March 23, 2010
Don Alvaro
On this date, Blessed Alvaro started his eternal life in heaven. Once he is canonized, today would be his feast day. We prayed to him and the whole morning Ate did not have any level 5 seizures. I would say it was a good day today.
Ate had therapy in the afternoon. And she cried a lot. Considering that she hardly got any exercise last week, she did fairly well. Her arms need to get stronger. And we’re starting her on assisted crawling already. But already started that before – just haven’t been able to do it lately
March 31, 2010
Ate is officially 9.5 months today. She got hearing aids. A bit disappointed since I was expecting more reaction from her. We’ll just to have to wait and see.
April 24, 2010
A GRIEF I CANNOT UNDERSTAND
I suffer a grief that I cannot explain even to myself. Today I found myself crying again after several weeks of not shedding tears. The last tears I had was in January when the hearing test showed that Ate has profound hearing loss in both ears. The tests say she is deaf. Back then, part of my denial was at work. I have not said that “She is deaf.” Because I still believe she can hear and that she will hear clearly one day. I don’t know by what miracle that would be, but it will happen one day.
What probably triggered my tears this morning was that I was slowly accepting a future I still believe is not for my family. Yesterday, I was at Christening where I am the Godmother. Other children were there. There was a 3 month old baby boy. He looked just like his father and smiled a lot like him too. The other mommies and daddies would smile and coo at this baby boy and do anything to get him to smile. And of course, after some staring, he would break into a smile with some really adorable drooling on the side. The adults reacted so excitedly and were encouraged to make some more funny faces.
When I brought Ate to them, they did the same. Except they received no response to their silly faces. Oh silly and silly them. I had not briefed them that they should not expect any reaction. And silly them for thinking my brain-injured child would behave the same way. The adults stared. Very briefly, but I saw it from the corner of my eyes. And I felt it. They did not know how to react to a special child. It is kinda hard to be encouraged to make more silly faces if you are not receiving any kind of reaction. What is worse – no reaction or a negative reaction? I know of an adult who likes to annoy kids so when she gets a negative reaction, she’s actually more encouraged to tease the kid.
Other older children were running around. Bobbing balloons on strangers, dipping toys in the little fish pond and basically just doing what normal kids do – playing on their own with kids they had met a few times before.
This morning I was driving past some children’s schools. There are several where I live. And one is a progressive school which was suggested to me before – in case I would need to send Ate there. In the strong likelihood that Ate cannot go to a normal school. These are words that I still have not accepted. I believe that in the future, normal schools will not exist and that Ate’s school will not be considered not-normal.
What will my daughter’s future be like? I had spoken with a handful of special moms over the phone. A particular mom with an autistic child basically has her life revolving around her 10 year old son. She home schools him and has a social life only after he goes to sleep. Her personal time is at 5am to 6am when she goes running for exercise. The rest of the day, her schedule is filled with lessons for her son. The whole morning is teaching the boy “life skills” like fixing his bed, dressing himself. A normal child would take 5 minutes tops. This boy takes 3 to 4 hours.
How normal will my child be? How far from normal will she be? Will she be happy? I just want her to be happy? How do I know she is happy if she does not even have a social smile? When she is not crying then she is happy? How about when she stares blankly, is she happy?
When she had strong violent seizures, I kept asking why she suffers. The suffering of the innocents is really a mystery. I turned to Mama Mary. While Ate was asleep, I asked her to ask God to give me strength. I asked her to call on Mama Mary for me. And I stared at Ate while she slept, Mama Mary let me feel that she shares in my grief. Actually, she allows me to share an itty bitty part of the grief she had when Jesus suffered. Of course He was innocent and he suffered for the sins of others, willingly. Ate suffers and I cannot say it is her will, but God’s will. Perhaps God chose her to not be corrupted by human will that He chose for her… that she lives with a mal-formed brain. And with her malformed brain, she has a perfect soul – at least as perfect as it can be since she was born with the sin of Adam. Is it her will? It is God’s will. He decides for her how she should live.
I don’t want her to remain a child forever. I want her to live a beautiful life. But perhaps it is a limited kind of life that I want for her. She is most likely more free than I am or than any of us. Her freedom is true freedom. Only a devout and learned Catholic will understand this point. She is happier than most of us, even if she does not show it with a social smile. Maybe what is normal, isn’t that great after all.
…
This evening, I spoke with hubs and told him the grief I felt this morning. Parents feel disappointed when their children fail or do something wrong because their children chose to misbehave or disobey. I told him how Mama Mary told me that Jesus is innocent and suffered too. And that He chose to. Ate did not chose and perhaps lives a will better than ours because she lives the will of God. I was pleased to hear what hubs said in response. He believes that Ate did choose. She chose to be with us, to be born with lissencephaly. It is not reincarnation. Our Catholic faith teaches us that our soul is eternal which means … no end, no beginning. I’m not a theologian nor am I well equipped to defend that mystery. But I believe it. Ate, together with God, chose to be with us here on earth.
After that, I had just spoken to a special mom and she told me again… God chooses the parents of special kids. He chose us. And now I have a book to purchase and read: Embracing Gods Purpose for my Special Child by Malu Tiongson-Ortiz. Can’t wait to get a hold of this book!
May 4, 2010
I’ve been a little sad the past few days. Actually, it was just yesterday that I felt sad. And 2 days ago I had just gone to confession and thought that I would start feeling more positive again. And yesterday I also felt really weird, like I wanted to vomit and I felt dizzy.
Possible reasons:
1. God is telling me something I have yet to understand.
2. Ate had very very subtle infantile spasms which has not happened for almost a month.
3. We were at a Gymboree trial class with our birthing class and saw how the other regular babies were doing. And I’m sad to see that there are many things Ate cannot do just yet.
4. I’m pregnant.
Should it be the 4th reason, I probably wouldn’t know what to do. I’ve been checking daily by following the Billings Method and so far I’m not in the fertile period.
May 10, 2010
There is a fine line between pure HOPE and pure EXPECTATION. It is difficult to find. And you have to draw the line yourself. It is also very difficult to explain.
Hope needs faith. But then again, there is expectant faith. You hope for something you know you do not deserve. You expect something you think you deserve. You want it so much, you work hard for it. But you have to constantly tell yourself that no matter what you sacrifice, you are still undeserving of it. Even if it is something you hope for someone else, you have to think that you do not even deserve to see it happen. That you do not deserve to feel the joy of seeing another’s joy in it. That you do not deserve to share in that joy. But you want it so much that you continue to hope, ask mercy and constantly beat yourself for being an undeserving person. And yet you believe it will be given to you, that the joy will be shared with undeserving you that you never stop hoping but expect nothing.
I have already received something I do not deserve and this gift continues to give me joy that I do not deserve. This gift is my special daughter. During my first few weeks of pregnancy I cried to Lord with tears of joy and bewilderment. I remember it was during the consecration at the Greenbelt chapel one afternoon mass.
Am I ready Lord? What made me deserve such a beautiful gift? I am so blessed to carry inside me a beautiful soul. The gift of life You shared with me Oh Lord. Please use me as You will.
Several months later, we learned that the beautiful child was in a poorly developed body with a mal-formed brain.
Oh where did I go wrong Lord? Why does she have seizures? Why does she go through pain? She is so innocent and yet she suffers? Let me suffer instead. Why have you given this to me.
Not once did I see Ate as a burden. Not even for a millisecond. Not once did I worry about losing my life in having to care for her nor giving up my other wants and plans on earth. Because at that mass when I cried to the Lord, I already gave up everything.
I thought about the joy of seeing Ate accomplish so much in life. I expected it. And my expectations were shattered when we learned she had learning disabilities. She was not to become like all the other successful children out there.
Slowly we came to realize Ate has a bigger goal. A greater task to accomplish. Something we did not deserve and still do not deserve to carry out. She is a warrior for Christ. She is part of the army the Lord is building on earth. Who would have thought we deserve to be witness to such? And to be the physical parents of an angel on earth? It still amazes us how her very presence changes our lives. How undeserving we are.
We have learned to hope and not to expect. And it is so beautiful to hope because it is so beautiful to rest in the Lord. We can never have shattered hopes. Maybe shattered expectations. But hope will always be there. Faith, Hope and Love – thank you God for these gifts.
