‘One day, you’ll find that to-do list is trivial in comparison. You’ll wish you could go back and rock your baby a bit longer.’: Mom of boys with incurable disease shares letter to younger self

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“Dear Younger Me,

Right now, you’re probably putting your baby to sleep. You might be rushing to put him down so you can get dishes done, laundry started, and dinner prepped. I get it, I do. I know you feel overwhelmed by the constant state of stress you’re facing. That growing to-do list in front of you seems to get longer by the second, but listen to me closely. You need to slow down. You need to cherish every single second of the stage you are in right now because before you know it – it’s over.

You have no idea how fast these days go by. Someday you’ll wish you could go back and rock that little baby a bit longer. One day, in the not-so-distant future, you will feel guilty for focusing on that never-ending to-do list so much. Little do you know, one day, you will get a phone call that will change everything in an instant. One day, the floor will crack beneath you in such a way, and nothing will ever be the same again.

two brothers who both have Duchenne's hold onto eachother
Courtesy of Christi Cazin

You’ll open your eyes to find everything around you is precious and that oh-so-important to-do list that drives you now, will soon be trivial in comparison to what you’re about to face. That list will always be there waiting for you to complete the next task, trust me, it never stops. What you don’t realize now, is although you are sleep-deprived and overwhelmed, that little baby you’re comforting at 3 a.m. will soon be 11 years old. Those moments that may seem ordinary, or even exhausting to you now, will someday stand out in your mind as incredibly precious memories and not at all ordinary.

The sick baby you’re singing to in the steam of that tiny bathroom will soon be nine years old. The little girl sleeping in your bed, elbowing you in the back throughout the night, will soon be five, and you will miss all of it, even the tiny elbows that keep you awake at night. What you don’t know is, as much as you think you’re trying to cherish these moments now, it just isn’t enough.

two young boys with Duchenne's sit at the movie theater with their dad
Courtesy of Christi Cazin

Someday soon, you will look back and wish you’d somehow savored it even more. You’ll want to go back in time and sing just one more lullaby to your baby, read one more bedtime story, and savor one more midnight cuddle. You’ll desperately wish to go back and do it all over again, because that phone call will change everything about you.

In the blink of an eye, one phone call will come that no one could’ve ever prepared you for. You won’t think the same way, you won’t look at the world around you the same way, and suddenly everything that caused you to be exhausted before will be dearly missed. Soon you’ll find out your perfect little boys, who seem to run just a little slower than the other kids on the playground, are actually weakening. What you thought was a simple delay that would correct itself will actually turn out to be an incurable degenerative disease.

three siblings, one girl and two boys with Duchenne's pose in their Halloween Costumes
Courtesy of Christi Cazin

Soon you will sit in a cold doctor’s office, listening to the doctor’s voice crack as he tells you your life will never be the same again. That look in his eyes will haunt you for years to come. The test will confirm your worst fears. ‘Duchenne Muscular Dystrophy’ will flash through your mind like a neon sign every time you close your eyes. That call will bring you to your knees, changing you in ways you could have never expected.

At first, you’ll fall apart. You will be a little bitter for a while as you watch the world around you continue to turn normally as if nothing happened at all. In the beginning, you will fall hard, into a deep depression. You’ll cry every time you see an old picture of the life you had before the diagnosis. You’ll fear the future, worry about every decision you make, and become obsessed with learning everything you can about Duchenne. It’s not an easy time, and it feels like you’re drowning, but don’t lose hope, mama. After the storm settles, I promise you will learn to accept your new reality and fight for your boys with everything you’ve got.

Duchenne dad stands behind his two sons with Duchenne's in wheelchairs
Courtesy of Christi Cazin

After the clouds part and you start to let go of your old life, the rainbow in the distance will become so clear. The colors around you will become brighter, the smiles in front of you will become sweeter, you will start to treasure your life in a way you just couldn’t before, and somehow you will find yourself grateful for the life-changing perspective that came with the diagnosis.

Don’t worry; everything will be okay. Life will be hard, but God will provide for you along the way. Your marriage will get stronger. Your friendships will be more beautiful. Your faith will grow deeper, and your love for those babies you once rocked to sleep will light a fire within you. A fire that will get you through the hardships, a love that will change your family forever, and a perspective that will transform you into the mom you were always meant to be.

Now go hold that baby, go rock that sweet toddler, and cherish those sleepless nights. Smell that sweet baby smell. Laugh at the messes. Focus less on ‘getting it done’ and more on soaking it all in, because before you know it, everything will change, and all those moments will be a distant memory. Remember the picture that hangs on your wall, reminding you to stay in the moments. The one that reads, ‘Let me love you a little more before you’re not little anymore.’”

mom poses with her three children; a daughter and two sons who have Duchenne's
Courtesy of Christi Cazin

This story was submitted to Love What Matters  by Christi Cazin of Mama Needs More Coffee. You can follow her journey on  InstagramFacebook, YouTube, and her website. You can also purchase her book on Amazon. And you can learn more about Duchenne Muscular Dystrophy here. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, andYouTube for our best videos.

Read more from Christi here:

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‘My faith is solid, but it’s something I fight hard for.’: Mom shares how she remains faithful during ‘life’s roughest storms’

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