Jesus replied, “You don’t understand now what I am doing, but someday you will.” ( John 13:7 NLT)
No… Sometimes I feel like I don’t understand at all. Not so much as it pertains to Nora right this instant (as she’s sleeping peacefully in my arms), but the horrendous calamities that so MANY people are faced with. The path I’m stumbling along seems like a smooth stretch of brand new asphalt compared to the paths that some other families have been thrown down. I cry for these people. I pray for peace to encompass them. No matter what we’re faced with in this broken world, I find incredible comfort that SOMEDAY we’ll understand.
Today’s pictures of the sweetest 8 week old:
iwillcarryyou 
LOVE THE PICTURE OF YOU AND LITTLE NORA ROSE. I DON’T KNOW WHAT I WILL DO, BECAUSE I LEAVE IN THE MORNING (MY YOUNGER SISTER AND MYSELF) TO VISIT OUR OLDER SISTER IN SHIPSHEWANA, INDIANA. I PRAY SHE STILL KNOWS WHO WE ARE, SHE HAS ALZHEIMER’S DISEASE. IT GETS HARDER EACH TIME WE GO SEE HER, BUT PRAISE GOD WE ARE STILL ABLE TO GO. SOOOOO I WON’T GET TO READ YOUR BLOG AGAIN TILL NEXT SUNDAY. BUT I WILL CATCH UP AS SOON AS I GET HOME. YOU ALL WILL STILL BE IN MY PRAYERS. GOOD NIGHT AND GOD BLESS.
Prayers for you and your sister, Ethel. I will miss reading your sweet comments each morning.
Ms. Ethel, I love reading your comments too! Prayers for safe and happy travels.
God bless.
What’s wrong with little miss in picture number 2??? Who made her cry? Please get her a bottle STAT!!
Thanks for the reminder that even the horrible things life brings will bear beautiful fruits someday, even if we cannot possible comprehend how. As always , amazing insight.
Happy 8 weeks, little poppet!
How much does she weigh now?
I met a little girlie 4 weeks old with trisomy 13 (Patau syndrome) last weekend. Hope she’s doing as well as little miss N here in a month’s time.
That gives me hope for my little granddaughter, she is due on Oct 4 with full Trisomy 13. Her mom and dad(my son) are cherishing every moment because they have been told she will probably not make it through delivery. They are trusting God for her life and her purpose and loving her while they can!
Cathy – congratulations on your upcoming grandbaby, and my commiserations for the fear and stress that her diagnosis must bring to you all.
About prognoses: it is possible that you’ve all been mis-informed, although of course I don’t know about this particular little baby of yours and what issues she is facing. Baby Sarah who I met was having something of a hard time with apnoea but was otherwise lively and well – the last time I saw her she was yelling her little head off for her dinner. 🙂
Patau is actually LESS severe, in terms of prognosis, than Edwards’ Syndrome (T18) like little miss Nora here has. The prognosis is about twice as good – for example, 1 in 10 live-born babies (for the little ones with the most severe medical challenges, reaching full term will be unlikely) with full Trisomy 18 should live to their first birthday, and 2 in 10 with Trisomy 13 will. It’s about the same again for reaching their 10th birthdays: of 1000 babies born with T18, 100 will see their first birthday, and 10 will see their 10th birthday. For babies born with T13, it will be 200 reaching their first birthdays and 40 reaching their 10th birthdays.
Obviously, as with all things, it’s really individual – about what specific medical concerns each baby (person) has, and what medical care they are able to access. It’s not unusual for people with T13 (who don’t have a catastrophic heart defect – the most serious concern for any baby with a full trisomy condition) to reach adulthood. Increasingly as babies and children with these diagnoses are receving better care, the survival rates are just going up and up.
My very very best wishes to you all. I hope you’re able to welcome your granddaughter into the world to thrive and grow, as all children should.
Becca
best nappin’ in the world!
God Bless you sweet Nora… Prayers area always being said. Thanks for sharing your photos with us.
I just read a quote this morning that seems fitting…
“Life can only be understood backwards; but it must be lived forwards.”
Soren Kierkegaard Danish philosopher (1813 – 1855).
Keeping Nora in our thoughts and prayers today and every day!
Though I read your blog on a regular basis, this the first time I’ve commented. Nora is so sweet and I pray often for her and your family. Just wanted to thank you for daily reminding me to treasure each moment with my little guy. Often those of us who give birth to healthy children forget just how precious each day is. God bless you.
out of curiosity, where do you live? I am curious how far away people are in support of baby Nora?
Momma and Nora….exhausted and compeltely blissful. Lovely!
Nora Rose! What a beautiful name and beautiful creation from God. This little girl has inspired so many to look for their faith in the Lord, including myself. I used to always chalk my lack of maintaining my faith in church up to being a mother with two babies, w
My phone has seemed to mess up and post this before I was finished. So I’ll just jump right into the point of my message.
Nora Rose has saved me from the path that my life was on. She has given me hope, courage, faith, and above all, the desire to trust in Jesus. She is such an amazing blessing to this world and I truly believe that she will fight this. I believe that she has the hands of the strongest person surrounding her at all times. HE will not let her down and HE will continue to minister through her.
Thank you for allowing us strangers into your life. Thank you for being honest and open. Thank you for helping me.
Nora Rose is an angel and is truly beautiful. May God continue to bless you and your family through this journey if life he has planned for you.
thanks Becca for the words of encouragement. Our granddaughter might have a hypoplastic(sp?) left heart-diagnosed by ultrasound-which is a serious issue. We are just waiting and praying, hoping for at least a little time with her.
It has been a while but I wanted to check in on Nora. Hope all is going well