Monday, July 15, 2013

Rainy Day Revolt

One of the hardest things about being the mom of a child with a lot of needs is that there is absolutely no thanks, no "mom, I appreciate all you are doing for me." Instead, the child who you do EVERYTHING for and more takes their anger and frustration about their difficult life out on you. And you are left constantly second-guessing yourself. All these things happen on a daily basis.

* * *

On this rainy afternoon I dragged all three children out of the house to go to swimming therapy. Everyone, including myself, would have liked to snuggle up on the couch and watch tv or read a book like I'm sure a lot of families in Dallas did today. But because we miss so much therapy due of sickness or doctor appointments, it's hard to justify not going on days like today when we don't have anything else to do. Every increment of therapy really is so critical for Maggie after she has Botox.

So it was on with the raincoats and out the door at three o'clock. But as soon as I locked the back door and turned around Mary Lawrence slipped on the top step and flew through the air, over three steps, and landed with a thud flat on her face. (Is it normal to want to scream when your children hurt themselves? Because that's what I wanted to do!)

Thankfully she just had a bloodied knee and not a broken leg. After a few minutes calming and bandaging her, back out the door we went in the rain. Twenty-five minutes in downtown Dallas traffic forced us to be super late. So we have to run across the parking lot in the rain, baby screaming and ML still sniffling, to get Maggie dressed for the pool.

But she won't go.

She starts crying that she doesn't want to go in the pool. I tell her she has to go and try to pry her hands off me. But no, this waif-like child clings to me with all her strength, and starts screaming as if threatening to go into full meltdown mode in front of all the sweet yet curious elderly people doing water aerobics.

I don't give in. I threaten her while ripping her hands off mine and then plop her in the hands of the therapist.

But she still sobs.

I try to bribe her. Threaten her. Anything to get her to stay in the pool and make this trip worthwhile. I go sit down and pull out my phone to try to show her that her crying isn't going to help. But she continues, reaching her hands out to me as if she is in deep pain and calling out for relief...but I refuse to give in.

The poor therapist tries to get Maggie's attention with pool toys and water guns. But her tear-soaked eyes are still locked on mommy.

I just know all the old ladies rinsing off nearby think I'm cruel. But I don't care. There is absolutely no reason why she should be acting this way, I tell myself. She was fine all morning. She had a nap. What is the deal?!

I starting talking to her in an angry tone. No help. Then I try a (fake) sweet tone. No luck. I tell her she can pick out Skittles in the cafeteria. No takers. Watch the Saige movie again. Nope.

Five more minutes of crying and still she refuses to participate. All I can think about is money down the drain, a whole afternoon wasted, and four out of four of the girls in our family at the end of their ropes.

Fine, I say angrily, get out; we will go home. Maggie immediately stops crying and I gather up our belongings and rush out the door, apologizing profusely to everyone in our path.

Then I do something really mean. On our way out to the parking lot we stop by the cafeteria and I let Mary Lawrence pick out candy. Maggie sobs when I tell her she can't have Skittles. You should have done your therapy, I tell her. Cruel, I know.

See, the life of a child like Maggie is full of people manipulating you. If you eat this, I'll let you watch tv. If you don't put your brace on, you won't get to read a book before bed. If you just get on the ball and do your exercises, I'll let stay you up late. If you don't, I'm taking away your favorite lovey.

In a desperate and pure effort to get this child to thrive, we have totally manipulated Maggie in a way where she is now (understandably) angry and manipulations no longer work because they are now rendered useless.
And if she decides, like today at the pool, that she doesn't want to do something, then there isn't a darn thing we can do about it. Except punish her. And then question why you punished her by withholding the one thing she really needs: calories.

Yes, the whole thing of raising a child like Maggie is so confusing and convoluted, especially when you strap your broken-looking child into her car seat.

Tears rolled down both our faces as we drove home. And I stopped and got her some more Skittles...

Friday, July 12, 2013

Maggie's Week in Instagram

A while back someone commented to me how much better Maggie has gotten with time. And I wanted to say, but I didn't, that it wasn't time that made her better. It was her hard work and sheer determination to do things other children do. There is NO way Maggie would be where she is today without all the therapy she has endured over the years (and the goodness of God!).

While she looks really good and does things most children do, what nobody sees is that Maggie still has about seven appointments a week- two physical therapy appointments, two speech, one occupational, one aquatic and add on there one doctor appointment and that's usually a pretty normal week. Of course, that doesn't include the twice a day (painful) stretching and twice a day (exhausting) strengthening exercises we do at home without the therapists, plus the taking on and off of braces and let's not forget the practice of eating.

I instagrammed a week of therapy and appointments this past week because I wanted to document how hard this child works. In fact, we call it "Maggie's work."
And it never stops.

We are so proud of her and often forget she is only three and a half years old because she is so mature and aware after all she has gone through. Most three year olds would not do well spending their weeks doing all that she does...

Tuesday, July 9, 2013

Enough is enough

Let's face it, Maggie is a pill. She's the most strong-willed child I know. I am thankful for it for obvious reasons, but it also drives me to the loony bin at times.

The potty training issue is a good example of this madness. We have been working on this for a year now. I have tried bribery, charts, stickers, candy and everything in between. I have even stooped to making her go get her pull ups and wipes and dispose of her dirty diapers herself to no avail. For goodness sakes, we even had an MRI to make sure she could control her urinary and bowel movements. (And, yep, she can.)

Here is a recap of my failed manipulation attempts:

Me: “Maggie, you are almost four years old, don’t you want to go potty like a big girl?”

Maggie: “No, mom, I don’t want to go potty; I like you to change my pull up.”

Me: “Maggie, if you start going potty I will buy you whatever toy you want. Anything you want, Maggie, a Minnie Mouse toy, an American Girl Bitty baby outfit, a tricycle!”

Maggie: “It’s ok, mom, I don’t need any new toys. I’ve got lots of toys.”

Me: “Maggie, I know you how much you love school, but if you don’t go potty by yourself you can’t go to school next year and your teachers would be so sad. Think how sad your friends Hattie and Evelyn will be…”

Maggie: “Ok mom, I don’t have to go to school. I will just stay home with you while Sissy goes to school. We will have fun.”

Last Friday I hit my breaking point when Amazon delivered an obscene amount of diapers, pull ups and wipes. That's it, I told myself, I am no longer going to have two children in diapers. Just not going to do it. Maggie can ruin every rug and piece of furniture I have, I don't care, I am not putting pull ups on her anymore.

So I started my third "official" potty training attempt trying the John Rosemond method:

Me: “Maggie, I just got off with the doctor and he said that now that you are three and a half you can’t use pull ups anymore during the day. You can only use them at night.”

Maggie: “Noooooooo, Mom!!!!” (Sobbed for thirty minutes looking like she lost her favorite toy.)

I know Maggie has a tough life (I'm actually instagramming a typical week of therapy for her because it is so crazy how hard this child works) and I feel bad being so hard on her when she is already working on so many other issues. But I had a revelation: I'm not doing her any favors in life by doing everything for her, including changing her dirty diapers. I've been her nurse for long enough, now it's time to be mom.

(We are going on day 6 of getting rid of the pull ups and she's still not potty trained. Not giving up if it takes me all summer….but you see me at the American Girl store buying something ridiculous now you will know why.)


Give me a Break

I'm sorry, am I supposed to feel sorry that the terrorists at Guantanamo Bay are being tube fed as a result of their ongoing hunger strike? People are so outraged about it. Give me a break... This is how I fed my six month old preemie who was less than 12 pounds. Nobody was outraged about that.

Go to any NICU or feeding therapy facility and half the children are fed this way. It kept my baby alive and I was thankful for it, no matter how horrible it was to insert that slippery tube up through her nose and down into her stomach (and witness way more gagging than Mos Def endured). At least those prisoners have medical professionals to do it...I was a sleep-deprived and desperate mom doing this in the middle of night. If my preemie who was literally wasting away before my eyes can handle it, I'm sure those grown men - who also happen to be terrorists - can, too.

Yeah, no sympathy here.