We love sitting here in the evening reading over the comments that our blog has collected throughout the day. You have no idea the comfort and encouragement we gain from all of your love, support and prayers. If I’ve said it before, I say it again! Thank you!
Nora went to the pediatrician today for another weight check. She’s still holding steady at 4 lbs. 10 ½ oz! I hoped she would have gained something more, but at least she’s not losing. We’re increasing her caloric intake to see if that helps any.
I find it highly amazing, completely beautiful, and incredibly wonderful that this sweet bundle of love has had so much to teach me (and apparently thousands of others). In a society that would suggest otherwise, Nora proves to me every day that her little life IS valuable. She reminds me that life really is too short to spend it being angry, fearful or bitter. She’s taught me to live in the present moment, not to worry about the future or to take my or anyone else’s life for granted. None of us are guaranteed tomorrow. Even if we were, the tomorrows will eventually run out – faster than we ever thought possible. Perhaps that sounds macabre and unpleasant. We don’t like to be reminded of our own mortality – or even worse, the mortality of our loved ones. If we had it our way we would all live forever, happy and healthy, without a care in the world. That unattainable earthly desire stems from a longing that was set in our hearts before we ever even breathed our first breath.
He has made everything beautiful in its time. He has also set eternity in the hearts of men; yet they cannot fathom what God has done from beginning to end. (Ecclesiastes 3:11 NIV)
No. I cannot begin to fathom any of it. While I might not understand it, I still chose to accept it and trust it. God HAS NOT let me down, even if I may have questioned it in the moment.
iwillcarryyou 
It’s amazing to me to read the titles each day. There was a time we were hoping you’d get just SOME time with Nora…even just an hour. Day 17 and going strong…simply wonderful. Thank you, God!
Kate,
I cannot thank you enough for sharing this story on facebook! I have religiously read each blog every day and found myself adding Nora and her family to the top of my prayers daily. It has amazed me to a point beyond words how humbling someone who is only a few pounds can be. She has made it quite clear that the trivialities of life are really not what is important. Family, faith and love are what conquer all and I am blessed and privileged to be able to follow along! Thank you!!!
Jamie W.
I shared earlier this week what was in my spirit concerning Gods works through you, Nora, and your family. How amazing Your transpancy is and how it is inspiring others. What I did not say is how much your words are affecting me. Especially this post, I check your blog every morning, so I had already read day 17. As with all of us, we all have our trial along our journey, as I threw up my hands to surrender in my current circumstance, I felt led to check again, and as if God was speaking directly to me through you. I cannot say thank you enough. Nora and your family are a part of my families conversation and prayers daily, my 5 year old asks about Nora every time I pick up my phone, he thinks she looks like his baby sister who is a month older than Nora.
I believe the trials in life are God’s way of drawing us closer to Him, so in an odd way He let’s us go through it just because He loves us and wants our full attention. He surely has mine and he show’s us miracles everyday when we take the time to look they can’t be mistaken for anything but a miracle. Just look at baby Nora for example 🙂
*typo* shows
I check your blog several times a day hoping for an update. Your daughter is the sweetest little girl, she brings tears to my eyes and your updates are so uplifting and encouraging. I gave birth to my beautiful twin girls September 2,2011 and was surprised to find out they both had Pierre Robin Sequence which resulted with cleft palates. At the time it was overwhelming since they require special feeding and a lot of attention to gain weight, but we have gotten through it. These last two months have been very hard on us as a family because our little Ally has obstructive apnea and all of the wonderul doctors at Cincinnati Children’s are having a difficult time trying to decide what exactly is causing it and what can be done to fix it. If repairing her cleft won’t work then they will be trying a jaw distraction and if that doesn’t work either then it will result in a tracheostomy. I don’t know what will end up happening and I found myself often questioning God as to why this would happen to such an innocent beautiful little girl. I told myself that God gave us this blessing because we have a strong family and we’re able to provide her with the best medical care there is being so close to Children’s Hospital. I know that soon we will have an answer as to what her future holds, it may not be what we want but God has a plan for all of his children and I know that no matter what happens to her it was meant to be that way.
With all of that being said I am so touched and inspired by your honesty and faith in your situation. I pray for Miss Nora Rose everyday hoping that she continues to thrive and overcome the odds that are against her. I am well aware that my situation doesn’t even begin to compare to what you are going through but I wanted to share with you that you have made me look at my daughters struggles as something that was presented to us for a reason rather than a horrible thing that made me question God’s reasoning. I will continue to pray everyday for you and your family that you continue with your almighty strength and that your little angel grows and continues to show the world what she is made of!
Carrie
This is beautiful! We shouldn’t expect tomorrow or next year. We need to live for today and love the present and make it worth all that it is. Its amazing how much Nora is teaching us all and how much God is using such a little thing to make such a BIG impact on sooooo many!
Gosh what a great baby 🙂 Look at all these wonderful things she’s doing in other people’s lives and she doesn’t even know it yet. I too have taken to loving reading the comments as well and seeing the impact she and you and God are having on so many!
I love every word of this post. So well stated as always Aleisa. You and Nora remind me of many of these things daily as well. Whenever I start to worry about tomorrow with all that is going on God will bring Nora to mind, and I pray for her and you and just refuse the anxiety and and do my best to enjoy that moment for what it is.
True none of us like to think about our mortality but the truth is, none of us are getting out of here alive – unless of course we’re still alive when Jesus comes back but in either case, the light and momentary troubles of this rapidly fading world will be gone in an instant and all that matters is what we did here to prepare ourselves for our real home, our everlasting home, and how we taught others to do the same. Nora has already done so much more of this in 17 days than I have in almost 40 yrs! How humbling.
Truly what a treasure you have been given, I guess because God knew you would not let a smidgen of it go to waste and you would bless so many through it all. Thank you for sharing your sweet Nora with all of us. She is a beauty to behold and a privilege to watch God’s light shine through!
I love this, Chandra! 🙂
Your words today reminded me of the quote below that was given to me in times of wonder and crippled faith. -God Bless!
Why be saddled with this thing called life expectancy?
Of what relevance to an individual is such a statistic?
Am I to concern myself with an allotment of days I never had and was never promised?
Must I check off each day of my life as if I am subtracting from this imaginary hoard?
No, on the contrary, I will add each day of my life to my treasure of days lived. And with each day, my treasure will grow, not diminish.
~Robert Brault
Your strength and courage to fight the good fight of faith is amazing to me! This little bundle of joy is truly a blessing from God. How she is teaching so many how to live is a testimony of an ever present God in our lives! I look forward to reading your entries each day.
Many Blessings,
Shelly
Our Julia (with full t18, too) certainly taught us that every single day is a gift. Thank you for sharing Nora with us. She is too precious for words.
Since discovering your blog, I often think of you at random hours of the morning as I’m feeding my little 6-week old cherub. Nicholas is our third child and we had a somewhat emotional rollercoaster of a pregnancy after an amnio at 16 weeks confirmed he has Down syndrome. Knowing how difficult that news was for us, even though we were able to bring home a perfectly healthy baby boy who just happens to have T21 (and he is an absolute blessing), I am given even more perspective on what an amazingly brave and strong woman (and couple, and family) you are to go on this journey. I cannot begin to know the pain you are experiencing, but I know that Nora and your family are touching many lives. She is a beautiful girl, and I hope that you are blessed with many more days with her. Your family is in my thoughts and prayers (all the way from Australia) xx
You are the true epitomy of “living in faith, not in fear”. We think of and pray for your family daily. God Bless!
Thanks for the daily dose of Nora. As always, it made me smile and thank God for her and your beautiful family.
Nora is beautiful! And you are such a strong and wonderful Mommy! Praying for your family every day!
Thank you for sharing your precious, beautiful Nora with us. Thoughts and prayers coming to you from the Florida Panhandle.
she looks so beautiful and reading your words make me just want to be a better wife and mother. My family is now including your family in our nightly prayers. all our love!!!!
She has been and will continue to teach so many of us ! We are so happy and honored that you have chosen to share your journey, to enter the community with this- it allows us to love and pray and learn. What a blessing you and your family are. Thank you!!! Your willingness to share has helped my students to track Nora’s life as “real” (not just a hypothetical story) she is a gift to them, a gift of life that is so precious, that they are impacted daily by! It is a gift to hear them ask about Nora, to know that her story and yours is impacting them in such formative times! Thank you!!! Ps- I just love the picture of your son with Nora from yesterday!
I find myself thinking of Nora and your family many times a day. Words cannot adequately describe how touched I am by your journey, your faith, your precious baby girl. Just over three years ago, we welcomed a sweet baby boy who was born with a little extra. While we did not know that Ian had Down syndrome until his birth (I turned down all the tests), I knew in my heart that he had DS. I even asked my OB, “If there is something wrong with the baby, if the baby is born with Down syndrome, how will you tell me?” And six days later, and by no coincidence on Easter Sunday, we welcomed a baby boy with Down syndrome. And, oh, how I think all the time, “If I knew then what I know now…” Ian has brought us nothing but joy! We now know what is important in life. We know that life is meant to be lived one day at a time. I felt like I had wasted 33 years of my life focusing on everything in life that did not matter. My son saved me, and I didn’t even know I needed to be saved. I feel privileged to live a life where every single thing my son does is remarkable. We are privileged to be Ian’s parents, as you are privileged to be Nora’s. I still remember how my OB (the one I had asked about DS but was not the one on call when I went into labor) came into my room when he was just one day old. She sat on the side of my bed, we cried and she told me, “Every life has value. EVERY life has value.” Your daughter’s life is deep, meaningful and purposeful. She is meant to be, was always meant to be. She has spread the message that LIFE is to be celebrated… to thousands of people. Thank you for sharing your daughter with us. She has touched more lives than any of the rest of us has. May God bless her and you and keep you all in His loving care. And please keep those photos coming! Her sweet little lips, her eyes full of life and wonder, her little baby legs and toes… she is beautiful!
Just wanted y’all to know that I found your blog through friends on Facebook, and I’ve been following ever since. The faith God has given you is tremendous! Thank you for sharing it with us. Y’all are in my prayers daily. What a blessing sweet little Norah is.
Jeremiah’s plea to God keeps coming to mind as I pray for you.
“Remember my affliction and roaming, The wormwood and the gall. My soul still remembers And sinks within me. This I recall to my mind, Therefore I have hope. Through the Lords mercies we are not consumed, Because His compassions fail not. They are new every morning; Great is Your faithfulness. The Lord is my portion, says my soul, Therefore I hope in Him!” (Lamentations 3:19-24 NKJV)
Keep hoping in Him and may you feel his mercies every minute of the day.
It’s my pleasure at the end of my day here in Europe to check in just to see how little Nora is doing. Seeing her pics gives me all the peace and relax ; ” ok, she’s doing well” – I say to myself , say a little prayer for her and for you Mama and Dad , thank God for her life and go to bed. 🙂
Each day as I anxiously check my e-mail for an update on precious Nora Rose – I wonder what is going to say today? Each time I am amazed at the words that you speak to me and to others reading this blog. We have no promises for another day and I find that I don’t appreciate or thank God for what I have. My small stepping stones that I feel are large hurdles – are nothing compared to what you and your family experience. thank you for your honesty and your words that I feel truly come from God. Oh how your family and Nora Rose is teaching so much to us. I am thankful that there shows no weight loss for her and pray that the increased intake will help put on the pounds she needs to continue to thrive as she has. I pray that those precious little legs and hands will soon be full of folds that are so much fun to clean between. Hold strong to our precious Lord and lean not unto your own understanding but what God has for you. Blessings to you – Jackie
I carry little Nora in my heart everyday! Thank you so much for your beautiful blog and healing words. She truly is an incredible gift with those sweet tiny hands and little snuggles. May God continue to bless you and your wonderful family! Love and prayers from Minnesota!!
Thank you as always for sharing a piece of Nora with all of us. I too think of Nora many times throughout the day and I love seeing the sweet pics of her every evening. I can’t say enough how adorable and precious she truly is.
Nora- such a tiny teacher to so many. I am so grateful to you and your gifted mommy and your faithful and loving daddy and brother and sisters…. For you all have helped my faith renew and returned me to prayer. I pray for you and your family daily. Thank you for allowing me to share in your days…
She is such a beautiful little girl. She and you have bolstered my faith in God. I pray for your precious girl daily.
I just found the link to your blog on FB;I believe you know my husband Justin Hiday. Tears were just streaming down my face reading the journey that you all have been on with little Nora. We just had a little boy (Ethan) last March; so I know how difficult all this has been for you as a mother. I just want to thank you for your openess and honesty about how God is working in your life and carrying you all through this time. We will be praying for you all! Blessing from TN-Alison and Justin
So many prayers being offered from my family to yours everyday. Nora is a miracle! You inspire me to be a better person and to appreciate the little things. Thank you so much for sharing your personal story and amazing family with us.
Prayers for sweet Nora Rose and her loving family. Thank you so much for sharing your journey. I think about Nora and family daily. Through your family’s journey, I have learned to not take anything for granted and to always be thankful for all that God gives me. Love and prayers to all…
God has a way of teaching us the things we really need for that moment. Your faith is amazing. Praying for your family and Miss Nora.
I CANNOT WAIT EACH DAY TO FIND OUT HOW LITTLE NORA ROSE AND THE REST OF THE FAMILY IS DOING. SO THANKFUL SHE IS HOLDING HER WEIGHT, CAN’T WAIT TO HEAR THAT SHE IS GAINING. I THANK GOD EVERY DAY THAT YOUR FAMILY IS SO BLESSED TO HAVE SUCH A MIRACLE. SHE IS AMAZING, AND WITHOUT EVEN KNOW IT, IS TOUCHING SO MANY LIVES EVERY DAY. THANK YOU SO MUCH FOR SHARING WITH ALL OF US YOU AND YOUR FAMILY’S JOURNEY. WELL I HAVE GOT MY “LITTLE NORA ROSE FIX” FOR THE DAY, SO GUESS I WILL SAY MY PRAYERS AND GET SOME SHUT EYE. CAN’T WAIT EVERY DAY TO HEAR FROM YOU. LOVE AND PRAYERS TO YOU AND YOUR FAMILY.GOD BLESS.
So thankful for Beautiful Nora. Such a testimony of God’s grace and faithfulness!
Suzie Chatel