Vera turned 1 and a half years yesterday. But I am filled with sadness today.
Because little Brianna was doing so well, and now she's suddenly having blue spells and going in and out of hospital.
The reality hits home for me - that for Trisomy 18 babies or children, no matter how 'well' they might seem, there is just no guarantee. (Come to think of it, nothing in life does right?)
And as a Trisomy 18 mom, I live with a 'disclaimer' every day. That no matter how happy and thankful I am with Vera's current state, I know I need to be prepared to give it all up someday, perhaps even suddenly. Perhaps it is my defence mechanism - the need to preserve my sanity. That's why ever so often, especially in wee hours of the night, I play over Vera deterioriating in my head, and play over myself letting go. I know this may sound like really negative thinking, but it's just my way of coping with the uncertainty of the future.
I was just happily singing this song to Vera the other day, and burst out in tears without warning.
"You are my friend,
Though we're miles apart
I am still with you
For always you will be in my heart.
You are my friend,
And I call your name,
Though it's not the same,
Forever you will stay in my heart.
Wherever you go, I want you to know
There will always be, a you and me cos
You are my friend, till the end."
Of course I experience the immense joy of Vera, but sadness is always looming somewhere in the back. It's just a reality Trisomy 18 parents have to live with.
Joy, sadness. So opposite yet so much the same thing.
6 comments:
May,
Be strong! Don't think too much. Just treasure every moment you have with Vera.
Adeline
i can understand your thoughts and fears...its so heartwrenching to think of the negative yet its so real...do enjoy ur time with vera give her the best she can have and as long as she's happy tats the most impt for now..
MsBlue
may i do the same exact thing. glad to know i'm not the only one. i still have those moments when i wake up and i'm afraid to walk into her room because i don't know what may have happened in the night. i chastise myself for being irrational, but is it really?
Nothing in life is certain.......so just treasure what we have at the moment..its not the length of years we have with our child but the quality and love that we give them that is most important....U are doing a great job!!!
Teresa
from what i see, you are already having an eternity with Vera. The smiles, the 'head shaking', that beautiful response to that equally beautiful singing of yours. That is eternity on earth, isnt it. Seize and enjoy it. Cliched as this may sound, He who gives, knows perfectly what is in store for Vera, for you too.
Alice
recently I feel the same way as you. I read about Brianna and I couldn't help imagining what will happen to Mathias and how will I handle it. His doc's questions to me also reminded me that he might go anytime too. Had been rather moody lately thinking of when it happens. But I told myself that I will not think about it. I will think about it when it does happens. I also reminded myself that God will not give me what I cannot handle n that I should trust in him.
Let's be positive and enjoy what we have with our child now. No point worrying about something that will affect how we feel now and it might not happen yet too.
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