Noodles & Chocolate Cake

Please click play before you read this post, it needs accompaniment.

Tonight I was driven to chocolate cake, milk, pepsi and tortilla chips. That’s how far down in the dumps I fell.

The day started with 1005 excuses why I should skip taking Nathan to his Waldorf school and stay in bed all morning. I had it all worked out – a perfectly good reason why it would be best for me to stay in bed – but at the last minute I just couldn’t do it, given how much he loves and enjoys going to school. So off we went and for the first few moments as I watched him squeal with delight I congratulated myself for making the right decision. Until one of the kids whacked me in the nose with a gigantic log. And until Nathan threw up all over himself (and me).

Then we made it home and I announced to his father who is now the “responsible party” that Nathan threw up – again – for the 5th or 6th time in the last few days so he had to choose a doctor to take him too to figure out what’s going on. Subsequently Owen double booked and made the appointment twice at the wrong time. Then he decided that Nathan is old enough not to need a nap so Mary could keep him up until the time for his appointment with the Doctor, that she was supposed to take him to by herself. At which time I exploded (so much for giving away control) and told him what the hell is he thinking and I had to call and unbook all the double bookings, cancel the doctor, and put that child to sleep! Well the child didn’t stay asleep for more than a few minutes so why not go do the doctor (which I demanded he had to go to as well – you can’t send even the wonderful mary poppins to the doctor with Nathan by themselves!).

They came back well chastised by Nathan’s doctor who proceeded to yell at them for stopping the Prevacid. Did I mention his Pediatrician yells? She’s told me God will punish me for some of the choices we have made in Nathan’s care (we keep going to her because she’s the best doctor in our area – except for the gargantously horrendous bedside manner). We had stopped giving him Prevacid because we thought we had his reflux under control with natural meds and other methods. Apparently not. So Owen picked up a whole bunch of Prevacid to start Nathan on it right away. Maybe I’m the only one concerned about the side effects on being on such a medication for your whole life?

After they got back I packed him up since it’s Owen’s “night off” to play computer games and we went to the library for a special music class. There were about 30 kids there playing instruments and singing and dancing. As usual I sat with Nathan and tried to give him instruments and tried dancing with him and moving him around. And he did his usual noodly flopping – the head in one direction, the trunk in another, arms and legs floppy like Raggedy Andy. Except this Raggedy Andy was a veritable waterfall. The amounts of drool coming out of that child could fill an entire swimming pool. I never thought I’d consider medicating for drool but there it is – I considered it. So after about 30 minutes of being bathed in drool and trying to keep all of the body parts in relative alignment I burst into tears and ran out of that local library.

And of course since I was crying so was he so we made our tearful way home from the library. We got a second wind of bursting into tears when we saw Owen who proceeded to excuse himself from our crying but he was busy with his World of Warcraft Raid and could I hold those tears until later.

Nathan and I finished our cry together and I put him to bed. And this, my friends, is how I ended up with a humoungous gluten casein free chocolate cake on my lap while I watched Bedtime Stories. And yes, feeling very sorry for myself.

And I have to admit. I would give anything for Nathan to have a little bit of head and trunk control. It’s so hard to keep 36 inches and 27 pounds of noodly parts in alignment. I guess I had hoped that after everything we’ve done we’d at least have gotten something. At first I thought that something would be walking & talking. Then I settled for walking. Then I settled for sitting. Then I settled for head control. Today I struggle to give up that last little morsel of control. It’s hard, real hard, harder than anything I’ve faced in my entire life. I can handle the disability, the doctors, the therapies, the stress, the responsibility, the equipment, I can handle everything…but why can’t someone throw us a bone please? Just a little one?

Comments

  1. http://Gala says

    Marcela,

    Can I give you a big big cyber hug.
    I think we all need some chocolate cake once in a while. Please don’t feel guilty.

    Love,
    Gala

  2. http://Susan says

    GOD BLESS YOU!!! May He pour out His power on your every need . . . your words about the struggle to give up that last little morsel of control are so poignant.

    I found your website in looking for information on HPE, of which I am ignorant. I am a hospice nurse and had a referral to meet with a family with a 5-month old with HPE. This family is seeking God’s will in every decision, and yours is an inspirational story. THANK YOU!

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