Max has a brain disorder called Lissencephaly. Kids with his disorder, they don't live very long. When he was little, I used to hear they had between 3 months and 3 years, something like that. I've had 18 years so far and in those 18 years, we've spent very little time apart. He's stayed the night with Grandma a couple of times. We were apart for about 36 hours when each of his sisters were born. In my whole life, Max is the biggest constant. Taking care of him, it's my most important job. And I love it.
Much of the time I've been worried - he's so fragile, so dependent on me for everything, and I never want to let him down. He's also incredibly tough. He has scoliosis and lives in pain every day. He has seizures, this week, with his cold, he's been having more than usual.
Max doesn't laugh much, but today I was telling Mom how earlier in the week he did this sort of spoken laugh, sort of haa, haa, haa. As I was telling her, I ran my hand down his side, like tickling and he did it for her, the haa, haa, haa. It was so sweet.
On another note, I just saw the funniest commercial.......has anyone seen the new Guitar Hero commercial with Kobe Bryant, Michael Phelps, Derek Jeter (sp?), and..........oh dang, who was that last boy? Oh Tony Hawk! They were doing a sort of Risky business performance. I cannot wait until my girls see this.
Well, that's about it. It's late and I need to get to bed. I wish you a wonderful Thursday. Oh and if you are interested in the effects of color on attraction, then please check out my post Put Your Red Dress On.
**Hint- men like red. Who knew??**
17 comments:
So handsome! I love to hear when the little moments count so much!
Happy Birthday to Max! Thanks for sharing the story of Max. You're a good, good mother and are making his life livable. May he be with you a long time! :) Great Sepia shot!
Thanks ladies! Max's sister Sarah is really enjoying being behind the camera these days.
Good morning Michelle. Nice to meet you at Sepia Scenes and especially nice to meet Max. Happy Birthday MAX.
I hope he had a great birthday and you too as it is your very special day as well. So glad he's beat the odds of what others always said and that you got to hear his laughter.
I saw that red dress thing on tv this week. Interesting isn't it?
Hi!
Happy Birthday Max!! Great Sepia Shot! Thanks for stopping by my place today. Take Care!!
Sherrie
What a lovely tribute to a well-loved son! Have a very Happy Birthday Max!
Happy birthday, Max!
It's wonderful that you and Max find so much joy together!
I believe I detect a hint of "Oh Ma! Not more pictures" in Max's expression :)
Sepia certainly enhanced a wonderful portrait. Sarah is a good photographer.
I hope Max and all his family celebrated a wonderful birthday.
I knew I liked you from our comments back and forth but I now know you're a hero too!!
Max rocks the house! :)
oh, i love that new commercial. heehee
Happy birthday Max!
Thanks everybody! I will pass those birthday wishes on to Max. He will be very pleased.
He is very handsome in sepia. :D
What a wonderful shot! And thoroughly enjoyed Max's story. Happiness to you both!
The sepia effect makes this portrait very special !
I was visiting another site and saw I had missed their Sepia Scene so I checked back at Mary's to see who else I might have missed and found your name on the list!
Happy Belated Birthday to Max! What a loving birthday post. 'Max is the biggest constant' gave me goosebumps.
Blessings to you both!
a wonderful photo - God you and your family - Judyx
Happy birthday to Max!
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