Earlier posts are my journal entries that I decided to share. This post dated September 8, 2010 is when I started this blog. I realized that I should also share what I had gone through before September 2010. I read through them again and saw myself in the mirror.
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Here I am again attempting to start a blog! I’ve had a few blogs before but ended up being nonsensical, trivial and sometimes mundane. Most of time, it felt much like a diary of an uninteresting life. Nothing had kept me really wanting to write and I’m not sure if I really had much to share. Only close friends read it I suppose. And when I read it, it was just cherished memories of a simple private life that I decided it wasn’t really worth broadcasting over the internet. Not sure if anyone was interested or found it helpful anyway…
But life has changed. Soon after getting married, we found ourselves pregnant. We were totally clueless parents. Come to think of it, we still are because of all the unexpected surprises!
Finding out that we were pregnant, to begin with, was a wonderful and unexpected surprise! After 9 months and 1 week of wedded life, we gave birth to our first child, Ate. Yeah, she is a honeymoon baby (or technically before honeymoon since we went for our honeymoon a month after the wedding). God has a funny way of telling you that you’re ready for His next surprise.
I waited impatiently long to be married and I’m glad I did not marry earlier because I believe I would have lacked a certain maturity. We decided to let go and let God decide when we would have a child. And I thought that I would have to wait again before having a child. But He has his plans! And boy did He give it to us!
We were the typical first time parents for the first 5 months of Ate’s life. I remember our first diaper change in the hospital without the nurse or my paediatrician friend. It was early in the morning and we were both sleepy. Ate cried incessantly until we both got up. Her poop was still the gooey black type which is typical of babies just hours or days old. We fumbled, she was not comfortable, we forgot to warm the water, it took us several minutes when it should it be quick, but we still did it. It was our first team effort into something so important to us. It was nothing compared to our team effort in fixing up and maintaining our home. It was thrilling, scary, wonderful, fulfilling… just emotion packed! Each moment we enjoyed with her from changing diapers, bathing her, feeding her, having her vomit on you. She smiled and cooed in a few months. She knew her mama and her papa. She looked at our faces and smiled at us and we smiled too. We were the typical family then. We were all growing together. She bonded us and she continues to strengthen our marriage.
But on her fifth month, it was a rude awakening with a rush to the pediatric emergency room. It was her first recorded epileptic seizure called infantile spasms. We were all dressed up and on our way to my brother’s wedding. In her car seat, she involuntarily rolled her eyes up, jolted her arms, extended her back, gasped for air and slowly her lips and skin around her lips turned blue as she did this jerking motion 8 to 10 consecutive times in the car. A few days earlier we had already brought her to a child neurologist after much prompting from our paediatrician friend. She had head-lag and could not lift her head when prompted up to sit. We were to just observe then.
By the time we were at the E.R. that day, all her vital signs seemed normal. The child neurologist said it could have just been aspiration because she was drinking milk from a bottle right before it happened. But I knew it was a seizure even if I had never seen one before. We had an EEG done the next day and there we saw the seizure spikes. A few days later, she had another seizure attack. It quickly became a daily attack and was happening more often in a day. The 8 jerking movements quickly went up to 100 jerking movements lasting several minutes and these episodes increased to as much as 5 times a day. On a few occasions, she turned blue and desperately gasped for air. We could not do anything but hold her close since she had to “ride” through it.
We were all helpless, clueless and it was a time of despair, anger toward God, confusion and sorrow.
We had an MRI done and the results devastated our family.
Ate was diagnosed with lissencephaly or smooth brain….
Since then, our family life has never been the same. We have gone through several buckets of tears and will most likely go through more. As my sister in law so wisely put, the tears will never stop, but neither will the moments of joy.
We are totally clueless as to what will happen next and how to handle it. Thank goodness for family, friends and friends we have not met yet who have shown us unexpected support. This blog is our family’s journey in life blessed with a special child. We are an ordinary family going through ordinary trials that any family goes through. We write here to remind us of the many things we should be thankful for. We share what we go through because either we find them worth sharing online or we simply just want to write our thoughts. Many of what we post here are personal and perhaps may have little to do with having a special child. We are a simple family, trying to live our ordinary lives extraordinarily well. Clueless as to what God’s next surprise will be. Not expecting, but hoping. And we do this all for the glory of God who continues to bless us with miracles each day.
Maybe I won’t be such a “clueless” momma one day. If I say it fast enough with a smile on my lips, it could sound like “coolest” momma – which is what I need to be, cool and collected.
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