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Monday, June 27, 2011

Some Mothers Get Babies With Something More

 by Lori Borgman| Monday, May 12, 2002  


I've read lots of these lovely essays, here's one I hadn't seen before that was posted by a Mom on FB.  It's very thoughtful.  -D


My friend is expecting her first child. People keep asking what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the ages of time. She says it doesn't matter whether it's a boy or a girl. She just wants it to have ten fingers and ten toes. Of course, that's what she says. That's what mothers have always said. Mothers lie. 

Truth be told, every mother wants a whole lot more. Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin. 

Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly. 

Every mother wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two). 

Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class. 

Call it greed if you want, but we mothers want what we want. Some mothers get babies with something more. 

Some mothers get babies with conditions they can't pronounce, a spine that didn't fuse, a missing chromosome or a palette that didn't close. 

Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small, suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn't see the kick ball coming and it knocked the wind clean out of you. 

Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. It can't be possible! That doesn't run in our family. Can this really be happening in our lifetime? I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It's not a lust thing; it's a wondrous thing. The athletes appear as specimens without flaw - rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler. 

As I've told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there's no such thing as a perfect body. 

Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery. The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it. Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day. 

How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists hammering in your ear. 

I wonder how you endure the clichés and the platitudes, well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike. 

I even wonder how you endure schmaltzy pieces like this one -- saluting you, painting you as hero and saint, when you know you're ordinary. You snap, you bark, you bite. You didn't volunteer for this. You didn't jump up and down in the motherhood line yelling, "Choose me, God! Choose me! I've got what it takes." You're a woman who doesn't have time to step back and put things in perspective, so, please, let me do it for you. 

From where I sit, you're way ahead of the pack. You've developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule. 

You can be warm and tender one minute, and when circumstances require intense and aggressive the next. You are the mother, advocate and protector of a child with a disability. 

You're a neighbor, a friend, a stranger I pass at the mall. You're the woman I sit next to at church, my cousin and my sister-in-law. 

You're a woman who wanted ten fingers and ten toes, and got something more. You're a wonder.

Saturday, June 4, 2011

Busted

So, this morning Nestor and I went to the LA Premiere of the amazing documentary, "Certain Proof: A Question of Worth."  It is a a tremendous project that gives a voice to non-verbal kids like Amelia.




At the end of the film there was a Q&A with the Director, Ray Ellis.  A question was asked by an audience member and when I looked back, I saw that it was a father from Amelia's school, who I used to see all the time in the parking lot at drop-off in the mornings.  I was a little surprised to see him in West Hollywood on a Saturday morning, so far from the Valley.  On the way out we stopped to say hello to him and his wife.  I hadn't seen him in a long time and he mentioned that his son is now in a different school.  He mentioned that he still reads my blog, to which I said "well, it's been awhile since I did an entry."  He agreed.  Oops!  Busted!  I love this blog and I have been very lazy lately in posting.

I plead morning sickness.  Nausea.  Exhaustion.  Yes...Amelia is going to be a big sister in November.  We are very excited and of course, feeling a bit cautious.  Amelia has no idea what she's in for.  I keep telling her that she's going to be the best big sister and I know she will be.  She is all love -- so how could she be anything else!  I am having an amnio on Wednesday -- so keep us in your good thoughts!

Also, Amelia's IEP.  Being put on the waitlist (#204) of the inclusion charter school, Chime -- which we are in love with and were hoping against hope that Amelia might get into for Kindergarten.  Running to GI, ophthalmology, speech therapy, occupational therapy, physical therapy, OB (for me!) appointments.  We've had some out of town company -- which was spectacular!!!!  And the rest is just general crazy life!!!!!

Amelia's latest thing:  lastnight Nestor and I went to see "Bridesmaids" (so fun!).  As we were walking thru the gate to come into the house, we could hear Amelia hysterically crying from outside.  We came in and she was in a full-blown state.  Big tears and huffing and puffing.  Her nurse said that it had started a few minutes ago right after she hooked up Amelia's dinner feeding.  At first I was sure that it was the cartoon on the TV.  She can be somewhat temperamental about it and seemed to be reaching toward it.  But huge tears and hysteria?  Didn't seem right.  As I went on the other side of her, I was able to see that she was pointing to the big cup next to the TV that holds an assortment of lollipops.  In particular....the big Mickey Mouse eared lolly.  We had given it to her a few days before, but because her secretions had been thick the past few days (cold or allergies?  not sure!) lollies were off the list for now (aspiration risk).  But seriously...she had stated her case and WON!  Out came the lollipop and she was absolutely silent for the rest of her feeding.  Joyfully glowing in the sticky residue of the pop.  It was so incredible to see her fight so vehemently for what she wanted and thank goodness we were able to figure it out.  It is so frustrating for us, but just imagine how Amelia must feel.  She has been reaching for the lolly at each feeding now.  I love it!  She is associating a food (even if it is a lollipop!) with her GT feeds.  Can you imagine never having eaten food -- for your whole life?  Amelia has no real relationship to food.  I hope this is another leap for her.  Small steps are enormous in her world...and in ours!

Enjoy it, my girl!  You deserve it!!!!!!


"What are you looking at?"


Yummy:))