Noah is finally home and we are complete. The last month was such a struggle that when I heard from the doctor that he’s coming home that I burst into happy tears. I also felt relieved. Having him home means the start of our new normal, our new lives, not only because Noah is home but because he has something a little extra in him.
kuya david reading to noah
4 days into Noah’s stay in the NICU, his neonatologist called us for a meeting. She told us to come in at 8:30am. I was just discharged the Monday of that week and BDW (my husband Dan Wally) was still on paternity leave. That morning, I told Dan that I was nervous (as I always am anyway). Dan told me it’d be a routine follow-up. Noah was a preemie and the meeting would just be an update on Noah’s health and progress.
I remember coming into the NICU the same time as Noah’s doctor. She had a warm, pleasant air about her. She motioned to me and Dan to come to Noah’s incubator. She told us that Noah is progressing but she has suspicions. She was trying to soften the blow but nothing prepared me and Dan when she told us that she suspects that Noah might have Down Syndrome.
I looked at her and said “ok”, then looked at Noah. I said “Ok”only to mean, I understand what you’re saying not to mean “ok” as in I’m fine with what you’re saying. I looked at Noah and thought how unfair that our little baby had to endure so much and now… this.
The doctor told us that N has subtle signs of the syndrome but that she didn’t want to make the diagnosis because she wanted Dra. Padilla, a geneticist to confirm and to make the call or to order a test called karyotyping, which would confirm if Noah indeed has DS.
in his isolette
I was calm when I heard the news. I realized that the only alternative to everything that has happened to me and Noah was that he wouldn’t be here. That thought, that our little one survived kept me strong.
However, the wait for the geneticist was still agonizing. Dan and I were together but we still felt so lost and also so alone. We pieced together the comments we’ve heard from doctors when Noah came out: Our OB told us that Noah’s nose looked flat but that he had no low-set ears. When Dan came to see Noah for the first time, Noah’s neonatologist asked to see BDW’s palms (babies that have Down Syndrome have a singular crease across the palm ). The doctors already suspected Down Syndrome from the get-go.
When the geneticist finally came, she examined baby Noah. Then she sat me and Dan down and told us that she sees what Noah’s doctors are seeing but she can’t say for sure and so she ordered the karyotyping. Kids with Down Syndrome have an extra copy of the 21st chromosome so that instead of the usual 2 copies they have 3. The test results will come out after a month she said.
The results came out a month and 9 days after those talks. It confirmed that Noah indeed has Down Syndrome. Even without the test results however, the suspicion for Down Syndrome was enough to make us realize that our life would drastically change. BDW took the news hard and was the first to grieve between the two of us. From hearing Noah’s heart slowing down while we were at the Delivery Room to me being wheeld away to the operating room– the news of Noah’s condition, was just too much for a dad and a husband to bear. I had to be strong for him and our family at that point. I called my mom right away when Noah’s doctor told us about her suspicions. She also called my dad. My dad came back to QC and left work early because he was so worried for Noah. When we came home that afternoon, he asked us if N did have Down Syndrome but then said right away, “di bale, di naman yun importante, basta ok sya”. I looked at my dad and saw again how such a great father and grandfather he is.
1 month at the nicu
The days that followed that talk with the doctors was terrible. My heart broke into a million tiny pieces everyday. I cried the whole time during that first week. I grieved for the child Noah would never be for he would never be typical. I grieved for the what-ifs and what-might-have-beens. I cried for Noah’s unknown future. I cried for the parents we had to become. I cried because I wondered if I can ever be enough for my kids. Kaya ko ba to? Kaya ba namin to?
The daily visits to the NICU that week became so difficult. I saw Noah with a heavy heart and weary eyes. He was confined to his incubator but I was able to touch him and cuddle with him. Here was little Noah, fighting so hard so he could come home. I held his frail, tiny body tight and smelled him. I held my baby. I held our son. No matter what happened and will happen, extra chromosome or not, the little guy I was holding is our son. After all that he’s been through, after that brave fight he fought and after hearing how hard his heart worked, HE IS HERE. Our son, DW’s younger brother, a new grandchild is finally here.
Yet still, I was at a loss. I didn’t know how to process my feelings. I went to the facebook page of Down Syndrome Association of the Philippines to see what lies ahead of us. I looked at picture after picture of kids with Down Syndrome. They all had eyes like that of Noah’s and my heart grew heavier. I looked at what they were doing and what events they went to. I imagined our life with the group, this new community that we have joined. I imagined Noah going on their Happy Walks and playing soccer with the Malditas. I also looked at updates and posts of the parents. They all seemed happy if not anxious but they all seemed ok. Maybe I’ll get to that sense of peace soon I thought.
Right now, Dan and I are ok and a little bit calmer. I still have my moments of weakness, when my faith is shaken up because I feel the burden of the uncertainty of the future and I realize that I am so small and helpless. I weep when I look at DW (David) and figure out if Noah could ever be like his older brother and if the two of them could ever have a typical relationship.
I still cry a lot and I cope by talking to my mom, Dan and my friends who’ve known everything I went through and what N has. I’ve researched and read about Down Syndrome and looked at therapy centers. Everyday I pray and ask for grace and strength.
I know that life doesn’t stop with the diagnosis. Life will go on and I have to move on if I want Noah to thrive and be the best he could be. I need to be strong for my family and for the two boys most especially. They need me, they need their mommy.
Today, the sun is out and my two boys are still asleep. Noah will wake up soon for his feeding. I look at him now and see the future. I see a new normal for our family. Yes I am still anxious and worried but what parent isn’t?
Noah is finally home
For now, there is only one thing for us to do and that is to love this little miracle that has been handed to us. We will celebrate him everyday for he bravely fought for his place in this family. We will take things one day at a time and learn to savor the wins.
Welcome home Baby Noah! We love you very very much!
In case you were wondering, I decided to spell out my family’s names because I’ve already shared so much of ourselves with you already. It doesn’t make sense for me to keep using initials when you’ve all extended your hearts to our little boy and us. Thank you again for the support, the prayers and the hugs.
jen says
October 23, 2014 at 8:36 pmMy God Bless You lil Noah.
neva santos says
October 24, 2014 at 11:18 pmthank you jen 🙂
leiamig says
November 20, 2012 at 3:51 amYou are such a strong Mom!!! Noah is so lucky to have you as a Mom. Godbless!
mafeteers says
November 11, 2012 at 5:38 amHi! Just hang on there, you’re doing a great job. God is good ALL the time!
Lacey Webber says
November 10, 2012 at 5:46 amDear Neva, I too am holding back tears as I type this. Noah’s story is so touching. My husband an I work with Camille Hammound in the states. She shared your story with us because we are expecting our first child and recently went through a scare where the doctor’s suspected out baby girl had DS. After some tests she was given a clean bill of health. I know how scary and heartwrenching it was to hear that something could be wrong with our baby, but is seems so small in comparison to what you have went through with Noah. He is so strong for his young age and we pray that he continues to build his strength each day. We are so moved by your strength and are praying for you, Noah, and the rest of your family. – Lacey & John Spartanburg, SC
kikaymommysha says
November 7, 2012 at 5:52 pmThe Lord God gave you the most wonderful gift and that is Noah. You have a beautiful baby and he’s so lucky to have a kindhearted mom like you, Neva. Welcome to the world, Noah!
Lyra says
November 2, 2012 at 1:16 pm*hugs*
Thanks for sharing Neva! Will pray for you and the whole family! Thank God that Noah’s home safe!
mapi says
October 31, 2012 at 10:11 amsis neva, hugs. I’ll pray for you and your family. God has plans. Welcome home, baby Noah! 🙂
April says
October 30, 2012 at 11:11 pmHi Neva! Noah is God’s gift to your family. And Noah is truly lucky to have all of you. Sending you mommy hugs. 🙂
Chedi says
October 30, 2012 at 9:10 pmHi, is this in St Lukes BGC NICU? My baby also stayed in St Lukes BGC NICU for a day (she’s slightly jaundice) I’ve seen other kids in NICU and it really is truly heartbreaking. My prayers are with you, for God to give you courage and strength to go pass through this.
manilamommy says
October 30, 2012 at 7:40 amthank you guys for the messages, we’ve been reading them all. thank you so much for the love.
Martine de Luna says
October 29, 2012 at 6:21 pmYou’re such a brave and loving mommy, Neva! Noah is so blessed to have you and BDW as parents and DW as his kuya. He will be loved! Sending you prayers and virtual hugs. — Martine, with Ton & Vito
hapimamihir says
October 29, 2012 at 3:15 pmWelcome home, Baby Noah!!!
I’ve been following your blog ever since and I’m pretty sure that Noah is in good hands. God entrusted you one of his special angels because He knows that you can provide all the best for Noah. Noah has so much love around him. Yun pa lang sobrang dahilan na to continue and live one day at a time . I’ll include your family in my prayers!!!
Hana says
October 29, 2012 at 2:23 pmHi Neva. I cried while reading your post. I can not imagine what you and your family are going through during this time. I’m just so happy that your son is home and you will be able to take care of him and provide him with your love. Just by reading you have written, I know that you have a great support system and that is what is important, to have people by your side who not only love you but your baby as well.
God bless you Neva and I will continue to pray for you and your family.
leira pagaspas says
October 29, 2012 at 8:27 amnaiyak ako.. welcome home Noah!! it will get better and yes your family will never be the same again but you will become better parents because of Noah.
Badet Siazon (@badudets) says
October 28, 2012 at 12:13 amWelcome home Noah! He’s a beautiful baby boy. God gave your family a special Noah because you can give him an enormous love no other people can. =)
Anj says
October 27, 2012 at 10:29 pmI was very touched by your post. Though my son doesn’t have
DS (he has Asperger’s Disorder), we also went through very trying times as he too was confined in the NICU right after birth. We have struggled through the years, but he’s now a wonderful 9-year old boy and I can’t imagine life without him. So, from one mom with a very special child to another – Don’t be afraid, God will give you and your husband all the strength you need to raise your precious baby, Noah. 🙂 it will be a beautiful journey.
grech racal (@grechie20) says
October 26, 2012 at 4:50 pmI am so moved by this post. God is good all the time. I am sure He will guide you and your family. He is a strong boy. And to baby Noah, welcome home. For sure you’re an added joy to the family. To Neva, be strong for your kids and hubby. Will be praying for you, for strength.
Abigail says
October 26, 2012 at 1:30 pmCongratulations for having a strong Noah. You have new challenges ahead of you but your heart is much bigger!
ceemee says
October 26, 2012 at 9:25 amThey say God will never give you anything you cannot handle. He trusts you to be stronger, whose heart have more capacity to love and whose faith in Him is unshakable. He knows you are really deserving of this little miracle who wants to be called your baby boy. Hugs to you and your family.
trulyrichmom (@tinasrodriguez) says
October 26, 2012 at 7:34 amWelcome home, Noah! Praise God for bringing him home safe and sound! And for keeping you all strong through everything! I was in tears while I read this, Neva, for reasons that are quite personal. I will send you a DM or email soon, but for now, pls. know that you and Noah and Dan and David are in our thoughts and prayers! Your post has inspired me to be braver and stronger as a mom, esp. with Baby no. 3 on the way! Basta.. I’ll make kuwento! P.S. I’ve worked with kids with DS before, in another lifetime when I was still a practicing PT, and they and their families are truly signs of God’s amazing love! 🙂 I’m sure Noah and your family will be too!
anne131 says
October 26, 2012 at 1:40 amthanks for sharing, mads. i have always admired you as a person (one of the few who is genuinely nice and sensible) and your story, now more than ever, affirms why i do. david and noah are blessed to have you for their mother. i cannot even fathom how tough it has been for you and dan, but prayers can give you strength that is unassailable. sometimes you wouldn’t even know where it is coming from but you have it in you. i will keep praying for you and your family. love you mads! hopefully we’ll be able to visit soon. i, alongside our other tander friends celebrate with you in noah’s homecoming.
Eliza Santiago-Ypon (@PaintersWifePH) says
October 26, 2012 at 1:24 amI love you Noah. I’ll share toys with you, even Woody and Angry Birds. You want juice? – Basti
Hazel says
October 25, 2012 at 11:55 pmHi Neva,
Congratulations, Your little Noah is a fighter, he is an inspiration and I am sure he will live a full, happy life. My little boy too has special needs, he aw born with a complicated CHD ( congenital heart defect) and had a full heart transplant at 8 months. It was so much harder in the beginning but then you learn and do what you have to do for your baby. I wish you and your family all the best.
P.S
I don’t know if you have read this already, it is heartwarming.
http://www.kellehampton.com/2010/01/nella-cordelia-birth-story.html
Topaz Mommy says
October 25, 2012 at 11:00 pmDear Neva, my mommy heart breaks for you. But I’ve met families with DS kids and they’re incredibly happy families! My friend said of her son with DS, “It’s almost as if he’s incapable of being unhappy. I think that extra chromosome is the happy chromosome!” =) I celebrate your happiness, Neva!
P.S. Little Noah is such a beautiful baby! Ang laki ng tenga haha parang kami ni Vince and our boys. Big ears are our favorite feature!
Topaz Mommy says
October 25, 2012 at 11:08 pmMy pastor and his wife started a blog about James, their son with DS. They haven’t updated it in a while but it’s an inspiring read =)
http://mybopsblog.blogspot.com/
Kaye Catral says
October 25, 2012 at 10:43 pmBeautiful post! And I missed the link. Buti nalang I backtracked. This post has your heart written all over it. And like I said on Twitter, I am in love na with your little N. Welcome home, Noah! I’m sure you’ll fit right in!
ej says
October 25, 2012 at 8:50 pmHey bring Noah here! Long weekend! 🙂 ginger and I are always here for you. Know that, mmkay? We love you!
Karla says
October 25, 2012 at 7:27 pmSuch an inspiring story of a mom’s strength and love. You are amazing! Strength and prayers for you and your family!
MrsMartinez says
October 25, 2012 at 7:15 pmMy tears were falling while I was reading your post about Noah. I don’t know or remember if we have met but I am sending a virtual hug! Welcome home Noah!!!
xoxo
MrsMartinez
Maan says
October 25, 2012 at 6:39 pmWelcome home, Noah! Ü Your new normal. I like that. After all, nothing can be ordinary when you share life with a child. Ü Again, thank you for sharing your everyday miracles with us. <3
gladys' ivy cruz-agbada says
October 25, 2012 at 6:32 pmhi! i don’t know you personally but your son David was a classmate of my daughter Sam, last year and your SIL Ginger was my batchmate in CSA…she posted your heart warming story in FB and i can’t help but cry while reading it…i admire your strength and we’ll be praying for you and your family esp your angel Noah.
Chichi says
October 25, 2012 at 6:25 pmSobrang naiyak ako, Neva. Your story is so inspiring. Congratulations on your new baby. 🙂
Jason Inocencio says
October 25, 2012 at 5:56 pmNev, stories like yours make me see things in their proper perspective. You and Dan are way better people than I am to survive trials like these and come out smiling. Iba talaga kayo. Thanks for sharing your story and nothing but love for you four. 🙂
Michelle says
October 25, 2012 at 2:34 pmHi Neva,
I’m new to follow your blog. In fact I came across your blog because I am also a member of DSAPI. I saw your post in the DSAPI group. First, I want to say CONGRATULATIONS on the birth of your little angel! Noah truly is a gift from God and as he grows you will realize just how much you will grow with him!
My own angel was born more than a year ago and she has taught me so much about life and SO much about myself. Her name is Evangelina, but we call her Gellibean.
Here is a link to her birth story:
http://www.rappler.com/life-and-style/4621-mother-s-day-gifted-with-an-angel
Hopefully, we can connect in person one day through one of the many activities that DSAPI sponsors through out the year.
Trish J. Golez says
October 25, 2012 at 2:34 pmYou are exactly where God wants you to be, Neva. Believe that nothing in this life is coincidence. God’s grace will see you and your family through all the “humps” of raising Noah. Our Sam is now almost 20 years old and I cannot imagine our lives without her!
iamaimeediego says
October 25, 2012 at 1:40 pmI was in tears the entire time I was reading this. Thank you for sharing this Neva. You and your family are everything that Noah needs. I pray that the Lord with continuously grant you strength and wisdom. Hugs!
Maqui says
October 25, 2012 at 12:26 pmWelcome to Earth, Noah!
Neva, you are now the kelle hampton of the Philippines! I am sure you are the best parents for your little miracle! I wish I could say or do something to make you feel better. Cyber hugs and holding hands.
rosette says
October 25, 2012 at 11:16 amwelcome home noah! kapangalan pa sya ng baby ko. this story is very heartwarming. thank you for sharing it. di ko talaga mapigilan ang luha ko, dito pa naman ako sa office.
i’m just so amazed with the strength you have for your family. i’m sure you’ll get through this with all the love and support of your family and friends, and your blogreaders.
Faye Pachoco-Paras says
October 25, 2012 at 11:11 amsuper hugs to you, to Dan, DW and your entire family! Noah is such a fighter and that isn’t a wonder because look at how strong his family is! You have a blessing in your midst, Nevs. I know it’s not easy but I’m sure the support around you will help tremendously. And you have a huge one. Carry on lang! again super hugs! (if i could just pack that, i would send you lots right away. i know how good a tight one feels anytime of the day)
Cai says
October 25, 2012 at 10:26 amWelcome home Noah! Thank you for sharing your story Neva. I was crying the whole time while reading your entry. Your family is blessed to have Noah, you may be faced with a new challenge but I’m sure you’ll be great! Hugs!!!
Cris says
October 25, 2012 at 10:17 amAaaawww. Welcome home, Noah! I’m holding off tears while I type this. You are a strong mother, you can do this for your family. 🙂 Please let me know if you need any info on the Down Syndrome Association of the Philippines or therapists/doctors for Noah. I have an officemate whose daughter also has DS, I can ask about it for you.
Devi Barcena says
October 25, 2012 at 9:48 ami don’t know you personally but i am also a mom and i was crying while reading. i know your family is well loved by a lot of people. may God grace you with strength 🙂
Jenny says
October 25, 2012 at 9:28 amWelcome home Noah!! Thank you for sharing your story Neva! You are an inspiration and a fighter! Your family is lucky to have you. <3 <3 :*
next9 (Jen CC Tan) (@next9baby) says
October 25, 2012 at 9:25 amNEVA! I keep crying with you while I read your posts!!! HUGS!!! There is so much to learn, Nev, and I’m sure you and Dan will be great parents. As I have always said, I’m here for you, mmmmm…(kaya ko bang ilagay here?) mars. hahahahahahaha! <3
Mom-Friday says
October 25, 2012 at 9:46 amMars nga!!! 🙂 Patawa lang…
Naiyak nanaman ako Neva! It will never be easy but you have the support from your family and from all of us. We’ll see you soon!