5 Questions Never to Ask a Tubie Parent

 Tubie parents hear a broad spectrum of commentary ranging from the well-meaning to the outrageous. On the spectrum of health issues that our kids face, disordered feeding may seem like the least of our concerns but it has a profound impact on the family. Celebrations, holidays, family meals are simply not the same. Think about it; How many kid's birthday parties have you been to, where the kid can't eat their own cake? My own family and friends are very supportive so if you're reading this and you've asked some or all of these things, it's ok. Your support means everything to us and we know that you are well intentioned. It's just that often times we feel a bit like a broken record, answering the same questions over and over again.

What not to ask a parent of a tubie:

1. "When are they going to get that stupid tube out?"

A. The answer, no matter who you are asking about, no matter how many times you ask, is and always will be when the child can take 100% of their nutritional and hydration needs by mouth. Frankly, for some kids, that day never comes.

2. "What does the doctor say?"

A. Doctors don't have a crystal ball so they can't forecast how long a child might need a feeding tube. The parent or the feeding therapist is likely to know more than the doctor anyway.

3. "What's wrong with him/her?"

A. Disordered feeding is an extremely complex medical problem. It takes a thorough and extensive evaluation process to answer that question and even then it can still be a bit of a mystery.

4. "Can't you just take it out?" (for temporary or NG patients) Or "stop using it?" (for permanent patients)

A. Why yes I can take it out but the real question is should I and the answer is no. Taking out or discontinuing the use of a feeding tube can cause an urgent or even emergent health crisis. Feeding disorders vary in severity so while some children may only need a little support others are completely reliant on their feeding tube.

5. "Is he/she hungry? Thirsty? Why don't you just try giving him/her (food/beverage)?"

A. Don't, just... don't.

Lastly, not so much Q and A but a bit of common sense.

• Don't blame or shame parents for their child's dependence on a feeding tube. A mother shared that people in her family implied that she was just being lazy, as if having a child on a feeding tube is less work. 

• Don't, unless solicited, give typical feeding supplies as a gift. Giving a sippy cup to a kid who aspirates every drop of water is just stupid. You might as well set your money on fire. 

• Also, it isn't necessary to mention or ask about the feeding tube every. single. time. Think about your own children. Maybe one has a crooked tooth or a funny birth mark. Would you want someone pointing it out to you? Or your child hearing someone point it out to you all the time? Of course not. 

What you can and totally should ask a parent of a tubie:

1. "How is (child's name) doing?" Or better yet "How are YOU doing?"

Most of our kiddos have multiple diagnoses which makes for a lot of doctor appointments, therapy visits, feeding regimes, medication schedules, etc. It can be exhausting, frustrating and disappointing.

2. "Is there anything I can do to help?" 

See above. You may not be able to drop a new tube or titrate the latest constipation medication, but you can offer a meal or just lend an ear. On those exhausting, frustrating days you could be the lifeline to a parent's sanity.

3. "How do I get bile out of my carpet or upholstery?"

Yeah, we can totally help you with that.

Conversations with Charlie

Charlie is just over two and half now and talks really well. Sometimes our conversations are circular and frustrating. Other times, I can't keep from laughing. Here are a couple gems:

"Mom, I'm going on an adventure."
"Ok,where are you going?"
"On an adventure."
"Oh"
"C'mon Mom, let's go"
"I can't go. I have to wash your diapers."
"I gotta go get gas."
"Well, ok but I think you should tell your Dad."



"Mom, why is Dad so cross with me?"
"Probably because you put your trains and all the dog food in the dog water and your not supposed to play in it."
"You clean it up, ok?"


"I wanna wear Thomas [underpants]"
"Ok, but if you wear them, you have to poop and pee in the potty."
"I don't want to use the potty"
"Then you can't wear underpants."
*whining* "But I want to wear Thomas"
"Then you have to use the potty."
"But I don't want to use the potty"

There's No Crying in Baseball

Charlie is two and half now and talks... a lot. Sometimes no one has the slightest idea what he's saying and other times he says stuff like this:

"Come on Dad, you're killing me."

"There's no crying in baseball."
Mumbles- "That's right, there's no crying in baseball."
"What's a baseball?"

While my husband was painting our kitchen cabinets and there was dust all over, I asked Charlie to take his 'beautiful, brown blanket' (yes, that really is what he calls it) back to his room so that it wouldn't get dirty. An argument ensued and he told me " You go lay down in your room, Mommy."

He also does stuff like this:

The other day Micha was giving him a bath. Charlie was laying on his back in the tub and started giggling. He was peeing straight up in the air.

She's Crafty

A quick plug for my sister's blog.

http://pinintended.blogspot.com

She's crafty like Martha Stewart but in a more likeable way.

The Wedding

I can't remember a time in my life when I thought about a big wedding with a big cake and a big dress. It's just not my style. In fact, at the point in our relationship that I knew Micha was the one for me, I was perfectly happy to live together forever, like Kurt Russell and Goldie Hawn. So when he asked me to marry him, I really had no idea what kind of wedding I might want. In fact, I've only been in one wedding and I hate going to them. Why on Earth would I torture the friends and family that I love, not to mention myself, with some over-done, over-priced affair? Then there is the waste. As a person who is trying to be more socially, environmentally and fiscally responsible, how can I justify spending thousands on a gown that will only be worn once and flowers that will wilt and die?

Am I spoiling the mood for you yet?

We decided the only sensible and sane thing to do was to elope. Well sort of. Not in that traditional sense where two young lovers run away to Vegas and, against the wishes of their parents, do something impulsive in the name of love. No, ours was a more premeditated elopement. We decided to go over Spring Break and found a planner, Aaron's Key West Weddings to take care of everything. Seriously, all I had to do was show up with my dress on. My sister graciously agreed to stay with the kids and the dogs while we were gone on our wedding/honeymoon. I went back and forth over whether or not to include the kids in the ceremony. While the event was significant for our family as a whole, I ultimately decided that Micha and I's wedding should be about Micha and I.

Plus, who takes their kids on their honeymoon?! Seriously...

Don't get me wrong; entrusting my big day to a total stranger was not without some panic inducing moments. I sweat the small stuff. I worried that the vows would be corny, the flowers would be carnations and the location would have gigantic plastic signs for snorkeling and scooter rentals in the background. I literally had nightmares about the airline losing or damaging my dress. I envisioned my hair looking big and ridiculous and my make-up rivaling Tammy Faye Baker's. In fact, everything was perfect and couldn't have been more relaxing or more wonderful.

Hair and Make-Up by Headlines Hair and Nails

We arrived in Fort Lauderdale late Tuesday night the dress in one piece and looking as pristine as the day I picked it up from alterations. Micha had rented a convertible so naturally we put the top down before we left the airport parking garage. We had no idea that it was raining. After we stopped to put the top down (we weren't the only one's pulled over) we made our way to the hotel. The next morning we set out for Key West, top down and as pale as the underside of a fish. We arrived in Key West as red as lobsters.


Micha also rented a scooter for the 5 days we'd be in Key West because he's a genius. Seriously, scooters and bicycles are the only reasonable way to get around the island. The streets are narrow and crowded and limited is an understatement when it comes to parking. The morning of the ceremony Aaron, our wedding guru, brought my bouquet by our cottage and drove us out to the spot where the ceremony would take place on Smathers Beach. He went through what the ceremony would be like, talked to us about our family and and shared a little local wisdom (We didn't pay parking on a public street the rest of the trip!). Then it was time for my hair and make-up and by the time I got back, I had enough time for a salad and glass of wine and then into my dress.

Just before the ceremony.

We arrived at the beach, met the photographer and took a few shots before getting started. At this point I was starving and ready for a beer which I mentioned to Aaron. A few more pictures and it was go time!

In the distance, some ominous looking clouds were blowing in. We finished the ceremony and the pictures just in time. As we left the sky opened up and it began to pour. There were two other weddings taking place on the beach at the time.

 

 

The vows Aaron chose for us were perfect. He talked about family and friendship.

 

Mr. & Mrs. Johnson

How do you plan a dream you never knew you had? You don't. Just let it happen. Relax. Smile and laugh.

Post-Holiday Hangover

There have been two times in my life that I can remember thinking about my life. Once, at the very end of my teens when I was pregnant with Mumbles and facing some very big decisions and now, at the beginning of my 30's with my life half lived. When I was at the end of my teens facing the beginning of my adult life and about to become responsible for another, I knew that I had to do some things differently. I couldn't skate by doing the minimum without goals or aspirations. I worked two, sometimes three jobs and went to school, missing out on time I wanted to spend with Mumbles', all the while thinking this would afford us more time together later. "Suck it up and plow through for now so that in a few years, I can get a regular 9 to 5 and make it up to her", I thought. More than 10 years later, I have a regular 9 to 5 except I have to leave at 7:15 to make the commute, to be there by 8 and then half an hour for lunch so I leave at 4:30 but the commute means I won't be home until 5 and then it takes half an hour to unwind because I literally hate every minute of it.


Now I know that some where out there, there's some nit-wit who read Eat Pray Love and is thinking to themselves, "Well if you don't like your life change it. If you hate your job, then quit." That is easier said than done since now I have student loans that have to be paid and a mortgage to make every month, not to mention the car payment, insurance and gas to drive back and forth to what I am convinced is God's way of punishing me for misbehaving from ages 15 to 18. All in search of the American Dream. Hadn't I wanted this? A house, a car, two kids and a fenced yard. I hated staying in apartments to be sure, but at least when I lived in them, I was home to live in them. Some days I go down to the basement, a room that was meant to be a place for us to relax and hang out as a family, and I don't recognize it. Some times I look at Mumbles and I don't recognize her. I still want to buy her Tinkerbell underwear but then I realize she's no longer a girls size, it makes me want to cry. "It could be worse. You could be living in a thatch hut and eating bugs while your friends and neighbors die of starvation or dysentery." True, that would be worse, but isn't there some place between spinning my wheels and starving? At least when I was 19 and thinking about my life, I had hope. Now, I feel so...stuck.


Don't think that I'm just sitting around feeling sorry for myself....I feel sorry for everyone! All of us who bought into the bigger, better, faster mentality that dominated the 80's only to have the reality of over-consuming come crashing down on our heads. And I really love my house and my family. In fact, I love them so much, I want more of them. I want to spend more time in my house with my family, not working to pay for things that do not make me happy. As for the things that I've already wasted my money on, I've decided if I don't love or need it, I'm not keeping it.

The End of Our Breastfeeding Journey

I didn't even realize it until it was over. I sat down to fold some laundry and realized Charlie hadn't nursed in a couple of days. The next time I offered, he looked at me like I was crazy. There was no discomfort from engorgement or tantrum tears; it was just over. Around his first birthday, I'd stopped pumping at work. Pumping not being my favorite thing and being nearly impossible at the insane job I was working. Charlie still nursed when we were together; at night and on the weekends. But as the nights went on, Charlie nursed shorter and shorter periods of time until eventually he just didn't nurse at all.

Like with many things, I have mixed feelings about it. On the one hand I am glad that, hormonally speaking, I am feeling normal again. I don't have to think about what I'm wearing and how easy or difficult it might be to nurse in. On the other hand, I miss the time bonding with Charlie. I miss getting to take a 'time-out' when family gatherings got too overwhelming or I'm just tired and want to rest.

When I was pregnant with Charlie, I decided that I was going to nurse him as long as possible, in order to give him the best possible start in life. My goal was to exclusively breastfeed for the first 6 months, which we very nearly met. Shortly before he was 6 months, we started giving him a bit of rice cereal to try keep him satisfied during the day when I wasn't able to pump enough to keep up with him. We marched on to 1 year, Charlie getting a few ounces of formula to supplement. Now at nearly 15 months, he eats what we eat and goes through about 1 gallon and a half of whole milk per week. Overall, I feel good about our journey together even though this part of it is over a little sooner than I would have wished.