"Listen to the mustn'ts, child. Listen to the don'ts. Listen to the shouldn'ts, the impossibles, the won'ts. Listen to the never haves, then listen close to me... Anything can happen, child. Anything can be." - Shel Silverstein

Saturday, September 19, 2009

When Will She...?

The content of this blog is usually pretty upbeat. "Fluff" if you will. I rarely delve into the deeper concepts that I encounter in this life. Every now and then, however, I do find the need to go deeper, to let you in on what is on my mind during this daily grind I call my life. This is going to be one of those posts.

The other day I was craving a frosty, healthier (although not healthy by any means, just healthier) treat than what I normally have here at the house. I decided to stop by a certain favorite frozen fruit juice place of mine, whose name I won't mention but rhymes with Mamba Moose, to pick up a delicious frozen fruit beverage. I have been to this place several times in the past and observed how they make their tasty icy concoctions. I have noticed that once they pour your smoothie, there is still quite a bit left over in the blender that will not fit into your cup. I have seen them just put the blender pitcher in the sink, thus wasting whatever amount was left that could have gone into another's cup. I have thought about how wasteful that is. How many who are without means to have a meal could benefit from this small amount leftover, but that is another post.

This particular day, I carried Marissa into the store on my hip, too lazy to put her shoes on so she could walk the 50 feet from the car to the store and back (she won't keep her shoes on in the car). She was being her usual cute self, flirting with the employees as we sat and waited for my drink to be made. Jeremy and I have done this kind of thing a hundred times in the last two and a half years, bringing Marissa in to an establishment that serves food and drink, knowing that we would not be ordering anything for her because she does not "eat" anything. Before she turned one, and even about six months after, it never seemed to be an issue with the employees of whatever restaurant we patronized. They just assumed she was still on a liquid diet and would not need a menu. But, for the last year, every time we go out to eat, we get the question "can we bring you a kid's menu?" or "what can we get her to drink?". Therein lies the problem.

We normally politely decline and leave it at that. I try not to let it sting but it always does, a little. My kid doesn't eat. My kid gags on any particle of food bigger than a snowflake. My kid does not have the oral motor coordination to take food into her mouth, chew it and swallow it. Heck, we don't even think it is safe for my kid to eat by mouth because she may aspirate it. My kid gets her nutrition and sustenance through a tube surgically placed in her stomach.

Most of the time, I just let these thoughts slide because I don't have time to be bothered by them. I am trying to live life as normally as possible, trying to give Marissa as normal a life as possible, whatever normal means. I want her to experience as much as possible while feeling normal, just like everyone else. This is one of the reasons we give her tastes of things we eat, give her a chip to lick, or a taste of the sauce that is on our pasta, so she feels like she is eating like everyone else around her. So she doesn't feel different.

Back to the story of the frozen juice place... as the young lady was finishing my drink, she looked up at me and asked me if I wanted the rest of what was left in the blender in a kid's cup. I thought about it for a moment. Why would I? My kid won't eat it. I shouldn't. But it will just go to waste, right? This young lady didn't know any different and she didn't need to know. So, after a moment's hesitation, I said "sure".

As I drove home, I felt pangs of guilt come to the surface. Here was a kid's cup of a frosty delicious fruity drink meant for Marissa and I was going to be the one consuming it. Even though she wouldn't know the difference, I still felt like I was taking from her, like I was taking what was rightfully hers. Don't get me wrong, I didn't let it go to waste, but I didn't feel good drinking it either.

In that moment, that kid's cup of frozen juice represented everything that my daughter can't do or doesn't know how to do. It represented that she can't eat. It represented that does not know what a chicken nugget is or a slice of pizza, or a cheeseburger or french fries. It represented that she can't protest eating her veggies because she doesn't know what veggies are. It represented that she is not normal, no matter how normal we try to make her life feel.

I wish I knew how to make Marissa magically whole again. I feel bad for the things she does not know that kids her age do. But then I look at her, content in her surroundings, content in her home, content in herself. And I smile. It will all work out.

In time.

Not my time. Not Jeremy's time. Not Marissa's time.

God's time.


Michelle said...

Wow. Hard to know what to say. I work with patients all the time who don't eat. But they are adults and have had the experience of tasting food and refusing to eat their veggies.

It's hard to imagine what she thinks when she goes out to eat with you and sees people put things in their mouth. But mabye she doesn't know she is missing out.

I remember her second birthday when she had trouble even touching her cake. You see pictures of kids smiling ear from ear covered in cake and loving it but not Rissa.

What will life be like when she goes to school and every other child gets white bread sandwiches and she has to get fed through a feeding tube? Will she think nothing of it, or will she come home crying because she can't have the pizza at the pizza party?

It's all in God's hands. She does seem content in her way of life and I'm not sure she knows there are things about her that are differnt. She is a blessing to everyone who has the pleasure to know her.

WOW I guess I did find something to say here.

Just know that God is in control and he knows what Marissa's future holds.

I love you and I wish I could make it all better for you.

ANewKindOfPerfect said...

Feeding issues are truly the hardest for me deal with most of the time! Like you, it's getting harder now that my Peanut is older. Waitresses always ask what she'll have to drink, or look at us funny when we say she doesn't eat.

I would have taken the delicious extra Mamba Moose too. Yum. ;)

Nana and PaPa said...

Oh Alicia....the pangs of wanting everything to be normal....now. How tough it is right now, even though Marissa seems to be quite content with what she can and can't do because she really hasn't experienced what she is missing. And I think (you know me...the eternal optimist) in time and most likely before she goes to school, she will learn how to allow tastes, textures, hot and cold items in her mouth, and she'll learn to chew and swallow just like the rest of us. Patience and time....God's time. Ya sometimes want to rush God's time along a little faster...right?? lol Marissa has truly touched our lives in such a special way and she will continue to do so...no matter what she does or doesn't do. Love you guys....
Nana & PaPa

Colleen said...

I love your post. How do you explain your child's medical history to a lady at the juice bar? I also wish the little man could eat by mouth, but because he aspirates so much, we can only do flavor. Sometimes even flavor makes me nervous. It sounds like Marissa has come such a long way in many areas and maybe in God's timing she will surprise us all.

DevonLeah said...

oh the tears I have right now. From the first paragraph to the last, I kind of know what you are feeling. ALthough I do not know how camden will progress, him being only 8 mths, I do see "signs" that worry me. Like you, I try not to dwell, but man when it hits you....
I was blogging earlier about eating issues, not by mouth but him not tolerating breast milk from a gtube. I have to constantly try to find things to be thankful for or I start to get anxious again. But it is hard to sometimes. Just hard..
Marissa is precious and I cant wait to see a picture of her sippy her fruit drink one day.

Hope said...

I find myself speechless at these posts, because they make Ava's problems seem so minor. I wish I had magical words to make you feel better or solve these problems. I don't have any. Ava has this issue on a much smaller scale.

You're right, Marissa doesn't care about that stuff. But, she will learn this in her own time. In God's time.

In the meantime, think about the amazing gift that Marissa truly is. God picked you for a wonderful reason. Do you really want normal when you could have the miracle you have now? I don't think so;)

The VW's said...

I kept nodding throughout your post. This is such an emotional thing to have to deal with! No one can truly understand, unless they have a child walking in the same shoes. Moms have such a strong desire to FEED their children and it is so heart-wrenching when we can't!

I'm so sorry that you are feeling the pain of this dilema! I wish that I could take it from you, but know that I understand.

I always feel like such a rotten mother when we take Gavin out to eat with us. I feel like everyone is wondering, "Why do they just make him sit in his stroller and not eat anything?" (I just want to say to everyone that stares, "He can't eat!, He can't sit up!, I'm not ignoring him!.....etc.) I feel so guilty for eating when he can't! (This doesn't stop me of course, although it would be helpful for my diet!) Anyway, It sucks having to have these feelings.

Hang in there Alicia! God's timing is always better than our own, even when it hurts so much in the process!

Cute picture of Marissa! Love and Hugs!!!

Dana said...

Don't feel guilty. Drink it because you've survived thus far.

I am sorry that something you love became a hurtful reminder of what she cannot have.

I bet she was just so happy tobe out with mommy. She didn' care what or where you were going.

It's hard. I struggle with the birthday cake decision every year.

Sherry C said...

She's so cute I love her pictures .. the not eating and drinking is hard my daughter didn't from 2 until 4 years of age she only used her g-tube. She now eats but doesn't not know how to drink yet. I remember getting asked why i wasn't getting ice cream cone for my daughter when i bought one for her brothers. He asked she was in trouble? Can you image he was an older gentleman.

I just bought her first meal at mcdonalds this summer it was great fun . She only had a few fries but I loved it. Hopefully one day Marissa will get to eat she still so young. I remember thinking it would never happen and now it has.

John and Jenna Gensic said...

You're absolutely right. In God's time. I know exactly how you feel. John and I wonder the same things about Mikan.

Mikan is going through a phase now where he puts things to his mouth and then throws them. Like he pretends to eat, because he thinks that's what we do. People keep telling me that it is supposed to improve when the trach comes out, but as that deadline keeps getting pushed back, I have to wonder what sort of behavioral problems we'll be fighting...

Oh, don't feel bad about eating the extra drink, John always complains that the extra is thrown away and wishes he could have it in another cup.

Myssie said...

I have no words that will make you feel better, but know that I know what you feel too. I know what the phangs feel like when I refuse a kids menu, when Will spits out all of his food and the looks that he gets when he is trying to eat. Hang in there, Marissa will eat. She will refuse her veggies and want chocolate cake for supper. And you will love every, single, stinking minute of it!!