Tommy's fight with Metachromatic Leukodystrophy MLD

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

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 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!

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 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 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 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!!

We were decorating for Sebastian's 9th birthday, Super Mario themed. Tommy loved Mario! I can't get enough of that smile!

One of his good days. We took those as much as we could get them! So handsome!

Little did I know that he wasn't going to get better. Tommy's very loved!

Do the glasses make him look cuter or does he make the glasses look cuter? I say both!! I can still get lost in those eyes...my beautiful boy!

I won't share pictures from the last 2 to 3 months of his life because it just shows him deteriorating and I don't want anyone to remember him that way. I'm focusing on his joy and sweet smiles and the amazing bond he shared with his big brother Sebastian. In 2 months and 2 days it will be a year that we lost him. Thank you for letting me share the light that is Tommy with the world!

My baby 💔

This needs no other words. June 20th is coming in hot.

My sweet sweet boy! You're making Heaven more awesome and everyone there is better for knowing you! Thank you for always being with us. I'm so glad you're not in pain anymore. My pain started the day yours ended almost 10 months ago. I wish I could have even one more day with you, but not if you would suffer. Come visit Mommy in her dreams sometime will you please? I love you, to infinity and beyond! ❤️

2 years ago, my baby was alive and was still eating solid foods, though not in enough amount yo be considered substantial because he did get his feeding tube not too long after these pictures were taken. I miss his smile so much! He will always have his place no matter where I am. All I have now is his urn, but I'm hanging onto that for dear life, forever and ever. I miss him more with every passing day. Every passing day, it gets more and more permanent. He is in Heaven with his Papa, I know that. I will always feel incomplete, though. I know he's always here with us, but his presence was so warm and welcoming and gentle and loving. I love you, Tommy Lee, to infinity and beyond!!

This little boy had so much personality! He always looked at you with love in his eyes. He's pure love and light and a great blessing of a guardian angel. My forever 3 year old!

My angel baby from 2 years ago today. I don't have words today. Except I miss you beyond words, Tommy Lee! And of course I love you!

My sweet angel face, I could stare into your eyes all day!

I so cherish these memories of my babies! 2 years ago was the last time Tommy could eat solids, albeit he ate very little. 4 years ago and big bro bro is reading to him. 1 year ago when he was sleeping. I loved when he rested! He was at actual peace. I miss you, Tommy Lee, to infinity and beyond!

Here you are, one year ago today, snuggled up to your sloth that a dear friend from work gifted you. 9 months ago today, you fell asleep just like this, but you woke up in Heaven with your Papa by your side. Your Auntie and I took a moment at work this morning to wish you a happy 9 months in Heaven. My sweet Tommy, my sweet angel baby, there's a huge hole in me that I will carry the rest of my life. You complete me, you and that awesome big bro bro of yours. We look at your pictures on a daily basis. It isn't the same, but it does bring a warmth to my heart. Knowing you're at peace, no suffering, free of all the yucky you had to endure in your all too short life is everything to me! I love you, Tommy Lee, to infinity and beyond! ❤️❤️❤️❤️🥰🥰🥰🥰🙏🙏🙏🙏

Oh sweet Tommy.. my heart aches for you! 3 years was not nearly long enough. I miss you and love you so so much! How can it be that you will have been gone 9 months on Wednesday? The 1 year is coming in fast forward..1 year...a third of your life. Thank you for watching over me always! I know you're watching over all of us. Thank you for the many nudges I get that you're with me, sweet baby boy! Give Papa hugs for me please. I love you, angel, to infinity and beyond!

Can't tell I love this kid, can you? I have THE best boys! Tommy was so so happy when pain wasn't plaguing him so bad. It depended on the day. Not anymore, thankfully! That being said, I miss him like nobody's business! I can't believe it will be 9 months on the 20th. I just adore him!

Exactly what I said yesterday. Along with severe forgetfulness. Everything hurts.