On dividing energy between siblings with different needs

It was a lazy Tuesday morning, and Brenna was cuddled among blankets on the couch watching her favorite show.

I followed Connor upstairs to help him get ready for the day, when he told me he was tired and wanted to lie down. He was just getting over a little stomach bug, so I tucked him in, and he asked “will you lay with me?”

I almost defaulted to my standard “not right now, I need to get ___ done.” After all, Brenna was downstairs by herself, there is always something to be done around the house, and I’m not good at relaxing in general.

But I flopped down on the bed, wrapped my arms around him and kissed his ears and hair.

We lay in silence for a minute while he fidgeted around, unable to hold still even for a second, and he patted my arm draped across him.

“I like when you lay with me,” he said, and I replied, “me too.”

And then, he continued…

“Usually, you’re with Brenna.”

It was matter-of-fact, with absolutely no hint of resentment or accusation. It was a statement said as simply and easily as “I like PBJ sandwiches.”

But my stomach tightened and my heart ached at his observation.

I began to blink hard so that tears wouldn’t form, and I said softly “I love to be with you too.”

I’m sure he’s right. Usually, I am with Brenna, in some regard.

For up to an hour a day, one of us is focused solely on her while giving her a bath. Four other times a day, we’re putting on Aquaphor and changing her clothes and diaper. We’re preparing food, because it’s so important that she eats. We’re helping her with physical activities that she can’t do on her own.

But on top of her physical and health demands, her strong personality is maybe even more demanding.

She wants to be held. She wants to read. She wants to be carried. She wants to “help” – laundry, dishes, whatever we’re doing. She wants to know what’s going on, she wants to see what’s going on, and she wants to be a part of it. No one would ever describe her as laid-back.

Connor, on the other hand, is excruciatingly easygoing.. to the point where you wonder how it can possibly take someone 10 minutes to put on their shoes. He’s hardly demanding, he entertains himself easily, he sleeps all night, and he rarely has any health concerns.

So, naturally, my energy and attention is poured into the one who demands it.

Connor is noticing.

And right now, he’s understanding. It is just the way his world is. But will this understanding always be present? Or will, I wonder, even the tiniest bit of resentment build up over the years? Not the kind of immature “you’re so unfair; you always let her do it!” that pre-teens explode with on a regular basis…but rather, something else. Something that makes him feel less important.

My heart still aches to think about that statement. “Usually, you’re with Brenna.”

Yes, I am – I acknowledge this. And I’m sorry for this. Because I love you both equally, unconditionally, wholly. And this will always be true, no matter who “needs” me more at any given time.CourtneyWestlake-2112

I know this isn’t simply unique to children with health issues… so many siblings have vastly different personalities and are much more demanding than a brother or sister might be. What is it like in your family? Do you have a child that is more demanding on your energy and attention, and how to you handle it?

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The Big Tube Wean: nearly a year later

I thought to myself the other day that I should update on Brenna’s oral eating and gluten-free diet…and then I remembered when we actually started this whole tube weaning process and realized something: it’s been almost a YEAR.

In February 2013, we forged ahead with a plan to get Brenna to eat by mouth. At that time, she was taking one or two small sips of water from a sippy cup and maybe 4-6 tiny bites of foods like pizza sauce.

And in less than a year, using her g-tube is not even on my radar anymore.

Our feeding pump George sits alone and isolated in a closet somewhere in our new house. The syringes and boluses and tubing previously used multiple times a day are now untouched in a drawer in our kitchen. I haven’t even called the medical supply company from our new address, which we’ve been at since August.

We haven’t used Brenna’s g-tube since last summer.

The first couple of weeks with the tube wean were all-consuming and very tough. Because her body uses up so many calories to make skin, Brenna needs a huge amount every day just to maintain her weight. She lost weight very rapidly during those first weeks, and even throughout different points in the first few months of the tube wean, and we had to monitor her weight and her hydration so closely. At several points, she was extremely close (within tenths of a pound) to hitting the maximum amount of weight that her feeding team would let her lose before pulling her off the wean.IMG_4192Within 12 weeks, we finally were able to stop feeding Brenna her night-time feeding. Not having to hook her up to a machine while she went to sleep was a huge turning point for us!

And then finally during the fourth month of the tube wean, we saw a break-through: not needing her feeding tube except for medicine.

Oh, the freedom. Oh, the celebration.

To be able to wash bibs. To be able to go visit someone’s house without George the Feeding Pump packed into the van. To be able to participate in mealtimes, both at our house and and others’. To be able to pack snacks and sippy cups.IMG_4989

And to be able to stop blending up food and using syrgines to feed my child. To get to stop cleaning up green gooey spills when the syringe would pop out of the tubing…and the vomit that plagued our house. Because when you’re tube feeding a baby? They can’t tell you they’re too full. They can’t stop eating like oral eaters can. And you have to decide on JUST the right amount that will keep your child gaining weight and growing, but not so much that it all comes back up. That balance, my friends, is a hard one to achieve…and I’m not sure I will ever forget the sounds of Brenna throwing up in her crib during a night-time feed and the smells that followed.

And then somewhere along the lines during the 6th or 7th month, Brenna began drinking all of her meds by mouth. Any medicine, any time – she has never seemed bothered by the taste.

And we have never looked back.

Her weight gain is slow. But it’s there, as each weigh-in produces a slightly higher number than the date on the chart above it. She’s tipping the scales now at 21.5 pounds.

And I actually had the thought this winter that I’ve been too afraid to dream about since her g-tube was placed: if her tube came out, I think everything would be OK.

Sure, I might be worried. She’s entered a slightly picky stage where she doesn’t like to try new things…but then again, she’s 3. And we still haven’t experienced an actual illness where she continues to eat and drink through being sick (knock on wood – stay away, flu!) But she has been eating and drinking so comfortably, so confidently, so naturally, for 6 months now, that you would never know she was completely tube-dependent for half of her life.IMG_5523

Even trying a gluten-free diet has not been much of a challenge because she loves meats and dairy products so much – and those are the ones that pack in the calories, so I’m definitely not complaining! Unfortunately, I’m just not convinced that going gluten-free has been impacting her arthritis very much at this point. Her fingers are still so swollen, her toes and feet are really puffy and she asked me to rub her toes a lot, and she’s showing some signs of joint discomfort in her hips and knees.

Other than that, Brenna eats like a champ – even in the midst of her newfound picky-ness. Dinner times are struggles, because she just wants her favorite foods and doesn’t bother to give new things a chance, but we’re just continuing to expose and to require that she tries everything at least once before making up her mind. Quite honestly, we probably enforce dinner rules much more out of fairness to Connor, who has the same rules, than the fact that we actually care what she eats. Because she’s eating and a lot of it.

I don’t miss George the Feeding Pump.

I don’t miss my blender.

I don’t miss tube feeding.

It’s been nearly a year, and we’ve gone from a tube-dependent child to a kid who can be bribed using food because she loves to eat so much. Oral eating, for the win!

I’m just as much of a superhero mom as you would be if it was your child

Mothers of children with special needs are often heralded as pretty special themselves… being called supermoms, and “chosen especially by God,” and most frequently “inspirational.”

There are some who perpetuate that, writing about how isolated special needs moms feel, what with all that we do on a daily basis and with friends who just don’t “get it.”

I’ve sort of wavered in the middle of two grounds for a while – being embarrassed about the praises on occasion, and yet in full, proud agreement at other times.

I read this post about the superpowers that special needs moms have, and I thought “That’s RIGHT! I am AWESOME!” And then I read this post advocating that special needs moms really aren’t so special after all – ALL moms are…and then I thought “That’s RIGHT! I’m not awesome – we’re all AWESOME!”

But then.

Then I sit through weekly doctors appointments and manage multiple medications, and I do a scrubbing bleach bath every day to keep my daughter’s skin healthy, and I celebrate that at three years old, she is finally strong enough to carry a single children’s cereal bowl to the cabinet while we unload the dishwasher… and I am forced to acknowledge that there may be a little difference.

HOWEVER. What I ultimately think about the “difference” in mothering is this: I, as a mother to a daughter with different needs, am not doing anything for my child that you wouldn’t do if it was your child.

I’m just as much of a “supermom” as you would be if it was your child.

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At times, it’s been hard to suppress frustration and anger at fellow moms with “typical” children…listening to moms cry about their baby’s first shots when I’m sitting in the OR recovery room waiting for my baby to come out of surgery. Or hearing them freak out about transitioning from the bottle to the sippy cup, while I’m over here changing out a tube in my daughter’s stomach and blending up food and formula to push through said tube at dinnertime.

But how could I resent the mother with a typical child? I was once her. I was once that mom who complained about teething and worried about moving to a cup after nursing.b116

And even now, knowing that it can be so much harder when health problems are involved – that if you experienced tube-feeding, you’d be wishing on every star for sippy cup battles – I sometimes just need to stop and remind myself that it’s all hard.

Life is hard…until it gets harder, and then that feels hard.

One kid seems hard until you have two. Two seem hard until you have four.

Autism is hard. Down syndrome is hard. Cerebral palsy is hard. Ichthyosis is hard.

Having a newborn is hard. But having an independent toddler is hard too. The junior high years are hard, and so are the high school years. It’s all hard.

And yet we rise to every new level of hard, because that’s what we do as loving parents. We are willing to take on whatever kind of hard is thrown at us. Love makes us willing.

Our challenges don’t diminish other people’s challenges. And maybe instead of comparing our challenges, we can use it as a point to connect…to say to each other “this is hard, and you’re doing a great job.”

I may be doing “more” on a daily basis when it comes to caring for the health of my daughter, and there may be some things that our family has to experience or do differently because of this skin disorder… but I firmly believe that you would do the same thing if it was your child. Our universal superpower as parents is love, and we’re all just doing our best.cIMG_2065

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