Wednesday, April 27, 2011

To Not Have Him (Hopeful Parents)

Another month gone by and I haven't posted a darn thing here.  As usual it is not that nothing has happened, it's that too MUCH has happened and that by the time I process one thing and start to write about it I either get interrupted or a new crisis erupts.

I will tell you that Abe broke his wrist playing baseball at a tournament and that when I saw him crouched on the field holding that limp wrist I jumped up and down on the clangy metal bleachers and screamed every swear word I know. Yep, I'm calm in a crisis.  After a couple of nerve-wracking days of uncertainty over what was broken (or not) we landed with a most fabulous hand surgeon, who thankfully did not suggest surgery, but fashioned a beautiful cast with which Abe can still play baseball. I found myself jumping up and down on a different set of clangy metal bleachers a week later when he hit a single and a triple after switching back to righty hitting (after three games of lefty bunting he decided that just wasn't his thing) wearing the cast.  It's amazing he can play at all, and believe me I asked the doctor fifteen different ways if he was sure he didn't risk further injury. 

And I'll tell you that Oscar, that same weekend, performed so beautifully with the Latin American youth ensemble Los Mapaches, leading the group onto stage confidently playing bombo, a traditional drum made from wood and sheep's skin. He sang out earnestly, played zampona, and did his best with the dances.  After the concert, a member of the adult Latin American music ensemble complimented Oscar on his bombo playing and all I could think was "he doesn't know!"  That man doesn't know that Oscar has a disability and that he worked extra hard to learn that complex beat that might have come easier to someone else. He wasn't just being nice. (If he'd complimented Oscar's dancing I'd know he was just being nice). Oscar idolizes the adult musicians and just beamed up at him emitting a barely audible "thanks".

And I'll mention that Ruby's perseverance and stamina on the soccer field is astounding me.  Before this season she liked soccer, but now she seems to love it and runs harder and longer than I thought she could.  Some parents from her old preschool formed an all-girl team this season and she's so thrilled to be with her old buddies again twice a week.  Last week, after playing for nearly 45 minutes without a goal, her team finally scored against a dominating squad.  The girls, all just 5 and 6 years old, immediately rounded into a joyful celebratory circle, red sweaty cheeks pressed together, and laughed and whirled around. I got all teary-eyed as did my good friend B, not because her daughter scored the goal, but I think because like me she saw in that spontaneous celebration how our girls are already understanding perseverance and teamwork and friendship on such deep levels.

So that's a slice of our month.

Today is my day over at Hopeful Parents. I posted an essay I'm working (or should be working on) that I adapted from a blog post here a year or so ago. 


  1. Oh, I just cringed reading about Abe's broken wrist--yikes!! I think jumping on bleachers and swearing is a perfectly reasonable response. And yea for Oscar's music and Ruby's soccer. You are one busy mama!

  2. I do miss you when you disappear from blogging, but you more than make up for it with posts like these!

    Love to you and your wonderful children.

  3. How awful, to have to watch your dear boy with his hand dangling like that! Yet, what a blessing that doctor sounds. I'm thankful for his good work and that Abe's arm is on the mend.
    I loved the story of Oscar's musical triumph, and his joy in it. And Ruby's soccer game - that moment of cameraderie - a gift to be able to see that. Thank you for sharing it with us.

  4. Dear Mary, In the last week I have read your entire blog, beginning to end... I have thoroughily enjoyed it, and it has given me a lot of hope and a few tears along the way.

    Our son is 10 months old, and was diagnosed with PWS when he was 3 weeks old. Reading about all the things that Oscar can do has given us a lot of hope. Reading about the difficulties has also been good, as it is useful to hear about how your family tackles different things (and I probably wouldn't have believed you if there hadn't been ANY difficulties at all!).

    Please keep up the writing - you do it so well, and the humour that comes through makes it a wonderful read.

    Many thanks - without knowing it you really have helped,


  5. Dear S.,
    Thank you so much for reading...I can't tell you how glad I am to hear that you are finding my blog helpful and hopeful. I remember so well my grief in the first two years of Oscar's life and how I soaked up every little piece of information and every little anecdote, even the hardest ones. I held tightest to stories that pointed toward hope but I personally needed to hear it all. I remember that one mom had written about her daughter in a PWS newsletter and had included a picture of her smiling two year old with the caption "E frolicking with friends at preschool". I carried that piece of hope with me for years. It's incredibly hard to hear so much devastating information about your child before they've become their wonderful selves. I wish you all the luck and feel free to contact me off line if you would like.

  6. Dear Mary,

    Thank you for your kind reply (and the offer to contact you offline - how would I do that?). Your comments about the first years of Oscar's life are very familiar... I'd like to think we are over the grief stage, but some days I'm definitely not, which seems very ungrateful as our son is such a pleasure and we've been very lucky in so many ways.

    However, I am still obsessively reading any thing I can on PWS, and thanks to you and some other bloggers, the reality of life with a PWS child (especially an older child) seems much less daunting and much happier than the text book information would have you believe. We seem to be going through a very easy stage at the moment (he is now eating well and is up to an average weight and length), so I should just be enjoying it rather than being scared about the future, but sometimes it's hard not to think ahead, and this is where your blog has helped.

    Our baby has now started to have his own very definite personality and ideas about things (so soon!) and can be hilarious - he also falls over laughing (from sitting). But he is our first child, so I suspect we were just clueless about babies in general!

    Best of luck to you and your family,