Monday, October 24, 2011

Son + "Fragile X" Syndrome = Love


Happy Monday, folks.

Yesterday, Son & I took a 2-hour photo walk. The sun was out, only a high of 62, but I knew rain was on the horizon so I wanted to make sure the camera got exercise (Lol). Luckily, it was a beautiful, blue sky day. Even though it's nearly November, there is PLENTY of beauty out there to be found.

But first, this picture is 23 years old. It's my favorite picture of all time of Son & I. He was a little over a year old, had been diagnosed with being mentally delayed, (born w/"Fragile X, " or "Bell-Martin Syndrome") and I was still trying to wrap my head around that. Everything I had envisioned changed; I had to slow myself down. Way down. And prepare myself to learn from my new teacher (him).

This is Son today (yesterday, in fact during our walk). He'll be 24 in a couple of weeks. If you had a chance to click on the Fragile X link above, it pretty much describes him. In fact, eye-contact is such a problem for him, that getting him to look directly in the camera is a hit or miss. Thank God for digital cameras where you can erase & have do-overs :-)

But all in all, I am so PROUD to have my perfectly made son. My mother says God gave him to me like this because he knew I'd be able to take care of him. Everyone compliments me on what a kind gentleman he is, he's a hard worker & wants nothing more than to please everyone, and that makes me proud. His neurologist said that even though he's nearly 24, due to delay - he's technically 16/17 year of age mentally.

When I first learned of his delay, I was depressed. I mean DEEPLY PRESSED. I don't think I set myself free until his neuro used the word "retarded." When Son was 13, doctor told me to make long term plans for him due to his "mental retardation." No one had ever used that word pertaining to Son. That very day, I let it go. I took focus of my selfishness & focused on how remarkable Son was/is as a person. I banked on what he COULD do as opposed to what he COULDN'T do. The world opened up & the weight had been lifted. It wasn't till I joined HIS level that I understood. After all, I had the problem with all this - not Son. All he did in this was be born.

I will always appreciate & honor Special Olympics for it is where both he & I blossomed. We found a whole other world of "us" - anyone & everyone was/is accepted. And my lesson was in seeing all types of children with various disabilities and other parents dealing in their own ways, and I felt such a kinship with these people. Son has been involved with Spe.Olympics since he was 9 years old, so we have quite a large "family." Imagine - you watch the same group of guys grow into young men while playing baseball, softball, basketball, now track, weightlifting, etc. Each season of each sport is like a family reunion. We truly are family, thanks to our blessed young men & women.

God is good.

Pictures by: me :-)

4 comments:

  1. HI - your loving surrender is life-giving. Hallelujah!
    Love Gail
    peace.....

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  2. Hey there, Gail! Thank you for the kind words. And that is exactly what it was - surrender. It was 10x more exhausting fighting against it (trying to 'change' what was obviously unchangeable) and so freeing when I let go. Hallelujah is right!!!! Blessings to you, dear friend.:-)

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  3. Hi Tracey - I truly understand. We have a special needs grandson, Jacob. He was born "still" and then came back to life. While he was 'quiet', floating between here and there we prayed for God's will, and then the room warmed as his spirit, filled with the love of Jesus, returned to us.
    He lost oxygen during his journey and struggles so. I have something for you I would like to send you that we created aftyer his traumatic and miraculous birth-death-rebirth. I did not keep your address so can you send it along to me via email,
    Gaileeann@gmail.com

    love to you
    Gail
    peace.....

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  4. What a beautiful post, Gail!!!! Thank you so much for sharing that with me. Thank GOD for baby Jacob. God is so, so good to us for giving us Jesus! I'm emailing you right now! Love ~ me :-)

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