Mommy’s Words

The past 3 ½ months have taught us many lessons. We definitely learned a lot about the anatomy of the heart and how to raise a child with Down Syndrome. But there were other lessons as well.

• We learned humility. We thought that we were a young but stable family, able to handle the bumps in life well. We never thought we would face something as big as the challenge we faced the past 3 ½ months with Sofia in the NICU, not knowing when we would be able to take her home, not knowing how much our final bill would be, and not knowing how we would be able to pay for it all.
• We learned that things only happen according to his plan. We’ve been prepared for Sofia’s heart procedure since December. Her heart procedure was supposed to have happened last April 8. Yet even with all the careful planning we did with her doctors, her procedure could not be completed 3 months after.
• We deepened our faith. I would say we were both believers prior to Sofia, but untested ones. With each day’s uncertainty, what gave us the courage to stand by Sofia was the belief that one day God would make it all ok. That he could heal Sofia if he willed it, no matter what the complications. We needed to lean on Him. 
• We learned that there were many good people in the world. Ever since I put up my blog, so many people, even people we didn’t know, would reach out to us to share their own experiences, usually with their children with Down or congenital heart disease. They would give us kind words, offer prayers or even financial support. God truly works his wonders through other people!

Sofia was a very special child. Her heart was very different and she had an extra chromosome 21, yes. But what made her really special was how siopao-cheeked she was and remained through all the complications she went through; how pink she was – no cyanotic indication of any heart disease; how active, alert and responsive she remained even through episodes of colon bleeding and infection; how heartily she sucked at her tubes before feeding time and before her procedures, like before she was stented and before she had her RBC tagging; how her own amazing strength gave us the courage to fight with and stand by her until the end; and most of all how she was able to endear herself to and inspire hundreds of people through her journey.

Some say she was not meant for us. I say she was, right from the start when I couldn’t believe I was pregnant because of how my cycle fell into place vis-a-vis my business trips last year. It’s just that she was not meant to stay on earth with us for long.

You’ll always be our princess and angel, Sofia Ysabel. We love you so, so much. We always will.

 

Daddy’s Words

Family and Friends, Let me start by saying thank you. thank you, not just for being here now, but for being there for our family,most especially for our Sofia, all throughout this journey. Thank you to our family who has been our support ever since we found out about Sofia’s condition while still inside Trish’s womb. Thank you to our family, our friends and friends of family & friends who organized all sorts of stuff to help Sofia. Thank you to Sofia’s doctors and nurses who really treated Sofia as their own. Thank you for being her caring parents/brothers/sisters at times when we were not with her.  We are overwhelmed by all the love and support that we received from everyone, even from total strangers. Truly, God works his wonders in mysterious ways.

To our dear Little princess, thank you very much for coming into our lives.  3 1/2 months is way too short but I’ll cherish every second of it that I spent with you.  It’s very hard for me to say goodbye when I’m still warming up to our hello.  I haven’t held you enough, I haven’t cared for you enough, I feel I haven’t been a father for you enough. I just hope that in the short time that you spent with us, you felt that I have loved you enough.  I’ll miss the times when I read stories to you and you fall asleep while I’m stroking your chest.  But I’m comforted by the thought that when I read the same stories to your kuyas, you’ll be there laughing and giggling with us.

Thank you for teaching us that life is beautiful and worth fighting for.  You’ve taught us that in this life, it doesnt matter who you are or what you have, that everyone or anyone deserves the chance to live.  You’re the bravest little girl I’ve ever known. You’re daddy’s little girl. I’m so proud of you.

Thank you, dear princess, for opening our eyes to the reality that no matter how you plan for anything in this world, it is always Gods will that prevails. thank you for letting us grow closer to God.

As we pray Angel of God at night, Sofia, we know that from now on, that Angel is you. We thank God for giving you to us as our very own Angel, our guardian. the one who will be at our side, to light and guard, to rule and guide.

Know that Daddy Nhatz, Mommy Trish, Kuya Yoachim and Kuya Tyler love you very, very much.  I know you will help us move on but I promise that you’ll be remembered forever.

You’ve fought a good fight, honey and I cant be any more proud of you than I am now. There are No more needles, no more probes. It’s time to rest now.

I won’t say goodbye, Sofia coz you will always be with us.  I’ll just say the same words I tell you when mom and dad leave you for the day to go back home to your kuyas … GOODNIGHT SOFIA, I LOVE YOU VERY MUCH …. SEE YOU LATER!

 

We love you, Sofia.

Sofia went home to God, our Father, last night, July 23. We thank the Lord for allowing her to be with us the past 3 1/2 months.

Dearest Sofia… we love you so, so much. We’re proud of how strong you proved yourself to be. You really didn’t want that banding procedure, did you? You’ll always be our princess…

 

No Deadlines

You can’t give God deadlines. - St. Pio

The summer has come and gone. I was really looking forward to it – with Sofia, Nhatz and myself spending time with the two boys off from school. I’d get the boys to do some chores, watch them take swimming lessons and insert a teeny bit of structured learning I would cleverly disguise as fun.

I used to pray for Sofia’s complete and speedy recovery. Clearly, speedy isn’t part of the plan. When Nhatz’s 2-month vacation leave was about to end I braced myself, thinking God would make the events fall into place, the tension of going through the pulmonary banding operation included, and then things would be back to normal as Nhatz went back to work. That passed and we were still waiting for Godot. The rainy season started. Maybe she’ll be home the feast of the Ascension? Nope. I had silly thoughts as my grandfather’s death anniversary approached. Then Yoachim went back to school. Then Tyler. And my maternity leave ended.

Can speedy be part of the remainder of the plan? I hope so. I now pray for complete healing, for Sofia to come home to us a healthy, happy and strong baby girl, and for her to live a full life with Nhatz, Yoachim, Tyler and myself in the service of the Lord. For amidst all this God has shown us that the world is full of love. Yesterday Sofia got a beautiful card from some of my projectmates in Minnesota. It said there was a circle of love – and she was in the middle of it. I believe that. People around the world are praying for Sofia. Friends are saying they have their kids praying for Sofia. Even people we don’t know say they are praying for Sofia.

Her bleeding from the colon has recurred, we need some intervention. I feel crushed knowing she’ll have another procedure (that I don’t want to go into yet), but it still isn’t the one that will get her home. Please pray with us that her path to get home with us becomes a straighter path. We have meandered too much.

 

Flying Blessing

After we say our family bedtime prayer we say virtual good nights and send flying kisses to Sofia. 3yo Tyler then pretends to drive our kisses to the hospital – I guess he thinks it needs more direction than just being arbitrarily blown to the window. Yoachim surprised us tonight by making a sign of the cross and then blowing it to Sofia – he said it was a flying blessing.

Today we finally got results on one of Sofia’s cultures as to what bacteria is causing the infection. I can’t memorize the long unfamiliar name. At least now we can be more specific as to what antibiotic should be given.

 

Kuya Spoke with Sofia’s Doctor

The two kuyas (older brothers) had a check-up today and so they had a chance to peek at Sofia again.

Our eldest, 7yo Yoachim, is usually a reserved boy. On our way to the hospital he mentioned he wanted to speak with Sofia’s doctor. I didn’t take it seriously.

As we were sitting outside the NICU, Sofia’s neonatologist passed. I said, “Yoachim, that was Sofia’s doctor!” He repeated that he wanted to speak with her because he had a question so we followed her to the NICU door. I let her know Yoachim’s request and she gamely stepped out.

Yoachim asked her when Sofia would go home. She said when the blue tube (for her ventilator) got out, Sofia would be able to go home. She asked Yoachim if he prayed for Sofia everyday. Yoachim emphatically nodded.

I guess it was a burning question he really had to ask, fueled by love for his baby sister, that he forgot his reservations about speaking with strangers.