Steps and Stones

Isabella is a girl on the move!

I need to take time to put together a full blown update with timing and milestones. I want to remember this miracle. I want her to look back and feel so proud of her accomplishments and of her hard work.

For today, I’ll just share that her Early Intervention updates have gone so well, her goals blown out of the water, she is graduating early.

Our Six Year Old

Landons birthday, sixth birthday believe it or not, seems like a great time to provide an update on how he is doing.

Landon arrived home from the hospital almost a month ago. The ride home I was second-guessing myself much of the way. And that first weekend was so challenging I had a hard time picturing how we would ever make it through the first 48 hours much less the next week. But we did. Then we did. And we still are. And one month later Landon is doing well. He’s still fragile; presumably from now on. But we are managing. And being able to manage at home has been so meaningful.

Hospice has proven to be a fantastic partner. The Dr and nurses come to us, and are very responsive and caring. I’ve called numerous times, usually at odd hours, and they are always ready to help. Rather than regretting the move, I wonder how we didn’t land here sooner. It’s still hard. It’s also right for us.

Home has allowed us the chance to greet the age of 6 head on at home. 6 is TRIPLE the life expectancy we were given once the severity was more clear. Home has allowed family movies, more hand holding, more snuggling. More blue game days. More reading in La La’s room. More of his special smiles. More glimpses of those bright blue eyes. More time. And another birthday.

The Fight

This day three years ago I was holding Nolan with no idea what the future held. 

This day two years ago I was holding Nolan in my arms as we selflessly agreed it was time to let him go. 

That reminder that time is precious, and the future is never guaranteed is certainly a constant in my head.  As if I needed any more reminders…the last few weeks with Landon have certainly made that clear all over again.  Time is precious.  Love is eternal.  Grief is endless.   

Maybe because grief is also endless, maybe because “moving on” is such a silly phrase, maybe because losing a child isn’t something you recover from…I’m proud of the last two years.  They have been hard.  Very hard. Far harder than I’m willing to be fully transparent with you about.  

But I’m here, two years later.  And I feel stronger than I ever thought I could.  I’m saying this out loud mostly because I’m friends with lots of moms who have lost or will lose their children.  Our online community cheers each other on, and we watch each family fight, sometimes winning battles, sometimes losing the war. 

If you’re reading this and have experienced a loss, just because the war is over doesn’t mean you are no longer a warrior.  You’re still fighting every day.  You’re still working hard for every smile, every laugh, every ounce of normal you feel.  You’re fighting for your family, for your marriage, for your other children perhaps.  You’re fighting to be at work, or to care about your own health.  You’re fighting for your faith, or to remember what matters to you.  Some of you had to fight to get out of bed this morning.  

Maybe this is an odd thought for a parent to have for a child.  But this morning when I was reflecting, I found myself hoping Nolan is proud of me.  Proud of how I’ve cared for Landon.  How I’ve advocated for Isabella’s diagnosis and care.  How I’ve loved Karson.  How I’ve tried to do what is best for our family.  How I’ve taken care of myself.  How hard I’ve fought.  All while proudly protecting a Nolan sized hole in my heart.

Yes, grief is endless, but love is eternal, and thus so too is the fight.