On August 14th, 2011 we found out that our family was expanding, as would soon be my waistline. We were ecstatic, over-the-moon excited. It was a typical pregnancy in many ways, branded with the standard morning/all day sickness, fatigue, cravings and aversions. During the routine 20 week ultrasound, our world grew fearfully dim as our doctor enlightened us of a couple of soft markers that were noted by the ultrasound technician. It was the day that the medical terms ‘choroid plexus cyst’ and ‘single umbilical artery’ became part of our vernacular and would become repeatedly Googled over and over again in a frantic search for hope over the next few weeks.
At 24 weeks, we had an amniocentesis done just for “peace of mind”. Our doctors and geneticist reassured us that based on our ages, medical and genetic history, we had a 75% chance of having a healthy, “normal” baby. We were not prepared for the results of that test on January 9th, 2012 that came back positive for full trisomy 18. Our whole world came crashing down. All of our hopes, dreams and aspirations were seemingly shattered into a million pieces.
But only for the grace and mercy of God were we able to keep breathing. We were given the option of terminating the pregnancy as “most of these babies won’t make it to delivery” and “will likely only live a few hours, maybe days”. Why prolong the inevitable? I asked my best friend through a veil of angry heartbroken tears. Her response gave me the clear perspective that this baby’s life was just as important and meaningful as ANY life. “Aleisa, we’re ALL going to die someday,” she said, “Does that mean we should just pull the trigger now?” It was then in that moment that I made the promise to my unborn baby, “I WILL CARRY YOU,” placing all of my faith and trust in a God who I was very angry with, but who I knew fiercely loved me — and my baby.
On April 17, 2012 Nora Rose Yusko was born. Against all odds, the sound of her first cry filled the room and filled our hearts with hope and extraordinary love. As I held her close and looked back into her beautiful blue eyes – I finally began to understand the meaning of true unconditional love. There were conditions and a serious diagnosis attached to this precious baby (trisomy 18) – scary, unfamiliar, somber, life limiting conditions that ran the risk of completely breaking my heart and forever changing life as I knew it. But to hold her, to kiss her skin, to breathe her in and absorb the absolute wonder of her mighty little life – none of those risks mattered. She was perfect in my eyes and I wouldn’t have traded her or the experience of having her as my daughter for anything in the world.
“These babies don’t typically live long…” the harsh and foreboding words of doctors, hospice affiliates, and counselors echoed in the dark recesses of our minds. In blind faith, we put one foot in front of the other, taking special care to treasure each and every moment. The days turned into weeks, the weeks turned into months and the months turned into years. As time went on – those words lost their power over us. In many ways, Nora was a typical baby who was quite able to communicate with us, expressing her likes and dislikes. Of course she had her developmental and physical delays – but just as with everything else, Nora was going to write her own story and do things her own way. She loved to play or cuddle with her cool big brother Gavin and her sweet big sister Greta. She truly enjoyed being “just one of the kids”. Taking multiple baths (“baffs”) a day with Mommy or Daddy in the jet tub was her all-time favorite thing to do. She was likely the cleanest baby there ever was! We started off with taking her on walks in the neighborhood and then even had the opportunity to take her on two vacations up North with us. For just over two years (777 days), God lent us this beautiful little soul. She made a brilliant and unforgettable impact on this earth, and touched countless lives all over the globe. The sunny days that we hoped would never end clouded over in late May of 2014. We spent 15 formidable days in the hospital when Nora’s stomach inexplicably flipped. Emergency surgeries, blood transfusions, surrounded by towers of medical equipment and a team of phenomenal doctors and nurses in the CICU – there she was. Despite all best efforts, her time with us drew to a close in the very early morning hours of June 3, 2014. She left this world just as she entered it — surrounded by those who loved her fiercely. We are forever grateful for the gift of knowing Nora Rose Yusko.
“I knew you before I formed you in your mother’s womb. Before you were born I set you apart and appointed you as my prophet to the nations.” (Jeremiah 1:5 NLT)
This is our journey from the very beginning: In the Beginning
Nora’s exquisite birth photography: Beautiful Beginnings
May God be with you and your family. Our Mary was born with Down Syndrome March 22, 2011 and she is the joy of our lives. I too was shocked and unsure when we found out after she was born, but there isn’t ANYTHING in this world that I would trade her for. She is absolutely amazing! Best wishes.
My thoughts are with you. You are brave and I admire what you are doing.
I think your strength and courage is amazing . I look forward to following your story! I look forward to watching your baby defy the stats that the doctors speak of. To happiness and joy through your pregnancy.
A friend of mine received this same news last year. Every test they ran prenatally came back with the same diagnosis, trisomy 18. Her little boy was still born in March of last year but not because he had trisomy 18. His umbilical cord was wrapped around his foot. However he did NOT have trisomy 18. He was perfectly normal. So don’t always believe all of the tests, they can be wrong. Praying for you and your little one.
My child has been given this diagnosis as well and I just found out yesterday. I’m really praying that they are wrong about her too. Knowing this gives me hope. Thanks for sharing.
I admire your presence of mind. Go well and thanks for sharing your hearts and love.
Twenty-three years ago I received the news around 30 weeks of pregnancy that our first baby had spina bifida. I naturally went into labour at 36 weeks and Katrina was delivered via caesarian. Even though our baby lived for only a week after birth, those seven days we spent at the foot of the cross with Mary are ones we will always treasure. Although we didn’t get the miracle we hoped and prayed for, there were other little miracles that happened. One of them was that the little white dress that Katrina’s Godmother bought for her in another city was able to be couriered over to us immediately because a courier van coming our way was parked outside the mall. The dress arrived the day before Katrina died, so she got to wear it during her final moments and was buried wearing it. She had the most beautiful funeral and one of the women who attended wrote us a touching letter telling us how much Katrina’s “Mass of the angels” helped her. Like your grandmother she too had been discouraged from bonding with her baby in the days before her baby died and had also followed advice not to go to the funeral. Advice she regretted.
No matter what happens, you will never regret your decision to give your baby a chance at life.
Thank you for your beautiful witness to love and life and I pray you get the miracle you hope for.
That’s just lovely Stella!
God only gives special babies to those he knows will treasure them.. You giving her life is the greatest gift of all, no matter how long that life will be, its a gift!
My 4th child was diagnosed at 29 weeks with a Congenital diaphragmatic hernia, and was given only a 10% chance of survival. We too were offered the option to terminate, but we chose to give her life. She was born at 35 1/2 weeks and lived for 29 days, and I will tell you that I am glad I had those precious moments with her, and no matter what I would not have traded to give her that life even though it was short. Stay strong and take lots and lots of pictures, there is never enough!
I was shown this website by a friend, and wanted to tell you how I haven’t stopped thinking about you and your family since I started to read it. My daughter Nora was born Feb 28, 2011 (she just turned one), she has T21 and Tetrology of Fallot, we are so blessed to have her in our life. When I read your daughter is a Nora, and also has ToF, I felt a connection even though we will likely never meet. T21 seemed like such a big deal a year ago when she was born and diagnosed, and now it’s our normal. I can’t imagine the turmoil you are in not knowing how your Nora’s trisomy will affect her. May you continue to know God’s strength and feel his love.
Emily C – Cincinnati
Emily, I’m in Cincinnati also. My daughter has a deletion to 11q (she’s almost 8 months). I would like to connect. firstname.lastname@example.org.
My older sister is pregnant with a baby the doctors said will not live but deep down in my heart I believe that this baby has a chance and when god wants to take her it’s his choice. I’m only 13 but this is effecting me as well as my whole family people tell me that they don’t think I should know what’s going on with my niece but I know everything me and my older sister are sooo close and my sister will not build walls to prevent everyone else to get in to her life.
This was a beautiful post for a 13 year old… stay strong for your sister, it will mean so much to her. x
Hi Hanna, I know you posted this a while ago, but I hope you get my reply. I just want to say that I’m 13 years old as well, and aunt to 8. I have six siblings, two of them grown sisters. I’m praying that if the baby’s still alive, for her health, and if not for comfort for you and your sister and everyone else involved.
Very well written, and yes, it is always GOD’S choice, NOT ours.
1heart2souls has Nora Rose and your family in the fold of their hands. We have also asked some of our prayer partners in holy places to pray for you as well. God has heard the whispers of your love and has seen the testimony of your faith. theresa@1heart2souls
I learned of your plight and your blog through loft3. Your story is moving and I’m sure there are many people who are now praying for your family because you were brave enough to share your story.
May God be with you as you travel this newest road. Wishing your God;s love and peace…
May God Bless you always. My thoughts and prayers will remain with you and your family.
Only love and respect to your family. It melts my heart to read your willingness to give her a shot at life, letting God be in complete control. You have inspired many.
Praying for you, your famiy and Nora Rose. On December 29, 1995 I gave birth to my daughter Kalee Moran. She also had Trisomy 18. She did not make it through the delivery. It was a day of mixed emotions…the birth of my first child and the reality I would never get to spend my life with her.
Thank you for sharing your precious journey. Nora is a beautiful expression of God’s love for you.
Congratulations on the birth of precious, beautiful, perfect little Nora! God blessed me 2.5 years ago with a little angel of my own, our Chloe, who happens to have Trisomy 21. Always a believer in Christ and His purpose for our life, even when I was pregnant (a chance of 1 in 20), I prayed for His will, His peace, His protection and His health upon her. I never prayed that she would be “normal,” because I knew deep down in my heart that she would change lives and that she would be made perfectly, exactly the way He wanted her. And I can’t sit here and say it was an easy journey emotionally (especially at first), but I CAN say that she is the biggest blessing we have. She changed the way we look at the world, she made us compassionate, she made us crave God’s peace and understanding. Every day was a journey, a fight, that she had to be brave enough to push through milestones and I had to be brave enough to push through all the negativity and stereotypes of society. God never gives you more than you can handle, and God gave you Nora because you need her as much as she needs you. I have a friend whose son had Trisomy 18, and they too embraced God’s purpose. God gave him to them for just over 6 months, and he was so beautiful, and such an angel. I can’t say I know for sure what you’re going through, but just know that people are praying for you and your family, and that God loves you so so so much, He will carry you always.
You don’t know me. I learned of your family on a website. I just wanted to tell you that you and yoru family have touched and inspired me more than you can ever imagine. You were blessed with baby Nora for a reason! Thank you so much for sharing your story. I will continue to pray and think of little Nora and your family! You are an amazing family!
Coming across your blog today I couldnt contain my tears. Your precious gift from God is an inspiration, to see that little perfect baby fighting so hard. Your family is in my prayers, your daughters sweet face will be etched into my heart forever. May the grace of our Lord bless your daughter always.
Thank you for sharing this journey of life. Thank you for giving Little Nora a chance for life. The story of your love, faith and value of life is inspiring.
I have seen several of my friends post on Facebook to pray for Baby Nora and I have prayed but never looked into the post until tonight. I have just started reading this and I am brought to tears. I admire your strength!! You truly are an amazing person!! Please continue to keep the faith and let God carry you as he has for this time. He will not let you down he will be with you every step of the way. I will continue you pray for all of you. Keep up the post!! You are a blessing to sooo many!!
Also found your blog through a friend’s FB post, and I’m so glad I took the time to read your story. WOW! I am following your blog and praying everyday for your family and baby Nora Rose. I pray a calming peace as you get to enjoy this miracle and please let us know what else we can do to help you. God bless you and thank you for sharing Baby Nora with the world, we will forever be changed and MORE faithful to God in Heaven because of HER.
Our prayers surround your beautiful family. Thank you for sharing that part of your heart that hurts and yet is dripping with love. You have renewed our hope in the human story and human spirit of a truly virtue filled earthly journey. God “must” be smiling…and Nora Rose, you are the reason, precious one : )
I just want to tell you how touched and encouraged I am by yours and Nora’s journey.. and how you have displayed such faith, and strength that comes only from Him. I will be praying for your family and your sweet baby girl. I was moved to tears constantly while reading your blog and looking at your stunningly gorgeous pictures. You have been blessed in so many ways. As a mom of 3 boys here on earth, and 3 babies in heaven (2 miscarriages, 1 stillbirth), I know much of what you felt. I remember holding my son Samuel, stillborn at 33 weeks, and praying over and over for God to breathe life into him. Staring at him for hours… hoping & praying that he would breathe again. But it was not to be in this life. I know we WILL see him again in heaven. God has given us such hope. So many blessings, and so much to be learned through these precious children of His. Thank you for sharing!! ❤
I just want you to know that I read this story on Facebook and am praying for your family. I want you to know that ya’ll have been a blessing to me by sharing your story and being such a testament of “Faith.”
Praying for your family! Our son Dawson who was born with Trisomy 18 and this past November we celebrated his 6th birthday. You can see pics of him and our family on Facebook at http://www.facebook.com/bradleyjosh
You are such an inspiration to me as a woman! I am wrecked by your faith and I’m sure the faith of your husband as well. Nora will be in my prayer journal! I want to root on this life… So sweet so special so worthy of thoughts not worries. Much love peace and grace to your house from mine! Thanks again…
P.s. Im thinking of starting my own blog… This makes me want to do it even more!!
just found you on FB through a friend. our 10th baby has Down syndrome, and she is our greatest blessing. we just lost a baby (our 4th one waiting for us in Heaven) a few nights ago, and reading your birth story just touched my heart today…so very happy for you, and I will be praying for your beautiful family and precious Nora. Hugs from Oregon.
Here is a friends blog who lost her baby to t18. She is a wealth of knowledge and an awesome chrisitan so if you need someone who knows what a miracle 12 precious days is please look her up.
My husband and I shared a similar day on October 7th 2011. Our daughter was diagnosed with severe hydrocephalus and we were told she might not even survive the pregnancy, and offered termination. It is only because of our FAITH, and trusting the truth that she is fearfully and wonderfully made that we have walked this path with grace. One brain surgery later, she is now 8 weeks old. Keep sharing your story as we did ours!! I’m certain it’s part of the reason we were given her in the first place…so He will be glorified. Wwww.jascawleyfamily.blogspot.com. You’ll be in our prayers:) Sarah.
I was made aware of your blog through a Perfect Lily. I have gotten myself caught up on your journey and your sweet Nora. She is a miracle. Thank you for sharing her story with many. As you can see, prayer warriors cannot stop thanking god for what he has done in your life and obviously your story is touching many, many people. By the way Nora is so beautiful!!!!! Enjoy snuggling! Looking forward to many more posts! Shannon
I just came across your story from a friends page. I just wanted to tell you about my cousin Rachel she recently turned 10 years old and she to has trisomy 18. She has been a miracle to her parents and family. She attends school, she may never lead a ” normal ” life but she brings smiles and happiness to all of those around her. So we will pray for you and your family just know there is hope.
My daughter, Emma Faith, was diagnosed with Trisomy 18 at 20 weeks after several tests/ultra sounds/amnio…she also had 4 heart defects (Tetrology of Fallot) as well as a cyst on her brain. We chose to carry her. as you have, and never regretted it for a second! She was born at 29 weeks weighing in at a Mighty 2 bs and 1 oz…14 inches long. She lived for 2 hours and 45 glorious minutes…it was precious! I look at Norah’s beautiful pictures and find your family so very blessed! To have Nora at home and to have her with you, to hold and feed and love is just a true blesing and I hope you know just how lucky you are! We are a select few, us chosen to carry those tiny babies that God has blessed…I believe not everyone can handle it. You are strong, as I am, and you will finght for your baby, as I did. I am very inspired and feel as if we walk together in this situation! God Bless Nora Rose…she is AMAZING!!!! If you feel the need to converse with someone who has been there and still learning everyday to place one foot in front of the other, my email is email@example.com. The verse below was my motto…and there were times when I probably said it a thousand times in one day because that’s what it took to make it through. Philippians 4:13 I can do all things through Him who strengthens me. I will pray for you! Please know that Nora has a special angel watching over her…Emma may have been small…but she made a big mark on this life and many others! She brought several people to know God, and I think Nora will as well. God Bless You and Your Family!
I don’t think I have ever wanted something so desperately for a stranger as I do for you and your beautiful Nora. I read your story on Melanie’s blog and have been following you ever since. I feel blessed that you are sharing this journey and I am in awe of your strength and your faith. You have reminded me of just how much I take for granted, how powerful unconditional love is, how important it is to talk about it, and how truly wondrous our God can be. I am praying for you all every day (I don’t remember the last time I talked to God so much). Thank you. And God Bless.
I am with Corie, I don’t believe everyone could handle all of this. In fact, I count myself as such a person. I have 2 kids with my wife & we love them very much, but I am quite certain I could not live with them taking over our lives this completely and would even have them given up for adoption if they were to do so. Some would say that’s “abandonment” but I would say it’s still better than just having them aborted, I would at least search for someone such as this couple rather than just dumping them off on anybody. I am blessed in that our 2 kids have been very free of any incidents along these lines, they even are exceptionally easy in terms of them obedience, we receive compliments all the time in restaurants about how well behaved they are.
I love our 2 kids very much & they bring just a glow and warmth to my life. They are more important to me, besides my wife, than anybody or anything else. However, if I was no longer able to have a semblance of my own life, no longer could enjoy my own hobbies anymore, could no longer have any time alone with my wife without having to do all sorts of gymnastic shuffling of things to do it, I would absolutely want out.
If I had to compromise a little with those things, fine, so long as they aren’t eliminated altogether or suddenly become more rare than a $3 bill. It’s when they would take over to this extreme that I would be upset. I would either resent the kids for ending my life, or resent God for allowing them to be that way & destroying my life–and theirs–in the process. I don’t like being taken outside my comfort zone, if that means my comfort zone IS God to me, then I plead guilty.
As it is, our 2 kids have been able to just sort of “blend in” to our lives without us having to change all that much for them to be in it and to receive lots of love in it. I wouldn’t have it any other way. At the same time, I do mean it when I say I admire these parents for “parenting up” to the task and not giving up. I really have to admire the parents here for doing what it takes to make it work.
I am the Mommy to a 2 year 10 month old girl with Trisomy 18.. Joey Renee, is the light and love of our lives.. Your story speaks to my heart so much, for we knew prenatally that Joey had T-18 and we prepared for the worst case scenario.. We were amazed and surprised when we were able to bring Joey home from the hospital and in the beginning celebrated pretty much every day.. As time has gone by, we still thank the Lord for all the yesterdays, for today and we accept that only He knows what tomorrow holds, and that’s ok with us.. I wouldn’t change one hair on her head, or one second of all the time we’ve had with her, even if she went home to Jesus tomorrow, we have been abundantly blessed with so much more than we could have ever dreamed of.. Our motto is often we have yesterday and today, and tomorrow is a gift, not a given…
my great granddaughter Riley joy was born 12/4/11 she was 2lbs 12 oz. we didn’t expect to have a live baby so we were extatic about her being alive. she has spent the last 5 mos proveing the drs wrong. hospice just discontinued her care so that she can recieve therapy because she is doing so well. we have had our moments but she has shown us there are no limits to what our kids can do. the greatest support has been the tisomy 18 mommies site., praying for you and your family.
Sorry it sent too soon:)! I just wanted to say thank you for sharing your lives and struggles with us all! Your faith is amazing and I am praying for you all!!
thank you, thank you, thank you from the bottom of my heart for being so transparent with your life…your words are so honest and eloquent..your testimony so powerful…thank you so much for sharing His word and your relationship with our Sovereign LORD….thank you, thank you, thank you for sharing your family time….these most precious moments…thank you for sharing Nora with all of us…know that the family of God surrounds you and His angels take charge over you as we all listen…as we all pray!!!
Hi, I’m from Singapore and have been very blessed by your story. May this blog of another T18 baby in Singapore encourage you 🙂 http://mylittlevera.blogspot.com/
Thank you for talking to my son last night. He called me right after, so happy and I could tell he was crying. You all inspire him so much and I truely thank you:)
Just wanted to give a shout out to you and welcome you to the trisomy community. My T18 daughter just turned 3. Please check out our blog: http://buddzoo.blogspot.com. We were even on TV recently for a special report on life with trisomy 18. The link is also on the blog. If you haven’t made your way over here yet, the **BEST** resource for trisomy families is https://www.facebook.com/groups/T18Mommies/. I have learned so much about how to advocate and care for my daughter because of this loving, knowledgeable group of people. Please join us! God bless!
I live just north of Dayton, OH and have a daughter, Mari Rae with Trisomy 18. She’ll be 11 this August. Not enough space to write about all that she’s taught us! Her life journey has been difficult at times, but we wouldn’t trade it for anything. Tenderly, Chris
My brother was born with Trisomy 18 and despite all the things doctors told us he was constantly amazing them! He loved going to school and doing activities like bowling and horseback riding. He was known for finding trouble when they would put him in his walker…like cleaning off the teachers desk. LOL He was an amazing person that has had a big part in who I am today…and for that I am grateful! We were blessed to have him with us for 21 years. Everyday was a blessing! May you enjoy every moment with your blessing! I pray that God gives you strength, knowledge and wisdom in the care and love that you give Nora.
Thank you for undertaking this great journey, and for allowing us to come along with you.
Our family will be keeping yours in our prayers.
Your unwavering faith and dedication to the Lord, and to your family is truly inspiring. You remind us with each post that every day is a blessing, every breath is a blessing, every single moment with one another on this planet is a blessing. Thank you for sharing your beautiful story.
I praise you, I thank you and I will forever pray for you. Sharing Nora’s life with all of us through this blog is opening hearts and minds to the power and real presence of our Lord! May HE forever sustain you with HIS almighty Hands, and continue to give you the courage to be a witness to the world. Blessings be yours….
I am 13 weeks and baby has just been diagnosed with T18. We have also found out through the CVS test that is is a girl. Your beautiful baby girl is an inspiration as is your family’s love for her. I have three precious boys 13, 11, and 8 who are happily expecting a new brother or sister. This is where I am struggling the most. Could you offer any advice on how to tell them about it all. There is so much uncertainty and I am afraid to put too much on their little shoulders. Thank you again for your wonderful story…
God Bless you on this journey! Thank you for sharing your lives with us in such a personal and beautiful way. I have always read/heard these stories and just thought about how sad it was … now, I am in the midst of my own sadness as we found out yesterday that our baby girl-Marie (23 weeks gestation) has Trisomy 18. The diagnosis is so grim, but we are trusting in the Lord and His Divine Plan for us. Praying for you and your family!
God bless you and your beautiful family! Your testimony is wonderful.
I check in with your story every few days. I am amazed at that beautiful baby girl that you have and your wonderful outlook on life. You have a gorgeous family and you as a mom are such an inspiration to us all. God Bless you and thank you so much for sharing your story.
I was brought to your blog because of your strength and understanding that this is all out of your hands… and because you know, as I do, that God has a plan. God has a plan that we will someday understand and we were both blessed with the most special kind of lovelies… the shiny kind that God has a very special plan for. I will follow you, I will follow you as you carry your lovely Nora Rose and I will think and pray with thoughts you, your family and your lovely… right alongside my lovely little angel.
❤ My maddie
My friend’s baby was born July 19th with the same condition as Nora Rose. I have been following your site ever since. Unfortunately, her outcome is not going as well, and doctors are taking her off the ventilator today. I would really love to get you in contact with her for moral support if you are willing.
I originally learned about your family on the Cincinnati Birth Photography website and have been following your journey ever since. My son was born in September 2011. He is happy, healthy and truly a blessing. I often find myself overwhelmed as a first time mom but thinking of your family, and praying for them eases my stress. You are an amazing example of motherly love, time management and enjoying everyday as it comes.
My daughter Cora Rose (really) was born February 29, 2012. She died March 3. We spent the 5 months prior to her arrival in anguish over the doctor’s growing certainty that our baby had Trisomy 18. We have spent the 7 months since she died rejoicing in the 3 days that we loved her, held her, bathed her, slept with her, sang to her, prayed over her…may you continue to be blessed with strength and peace as you do the same with your precious daughter.
Dear Heart: I just found this site (10/28/12) and am in awe of your faith, your strength and your loving commitment to Nora Rose. Sometimes it is the smallest souls that are our greatest teachers.
I have been following your blog and praying for you and Nora since shortly after her birth. A friend of mine shared your blog on facebook and I’m not ashamed to admit- I’m a Nora addict. I know that you’ve been getting some conflicting reports on heart surgery for Nora and I wanted to give you some information. You probably already know all about him, but Dr. Jan Quaegebeur (Dr. Q) at NY Presbyterian Hospital is an amazing surgeon. Not fantastic bed side manner, but really a genius. Wherever you go, I only wish you the very best and will continue to keep you all in my prayers each day. Thank you for sharing your beautiful family with all of us. I don’t have the words to tell you how uplifting and inspiring you and Nora are!
I’ve been reading your story since about 2 weeks before Nora was born (accidentally stumbled upon your story via a mutual facebook friend). At that time, my own daughter was about 5 months old, happy and healthy, and I found myself beginning to pray for your family every day. I cried tears of joy when I found out Nora Rose was born, I told so many people about Nora’s birth, and felt so grateful that you had the courage to tell your family’s ongoing love story. I felt like I knew you all! Your story: the good the bad, the joyful and the sorrowful, the elations and the fears… these are things I’m pretty sure all parents face under the best of circumstances and you tell this story so eloquently and with such faith and gratitude and it’s been such an inspiration to me, both as a new-ish mom and as a Christian. In the last few days, as I’ve struggled to make sense of what happened in CT, your blog and your sharing of your faith has been a source of huge comfort to me and I want to thank you very much for that gift.
I wish you and your family many blessings this Christmas and in 2013.
I was given your site today from our Hospice nurse. My daughter, Hope, turned 21 days today with Mossaic Trisomy 18. I feel so blessed to have this time with her. She has exceeded every expectation the doctors have given her. Even now, they count her days. I just love your strength and trust in God. God has blessed us with given us this time with Hope. We never expected to leave the hospital with her. I’m thankful for every day. Your site has been such an inspiration to me. Some days are harder than other but my trust in God is getting me through. He is good. I would love to get some information from you on the care you have chosen for Nora. We have not had any ultrasounds or Echocardiograms on Hope since she was born. She seems to have the Trisomy 18 stamp and we were guided to Hospice care. She is not on a feeding tube, she takes her bottle and her breathing is fine. She was diagnosed with a heart defect when she was 17 weeks gestation. Any advice you have for us is greatly appreciated. Thank you so much for sharing your story. My favorite part of your blog is Nora could never have fulfilled her life purpose as a “normal” baby. Nora’s story is so inspirational!! I’m just thrilled to have found your site. 🙂
I admire your courage and strength! You are such an inspiration! Your baby Nora is just beautiful! So sweet! A friend I just met last night told me about your blog after I told her, briefly, about our daughter, Hope, who also had Trisomy 18. Hope was born March 18 2003 and lived just 7 short hours. She was such a blessing, if even for those few hours. At a 16 week ultrasound, the doctors identified a birth defect called Omphalocele – skin around the digestive organs does not grow over the organs and they are then on the outside of the body. They said this was typical of Trisomy 18 and like you, we were told then that we “still had time to terminate the pregnancy”. Our faith in God took us through an amazing journey of sadness, hope, laughter, friendship, love, grief, faith. I wonder which Hospice you are working with. We learned of StarShine Hospice from our doctors when we felt we needed a support group. Ten years later, we are still very connected to StarShine. We feel that God put them into our lives to help us navigate the un-chartered waters of a difficult pregnancy. They are like family to us. I don’t think we could have made it without them. I believe that Hope was a blessing to my other two children in so many ways. Hope really taught us all about love and showed us that God will hold us up no matter what. I will be praying for all of you! Thank you for documenting your story. You are an inspiration to so many.
Your love and faith is incredibly inspiring! Thank you for being a light in this culture of death and darkness. Thank you for showing us how precious every human life is. Praying this blog touches the hearts of many and inspires parents in similar situations to choose life. God bless your beautiful family!
A friend of mine advised me to check out your blog. I am currently 20 weeks pregnant with my first little miracle girl named Sadie Lynn. We just had an amnio this past Thursday due to a quad screen show a 1:35 chance of trisomy 18 and a level 2 ultrasound showing brain cysts, a heart defect, an underdeveloped kidney, and clenched hands. We still don’t have the results back from the amnio yet but we are just praying to god that everything is ok. I am just searching out there for more facts and positive people to surround myself with to give me the piece of mind I need. Your little girl is perfect and beautiful. I would give anything to have those moments with my daughter!
I found your blog via another and had to comment after reading about little Nora. She’s beautiful! I am cracking up at her little rolls – so sweet!! I lost a baby boy at 18 weeks who had Trisomy 18. We did not get the chance to meet our little guy as he had no heartbeat at the time of our level 2 ultrasound..
I found you by way of Patti Rice. I just received the news
yesterday that we are carrying a baby with Trisomy 18. If you are
willing I would love to talk to you about your experience as my
husband and I try to make decisions about this. You are an
inspiration and your story is beautiful.
hi I came across your story recently after our son due 1/1/2014 was diagnosed with Trisomy 18. We have chosen to carry him to term and let God show us his plans for our Clayton. I would love to talk with you about your pregnancy and after. Your story has given me a lil bit of hope that we may have longer with our baby then the doctors say. thank you for sharing your story.
~~~ LORD loves you ~~~ JESUS saved and healed me from drugs ~~~ May the LORD bless you and keep you ~ May the LORD smile down on you and show you his kindness ~ May the LORD answer your prayers and give you peace ~~~ Glory to LORD JESUS ~~~
Reading your stories brought tears to my eyes. We have a child with Trisomy 18, Cameron Therese, She is 7 years and 3 months now. Your stories are incredibly similar to ours.
******Keep believing….I made some videos and posted it on youtube if you are interested.
Just been reading your amaising story and so grateful for the strenght and joy you have found in your family. We too have 3 beautiful girls here in Australia and our youngest Laura Ellen has full Trisomy 18. She has just celebrated her 12 birthday and she is one of our greatest joys and delights each day, as well as our greatest teacher daily of what the human spirit can go through and survive with the grace of our God. Family and love – she brings all together. Our cheers and greetings to you and for love and hope to carry you on.
Hi, my wife and I just gave birth prematurely to our daughter Shiloh. The doctors are awaiting results to confirm she has T-18. We are just beginning this journey and are standing strong on God’s Word. Would be up to connecting to hear more of your story. We live overseas as missionaries, so we are only able to communicate via email, Skype, or Facetime. I’ll leave my email, firstname.lastname@example.org. Thank you and God bless! – Jon, Anna, & Shiloh
Dear Mom and Nora,
my name is daniela and i’m from Venezuela,so far.
one night at google find your blog, and i fall totally in love with Nora! this little girl took my heart like no one else do…i can’t imagine how was the pregnancy and her first year, i’ve been reading over a week all the blog, Nora is blessing little girl who is a fighter, she is doing so well, i feel even like a i’m proud of her, i’m sure you’re too, and proud of yourselves. your family is a inspiration.
i’m not a religious person, but i feel like i wanna star to pray for Nora, i think that someone so beautyful like her deserves live and the best of wishes.
i’ve been learning about trisomy 18, i feel like i wanna do something good for the kids with that in my own country, and follow the story of this bright little girl who stoled my heart.
i wish i could meet her one day
Nora, still shinning!
Mom, Stay strong!
pd: apologize for my english
Thank you for your story – such a beautiful and holy celebration of life. May God continue to bless you and your entire family.
I just read your story in the Cincinnati Enquirer, which led me to your blog. Thank you so much for sharing your experience, as well as the pictures from the birth of your daughter. They show some of the most raw emotions I have ever seen in pictures. Your story is such a powerful account of how babies with special needs give so much more than they will ever ask in return. Thank you for choosing life and hopefully giving other women the bravery to do the same.
We have never met but I pray for you all the time. My sweet son Jacob Allen is buried in the row behind your Nora.
I am so blessed that I found this blog on your baby girl “Nora Rose” I never had the pleasure of meeting her or any of your family but I pray for you often. It broke my heart the day I saw the small grave. I prayed to God that he would bring comfort and understanding, purpose and a desire to take your tragic experience and let God do good work within it. It’s the worst part of visiting my son. Every time I pray that there will be no new graves of children. But when I saw the fresh grave please know I started praying for you then and I have every day since.
Jacob Allen’s mom