Wednesday, April 24, 2013

Our Story: 2 years after a baby stroke



2 years ago, I imagined my baby might still be learning how to walk.

2 years ago, I wondered if he would be able to eat solid foods by now.

2 years ago, I wondered if he would ever be able to verbally speak.

2 years ago, I was devastated that my baby suffered a stroke.

Today, I often wonder how this stroke may actually have made me a better mother.

Today, I feel grateful for everything my son can do, but I feel blessed by the person he has become.

The devastation of yesterday has been replaced by the joys of today. It wasn't an easy road. It took a lot of hard, dedicated work to make it through that difficult time. 

Some of the progress is providential. Some of the progress was a lot fortunate circumstances coming together. Yet I know that we were fortunate to find treatment techniques that worked for my son. However, those techniques would not have worked if both my son and I did not dedicate ourselves to progress.


There are still things we need to work on.  He still needs to increase his chewing abilities, he still can't drink water, there seems to be some possible speech apraxia, he appears to have mild to moderate sensory issues, and possible auditory processing issues.  Recently, we found that he has not gained weight for 14 months, despite growing over 10 inches.  Considering the depth of issues I was expecting, these problems don't seem insurmountable.  

Yet sometimes I still feel overwhelmed.  There are so many therapies I want to try, equipment I want to buy, and techniques I want to improve.  So often I see everything I'm not doing and none of the things I'm doing seems to be enough.  I think that I'm probably not the only mother who feels this way, but it's hard for a perfectionistic super achiever like me.  It's hard to accept my limitations and see the things we are achieving. 


Baba really enjoys exploring new places, visiting his favorite buddy, figuring out new toys, trying to imitate new words, and playing peekaboo.  He is learning to read, sing a variety of songs, and dealing with his emotions.  He amazes me everyday!  

We went to the children's museum with my mom and brother last week.  At some point I gave him some rice crackers for snack.  We were sitting next to my mom who just ate something else.  We ate a few crackers in silence and then after taking a bite of his cracker, he silently gave my mother his cracker.  She smiled and thanked him.  He shyly smiled and took another cracker.  It seemed so natural and yet it was so heartwarming that he thought of her, when he barely knew her.  She hasn't been available because of chemotherapy and then our moving away, yet she felt the warmth of her only grandson's heart.


This is just the beginning.  Our journey is far from over, so I must continue to remind myself that it's a marathon, not a sprint.  It's not about how fast I can get everything done, it's how much we can enjoy the process of living and learning how to live with the things we are given.
















8 comments:

  1. I loved reading your writing on your beautiful son. He has accomplished so much in his short life and you can see what a strong kid he is. It sounds like your hard work and dedication is paying off for him.
    Bridget

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  2. I'm glad that your dedication has been rewarded with better results than you expected: it is certainly a strong encouragement to continue with your work. I love the cracker's story: what a nice grandson! I totally agree with your last sentence: the most important thing is "enjoy the process of living and learning how to live with the things we are given". Thanks for the reminder.

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    1. Yes. I love that he has the ability to feel empathy for others. It's so heartwarming to see him grow up into a boy who can share his heart.

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  3. You are doing great together. Even with perfectly healthy kids I sometimes feel like what I am doing is not enough. But it is. And look how Baba is thriving, what a big boy he is already. I am so proud of both of your dedication. Love, Suki

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  4. Hi Suki!

    I've been wondering about you. Thank you for your kind comment. It's been crazy and I couldn't keep up with this blog. I hope to revive it soon.

    I hope you and your family are doing well.

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  5. I didn't even know such a thing could happen. I'm glad he is doing okay, and that you're doing good too. Thanks for sharing.

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  6. Thank you for your kind words. I truly appreciate it.

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