Tommy's fight with Metachromatic Leukodystrophy MLD

Tommy's fight with Metachromatic Leukodystrophy MLD Tommy was diagnosed with MLD on June 3rd, 2022. It's a rare, genetic disease.

01/31/2025

The more time passed, the more I miss my forever 3 year old!

01/11/2025

Just a chatty, happy, sweet, sweet, sweet little boy. His brain was just going and going. I am blessed to call my two boys mine, in countless ways!

If you're the praying kind, our family could use some.  Tommy would have turned 5 tomorrow. I'm posting now and not tomo...
01/10/2025

If you're the praying kind, our family could use some. Tommy would have turned 5 tomorrow. I'm posting now and not tomorrow because he is strengthening me to be able to share tonight. Next year, he will have been in Heaven as long as he was on Earth, and then his time in Heaven will continue to surpass the all too little time he was here. I know he's always with me, but I miss him and love him on a level I didn't know I was capable of. I pray that I made the right decision to work tomorrow. Goodnight and God Bless.

Tommy Lee Dorman, Mommy misses you more than words could ever express!  I love you, to infinity and beyond!
01/02/2025

Tommy Lee Dorman, Mommy misses you more than words could ever express! I love you, to infinity and beyond!

12/27/2024

One of my favorite things in the world is watching this little boy and hearing his own personal conversation. I can't believe December 20th marked a year and a half since we lost him. Two weeks from tomorrow is what should have been his 5th birthday. We lost him at 3 years, 5 months, and 10 days old. Cutest. Guardian. Angel. EVER.

Unknown Author:Hi. This is your late loved one speaking. I don’t have long, so listen up because I have a lot I want to ...
12/16/2024

Unknown Author:

Hi. This is your late loved one speaking. I don’t have long, so listen up because I have a lot I want to tell you.

First off, I get it.

Ever since I left this world you have missed me, and I know you’re bracing for the holidays without me. No matter what anyone says, this year’s festivities are going to be really tough.

In fact, let’s be honest, this festive season will probably suck pondwater. But then, Thanksgiving and Christmas are tough holidays for a lot of people. You’re not alone.

See, the misconception about the holidays is that they are one big party. That’s what every song on the radio claims. Each television commercial you see shows happy families clad in gaudy Old Navy sweaters, carving up poultry, smiling their perfect Hollywood teeth at the camera. But that’s not exactly reality.

In reality, fifty-eight percent of Americans admit to feeling severely depressed and anxious during November and December. In reality many folks will cry throughout the “most wonderful time of the year.”

Well, guess what? Nobody is crying up here in heaven. This place is unreal. There is, literally, too much beauty to take in. Way too much.

For starters—get this—time doesn’t even exist anymore. Which I’m still getting used to.

Right now, for all I know, the calendar year down on Earth could be 1728, 4045, 1991, or 12 BC. It really wouldn’t matter up here. This is a realm where there is no ticking clock, no schedule. Up here there is only this present moment. This. Here. Now. That’s all there has ever been. And there is real comfort in this.

I know this all seems hard to grasp, but if you were here you’d get it.

Also, for the first time I’m pain free. I feel like a teenager again in my body. You probably don’t realize how long I’ve lived with pain because I never talked about it, I kept my problems to myself because I was your loved one, and you needed me to be brave.

But pain is a devious thing. It creeps up on even the strongest person, little by little, bit by bit. Until pretty soon, pain becomes a central feature of life.

Sometimes my pain would get so bad it was all I thought about. No, I’m not saying that my life was miserable—far from it. I loved being on earth. It’s just that simply waking up each morning was getting exhausting.

But, you know what? Not anymore. In this new place, I am wholly and thoroughly happy.

But enough about me. I don’t have room to describe all the terrific things I’m experiencing, and you don’t need to hear them. Right now, you’re grieving, and what you need is a hug.

Which is why I’m writing to you. This is my hug to you. Because you’ve lost sight of me. And in fact, you’ve lost sight of several important things lately.

Death has a way of blinding us. It reorganizes the way you think, it changes you. You will never be the same after you lose someone. It messes with your inner physiology. It reorganizes you’re neurons.

But then, there’s one teensy little thing you’re forgetting:

I’m still around.

Yes, you read that correctly, I’m right here with you. No, you can’t see me. No, you can’t reach out and hold me. But did you know that one of the things I’m allowed to do as a heavenly being is hang out with you?

It’s true. I’m never far away. I’m in the room with you now, along with a big cloud of ancestors, saints, and witnesses. I’m shooting the breeze alongside you, watching you live your life, watching you raise your kids, watching your private moments of sorrow.

Here, in this new realm, I am in the perfect position to help you learn things. Which is what I vow to spend the rest of your earthly life doing, teaching you little lessons, lending you a hand when you least expect it, and desperately trying to make you smile. Actually, I’ve already been doing this stuff, you just don’t realize it.

What, you don’t believe me?

Well, wake up, pal. You know that tingle you get in your spine whenever you think of me? That’s me.

You know how, just yesterday, you had a beautiful memory when you were driving and it made you cry so hard that it actually felt good and you began to laugh through tears? Also me.

You know how sometimes when you’re all alone, preoccupied with something else, suddenly you get this faint feeling that someone is standing in the room with you? Hello? Me.

You’re not alone on this earth. You never were. You never will be. So during this holiday season, when cheerful families are getting together and making merry, and taking shots of eggnog, I’m going to be clinging to your shoulder, helping you muddle through somehow.

I’ll be making your spinal column tingle a lot, and I’ll be sending plenty of signs. Each of these signs—every single one—is code for “I love you.” So start paying attention to these hints.

Because this was one.

Not a day, hour, minute, second goes by without longing for Tommy.  He is always on my mind and in my heart.  How it's b...
12/06/2024

Not a day, hour, minute, second goes by without longing for Tommy. He is always on my mind and in my heart. How it's been over a year since he died is incomprehensible. Genuine, kind, love beyond measure, all help to describe Tommy Lee Dorman. He is no longer in pain, but I miss him so much it hurts. His energy is pure, and healing, and peaceful, and warms my heart so very much. I'm so grateful I have him home with me. He watches over vigilantly and I can feels his love surrounding me. Rest in the most perfect peace, and please hug your Papa for me. I sure miss him too!

06/04/2024

We got Tommy's terminal diagnosis 2 years ago today. 💔

Urban lying with Tommy's pillow 🤗
06/03/2024

Urban lying with Tommy's pillow 🤗

My posts may be light for a while because Tommy's 1 year is approaching fast and it's hitting me super hard.  I love pic...
05/27/2024

My posts may be light for a while because Tommy's 1 year is approaching fast and it's hitting me super hard. I love pictures of Tommy and it means the world to be able to share him, but it hurts really bad. To say the least. Thank you for following and supporting my posts about my little forever 3 years, 5 months, 10 days old little boy. God bless!

05/21/2024

2 years ago when my baby was stuck in the hospital for a month. Sebastian and Tommy were the best of friends!

The closer the 1 year mark comes, the more "all over the place" I become.  It still doesn't seem real. He was such a gre...
05/16/2024

The closer the 1 year mark comes, the more "all over the place" I become. It still doesn't seem real. He was such a great, sweet, loving little boy! He was so much like my Dad, in the best ways. I miss you and love you, Tommy Lee, to infinity and beyond!

He was stuck in the hospital for a month and battled 3 different respiratory conditions at the same time and he still sm...
05/14/2024

He was stuck in the hospital for a month and battled 3 different respiratory conditions at the same time and he still smiled. Omg I wish I had half his strength! Sweetest baby ever!! Way to show the world how it's done, Tommy Lee! I love you to infinity and beyond! You and your brother amaze me every day!

I've said it before and I'll say it again.  I can get lost in those eyes.  We were hopeful he was getting better because...
05/10/2024

I've said it before and I'll say it again. I can get lost in those eyes. We were hopeful he was getting better because he was more alert and he got his color back. I will always treasure the breaks he got from his suffering. Prayers please for his big brother. He's really missing him.

This was May 8, 2022.  He spent 99% of the month of May in the hospital and we weren't allowed to go home without a feed...
05/09/2024

This was May 8, 2022. He spent 99% of the month of May in the hospital and we weren't allowed to go home without a feeding tube because he was so malnourished. He went in with the flu I believe it was, but he ended up with RSV and aspiration pneumonia. This was also the beginning of the bipap journey. Oh my sweet boy! Heaven is so blessed! 1 month and 12 days and it will be 1 year ago we lost you. I love you, Tommy Lee, to infinity and beyond! You and your Papa Tom take awesome care of each other up there! I miss you both so so much!!

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