Happy birthday, my sweet Lady Baby. Often I have to do the math in my head – you’d be 8. In my heart you’re forever 2, just as I remember you — your sweet fuzzy hair, your delicious baby chunk, your blue, knowing eyes with a heart-shaped pupil. The smell of your sweet, soft skin filed carefully away in my important memories archive.
April 17, 2012 at 5:12 pm you breathed your first breath into your tiny, fragile lungs. The sounds of your first cries permeated the very depths of our hearts and took our breath away. You forever changed the trajectory of so many lives, including your own Mom’s. You were PERFECT, my baby girl, exactly who God designed and created you to be. Only with that extra 18th chromosome would you have been able to accomplish your life purpose. At the time, however, it was hard for us to grasp this. To put it bluntly, we were terrified. It was impossible not to fall head over heals in love with you. The threat and thought of losing you at any given moment was unbearable. Ever so gradually, we gained our bearings. We acclimated to the very new and very different life that a medically fragile baby brings.
I don’t know if you can see us down here on earth right now or not, but the whole world is a scary place right now. The threat and thought of a virus has us all in quarantine, living a life none of us ever could have imagined. We find ourselves asking how we have become a part of something that “only happens in movies… to other, imaginary people…” Deep water, fear of the unknown / unseen, life interrupted. This old, familiar road that we walked down while you were here – but on a global level. We’re afraid of losing losing those we love the most, or even falling prey to the virus ourselves. Some of us have lost our jobs, our businesses and have no idea how we’re going to pay the bills, or put food on the table for ourselves and our families. The economy has gone to hell in a hand basket. It is unsettling, to say the least, not to know exactly what is around each corner. It is scary not to have any kind of definitive solution to the multitude of problems at hand right now. I remember these feelings of fear all too well, my sweet girl.
One of the many things that God taught me THROUGH YOU is that fear is a liar. I wasted so much time dwelling on all of the “what ifs” – imagining all kinds of horrible worst case scenarios. There are pictures of me holding you in what should have been a beautiful moment… but I see my swollen eyes, my tear-streaked face. I can almost feel my racing heart while Satan whispered fear and lies into my thoughts, “What if she dies tonight…” Instead of soaking in all of your sweetness and marveling at your soft shocks of dark hair, your tiny little face, I was debilitated with crippling fear. I’m sorry for any millisecond of time I wasted in fear. Many of those fears were worse than actually losing you. Why? Because I wasn’t meant to experience those scenarios at that time. When we actually did lose you on this earth – God MET US RIGHT THERE in inexplicably miraculous ways to comfort us and to bring us peace. None of that comfort or peace accompanies Satan-authored thoughts of fear. I try to remember those lessons in this present day when fear and uncertainty seem to always be on the menu with each news headline. I don’t have to have it all figured out right here, right now. Sometimes that’s not even my job. It’s God’s. So today, on your birthday, in honor of you, I’m going to be still, soak in peace and TRUST that God is going to make beauty from this mess we’re all in. He always has, He always is, He always will.
I hope you’re having the grandest of parties up in heaven, your favorite song “Happy Birthday” on loop, lots and lots of hot pink, toga party baffs and milkies on tap. You are so so very missed and loved!
Here are some sweet memories of your past birthdays with us – the day you were born, your Little Girl Birthday and your Big Girl Birthday ~
(And now, as I conclude this blog post – how crazy that “Praise You in This Storm” comes on the radio in the background… )
iwillcarryyou 
Happy Heavenly Birthday Miss Nora Rose! You are dearly missed. I always loved to hear about your adventures and to see your sweet little face! So very glad your mama shared you with us!
I was so invested in the Facebook page you so selflessly shared with us all. I had a maple tree placed in my backyard and when it grew heart shaped leaves, I named the tree Nora Rose. I felt such joy at the moments in life you shared with all of us as your daughter was slightly older than mine. My heart ached when you posted “pray!! Please pray!!” as she was admitted. I never prayed for anyone as much as I prayed your next update would be “she’s ok, she will be ok”. I attended her celebration of life with my baby girl and I wept so much for everything – for her, for your children, husband and for you. Your celebration of her life makes me think of her often in her afterlife. Thank you for allowing us to love her; root for her; laugh at her milestones; engrave in our memories how she loved her milkies, her baths, her listening to music. You have the most beautiful of angels with you now and forever.
It is amazing to me that your sweet Nora is known around the world and that I am fortunate enough to have been a (internet) witness to her short, but oh so powerful time on this earth. I looked forward to your posts, to see what outfit you’d have her dressed in or to see what Gavin and Greta were up to. It was like catching up with old friends, only we had never met. So hard to explain to others who didn’t follow your story, why your family meant so much to me, but you all did and still do.
For me, your family’s journey was a privilege to be part of and I still am so excited when you post an update. I pray that your hearts are healing – I know they will never be fully mended, but my wish is that you all find joy because that is the gift you gave to me by sharing your story. Thank you, Aleisa for letting me be a witness to you and your beautiful family. May God bless you now and always. Much love from one of your many stranger-friends, Robyn
Thank you for reminding us of the precious truths Nora taught the world! For such a time as this…. Beautiful memories, beautifully expressed (as always….your gift!).
Nora gave me a purpose. How wonderful it was to get up every morning and to know that there would be a story, and often a picture of your beautiful baby and family – a story of God’s Love and Blessings. It was like I a part of this story. Your eloquent writings about God’s part in all of this, made me a stronger believer – made me see more clearly God’s working in my own life.
You were a friend I had never met, but I wanted to be a part. I held my breath every time that Nora had a cough or a sniffle, wondering all the time if this was going to lead to the end. That chunky little princess held a piece of all of our hearts.
When you wrote of her passing, I sobbed along, I’m sure, with all of your followers. I felt lost and alone. You certainly did not grieve by yourselves.
I think about Nora all the time – I wonder how your family is doing – how Greta and Gavin must have grown. I miss your writing – your stories – your raw feelings. You made it OK for all of us to feel – to reach out to others. Most of all I miss your deep Faith and your love of God. Very seldom in this day and age, do we find someone who lays their Faith and their Heart open for all of us to embrace. I think that Nora, your writings and your entire family, made us all stronger believers.
I miss your writing. I pray that your hearts are healing and the wonderful memories you have of your beautiful baby far outweigh any fears. Thank you for welcoming us into your lives.
Love, Donna
Happiest of birthdays to sweet Lady Baby!! Need I say how this sweet angel on earth affected by life? She was tiny, frail and a mighty warrior all in one. She taught me that God can and does use the most unassuming persons to do his greatest work. Love to you, Yusko’s. I miss you very much!
I think of her when I see 3 birds on a wire.
Sweet Aleisa I’ve loved sweet NorNor from the minute a friend, Debbie Lawson, sent me your blog. I think I’ve mentioned to you before how Nora’s story reminded me of my own little brother, Albert, who was born (when I was 14) a Downs baby. The love for a child any child, let alone a special child is something that wraps itself around your heart tighter than any other love-strings & creates a beautiful bow that adorns that special life beyond when Jesus says “come on my child, it’s time you live with me now.” While we grieved the loss of Albert, 13 years ago, our family knew that as believers we will not only see him again but we will live out eternity with that special brother who influenced all our lives enriching it as nothing else ever could. Greta, Gavin, Will & you, sweet girl have lived better lives than “ordinary” families because of God’s gift to you. Nora Rose gave you many hours of love & sweetness (& stinkies too) that you will carry forever & I know beyond a shadow of doubt that NorNor is having the time of her life in heaven running around Jesus’s feet just waiting for the opportunity to jump into His lap, wrap her arms around His neck & give him a big old sloppy kiss & say, “is it time yet? Huh, Jesus, is it time to rapture your children so I can hug my family again, huh, huh??” So hang tight, m’dear, soon & very soon we will see our Nora & Albert but best of all we will all be with JESUS, never to be parted. His grace is sufficient, His love is enduring, His peace in this troubling times is magnificent & His comfort is incomparable. Drink it in….like a very fine wine, only its supply will never run dry. His love is like none other & gets sweeter every day.
I love you & pray for you, William, Gavin & Greta,
Charlene (aka your scrabble buddy)
Happy Birthday sweet girl!
I think of Nora so often, since the day you called to make your appointment at Stork Vision and loved following your families story of love. I still think of her first whenever I see a heart!! Blessings to you all.
I was working as a NICU nurse when I first became aware of Nora’s beautiful birth story. I signed on to follow along as you shared your family’s journey. Your words of love and faith often compelled me to examine my own thoughts and feelings more deeply, growing my compassion and empathy. I was a better nurse to families in similar situations because of being exposed to your perspective – and to Nora’s sweet LIFE story.
After so, so long, I thought of Nora yesterday – randomly it seemed. Now I know why. Happy birthday in heaven to one of the dearest babies I was lucky enough to ‘care’ for. ❤️
Happy Heavenly Birthday, Sweet Nora Rose! I think of you and your family as often as I see a heart God places on my path… a leaf, a stone, a flower. And last night as I was walking in from putting my chickies in their coop, I heard the sound of strong wings flying over my head… three geese, and I prayed that your family would continue to find refuge under the wings of God; His faithfulness like a shield around their hearts.
I always remember your sweet girl when someone mentions trisomy 18. Someone I know recently had a baby with this condition and I immediately thought of Nora and came back to look at your website. Such a precious girl. I am praying their boy gets to experience many memories like Nora did. Thank you for sharing your story.