Saturday, November 12, 2011

SNSS: You Are My Sunshine

Even though she is not local, I have had the pleasure of actually meeting up with today's SNSS guest, Diane AKA Momo, TWICE so far this year. And I can attest to her being every bit as lovely in person as she is on her blog, Momo Fali.

Momo is the mother of two children: daughter Ali (source of the blog's title) a typical teenage girl, and her younger brother with a host of special needs. Momo writes beautifully, with much warmth and humor about life with her wonderful family, and her thoughts on the world around her.

To be the mother of both a teenage girl and a boy with multiple health and behavioral issues and to retain a sense of humor? That takes a special person, which Momo certainly is.

So come read this moving post about her children's evolving relationship, now:


You Are My Sunshine - by Momo

I have two special children.

My daughter, Ali, was born 10 weeks premature and spent five weeks in the hospital. She weighed 2 lbs. 9 oz. when she was born and in 1998, that was one, tiny baby. We spent some time working with a physical therapist, but by 15 months, she had caught up with her peers in size, weight and development.

I have always called her a freak of nature.

When Ali was a toddler, her brother was born 7 weeks premature, with congenital heart defects, urinary reflux, severe GI reflux, eye problems and bad hearing. Special needs took on a whole new meaning. As he grew, we learned of OCD, PDD-NOS and SPD. Acronyms-R-Us!

We spent a lot of time, those first few years after my son’s birth, in and out of the hospital. He was a very sick baby and had 9 surgeries by the time he was 6 years old. Ali’s life was flipped upside down.

I read somewhere, long ago, that in order to make a child feel positively about a new sibling that you should refer to the baby as, “your brother” or “your sister.” I did that a lot and it worked for a long time.

I vividly remember my son being in pain and watching Ali sing to him. She usually chose, “You Are My Sunshine.” She was a fabulous big sister.

Sure, she ran from the room when he would choke and vomit, or excused herself to the hallway at the lab when it was time for a blood draw. I can’t blame the kid for that!

But, more often than not, Ali was a trooper just like her brother; at least during the medical phase of his special needs. When his health became stable, the behavioral issues came to the forefront. His quirks, she merely tolerated.

Then she turned 12 and she tolerated them no more.

Apparently, having a special needs brother is one thing, but having a special needs brother when you’re going through puberty is something else entirely. If you dislike your parents, then you will really dislike your little brother. Throw in odd behavior and it will be downright disdain.

My son not only annoys her, but he is brutally honest. This is fine, at home, when he’s telling her that she’s “bossy” (she is, in a big-sister sort of way), but in public it is clear that she would rather be anywhere but with us, out of fear that her brother will say something embarrassing.

They fight a lot, but there are fleeting moments when I see them playing together and my heart sings. I miss those, “You Are My Sunshine” days. Not the part where my son was so sick, but the part where Ali tried to make it better. Now, he sings to her (because he sings constantly) and she tells him to, “Be quiet! Gosh!”

She loves to read and, on her own, she chose a couple of books from the library about siblings of kids with Asperger’s. When asked, she jumped at the opportunity to sit, privately, with my son’s psychologist to talk about what it’s like to be a special needs sister. She is learning and speaking about her situation at her own pace, on her terms.

But, she will not talk to me about it and that’s okay. She’s almost 13. She doesn’t want to talk to me. You know why? Because she’s not the special needs baby that she used to be.

She’s a regular tween. Her prematurity didn’t affect her as it could have. Other than a couple of minor medical procedures as a toddler, she has grown, completely, into a typical girl. And, that’s a great thing.

Would I love to know what she’s thinking? Yes. Would I love to know what to say and do to let her know that her feelings are perfectly normal? Yes. But, as long as she can talk to someone about it, it doesn’t have to be me.

My job is to let her know that she is loved, to remind her that her brother can’t help embarrassing her and, when she, someday, realizes how fortunate she was to have grown up with a special needs brother, I will welcome her back with open arms.


I love how Momo understands and accepts that her kids' relationship will change and evolve over time, trusting that it will fall back into a better rhythm someday in the future. And also her acceptance that her daughter may just not want to talk to her mother about everything at this point in her life. (Teenager - how that word strikes anticipatory terror in every parent of a younger kid's heart!)

Also, I have to say, that song "You Are My Sunshine" that serendipitously played a role in both last week's AND this week's SNSS posts? Terrified me as a young child. It made me deeply sad, made me sob and wail. Why? Have you heard the lyrics? "Please don't take my sunshine away... You have shattered all my dreams." But I'm over that now. Sniff.

OK, now that you have read Momo's lovely words here you're going to want to follow her home to her blog, Momo Fali, and read her there. 

Try starting with this post about her daughter that tells the story of the blog's name  or this one in which Momo shares some of Ali's incipient transformation into a teenager. (Yikes!)

To know more about Momo's son, read this post written to him on his ninth birthday, or this moving piece about the pain of watching him trying to play sports, but not quite being able to keep up, becoming invisible.

Finally, for the funny (which Momo has in spades) read this post about her wasabi gob of death incident when she was in NYC for the BlogHer Writers conference last month, to which I was an actual witness!

Also? Follow her on Twitter where she tweets as @MomoFali and go to her Facebook fan page and let her know you like her, you really like her.

Thank you Momo, for your friendship, and for this lovely, lovely post about your beautiful, special children.

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