Tomorrow I will be at the Early Intervention Seminar of DSAPI. The EIS was a milestone for our family as we started our new normal. Hard to believe that it’s been a year. I wrote about the experience here.
Hey there,
How are you? How are you holding up? I am where you were a year ago. I was just as lost and I was struggling to find my bearings. I felt so scared as I faced an uncertain future with my family. In those days while waiting for the karyotype results to come out, I knew then that my boy, from his eyes had Down syndrome.
at the NICU
I was crying day and night and I prayed constantly for strength. I bought books and memoirs and researched online. I was looking for meaning and inspiration everywhere until I realized that my source of strength all along was napping peacefully inside his crib. I was too busy about my own worries that I almost robbed myself of the joy a new baby brings.
I saw Noah beyond his diagnosis. And it was then that I gained clarity. I finally saw my baby for who he is. Yes he had Down syndrome but that was just one part of him. He is our youngest child, he made me a mom again and I thank him for that privilege.
My husband and I joined the Down Syndrome Association of the Philippines and attended the EIS. I saw the families who have kept the association alive since the 1990s. I saw the older kids. On Nov 11, 2012, I shared our story to our new community. I poured my heart out and cried all day but at the end of that day, I was cleansed. I exhausted my grief and I found ourselves members of a new community who welcomed us with open arms and warm smiles. They congratulated us on our new baby. Most importantly I saw that our journey was not ours alone.
Nov. 11, 2012
So to you who’s reading this now, if you are grieving, grieve fully. Don’t deny yourself the process of crying out, questioning and feeling the anger. You need to exhaust these feelings because once you’re over it, what will be left are joy, kindness and overwhelming love. All your baby needs now is love. Love him fully. Love him more. The love you feel will be stronger than the pain you have gone through. The love you give will be returned a hundredfold by your precious little bundle of joy.
Pororo!
There will be better days I assure you even though your new normal will not be without its challenges. I hope I can tell you what the future will be for our children but I can’t. Just as I can’t plot my oldest son’s future, it’s the same with Noah. So try take things one day at a time.
Don’t forget to breathe. Don’t forget you. Take care of yourself. If you feel a new cycle of grief washing over you, feel it, allow it to go through you but most importantly encourage yourself to get past it. And don’t worry, it will pass.
Just remember that you are not alone. We are in this journey together. Also, know that you and your family are loved. And things will be ok. There is life after the diagnosis.
And by the way, CONGRATULATIONS!!
Sincerely,
Team Noah
Tina says
February 17, 2019 at 8:22 pmHi Ms Neva my nephew was diagnosed with DS he is just 9 mos old today what kind of approaches can we do at his age. Do you know any Dev Pedia where we can consult? Apparently the pedia that was referred to us has a very long line of patients and will take time before we can have our turn. Thanks and hoping for you immediate feedback. Your blog is so inspiring. Tinapies@yahoo.com
neva says
March 26, 2019 at 4:28 pmHi Tina – here are some dev pedia that I know and that my friends’ kids go to — Jack Herrin, Vilma Bagay, Tippy Tanchanco. We go to Cynthia Castrillo. For activities, I referred to this list 🙂 https://www.parents.com/health/down-syndrome/booster-activities-for-kids-with-down-syndrome/ please also join the Down Syndrome Association of the Philippines Facebook page and Miss Possibilities foundation – they sometimes open free therapy sessions and clinics for kids with Ds 🙂
DC says
October 26, 2017 at 2:25 pmHi. I’m glad I found your blog because I need help.
I was looking for workshops/seminars for people who are having marital difficulties or parenting for children with DS.
Parenting has been a major issue in my and my wife’s marriage since our eldest was born. She’s now a big sister to our little rascal who has DS.
I don’t really know how you can help me but I literally have nobody to talk to.
Best regards.
neva says
October 31, 2017 at 1:06 pmHi DC! Thank you for dropping by the blog. Are you a member of the Down Syndrome Association of the Philippines? It’s a great support system for families. We have an upcoming Early Intervention Seminar on Nov. 5. Here is the link to the seminar https://www.facebook.com/events/1697166110313653/?fref=gc&dti=53343128860&hc_location=ufi
Do not hesitate to ask questions, you will meet new parents as well as veteran parents of the group. The veteran parents will help you out, listen to you and give you guidance. You can come early if you want, the chairman is there early naman 🙂
You can also contact the group here 🙂
DOWN SYNDROME ASSOCIATION OF THE PHILS., INC. (DSAPI)
2nd Floor, 6372 Agrifina Building
Camia corner Meleguas Streets
Guadalupe Viejo, Makati City, 1211 (near Rockwell)
Contact Numbers: (63-2) 895-36-06 / Tel/Fax: (63-2) 895-96-42
E-mail: dsapi@hotmail.com
Office Hours: Monday to Friday from 8:00AM – 6:00PM
Facebook: http://www.facebook.com/groups/53343128860/
Steffi says
April 28, 2017 at 12:18 pmHi maam. I am a mother of a down syndrome. Nung una talaga na nalaman ko ang anak kong eldest ay isang down syndrome, iyak ako ng iyak. Nagdasal sa Panginoon na bakit may condition na ganyan. Pero in the end po. I feel, and we feel blessed because of him. Maraming blessings dumating sa amin. Atsaka we show love for him. He always love to smile. ? love to dance and sing din po ? meron na po siyang kapatid na babae, sa awa ng diyos isang normal na baby.
Joseph Neil is DS & her sister Mary Lishayne ???
neva says
May 4, 2017 at 10:31 pmhi steffi :)salamat sa pagdalaw dito sa blog and god bless sa inyong pamilya!
Malou says
June 14, 2016 at 12:58 amHi Everyone,
just had my ultrasound today and found out that there is a nuchal translucency in our baby’s neck? my Ob said that there is a 50% chance of DS. the only reaction i can is to cry and cry. im 40y.o and its my first baby.
i didnt sleep until now searching for an Answer and im happy to find your page.
i need your help if where and what kind of test available , we have here in our country. please help. thank you so much po.
neva says
June 14, 2016 at 11:48 amHi Malou –
Congratulations on your baby!! You may want to try out HP Diagnostic’s Panorama test. It’s a non-invasive prenatal screening test but the results are not 100 percent though. Here’s the link: https://www.hi-precision.com.ph/services.do?item_id=49636 🙂
I hope you don’t mind if I tell you that a condition such as Ds will not make your baby less of a child and will not make your baby less worthy of love. Please don’t hesitate to email me (my address is in the about me page of this blog) if you want to talk about your concerns in private. Rest well and take care of yourself and your little one. Ds or not, your baby will bring you so much joy! Congrats again!
Nica says
June 8, 2016 at 11:30 amBlessed day mommy,
My 2nd son is suspected for having a D’s.
He only 3months old. He have heart problem the doctors said he need an operation as possible. Until now I cry every nigth.. Natatakot talaga ako.. Gusto ko laging umiyak bakit ganun, ang dam ng tanung, dko Alam kung saan kami kukuha ng halaga para mapaopera sya.. Ayoko ng mag isip ng kung ano ano.. Basta Alan ko kasama ko si god at tutulungan nia kami lalong lalo na so baby Javier. Nakakainpire young mga kwento mo. Gusto ko paging may makausap. Hay grave paxensya ka na at napadrama ako. Gusto ko lang kc may mshare sa katulad ko din na same any pangyayari. Godbless sa ating lahat!
neva says
June 8, 2016 at 10:45 pmHi Nica 🙂 Its ok! Salamat din sa pagbisita mo dito 🙂
Check mo ang Philhealth coverage mo kasi sa Package Z covered and surgery ng congenital heart diseases pero pakicheck na lang din. Maari din kayo lumapit sa PCSO para sa financial na tulong 🙂
sol bragafiru says
March 4, 2016 at 10:31 pmWhy grieve for the new life of a special baby that was born. I believed grieving is not the right term for that.
neva says
March 7, 2016 at 3:16 pmHi Sol – Grief was what I felt and went through when I was coming to terms with Noah’s diagnosis. We all have different processes and ways of coping but this was mine and the letter is my way of sharing my process to new parents.
Kaye de Guzman says
December 31, 2015 at 10:07 amHi Neva,
I’m glad to found your blog. My daughter is suspected to have DS. Her pedia advised us to have a Karyotyping test. She had a closed heart surgery when she was 5 months old due to congenital heart disease PDA. She just turned 1 year old last December 18th. She is doing great right now. Her pedia is recommending Dra Padilla of PGH which i read here in your blog. Can you share with me Dra Padilla’s clinic details or should I say where can we find her for us to have our daughter be scheduled for Karyotyping. And if its not too much I would like to know also the fee we need to prepare for this.
Thank you in advance. I dont want to worry too much but I know you know the feeling of what Im experiencing right now. But God is good all time. And our babies are truly Gods Gift.
Love,
Kaye
P.S.
I hope I could receive your reply on my email as well.
Have a Blessed New Year to you and Family!!!!
neva says
December 31, 2015 at 2:04 pmHi Kaye! Email sent 🙂 Happy Holidays!
Kaye de Guzman says
January 1, 2016 at 6:41 amWow!!! That was fast! Despite your busy schedule due to the Holiday Season you still manage to read and answer back! Im so touched! Thank you so much!
I will keep you posted 🙂
Happy New Year!!!!
Karren says
August 24, 2014 at 12:52 pmOur pedia bring out the news while I’m in the recovery room that my only child has DS, to help me understand easier she cited the McDonald commercial. I was so down and helpless w/ the news.
My husband I keep that fact instead of seeking help, we’ve been in denial period for 6 months.
Just recently, I gained enough will to research about the said condition. It discussed that early intervention is necessary. I understand the urgency but I don’t know how and where to start.
Whatever my Baby is, he is the greatest gift to us.
neva santos says
August 24, 2014 at 10:16 pmHi Karren!
Congratulations on your new baby 😀 You are right, he is a blessing as all children are 🙂 The Down Syndrome Association of the Philippines is here to help you and also welcome you and your family. Please join us at https://www.facebook.com/groups/53343128860/?fref=ts 🙂 I hope you can also join our Early Intervention Seminar on November as well. We have no schedule yet but it will be announced soon. Early Intervention is really the best for our children as long as you and your family are ready. May I know if you have a developmental pedia already or have you also talked to a geneticist as well? My son goes to Alres here in QC for all his therapies 🙂
Take your time and know that grieving is a natural part of the process. Soon enough that grief will dissipate and you will then see your child as more than a diagnosis. Your child will be your strength and joy — this I assure you. He will inspire you to fight and he will be the reason for all your smiles 🙂
If you need more help, please email me at manilamommy(at)gmail(dot)com or message me at my FB page (facebook.com/manilamommy)
Congratulations again Karren on your bundle of joy!
Lorna Mariano says
July 30, 2014 at 3:31 pmhi !!! good day poh ..
pano po malalaman kung ang baby is may Down Syndrome ?
makikita po ba yun agad once pagkapanganak palang ?
ano ano naman mga dahilan pano nagkakaroon ng Down Syndrome ? ..
im curious po coz im a first time mom poh ….
thank you poh …. God Bless You poh
neva santos says
July 31, 2014 at 2:00 pmHi Lorna –
Down syndrome is a genetic condition caused by an extra chromosome in the 21st pair of chromosomes in our body. Ds is also known as Trisomy 21. Prior to birth, there are scans/tests that may show that your baby may have markers for Down syndrome but these are not conclusive. In other countries there are tests available but these are not 100% conclusive as well. Upon birth, once your pedia sees that your baby has markers for Ds (such as the absence of a nasal bridge, sandal toes, almond eyes, low muscle tone) he/she should order karyotyping, a test which will indicate if your child has the extra chromosome or not 🙂
There are no known causes of Down syndrome. It’s a random genetic occurence that affects 1 in 800 births here in the Philippines. Para kang nanalo sa lotto hehe but here you’re blessed with a baby!
liz says
January 14, 2014 at 8:12 pmhi, just found this blog. my baby is suspected of Down as well and I will be getting the karyotype results tomorrow. i am scared of knowing the results and i am hoping against all hope that it will turn out negative…
hope i can get in touch with you…
neva santos says
January 15, 2014 at 5:15 pmHi Liz –
Glad you found me. I remember being in your place and just feeling so lost. I hope you’re getting a lot of rest and that you’re enjoying your new baby 🙂 Message me on FB facebook.com/manilamommy If there is one thing I wish someone told me when I was waiting for Noah’s karyotype result is that there is really nothing to fear 🙂
I have another friend and fellow Ds mommy who blogs about her daughter Gelli – you can find Mish here: http://www.mommanmanila.com/
Message me ok! Hope to hear from you 🙂
Teacher Richard says
December 30, 2013 at 6:38 amI just recently discovered you blogs, Mommy Neva! Ang cute naman ng picture ni Noah dito, naka smile talaga siya! Thank you po for having me in Team Noah. 🙂
neva santos says
December 30, 2013 at 10:29 amhi teacher richard!! thank you so much for dropping by 🙂 yes madaling patawanin si noah, benta lagi si yaya anne e hahaha