Monday, January 26, 2009

Monday Morning Confessional: big, bad fears

video
A scene from Sabrina's wild and crazy fourth birthday party

Hello, all. Hope you had a good weekend. My mom (aka Babba) came over, and Aunt Judy too. And Max wore jeans. And at Sabrina's party, she got to dress up as a princess, and we had Carvel ice-cream cake with chocolate crunchies, the best ice-cream cake in the history of ice-cream cakes. So, in a nutshell, both kids had the best weekend ever. And when they have a happy weekend, we have a happy weekend. It's contagious.

Max has been incredibly chatty lately. He lets out strings of sounds that seem like sentences (in Swahili or something). The rhythm and variation in tonality are a definite part of language development, and so I'm ecstatic. He was very excited to be at the party, which also thrilled me; he used to wig out in any new situation.

When Max is doing really well, I find myself thinking back to how little faith I had early on in his life that he would be OK. Max has microcephaly, which basically means the circumference of his head is small and so is his brain. The risk of the condition is that it can affect brain function. Early on in life, a couple of doctors made much of the fact that Max was microcephalic, which caused me great concern. I'd get anxious whenever we'd go to a doctor and he'd take out a tape measure. Once, I asked Doc Cargan, our wonderful pediatric neurologist, whether Max's head would look like the shrunken-head character at the end of Beetlejuice. That gave him a good laugh, though I was only half-joking.



Eventually, I learned that you can have a family history of microcephaly. As it turns out, my father also has a really small head, and the man is brilliant. Not for nothing, Albert Einstein's brain was also smaller than average.

I'm not deluding myself here. Max's brain doesn't work perfectly. But it works pretty darn fine, especially considering that he had a major stroke at birth. And his head looks perfectly OK—the good hair probably helps! The most important thing is that he continues to progress. That's a hard lesson I've learned: forgetting Max's medical history, not letting my mind go to crazy places and staying focused on what he's doing.


And this child continues to amaze me.

Around 12:00 EST today, a first post of mine goes up on 5 Minutes For Special Needs‚ check it out when you can.

15 comments:

  1. Great post !! Its so hard to let your mind wander to all the what if's etc.

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  2. Yay Max! Way to show them what they DON'T know! You let those monsters have it! Speaking of which, good post on Rob's blog, nice job!
    I have given up waiting around for monsters. I quit googling hemi CP and I quit reading the list-serve stuff. When we come to those bridges I'll look for help and I know it's out there, but I think we'll just drive ourselves crazy listening to the worst. We see our kiddos every day and we know there's WAY more potential than a scan and a text book can tell us!

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  3. Good post! I enjoyed your post over on Rob's blog, too. You and your husband sound like you have a very similar relationship to me and my husband. I'll have to check out what you have to say over at 5 Minutes For Special Needs.
    As we get closer to Connor's third birthday, I find myself doing a lot of thinking back over his first few weeks too. I can't remember if I told you this or not, but Connor also had a stroke-- in his case at about two weeks old. He got too cold during a medical procedure and ended up with a Grade 3 intraventricular hemorrhage. We're not sure exactly how much of his motor skill issues can be attributed to his brain structure and how much to the stroke, so he's not officially diagnosed with CP. He's also at risk for more strokes in the future because of his particular heart defect, so he takes aspirin as a prevention measure. Connor is also doing much, much more than he was ever supposed to do. Evidently our kids didn't get the doctor's memos. :)

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  4. Awwwww.....what a sweet Monday morning post to read......you are an amazing mom with an amazing family......I'm glad y'all had such a great weekend......oops....y'all don't say y'all do you?

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  5. thank you so much for sharing this. he is so sweet. i love the wild video! :) you sound like such a nice mom. "sabrina, the monster princess!" :)

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  6. Oh man my invite must have been lost in the mail... I love Carvel cakes!!!! Happy b-day to Princess Sabrina!

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  7. I just found you via 5 minutes for special needs. I adopted my daughter, who has cerebral palsy, a few years ago. She is almost 14. It has taken her a lot longer to get those milestones under her belt but she is reaching them. There is always hope. Her doctors, therapists and social workers had little hope to share with us but we saw a light inside of her and were amazed that no one else could see it.

    If you are interested, I can share with you some of the therapies that have worked for her. Tara is now walking, running, and communicating with very little issues. It was only five years ago that she couldn't communicate, run, jump, or stand up straight.

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  8. Max is a beautiful looking boy. It's okay to doublt how things will work out. It's not the burden but how you carry it that counts and having read through some other posts on your blog I can see that you are doing a mighty fine job. I hope that your week was as good as your weekend was!

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  9. I too have experienced those same thoughts and feelings when the dr. whips out his measuring tape. Crew also has microcephaly. I love it that your child speaks Swahili too! Isn't it a beautiful language!

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  10. Saw your entry at Schuylers Monster.
    Have you found the guacamole tortilla chips? Worth looking for.
    Have been reading your family's blog for awhile.Happy Birthday to Sabrina.Max is a very handsome young man. As for microencephaly Max can be an eccentric unique individual. He obviously has a very loving busy family. He is being encouraged by all of you. He will become even more of a lovable member of your family and the worarbara

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  11. Your are so right we get so caught up in the what they cannot do we forget to sit back and look at all the amazing things they are doing.

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  12. Oh, I so love that our kids "didn't get the doctor's memos!" Nicely said, Connor's Mom. What is your name?
    * Shari, you are correct, I do not say y'all although I have been known to say "You are my peeps" and "Where is my posse at?"
    * Torina, greetings. Advice is always welcome on this blog! I would love to hear what has worked for Tara, who sounds like she is doing amazingly well.
    * Sue, that was sweet of you to say. I try. And my week is off to a good start!
    * Mel, indeed, Swahili or whatever language Max speaks is beautiful.
    * Anonymous: Will try the guac chips, at your suggestion. And you are so right, Max can indeed be a unique eccentric individual. See tomorrow's post with his unique current choice of getup. But, educate me, what is "worabara"? Because I myself do not speak Swahili. :) Or perhaps that's Japanese?

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  13. Found you today over at Schuyler's Monster. My little one also has CP and is doing so much better than we were told to expect. Sometimes it seems like the possibilities are endless if I can just allow myself to believe it.

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  14. I was walking through the store today, and thought to myself that I needed to focus on Jude and not the doctors. So thank you for pointing out that is the right attitude to have. Jude has microcephaly too along with everything else. I would demand tape measures from the time he was born. The other night we broke the tape measure....on purpose :)

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  15. Ellen...I am still really enjoying your blog. It is one thing I look forward to every day!! Loved your post on the 5 minutes site and the *Rubber Swords* blog. I had to comment on a few things...I hope this makes sense as I have an intense case of sleep deprivation. I'll write it this way:
    - I had lots of doctors tell me the worst case scenarios. I even had a nurse practitioner in the NICU sit me down and tell me Gavin had Downs Syndrome because of his epicanthal folds. I was two days after giving birth and very emotional so I burst into tears. Then I looked at her and asked, "Wait...do you know that my husband is Chinese?" Oops! Some people just don't know what they're talking about.
    - I make a point of letting doctors know along the way whether I feel they are inappropriately negative. Like the doctor who said "don't expect much" or even recently my beloved pediatrician who was quick to suggest formula supplementing for my newborn. I think it's important for docs to remember that the parents need SUPPORT...and it's important that their support comes with great delivery. ;-)
    - I think it's AWESOME that Max has made so many strides. People don't get how great our kids milestones are...they work so hard for them!! Gavin has also made SO many neurological improvements that some didn't expect. I attribute them to Craniosacral Therapy and a special diet I have him on. I hunted down a doctor I found that specializes in treating brain injured children through diet. I'd be happy to share what we do if you want. Just email me!
    - Gavin doesn't have Microcephaly, but very often people think he has HYDROcephaly. His head size is OFF the growth charts. It's no coincidence here, either, that both of his parent's have big heads. Well, figuratively speaking.
    I have so much more I could say, but I've taken up too much space. Email me anytime! Happy Birthday to Sabrina!
    kate
    www.caringbridge.org/visit/gavinleong

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Thanks for sharing!