Look what Mahalo made for me!

Sqweee! I can’t tell you how excited I was to see this:

22q-deletion.png

Here’s the story: if you want the smarties at Mahalo to build you a page, you can Twitter them your request: i.e., @mahalotodo (insert page subject here). I did this last week for 22q deletion syndrome, a little-known genetic disorder that I REALLY doubted they would take on, since it’s kind of super-specific. However, they did, and now I have all my 22q info in one super convenient place.

Why is this a big deal? Well, 22q is a little tricky to find good information on. I don’t have to worry about that anymore. But that’s not the biggest reason I’m excited about this. THIS is why.

halloween-004.jpg

Meet Henry, aka Mr. Chub, aka Naked Flash (don’t ask), aka king of my everlovin’ heart. Henry has 22q deletion. Let me tell you what this has meant for our family:

  • I was told to prepare for a stillbirth since his left kidney was non-functioning and his right was shutting down; plus, in general, things were just kind of on the sucky side.
  • Both kidneys failed after he was born and he was in the NICU for a while.
  • He didn’t talk until he was 4.
  • He had his left kidney removed. Chicks are TOTALLY going to dig that scar.
  • He is hospitalized about once a year (average) for various health problems related to all his “stuff.”
  • He has multiple learning disorders that are kinda boring to go into so I won’t. But I WILL pause for some brief bragging: he’s keeping up no problem in 3rd grade.
  • He has a full cardiology workup next week because “there’s something wrong with his aorta.”
  • He is very emotionally and socially stunted.
  • We believe he will probably be living with us long-term. As in, always.

THAT’S the reality of 22q. Amazingly, we got a mild dose. There ARE kids dying from this.

But enough of that depressing stuff! Let me tell you what ELSE 22q means for our family!

  • I have constant hugs and kisses. CONSTANT. Sometimes this is a problem. Not.
  • He has some issues with putting his clothes on (hence the “Naked Flash”).
  • He has a really crazy maniacal laugh, especially when he’s up to something.
  • He sings beautifully, even though you can’t understand his words because of his speech issues.
  • He’s a great snuggler. Great nap buddy.
  • Every single person who comes in contact with him falls in love. No joke.
  • He will play Hot Wheels for hours getting louder and louder with the sound effects. Boys!
  • He is super sweet in the mornings. Mostly.

I’ll stop there because I’m starting to make MYSELF a little queasy; also, because I need to come to the point of this whole post (I can has a point? Yes, you can has a point!). Even though it’s just a little itsy bitsy thing in the big scheme of life, I am thankful today that I now have a new resource to instantly turn to whenever I have a question about some new thing Henry is showing up with. More than anything else, THAT’s why Mahalo suddenly won me over. I was a bit stubborn there for a while, mostly because I’m a redhead and redheads – you probably didn’t know this – are, shall we say, contrary. I’ll be writing up a revised Mahalo article sometime today over at About.

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15 Responses to “Look what Mahalo made for me!”

  1. Jason Says:

    You’ve made the day of everyone here at Mahalo. The tag line of the company is “we’re here to help” and getting feedback like this is just inspiring for us.

    all the best,

    Jason McCabe Calacanis
    CEO, Mahalo

  2. Lynnelle Says:

    I just wanted to tell you he is the sweetest little boy ever!!! and your post really made me cry.. You are very lucky to have such a wonderful little boy.. forever. I wish you and your son all the luck in the world and hope you have everything you need and want always…

  3. kevind Says:

    I just found this post via Jason’s Twitter. I agree with him, it really gives a meaning to all this web stuff we do.

    all the best to you and Mr Chub.

    Kevin

  4. Steve Odom Says:

    Saw on it Jason’s twitter feed too. Brought tears to my eyes in a good way.

  5. Cindy G Says:

    Momspeak, Your words brought tears to my eyes and joy to my heart. Your blessings are immense and better yet, you understand them!
    It is so great to hear how Mahalo can help. Your happiness is the main reason we work so hard to do what we do. Thank-you for your encouragement!
    P.S. We can always use new guides with your talents!

  6. Eric Bunde Says:

    A big thumbs up to Mahalo, and an even more warm wishes to you for that wonderful post. It is very evident that you are a very proud mother (as you should be). I do know what you mean about the scar though, one of my twins developed NEC and had several surgeries. Hang in there, enjoy each day.

  7. Melinda M Says:

    I just wanted to let you know that it really warms the heart to hear such a story. You’re very lucky to get those hugs from your baby, there’s no other feeling like it. My thoughts and prayers are with you and your and Naked Flash. God Bless.
    Melinda
    Mahalo PTG-MMD

  8. lilypotter Says:

    You’ve been tagged through NaBloPoMo! Your son is adorable, by the way.

  9. momspeaks Says:

    OMG, you guys. Thank you so much for your kind words and thanks. I’m getting all verklempt over her. :>)

  10. momspeaks Says:

    Um, that should be “here.” Typing and watching Mary Poppins with the kinder at the same time.

  11. Andy Says:

    I found this via Jason’s twitter feed too, amazing story and may you be blessed beyond belief through this experience! I love the Superman costume!

    Best Wishes – Andy M.

  12. Daryn Says:

    I am so happy you enjoy the page. I run the health vertical at Mahalo, and your words make my work worthwhile. Thank you for all your support. My heart goes out to you and Henry.

    Sincerely,
    Daryn

  13. Betsy Says:

    Read your story and know you are blessed with a sweet angel. Glas this site has helped you and hope to have you update us on your Henry “Mr Wonderful” Bless you

  14. Jenny Says:

    Jason sent out word on the mahalo circuit about your story. This was so touching that it brought tears to my eyes! Thank you so much for sharing your wonderful Henry with us all!

  15. Katrina Says:

    What an awesome post! I giggled, got choked up, and overall felt like an insanely emotional female šŸ™‚ I am so proud to be a part of a company that can help others, and your post just rekindles that pride. Thank you so much for sharing this.

    Have a wonderful weekend,
    Katrina
    Mahalo PTG-MMD

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