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.
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.
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.
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?
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.