Nate's 7th Angel Day

We LOVE & MISS you, Nate!

Love,
Dad, Mom & Owen

Nathan's 13th Birthday

It's hard to believe that you would be 13 years old today...a teenager.

We LOVE and MISS YOU so much! Have a great party in Heaven and send us some signs today.

Love,
Dad, Mom & Owen

Nate's 6th Angel Day

We love & miss you so much, Nate!

As I prepared to write this post, I came across a recent post from Victoria Strong. She and her husband, Bill, lost their daughter, Gwendolyn, to SMA on July 25, 2015. Her post is titled "TIME DOES NOT HEAL ALL WOUNDS" and is so very appropriate for Nate's Angel Day:

TIME DOES NOT HEAL ALL WOUNDS

April 14, 2016 by Victoria Strong

Time heals all wounds. This is a lie.

Time does not heal. Not in and of itself. True healing requires a consciousness and constant work. Every day. For the rest of your life without your child.

I don’t say this because I have now managed to live 8 months without my Gwendolyn, an eternity and a blink all at once. I say this from watching friends over the last 8 years lose their children, the ways they've healed and the ways they never will. I say this from reading writers who faced loss 10, 15, 20 years ago and still ache. I say this from meeting parents who embrace me because their child died 30, 40 years ago and from looking into their tear-filled eyes, I can almost see the cracks in their still broken heart.

Time heals all wounds.

This is a lie we tell ourselves because the thought of carrying our broken heart for eternity initially seems too much to bear. This is a lie we tell ourselves because we are socially ingrained to repair things and we don't know what to do with the unfixable. This is a lie we tell ourselves because when a friend is still falling apart and still struggling months and years after burying their loved one, we don’t know what else to say.

But, to those grieving and to those supporting them, time does not heal all wounds.

Time can soften the wrenching intensity of those early days of mourning - for some. But time can also be a trigger to returning to that wrenching intensity. At any given moment. Sometimes specifically just because of time. And those constant triggers can create numbness and walls as a way of coping and it isn't time that breaks those walls down and helps you to feel again. It is consciousness, determination, and hard work every single day to find a way to carry our broken heart, with the gaping hole, alongside our deep love.

Time does not heal all wounds. This is what time does:

Time makes her scent fade. I cling to her blankets and clothes and pull the last strands of her hair from the brush I keep under her pillow, hoping to draw in one last remnant of her comforting smell. Some days I catch a whiff and weep with gratitude because for a fleeting moment it makes time take me back to where I want to be. With her.

Time makes her sounds distant, almost an echo somewhere in my memory. The very sounds that soothed me and held me together are no longer in my ears. And, I wish I took more videos because that precious giggle that got me through each day has slipped from my grasp.

Time makes the weight of her body disappear from my arms, no matter how firmly I grip, like a mist heading out to sea. The warmth of her flesh on mine, the very weight that grounded me as I snuggled into her every fiber, melts into time. It makes our rituals and daily life of carrying her and holding her and finding solace in her sweet pudgy finger taps start to feel foreign and unknown.

And, the continued passage of time will eventually lead to no longer knowing who my child would be. I will know her love - always. But, each passing year she would have grown so much. Would she still want her hair long? Would she still like princesses and butterflies? What books would be her favorites in the future? Her interests. Her experiences. We will never get to know. And each passing milestone of time: birthdays, graduations, events missed, family changes... are losses all over again.

Time does not heal all wounds. This is what time does:

Time makes people uncomfortable with grief, even more so than when death has just occurred.

Time makes people stop asking and stop mentioning her name. It makes them shift in their feet and look away when I weave her into a conversation.

It makes people judge and place expectations to be "better," even if they don't mean to. But when someone believes that time heals all wounds and when time has passed and you are still broken, something must be wrong... with you... with me.

Time makes people tire of your aching and emboldens them to say things like:

“Just give it time and you will move on…”

“You had a good run there…”

“You knew she was going to die…”

"You need to have more children so you can get on with your life..."

About your child. Your precious, incredible, irreplaceable, life-changing child. My child.

Time heals all wounds.

Those very words undermine the depth of grief and the courage it takes to live after loss. The death of a child is out of nature's order and completely disorienting. It would be nice to count on the simple passage of days to recenter the world after it has fallen down around you. But when you have held your precious child and felt them exhale their last breath part of you goes with them, a reattachment of the umbilical cord that gave them life, tethering your souls for eternity. With one foot in death and one in the living, and the debris of what was your whole world all around, you must relearn to walk. Time does not do it for you... for them... for me. 

No, time does not heal all wounds.

Instead of preaching clichés about time, this is what you can do:

Mention their name. Whether it has been 1 month, 5 years, 10 years – speak of them. You aren’t bringing up a sensitive topic or bad memories. There will never ever be a day our child is not on our mind. Parents may cry hearing their child's name spoken aloud, but these types of tears are fresh glue to a broken heart that will never be fully mended.

Remember their child's birthday. If you do one thing, make it this. Send a card for the parents to open, let them know you are thinking of them, even send a gift. To get to untie a bow, pull apart wrapping paper on your child’s birthday, when they are no longer there to do it themselves, is a gift in itself.

If they ask something of you, DO IT. It took enormous courage to ask.

Say something when you know certain days are hard. The anniversary of a child's death. A special event they once enjoyed. Holidays. If you don't know what to say, simply tell the family that you are thinking of them, of their magical child.

Know that holidays will never get easier. Ever. A seat will always be empty and a void will always be felt. Mention it. And, if you are spending holidays together, embrace a way for the parents to feel their child is still included: a new ritual, a blessing, a candle lighting, a poem or book read, give a gift in their child's honor... Acknowledgment is, at least, something when nothing makes things better.

Be there. With no expectations. Grief is exhausting, bone-tiring. But calls, texts, emails of support matter. Don't get offended if you get no response or if the parents don't want to be social. It isn't personal. Sometimes words need to soak in and linger to be soothing. Sometimes the simple act of responding to outreach feels completely overwhelming. Know your outreach reminds us we are not alone. That our child is remembered! When you are together, let your friend cry and cry with them. You don't need to be strong for them. (Even in their weakness, they are already stronger than you could ever possibly imagine.) Get comfortable with being uncomfortable and not being able to fully understand. Share empathy - not pity - for what you can imagine. We need you.

And to the grieving - You are not failing at grief, at life, if you still feel broken even when time has passed. You need to know this, too. I need to know this. If you are waiting for time to mend, to fix the unfixable, it will not come. You are the key. Your deep love is the source. If you allow yourself, you will find a way to carry all the broken. Not because of time. Because of love.

Time does not heal all wounds. Owning this truth is one healing step.

Nate's 12th Birthday

HAPPY BIRTHDAY, NATHAN!

We love you and miss you!

Love,
Dad, Mom & Owen

Nate's 5th Angel Day

We LOVE and MISS you so much, Nate!

Love,

Dad, Mom & Owen

Nathan's 11th Birthday

HAPPY BIRTHDAY, NATE!

We miss you so much! Be watching for the balloons that Owen is sending up to you today and send me & Mom so signs while we're out on our runs.

WE LOVE YOU!

Love,
Dad

Nathan's Angel Day

4 years...hard to believe.

Jennifer's Facebook post from last night is perfect and sums up our feelings:

Nathan's four year Angel Day is tomorrow. Owen is the exact same age as Nathan was when he passed. Happy because I will have a son that will live past 6 1/2 years old but sad that my Nate didn't see his 7th birthday. Very hard angel day to say the least! Miss him like crazy but thankful he is still alive within us, especially within our innocent Owen. What a blessing both our boys have been! Hoping tomorrow is filled with joy, not sadness and that our Angel sends us signs from Heaven! Love my Nathan! Always.....forever! Heavenly hugs and kisses sweet Nate! 

We love you Nate...miss you so much!!!

Love,
Dad

Owen & Kindergarten

Today was Meet the Teacher for Owen at Bixby North Elementary...his first day of Kindergarten is tomorrow. It was a little emotional since this is the school that Nate went to. Here is a photo of Owen besides Nate's plaque at the school and another photo showing the plaque and the tree that was re-planted a few days ago.

 

 

 

 

Trey

 

Nathan's 10th Birthday

HAPPY BIRTHDAY, NATE!

Mom, Owen and I hope that you are having a great celebration in Heaven. I cannot believe that you are 10 years old today! We miss you so much…please give me & Mommy some signs today while we’re out for our runs.

I found this poem last week while reading a book and thought it would be perfect to post on your birthday since you are constantly on our minds and always in our hearts!

Love,

Dad

 

If tomorrow starts without me
David Romano

If tomorrow starts without me,
And I'm not there to see;
If the sun should rise and find your eyes
All filled with tears for me;
I wish so much you wouldn't cry
The way you did today,
While thinking of the many things,
We didn't get to say.

I know how much you love me,
As much as I love you,
And each time you think of me,
I know you'll miss me too;
But when tomorrow starts without me,
Please try to understand,
That an angel came and called my name,
And took me by the hand,
And said my place was ready,
In heaven far above,
And that I'd have to leave behind
All those I dearly love.

But as I turned to walk away,
A tear fell from my eye,
For all my life, I'd always thought,
I didn't want to die.
I had so much to live for,
So much yet to do,
It seemed almost impossible,
That I was leaving you.

I thought of all the yesterdays,
The good ones and the bad,
I thought of all the love we shared,
And all the fun we had.
If I could relive yesterday,
Just even for a while,
I'd say good-bye and kiss you
And maybe see you smile.

But then I fully realized,
That this could never be,
For emptiness and memories,
Would take the place of me.
And when I thought of worldly things,
I might miss come tomorrow,
I thought of you and when I did,
My heart was filled with sorrow.
But when I walked through heaven's gates,
I felt so much at home.

When GOD looked down and smiled at me,
From His great golden throne,
He said "This is eternity,
And all I've promised you."
Today for life on earth is past,
But here it starts anew.
I promise no tomorrow,
But today will always last,
And since each day's the same way
There is no longing for the past.

But you have been so faithful,
So trusting and so true.
Though there were times you did some things,
You knew you shouldn't do.
But you have been forgiven,
And now at last you are free.
So won't you take my hand.
And share my life with me?

So when tomorrow starts without me,
Don't think we are far apart,
For every time you think of me,

I'm right here, in your heart.

Nate’s Third Angel Day

1096…

 

To some, that number would seem like a lot…to others, it would seem like a little.

 

To us, it is the number of days since we last got to see, smell, feel, hold and kiss Nate.

 

It is hard to believe that three years have gone by. Some would say that “time heals” but I am not so sure about that. I think one SMA parent summed it up best when they said “time doesn’t really help, I just get better at hiding the grief & pain”.

 

Nate…we love you and miss you so much!!!

 

Love,

Dad

 

Nate's 9th Birthday

HAPPY BIRTHDAY, NATHAN!

We hope you had a great birthday party in Heaven and got the balloons that Owen released!

We love you and miss you so...

Love,
Dad, Mommy & Owen

Nathan's Second Angel Day

Dear Nate,

For your second Angel Day I had wanted to write a profound post that would summarize our thoughts and feelings on this day. Instead, I think back to something that I said to your mom earlier this week, “sometimes the simplest words are the best to say”.

With that in mind….WE LOVE YOU AND MISS YOU SO MUCH!!!

It is hard to believe that two years have gone by. You are in our thoughts so many times each day...your photos are the screensaver on my laptop at work; your photos are throughout the house and the last thing I do before bed each night is to look at a photo of you taken just 10 days before you died. Each night I pray that you realize how much we love you and how much we miss you.

Your mom and I are so grateful that we were chosen to be your parents. Your little brother misses you a lot and still has a hard time understanding why he can’t fly a helicopter up to Heaven to get you.

I know that you are so happy in Heaven. You are SMA free...running around and playing with all your friends. Knowing that gives us some consolation.

Please continue to watch over us and to give us signs!

WE LOVE YOU!

Love,

Dad

Beautiful Quote

I thought of you today, but that is nothing new. I thought about you yesterday, and days before that too. I think of you in silence, I often speak your name. All I have are memories and a picture in a frame. Your memory is a keepsake, from which I'll never part. God has you in His arms. I have you in my heart.

Miss you, Nate...

Love,
Dad

runNYC4Nate...MISSION ACCOMPLISHED!

26.2 miles run....$11,852 raised for FSMA

A little before 4:00PM on Sunday, November 6, 2011, I crossed the finish line in Central Park culminating two years of work. When I registered for the lottery to the NYC Marathon in 2009, I had no idea that it would turn into the endeavour that it did. What started out as a "lark" became so much more. It became a mission to honor Nate and help all the other SMA kids & their families by raising funds for FSMA.

A huge THANK YOU goes to Jen and Owen for their love, support and for putting up with a spouse & dad who is training for a marathon. The early morning runs before work, the long runs on the weekends, the afternoon naps after the long runs, etc... I could not have done it without them.

Another huge THANK YOU goes to all of our family and friends that donated to FSMA and offered their support & encouragement to me as I prepared for this marathon. I continue to be amazed at how many people Nate touched in his short time here with us. I am extremely grateful for your generosity!

Here are a couple of photos I wanted to share:

A shot of the Verranzo-Narrows Bridge from the Green Start Village

A shot of the Manhattan skyline as I cross the Pulaski Bridge:

A shot as I run up First Avenue...the number of runners and spectators was incredible:

My 2011 ING NYC Marathon Finisher's Medal:

Thanks again for your support and generosity!

Trey

Notes from a Dragon Mom

Please click on the link below to read a very moving and accurate New York Times article on what it is like to parent a child with a terminal genetic disorder:

http://www.nytimes.com/2011/10/16/opinion/sunday/notes-from-a-dragon-mom.html?_r=3&src=tp&smid=fb-share

Another SMA family posted it on their daughter's blog (http://scarlettshope.blogspot.com/) and I wanted to share it here.

Thanks,

Trey

runNYC4Nate Update - 8/16/11

The final countdown has begun...

Three weeks from today, we'll be in NYC and I will be running the marathon!

A HUGE THANK YOU to all of our family and friends who have donated to Families of SMA! As of today, you have generously donated $8,010 in memory of Nate. I cannot begin to tell you how much this means to me & Jennifer...we truly appreciate your thoughtfulness and support!

I completed my last long run today (20 miles) and now begin my taper in preparation for the 26.2 miles on Sunday, November 6. I also look forward to running in cooler weather as it was in the upper 80's today in Tulsa!

I received my Bib Number last week and I am way at the back of the pack! I am #64-491 and I start running in the final wave at 10:40AM. If you are interested in tracking my progress, here is the website for the marathon and just follow the instructions under "Runner Tracking": http://www.ingnycmarathon.org/

Once again, THANK YOU for your donations and support! Please check back here on the evening of Sunday, November 6, to see how I did.

Thanks,
Trey

Can't the helicopter go get him?

Last night before going to bed, Owen wanted to go outside to look at the moon. As we stood there, a helicopter flew over the house. We then headed inside and back to his room.

After saying prayers, Owen asked if I'd lay in bed with him for a few minutes. We talked about his visit to the dentist, his new toothbrush and the balloon he got for being a good patient.

Out of the blue, he says, "I want Nate to come home" and he buries his head in my chest while wrapping his arms around me and squeezing tightly.

I told him that I wish Nate could come home too but he has to stay in Heaven.

Then he says, "Can't the helicopter go get him?"

I tell him that I wish we could fly the helicopter up there but we can't. We talk about Nate being able to run and play in Heaven and how Nate watches over him from up there. He then wonders if Nate or Jesus has come down from Heaven and grabbed the Batman toy that he left on Nate's grave. After talking about it, we decide to go there on Saturday after my run to find out and put some new flowers on Nate's grave.

I kiss him goodnight and get a big hug in return. I tell him that I love him and get an "I love you, too!" as I close his bedroom door...10 minutes later he is sound asleep.

Trey

Happy Birthday, Owen!!!!

Today is Owen's 4th birthday...HAPPY BIRTHDAY, Owen!

Love,
Dad, Mommy & Angel Nate

Photos of Owen

Jen took this photo of Owen in the backyard last week:

This photo was taken this morning as he went to his Young 4's class at Asbury's Mother's Day Out:

This is SMA. And this is what incredible looks like.

The Gwendolyn Strong Foundation has put together a beautiful photo montage of SMA children...Nate is the fourth photo in the slideshow.

Click on this link to watch: http://www.gwendolynstrong.com/2011/08/this-is-sma-and-this-is-what-incredible-looks-like.html

Thanks,

Trey