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The Last Night You Were 4: Birthday Milestones

Turning 5 is one of the hardest birthday milestones for mommas as much as a celebration for our children. Read my touching letter about watching her turn 5.

Turning five is one of the hardest birthday milestones for us mommas as much as it a celebration for our children. Five marks the age children move away from infancy to school age and take their first steps into the world. It was also the hardest birthday for me as mom.

A few days after her 5th birthday, I emailed this “The Last Night You Were 4” letter to my daughter that I wrote at midnight on her birthday. She has an email address waiting for her to grow up, full of pictures, stories, cute sayings and letters like this.

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Dearest Daughter,

On the last night you were 4, I did something strange you may not yet understand (wait ’til you’re a mom). But watching you turn 5 is strangely hard. It marks the end of your preschool days. You are now my little girl instead of my baby.

On the last night you were four, I cradled you in my arms in your nursery rocking chair. Your legs draped over my lap and onto the floor. Your head took up roughly the same amount of space your entire body did the day we first met you.

I read to you the first book I ever bought for you. I had read Guess How Much I Love You to you every NICU visit the first week of your life. Then I read, On the Night You Were Born.

Both books speak to the wondrous, precious gift you are to me, to our family. Then we said your prayers, and I tucked you in. I gave you just a few extra hugs and snuggles and walked out of the room, trying not to feel the swirling emotions that risked falling from my eyes.

But at midnight, as you turned five soundly sleeping, I tiptoed to your bedside. I scooped you into my arms and nuzzled my cheek next to yours. Listening to your sweet, still babyish noises of half words and sighs, I smelled your hair fresh from the bath, and kissed your velvet cheek. “Happy Birthday,” I whispered as tears sprang to my eyes.

Every Day was a precious gift.

I will never get back a single moment of your infancy, those rushed and panicked days when I was just learning who you are and how to do this mom thing.

5 is a milestone for mommas as much as for our babies! Read my touching letter to my daughter. Click To Tweet

I will never get back those first steps videotaped on a broken camcorder. I will always remember that you learned to run on vacation, making circles around Grandma’s house, pajama pants on your head.

Never again, will I hear your first word. Babies all say da da da. Does that count as Dad?  Very early, you mimicked ‘bye’ to everyone’s surprise when I dropped you off at daycare, but didn’t start a trend of talking. You were my quiet girl…

Until you weren’t.

Now we can’t get you to be quiet most of the time. You tell everyone how to drive, which is hilarious and infuriating. You want to know everything about everything. And I love it, even when it wears me out. You make me tell you stories over and over.

I miss holding you on my chest while you napped. Those months of just resting in letting you rest on me were too fleeting. I knew it would go too fast, and tried to memorize the weight of you on my shoulder, the sound of your tiny snores, and your angelic sleep face.

Turning 5 is one of the hardest birthday milestones for mommas as much as a celebration for our children. Read my touching letter about watching her turn 5.

I don’t want to hold you back, just hold onto these moments a little longer.

You’ve already started losing the babyish silly ways you would say things. I’m struggling to hold onto them as you start maturing. You still say pasketti and hosipal and yogrit, but baboon for balloon faded years ago. I don’t want to hold you back, just treasure each tiny part of your being tiny just a little longer.

I watch you playing softball and see you starting to pull away towards your friends just a little bit. But my heart still leaps for joy when you race towards me as if it’s been weeks, when it was only an hour.

Your tiny hand grows in mine imperceptibly slowly everyday, so I hold it as often as you will let me, even when you’ve been playing in the red dirt of the ball diamond, compounded by sticky fruit snacks.

Dear Daughter, I don't want to hold you back, just treasure every moment a little longer. Click To Tweet

You are beautiful in so many ways: the way you have one curl of stubborn hair in the middle of your forehead that refuses to be tamed or grow, the way your eyes sparkle when you really smile and laugh, the way your heart is full of love and kindness for others.

Turning five is a milestone for us mommas as much as it is for our children. Read my touching birthday letter here.

You are already not my baby anymore, and I’m trying to be OK with that. I’m not really, but I also love the new level of conversations we can have. I love watching you tackle a task that used to be daunting and conquer it with ease. You don’t need me quite so much in the minutia, but will randomly get “stuck” in a shirt that is too tight around the sleeves. I think you sometimes ask for help because you like knowing I’m there to help just as much as I sometimes still like to be asked. Sometimes, I think you’re just trying to avoid going to bed.

On the last night you were 4, I was grateful.

Grateful beyond belief that you were alive to turn five, healthy and strong, smart and powerful, creative and kind. It was bittersweet to welcome in a new era of childhood, one of more independence for you and more letting go for me, but I couldn’t imagine wishing for anything more than getting to be your mom on this journey.

The last night you were 4 was bittersweet, torn between old memories and new adventures. Click To Tweet

I have things I would do differently if I could do them over. Remind me to hold you close and listen to your hurts when, as an adult, you remember my less than stellar moments. Since time travel isn’t actually possible (despite your current fascination with the subject), I can’t have a do-over. Instead, I keep trying to get it better next time. Yet, as you keep changing, I have to keep learning a new set of rules, a new way to love you.

Which is hard because part of me will always see that teeny tiny little bitty in the NICU when I look at you, even when you turn 40 because that is what moms do.

These birthday milestones reach into my heart and beg time to slow down.

And watching the clock change as you went from 4 to 5, made me realize that no matter how hard I try, I can’t really hold on to every memory. They start to fade and slip away out of my conscious mind, but every one is etched into my heart.

I have never known a person more intimately and completely than I know you, and I can’t wait to see what 5 has in store for you. I love you all the way up to the moon and back, sweet girl and have since the night you were born.



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World’s Biggest Birthday Bash

And YOU are invited to be part of the celebration! turning this day into one of joy.

“Birthdays should be joyful occasions when parents celebrate the accomplishments their children have made in the past year, often talking of how they’re “growing up too fast”.  For us, that’s not the case. For our family, each birthday is a painful reminder of the decline we will continue to see if something doesn’t happen soon. Turning 5 years old should not be so bittersweet, and I know come November 16th, the tears will flow. We made it a point early on not to cry in front of our children, especially Eliza’s big brother, but it has become more difficult.  Emotions hit you when they hit you.  My son asks me “Dad, are they happy tears?”  “Yes, they are buddy” is all I can bring myself to tell him.

This is a pivotal time in the life of most children with Sanfilippo, and Eliza is just over the top of her roller coaster, which is starting down. It’s unfortunate, but we can halt it and soon.” – Glenn O’Neill

Have you ever saved someone’s life?

Most of us outside of the medical or military professions would probably say no. Can you imagine being an integral part in saving not just one life, but ending an entire disease? This Sunday, November 16 you could literally save lives by joining in the world’s biggest birthday bash for Eliza.


How can you join this birthday party? Go to the Facebook Event page , select “Going.” Go to and donate. Then invite all of your Facebook friends to the party.

As of today, in order to fund the trial for this gene therapy, we need around 5,000 people to donate $100 which will put the Sanfilippo foundation at the dollar goal necessary to get this trial started on time to potentially make a difference in Eliza’s life and the lives of all the children living with this disease world-wide, approximately 1 in 70,000 births.

Why should you join? I could wax eloquent and have in my posts The Last 365 and Too Late, but I don’t think I could say it better than her father, so I’ve shared his excerpted letter.

This is Eliza’s Father Glenn. I’m writing, first and foremost, because I want to THANK YOU from the bottom of my heart for your support this past year. You have been an integral part of saving my daughter’s life, and our family can never express how grateful we are that you would help us to stop Sanfilippo Syndrome and save Eliza.

Together, we’ve come so far, and your support has been humbling. But now, well over a year into our journey to try and give Eliza a chance at life, we as a family are exhausted. It is a grueling process, putting your family’s struggles out into the public in hopes of saving your child’s life. But we won’t give up.

If you’ve been following our journey, we know YOU are probably tired as well. Tired of our campaigns and requests. And so we’re hoping to reach our goal and finish this struggle once and for all with one final push: one day, the remaining $600,000, and a chance at life for Eliza. Allow me to explain.

We live on hope, but as my wife said in the SavingEliza video, “Hope is a nice word, but we need action.” Well you’ve shown us action.

We plan to raise the remaining $600,000 as her birthday gift, on this one day at  With more than 30,000 unique supporters, it not only ‘can’ happen, it will. It is ambitious, but you have already made us believers in the impossible. You’ve made us believe in happier birthdays in her future. We can see it. It’s no longer a far-flung hope, but a very real possibility: a 10th birthday, an 18th, and a 30th. Christmas mornings and Prom dates and arguments with her parents who “don’t understand her” all seem so possible now.

To reach this goal, on November 16th, we’d need 6,000 supporters at the $100 birthday gift level, or 12,000 at the $50 gift level. This will be our ONLY donation request to you this year, as it must happen now. If you were planning to give again later in the year, please do so on Nov 16th. This request is to you. Her chance at a real future is one $600,000 birthday away..curing this disease within reach and in time for Eliza.  Will you be able to give this birthday gift of $50 or $100?

What better way to end the campaign than to complete the funding on Eliza’s 5th birthday?

I always struggle with how to thank someone that has literally helped save my child’s life… Words aren’t enough, and I don’t know what sort of actions would be sufficient. I feel you’d want us to thank you by simply holding her, hugging her, loving her, and making sure we are doing everything in our power to save her. I can assure you that we are, and we will.

Thank you with everything that I am, Glenn O’Neill (Eliza’s Dad)

I ask you, Heaven Not Harvard reader, to share this post, share this Facebook party, invite your friends. Get ten friends together, have a party and donate on November 16th. Help us further this crucial research that may give Eliza a chance at many, many more birthdays, something all little girls deserve.

LIKE, SHARE, spread this one last campaign. #1Day1Goal #SavingEliza