For Down syndrome Consciousness Month, I’ll be featuring fellow families from the Down Syndrome Association of the Philippines. Their stories are my stories too. What I realized when I attended the Early Intervention Seminar last November was that Dan and I were not alone. The worries, doubts and celebrations that we felt no one could relate to where typical stories in the community. I really felt hopeful after that and more importantly stronger. The facilitators of our group discussion during that EI Seminar were Michelle and Nino Aventajado. It really helped us to have a family who is a bit farther along in our journey to guide us and assure us in the new path of parenting that we have taken on. As Michelle said then, “everything will be OK” – seemingly normal words to the unaffected but to me and Dan they were life-changing. (You can read about our experience of DSAPI’s Early Intervention Seminar here)
Michelle and Nino have four kids, two girls and two boys. Evangelina or Gelli is their youngest. Her name means “God’s gift.”
Thanks so much Michelle for sharing your story.
1) Can you tell us something about yourself and your family?
I was born and raised in NY. I visited Manila a few times before I actually moved here with my husband Nino who was born and raised here. We moved here in 2006.
2) Can you share with us Gelli’s birth story?
I enjoyed being pregnant. While I would have liked to have been able to prepare myself a little more for her birth, I think that God always has a reason. So, the fact that I didn’t know was probably better because I’m known for being a worry wort:-( If there is something to worry about-I’m sure to have it covered.
Michelle had a beautiful pregnancy and an uneventful labor and delivery. Gelli’s diagnosis came after birth just like Noah’s. Michelle wrote Gelli’s birth story for Rappler’s Mother’s Day series last year and you can read the whole story here . When Michelle read Gelli’s birth story during the seminar, I sobbed the most when Michelle said “I saw it in her eyes” for it was the same for me when I finally saw Noah at the NICU. An excerpt of Gelli’s story is found below.
After some time, my husband was called out of our room. If my legs had worked, I would have gotten up and run out after him. But I lay helpless in my bed because of the epidural, unable to hear or see what was going on beyond the four walls of my room. After a few minutes, Nino came back in with a strange look on his face, with the neonatologist close behind. My husband held my hand and stroked my hair when the doctor said that she had “concerns.” It seemed cruel, because it felt like she was speaking in slow motion. She told me that she observed some “markers for Down Syndrome.”
I started to sob saying, “I saw it in her eyes.” Anything else she said after those four words was lost on me. I felt like I was drowning. My legs couldn’t move, but I felt like I was thrashing. I sank into my bed and cried, and moaned from the pain of those four words. I was struggling to breathe. My heart hurt. My head hurt. I began to question all that I had done to deserve a baby with special needs. I took my vitamins. I ate healthy.
I knew Down Syndrome started with an extra chromosome, but I still went through the motions of trying to figure out what I did wrong during my pregnancy. I am an educated woman, a teacher in fact. I understood special needs and the causes of Trisomy 21, but all of the feelings of guilt and blame completely undermined my education during those first few moments. Was God punishing me? What had I done wrong to deserve such a sentence? I was inconsolable.
Nino tried to comfort me. My father-in-law said it was “God’s plan.” I didn’t want His plan. I had a plan and it didn’t include this. My mother-in-law threw herself on the sofa and cried with me. Nino kept hugging me. He didn’t falter. He told me we would be all right, that she was ours and that she was beautiful, that God meant for us to have her. He hugged me while I was drowning in an ocean of guilt, of blame, of fear and sadness, and he continued to hug me as I gasped for air.
(Read the rest of Gelli’s story, “Gifted with an Angel” here)
3) How is Gelli now?
Gelli now is doing great. She has speech, OT and PT once a week. We do baby yoga when we can. (In other words when she is not crawling away from me) she loves music of any kind and bounces along in rhythm! She’s super takaw and pretty much eats anything I give her. I have been introducing foods to her slowly. She just had strawberries the other day and I could see she was trying to figure them out. Her most favorite people are her siblings and she plays with all of them whenever they can. We like to go for afternoon walks in the stroller and she has started skipping naps. I think she is afraid of missing all the fun when she goes down for a nap.
She is crawling and pulling up to stand. Definitely to the age where she is expressing herself and her desires. She even has a bit of a temper
4) Gelli has three older siblings, how did you talk to them about Down syndrome?
Well, we used the word special a lot, told them God gave us a special gift we he gave us Gelli because she has Trisomy 21. We explained the extra chromosome but I don’t think it meant much and was over their heads. We told them that we had to be careful with germs and with her development. That they would need to help a lot with her because she would be very fragile when we were able to take her home. (This is when she was still recovering from her surgery and in the NICU at st Luke’s)
With my older daughter we talked about Becky from Glee. (She was 12 when Gelli was born) we referred to Gelli’s condition both as Down syndrome and Tri-21. We also all prayed together.
There was a moment I remember vividly. I did my best and tried not to cry in front of my kids. I didn’t want them to see me crying which might make them think that there was something wrong. But the night before Gelli came home I couldn’t take it anymore. (She was born Aug 26, and came home Sept 7) I was definitely going thru what some might call postpartum. I was tired of trying to hold it all together and answer my kids yet again why their baby sister couldn’t come home already. I started crying, and one by one my kids all encircled me (and Nino) and we all started praying together so that Gelli could come home already.
Praying as a family became something we did regularly because of Gelli, just like counting our blessings.
5) What would you tell the parents of a child who was just diagnosed with Down syndrome?
I think when we are given the news that our baby has special needs the wave of emotions that we go thru is so extreme and exhausting. Couple that (for women) with the hormones and that can be more than many people can cope with. Not to mention the PHYSICAL exhaustion of actually birthing a newborn, nursing a newborn or traveling back and forth to the NICU like so many of us did when our babies were first born. (*and don’t forget pumping milk for a newborn if mommy is breastfeeding)
Many parents also want to arm themselves with as much information as possible – we stay up late (I read Kelle Hampton’s blog over and over searching for new entries that I could identify with) devouring all the knowledge we can to prepare us for journey we have begun as “special” parents. We buy books and have them shipped the fastest way possible so that we can start reading them immediately. We scour the internet. But to be honest, I’m not so sure that is the best idea right at first? It can all be so overwhelming. I mean when I think about it, of course I wanted to be informed. And when I think about it even more, I also wanted to enjoy the birth of Gelli despite the disappointment of not getting the baby sister for Gia that I originally thought I was going to get. But I do believe that there is a fine line between arming yourself with the knowledge and tools you will need and worrying yourself sick.
(I know I mentioned this before-but the worrying gene is strong in my family. So worrying just comes naturally. It’s only been thru my practice of yoga and meditation that I have been able to reign that worrying gene in so that it’s not consuming.)
For me-the best thing I did was go to EIS. I didn’t feel so alone. And I really didn’t want to feel alone. I knew I wasn’t alone because Nino was my rock and strength thru the first few weeks of Gelli’s arrival, but I wanted more, I wanted another mommy to identify with. I wanted another mommy whom I could talk to, cry to, and laugh with about the silly things too.
I started following Kelle Hampton a week after Gelli was born because of the advice of one of my sorority sisters. (Believe it or not but before that-I never followed any parenting blogs — cooking-yes but parenting, no). And definitely not a special needs blog.) I completely identified with Kelle Hampton, bought her book in the pre-selling stage, and inside I knew that I wanted to get to that place where I would be at peace with everything. (I also follow a bunch of mommies on Instagram)
So-arm yourself with knowledge-YES! Worry yourself sick? NO! Meet new parents in your same situation? YES! Take care of yourself…physically, mentally, emotionally…YES! (this means allowing yourself to cry if you want to cry and forcing yourself to laugh even if you truly have to force it.) Ask for help? YES! For me this meant, leaning on my support network.
My parents were here. So my mom cooked dinner every day for us (I usually do the cooking) and sent it over. My mom helped take care of my kids when I couldn’t. I had friends offer to send over dinner because they knew that I was going back and forth to the NICU and couldn’t take care of my “big kids.” I asked for help. I think it’s also important to know that you can ask for help. Of course, I wanted to be super mom and hold it all together-but it’s ok to ask for help. If you don’t ask now-when you are dealing with a major shock-when would you? I asked the tutor to come every day instead of just the days when the kids had Filipino homework. My younger sister came from LA to help (not because she’s good with babies other than to hug and kiss em) but because she brought a bunch of supplies for me and baby G. My BFF came from NY. I was able to breathe just a little easier knowing that all these people were here for me if and when I needed them. They all helped me be a better mom to Gelli.
Breathe a little deeper? YES. This means taking things one day at a time. Seriously, one day at a time maybe even one hour at a time at first? Meditating. Praying. This also meant holding my baby girl and rocking her, smelling her, holding her tiny little hand and filling up my heart with gratitude. Gratitude is a very important part of being a special needs parent. I went back to my gratitude journal too.