sack still lay in the center of the bed, open and unzipped, ready for bedtime routine the night of August 24. A routine that never happened. Two years. Never moved.

When we lifted the mattress to pull off the bedding, this onesie was under the mattress in a ball. We both looked at each other in shock.

“How did that get there?” Dan asked me.

I just shook my head as I cried, my hands shaking picking it up.

I flipped it over and the saying says “Bright Future” in Orange. Orange. The breath was sucked from my lungs. I stood there holding it, crying.

I took the bedding and laid it in the hallway. When it fell to the floor, something bounced sideways from the air under the material and caught my eye. I looked down at the floor – it was a feather.

Dan turned the crib and started to take it apart. I sat in the spare room across the hall on the floor watching him with a bin of baby clothes in front of me that never made it into the drawers of Toby’s dresser.

Theo came up the steps and walked into Toby’s room, sniffing the crib and standing next to Dan. He turned and looked at me, walked out into the hallway and laid down across the hallway, looking into the nursery as Dan worked. Theo is Toby’s guardian. He was his protector from the day Toby came home. He would sleep beside the bassinet or his crib during nap time, especially if we were doing something at home and left Toby to sleep, that’s where you’d find Theo. After Toby died Theo would lay in the hallway outside his room at different times. He would go in and stand beside the bed or lay on the carpet. If you asked him “Is Toby here see you Theo?” He would whine or come to your side, wagging his tail. Those moments gave me goosebumps at first, now I just smile and carry on with what I’m doing.

I moved back into the room and asked Luke to help me do something. I took a box into the room and set it in front of the dresser. “Buddy, can you take the clothes out of this drawer and put them in this bin to help Mommy?” He grabbed them handfuls and threw them in the bin. I watched these tiny pieces of clothes be dropped in the box and I felt grief consuming me. I cried. I sat there with clothes all around me, but they weren’t clothes, they were memories.

Fourth of July. A day at the museum. The only long pants we had on him, ever. His sleepers. Each one smelled like Toby. I could feel my heart breaking.

I looked up into the hallway, Theo was standing over the crib bedding, putting his head into it. “Do you smell him Theo?” He came right to me sitting on the floor and stood next to me, over top of Toby’s clothes.

I pulled the small bin out of the drawer with all his socks. I didn’t want to go through them. I started to dump them into a bin and at the last second looked inside. On the top was a pair of Fox socks right below them, the pair of white with blue lines at the top that he wore many many times.

As I sat there on the floor, in a half empty room, Dan put his arms around me as I cried, emotional too. Luke came and stood beside me, leaning in to kiss my nose. “Toby is with us,” he said. “He’s always with us, Mommy.”

Each thing we did today there was a reminder that Toby was here, right beside us.

We are in the process of having a wooden hope chest carved for Toby. It will hold all of his items that we have saved; pieces that have sentimental value to us; pieces that will always be his for us; as well as things that we may be given in his memory or pick up along the way that remind us of him. Many of the things that we went through today will be placed in this chest, which will have it’s own place upstairs in our home, just for Toby.

This is just one day of hard moments we have to go through over the next 10 weeks. Then we will start another chapter that will have it’s own trials of grief that we have yet to encounter. As much as I would like to emotionally and mentally prepare myself for this, in my heart I know from two years of grief, you cannot plan. Grief comes out of nowhere. It consumes the moments you are in; the day you are having; it is still very good at robbing me of joy that I’ve had that day.

Some of the time, there is strength to fight through and not be sucked back in, but those are still few and far between for me. I have found that sometimes I need to just let grief and the reality of Toby’s death BE.

Sit with it. Pray through it. Cry while I hold it in my empty arms. Let it drain me dry till I have no more tears. It is after those dark moments that I am able to see some light peering through. It is after each of these that I am reminded by Toby that he is here. That he will never leave me, or Dan, or Luke, or his baby brother, or Murray or Theo. That each day through this journey of grief is one day closer to holding Toby in my arms again.

Our Final Days

2018, Family, grief, loss, Lucas, Toby

This is the last picture we have as a family of four.

 

I was forcefully reminded as I started my morning commute today that this is the week I hate. The recurring flashbacks of those final days for our family, of what we thought was a normal week.

  • Crazy mornings trying to get Toby fed, Luke dressed, ready and out the door for work and school.
  • Schedules coordinated for pick-up and drop off of two boys.
  • School buses making each commute that day a little longer but giving me more time to talk and sing with my boys in the car. Both of them in the backseat. Both visible when I looked in the rearview.
  • Dinners in the kitchen with Luke running around and Toby in the swing or in one of our arms while we cooked.
  • Playing in the backyard after dinner – hitting the baseball, riding bikes, taking walks to the park.
  • Bedtime routines – which included 2 baths and 2 books, but one set of nighttime prayers.

I can vividly see each of these moments. I don’t even have to close my eyes. But they are so quickly swept away by the flashbacks of Wednesday, August 24. The day that so cruelly changed our lives forever and took our baby boy from us.

I try to change my commutes this week so I don’t have to sit at the light, staring at the building where I had to leave my son.

This morning I saw the first school bus and it had me crying immediately. I can hear the conversation that morning in the car, between Luke & I. Our niece and nephew were having their first day of school and we were talking about them getting on the bus and we also saw about 15 school buses from home to the sitters.

I want to go back to that day and make myself stay home. Call off work. Tell the sitter “The boys won’t be there today.” And just have a day with my little boys. My God – would things have been different?

I hate nighttime. It’s not the dark that I’m afraid of. It’s every other monster that meets me there. Memories. Smells. Sounds. Visuals. They are all a trigger for me.

The restlessness of knowing what this week is started for me last night. I laid in bed last night starring at the moon through the blinds. Wondering where Toby was or what he was doing.

Can he hear me? Can he see me? Does he sit with Luke at night and make sure he’s safe? Who did he help today? Will we ever know who our little boy protected? Saved? Watched over? What does he look like? Does he have straight hair or curly? What is his favorite thing to do? Book to read? Song to sing?

You hear the phrase “Bargaining with God” most of the time in a homily at church or during a tragic time. You don’t know the depths of that phrase until you’re at your lowest. You think you have bargained in your lifetime, until you realize you’ve only been wishing, asking for his blessing.

I have bargained with God. I bargained with him as I sat in a hospital room, just my husband and I, holding our son, who had died two hours before.

I bargained with God on my drive to the hospital. Asking him to hold Toby and tell him I was coming.

I bargained with God that night when we came home. I sat on the kitchen floor and cried looking at all his bottles I had washed and ready to feed him, when we should have come home from work that day, as a family.

I bargained with God last summer when I was at my lowest point, feeling like I couldn’t go on. Screaming at God – “Why did you take him? How could you have possibly needed him more?

Why couldn’t you take me? I’ve lived a good life. I’ve known happiness and love. I’ve been fortunate enough to see many places and try many things. I married the love of my life who has done nothing but support and love me, through everything. I have carried and brought into this world two beautiful boys who have made my heart grow bigger and made me a mom. I could have gone. Would I have been scared and probably sad, being in Heaven and watching them – yes! But I think my heart could have healed knowing I could protect them, be their guardian and know they were being raised by the best father they could ever have.

Why couldn’t it have been me?

I’ve said this to God so many times in the past 24 months and still have no answer. But, it hits me the hardest during this week. With every other possible emotion and feeling, it all comes raining down.

There is one thing I know for certain, given the choice, I’d do it all over again. Even if it was just for 12 weeks and 5 days. I would take every moment; every smile; every laugh; every moment of Luke & Toby together; every moment of all four of us at home; every sleepless night or 3am feeding; every bathtime that didn’t go as planned; every single second that my son was an arms-length away or in my sight. I would take it. Even if I knew the timetable we were on. I’d probably still bargain with God every day.

But I’d take it.

To The Parents Preparing For School to Begin – A Note From A Grieving Family

2018, Creating Change, Family, grief, Lucas, Parenting, Toby

Lucas will start Pre-K this fall. With his first school application, we had to write a letter about our family. I was absolutely not ready for this. I knew we’d have to do it one day and know this is only the start of these conversations with teachers, administration, coaches, and families that we will meet along the way. But the triggers it brought were another layer of grief we were not prepared for.

The administration was very welcoming and told us that one of the first things classes do is a family tree, which also has a discussion about family amongst the children and asked if Luke would be comfortable with the conversation. I both cried and beamed with joy.

Luke is so proud of Toby. He may not say that exactly, but he talks about him multiple times daily, includes him in his stories and games and in his prayers at night. I have no doubt he will proudly talk about Toby during family discussions and projects at school.

Lucas & Toby – July 2016

I saw this article from Today Show and it triggered the tears. I don’t even have to read the article. We’re not even there yet, Toby would only be 2. But I know this will be me in two years and every year after that, for the next 20.

Every sport, every play, every class project, he will visually be missing from the class of 2034, but I know I will watch that Class and wonder he would be.

My mothering heart prays that school, classmates, and other parents will be kind to my little boys. This is our family, not by choice, God knows. These boys are our life and we will talk about them proudly, holding Luke & our Rainbow tightly and doing the same with Toby’s memory.

If by chance your family has a grieving family in your class, whether you know from the first day of school or don’t learn about it until mid-year, please be kind.

You may not understand. We don’t expect you to. We just ask for you to be kind to our boys – they don’t know any different and to them, we aren’t different. Luke is a big brother. Toby is his little brother, who to him loves baseball and the color green.

And if you really want to experience something amazing, take a moment to ask Luke about Toby. You may just find yourself hugging your own kiddos a little tighter that evening and thanking God for the blessings you get to kiss goodnight and tuck into bed each evening.

Remember, we are a family, just like you.

One of our sons just got called home a little sooner, to do God’s work.

 

Article from Today
Author: Jennifer Swartvagher

Dear Kindergarten teacher: My son will be absent on the first day of school

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.

My {Eternal} Birthday Wish

Uncategorized

I took this picture two years ago, the morning of my birthday, sitting in Toby’s nursery with him while he napped. I opened these memories up tonight and am just crying looking at them.

I look at this second picture and I long to feel the happiness that was in this moment. I would give anything to have that day back. Anything.

I hold my breath when “Happy Birthday” is sung. Or maybe it’s that my breath is taken away for that moment. In my mind I can see and feel those memories from two years ago. I can actually feel Toby in my arms, hear Luke’s little voice.

Today is so hard for me. Many don’t understand. Birthdays were never big for me. It was just another day. Nice to celebrate with family and always with an ice cream cake. I never cared about the number or had one, in my mind, that was monumental. But that changed two years ago.

Birthday 33 is now my number. It is the only celebration I’ll ever have with Toby in it. It is also the year that changed my life, forever.

I’ve heard it said “each persons story is written from the day they were born.” It makes me wonder if that means by the year; by the milestone; by life’s big chapters – but then how are chapters defined?

How do we prepare ourselves for what happens in life? I don’t think we’re ever really prepared for death, especially a tragic death, like losing a child. I think we adapt. We figure out what works for us in that heartbreaking moment, whenever it happens – be it that day; a month from then; or two years from then – and we succumb to whatever emotions may flow.

I wanted to see Toby today, but I couldn’t bring myself to drive to the cemetery. Last year I sat with him and it was one of the lowest, grief filled days I’ve had since his death. The tears wouldn’t stop and I felt like God wasn’t listening to my pleas.

I didn’t go to the cemetery today. But I started my day telling Toby I wasn’t coming and begging him not to be sad that I wasn’t there. We’ve been traveling the last few days and when we pulled in the driveway today Luke said “Toby, we’re home!” Those words hit me.

We were home. He is home. This is where he was two years ago. This is where he’d be today. Waiting for the song.

I’m sitting on the deck writing this for the past half hour, letting the tears fall and watching the sun set. I love sunsets on our porch. The way the beams dance through our trees and the birds sing. I can close my eyes and imagine Heaven.

I’ve been thinking about that one thing that people say on your birthday “Make a Wish!”

I have my wish for the rest of my birthdays here on Earth. One that I know will never come true, but I will never stop wishing it.

But today, here’s my second wish:

“I hope today in Heaven, the sun shines on your face. I hope Angels keep you laughing, reading books and singing songs. I hope Heaven has a ball field, where you can practice your home runs. I hope you are so busy, smiling and having fun, you miss the moments we feel this sad, because we miss you, Son. My birthday wish today, is not for me, but for you sweet one. I hope you fall asleep each night feeling loved and know that I am proud to be your Mom.”

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

One More Moment

2018, Family, grief, loss, Parenting, Toby

It’s the 24th again. Another milestone. But, not one where we can tell the world your new favorite book or food. It’s another month of you being away from us.

It is also the month which starts the season that coincides with our time with you on Earth. Two years ago you were still safe in my belly. I was finishing my last days of work and my heart was full of excitement as I couldn’t wait to meet you.

Now, I cry looking at pictures, listening to the birds outside, watching the sun set, watching Luke play in the yard – there’s just emptiness, right where you should be.

I was traveling last weekend and drove by myself. On my way home I stopped to get lunch at McDonalds. It was busy so I ordered and sat down waiting for my food. I didn’t see it when I walked in, but as I sat at the table by myself, I was surrounded by children. Sitting with their families, playing in the play area, running with their siblings. I didn’t even have a moment to think about it, but tears were pouring down my cheeks. It was a moment where the pain of my son dying, of being robbed of every joyful moment as a parent was all right in front of me. I sat there crying as I tried to finish my meal. There was a little girl sitting a few tables a way. Her parents were getting her brother situated with his meal and when I noticed her she was just staring at me. She waved at me.

She couldn’t have been more than two as she was in a high chair. I tried to smile to wave back to her, but I couldn’t. I cried even harder. I waved and she smiled at me and then her attention was back with her family at the table.

I got home to an empty house. Dan was at his parents with Luke and took Murray & Theo with him. There are moms that beg for empty houses – alone time, me time. Empty houses only bring me pain and sadness. I love our home. I said that a week ago when we celebrated our two year anniversary of buying our house. But, Toby’s always missing. The pattern of his feet running after Luke upstairs. His giggle. The sound of his voice.

I know that being a mom is hard. That being a parent is challenging on a relationship. That it’s easy to complain about the little things in life. But try and remember – that’s what they are, little things.

  • Reading yet another book before bed.
  • Listening to your children argue about what show they want on.
  • Letting them have 5 more minutes playing before dinner starts.
  • Taking a shower while they talk to you outside the curtain about their day or what snack they want.
  • Doing 10 loads of laundry a week. (I hate laundry, but I hate it even more because none of Toby’s things are there to fold.)

These are little things. And you have them. We never will with Toby.

So today, when you have a moment as a parent where you want to lose your temper or tell them to be quiet, take that extra moment and think of every parent who has lost a child or children. Pray for them. It doesn’t matter how long it has been. Their hearts need strength.

Pray for them and then give thanks for the moments you do have with your children.

I’d give anything for another moment with my son.