Wordless Wednesday

Conversations with Marissa

I am out of here for the weekend. I am so excited to be going to Denver for Women of Faith. I can't wait to hang out with some good ol' friends, meet some new ones and spend time with my sisters and mom. Approximately 15,000 women packing the Pepsi Center for two days, singing, laughing, crying, and worshiping God. Estrogen overload ~ Woo Hoo!!

I thought I would leave you with a video of me trying to get Marissa to talk with me. She talks all the time, she just won't cooperate when I have the camera on. Just the other night, Jeremy and I were trying to have a serious discussion regarding his job and guess who thought she should get right in the middle of it. She was so cute, standing at her Daddy's feet, looking up at him and yelling at the top of her little lungs, "HAAWWOOOHH, HAAWWOOHH, HAAWWOOHH!!!", which of course means "hello". You know how, when we want to project our voice, we cup our hands around our mouth and yell loudly? And, how kids see us do that and try to mimic but don't quite get it, so they actually end up covering their mouths and yelling? Well, that's what she was doing and, even though we were really trying to talk seriously, Jeremy and I couldn't help interrupting our conversation so we could laugh really hard at our daughter who was trying so desperately to get our attention.

If you would have told me two years ago that I would need to be teaching my daughter about inside and outside voice, I would have thought you were crazy!!

Enjoy...

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I sure do love this girl! : )

Almost Wordless Wednesday

Our Blood Runs Orange and Blue

Fan Fair 2006 ~ Pre-Rissa

Dwayne Carswell after recovering from his car accident

"Dude, it's John Lynch!!!"

"Dude, John Lynch is shaking Jeremy's hand!"

"And he signed our ball, how cool is that?"

Fast forward 3 years... our Little Broncos Fan

She really does watch the game with us (for a few minutes at least), especially when Daddy gets a little vocal. He likes to say "BAM!!" when he sees a good hit and she will say it right along with him!

OK, so it wasn't really wordless at all, but I'm keeping the title anyway. My blog, my rules! ; p

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.

Genetics Update

Sorry it has taken me a while to update about our trip to the geneticist. I have been trying to do a little research on what we talked about with the doctor on Wednesday before I blogged about it.

First, the doctor was thrilled about how well Marissa is developing and her level of intelligence and cognitive awareness. She said from what she can tell, Marissa is right on track and is a normally developing 2 1/2 year old, mentally speaking. Pretty much what we already knew, but it is always nice to hear it from someone who gets paid to have an opinion.

When we saw the geneticist over a year ago, she had two prevailing theories. First wasRubinstein Taybi Syndrome. The second was Hallermann Streiff Syndrome. Neither of these diagnoses really fit Marissa well. She had many characteristics of RTS and some of HSS, but some of the major components of each were just not there. So we left her office with no diagnosis. She told us she wanted to follow Marissa in the future to see how she developed.

Fast forward to last Wednesday. When we saw the doctor, we decided RTS had been taken off the table entirely. On a side note, let me just say that I am so blessed to have heard the possibility of Marissa having RTS over a year ago because I have developed relationships with some really great women online whose kiddos have RTS. God really works wonders in our lives, doesn't he?

Now that we have determined Marissa does not have RTS, the only other guess the doctor has is HSS. She still did not feel strongly enough about it to clinically diagnose her, which is the only way to diagnose this syndrome, by the way. There is no blood test for it. She showed us pictures in a book, which were pretty extreme and really looked nothing like Marissa at all. She said with every syndrome, of course, there is a spectrum and Marissa would be on the high end of the spectrum. The syndrome is characterized by small stature (something we thought was a problem for Marissa last year, but she has caught up with her weight and height since then because it was a diet and vomiting thing rather than a genetic thing) craniofacial anomalies (which Marissa has to a small degree) and skeletal anomalies and problems (which Marissa does not have). The doctor agreed with Jeremy and me that we think Marissa's facial features are looking less syndromey (for lack of a better word) than they did last year.

In the research I have done online, I have found some similarities between Marissa and people who have been diagnosed with HSS. But most of the prevailing characteristics don't fit well enough to cause me to think she has it. Bottom line is this: Her geneticist thinks she might have HSS but doesn't feel strongly enough about it to diagnose her with it. Jeremy and I just don't think she has HSS. So many things do not fit and so many of the issues Marissa does have are not explained by this diagnosis. My mommy gut just says HSS is not it.

So, we did not get a diagnosis this time either. A diagnosis would not have changed how we medically treat Marissa and it would certainly not change how we treat her as a person. We may never know why Marissa has the issues she has. And, as I said in this post, I am OK with that!

And now, because I felt like ending this post on a cute Rissa Roo note, I present...

Big Girl in a Little Coat

Labor Day Weekend

I hope you all are having a great Labor Day weekend! We are having a great time. Our weekend has consisted of bubbles, balloons, bummers and blessings. I've compiled yet another montage! I think I create so many of these because I just like to tell stories through pictures and music. And I think I have too many pictures that I want to share with you all and I don't want you to have to scroll for hours to view them.

I hope you all are still enjoying the videos!

We decided to get up before the crack of dawn on Saturday morning to go to the Colorado Springs Balloon Classic to watch the balloons rise in the mass ascension. It was a very foggy and misty morning and, due to the weather, the balloons never took off. Bummer. But we did get to see them sitting on the ground inflated, which was pretty cool.

Since the event is a very popular one, we had trouble finding parking. We decided to park in the lot of a Mom & Pop liquor store, knowing that we wanted to leave before 9:00 am and thinking there was no way they would open before then. Turns out, they open at 8:00 am! We felt very bad once we got back to the van and one of the owners of the store (Pop) asked us why we would park in front of a business. He said he had already had some people towed who were blocking his delivery truck. We apologized profusely and Jeremy made amends by going in and purchasing a 6 pk of Coors. That made Mom & Pop happy and we left their store having made new friends!

Sunday evening, we decided to grab Auntie Chelle, Uncle Nate and some Jimmy John's delicious sammies and head back to the Balloon Classic to watch the balloon glow. At dusk, the balloons inflate, sit on the ground and fire off their burners, creating a beautiful glowing spectacle. As we were leaving the house, the rain started coming down in sheets. We were starting to feel defeated until we got to the other side of town and it had cleared up and stopped raining.

We got to the park and there was plenty of legal parking, so we headed to the field. We picked a great spot and ate our picnic dinner while we listened to a band play. We thought it was odd that the balloons were not laid out yet and it was after 7:00 pm. Jeremy took Marissa to run around the field and mingle with the people for a little while. Shortly after they left, a lady came on the loud speaker and said that due to the wet field, the balloon glow was cancelled!! Bummer!! So we watched the beautiful sunset over our gorgeous Colorado mountains instead.

So, for those keeping score:

1) Got up way too early to see a bunch of balloons rise into the morning sky all at once, only to be bummed out not being able to see any balloons rise into the air (Bummer #1). Did get to see the balloons inflated, sitting on the ground instead (Blessing #1).

2) Almost got the van towed (Bummer #2) but got beer instead (Blessing #2).

3) Really looked forward to watching the balloons light up but were bummed when it was too wet for them to do so (Bummer #3). Got to watch Marissa play and watched God's Sky and Mountain Glow instead (Blessing #3).

I'd say we ended up breaking even! ;)

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This morning, we took our time getting up and ready for the day. We just got back from taking Marissa to a park to run around and blow even more bubbles.

So there you have it. Our bummered and blessed Holiday weekend. Just trying to squeeze every last drop out of Summer!

Undiagnosed

We take Marissa to see her geneticist one week from today. She hasn't seen her since July 2008. I am hopeful she will not only be surprised at how far Marissa has come but that she will be utterly blown away. Marissa has developed so much in the last year. We left her office last year without a diagnosis and it kind of stung a bit. I have a feeling this year we will leave without a diagnosis again, but I am actually feeling good about it, if not hoping for it. Marissa has shown us that our theories of what diagnosis she might have just don't fit anymore.

For me, the geneticist used to be one of the more important doctors that Marissa saw. Up until about a year ago. I used to have a really hard time with not having a primary diagnosis. I wanted to know why I had such a difficult pregnancy. I wanted to know why I started bleeding and thought I was going to miscarry (again) around 8 weeks; why we had a two-vessel umbilical cord; why she had an enlarged ventricle in her brain discovered at 20 weeks; why her growth slowed significantly around 31 weeks and why she stopped growing altogether around 37 weeks. I wanted answers as to why she was the way she was after she was born. I wanted to know why she had the brain anomaly; the dysmorphic facial features; the airway issues; the heart problem; the GI problems; the kidney problems. I thought if we knew answers, we could know how to help her better.

I realized a while back that we don't necessarily have to know a primary diagnosis to help her. Her heart was fixed without a diagnosis. Her kidney issues were fixed without a diagnosis. Her airway issues will most likely be fixed without a diagnosis. She was recently discharged from physical therapy and will be discharged from occupational therapy next week. She is overcoming her physical disabilities and limitations. And, what she can't overcome, she has shown us she will adapt to and learn to work with.

At least for the time being, I am glad Marissa does not have a diagnosis.

Now, I don't want to offend any of my wonderful friends by what I am going to say next. Please, I mean no offense.

I think that along with some diagnoses might come a tendency to put labels and limits on people. Like, "If we can just squeeze her into this box right here, we will know what her future will hold. We will know how she will develop and grow because people with this diagnosis develop and grow a certain way. We will know how to treat her, not only medically, but as a person". This carries with it the potential to unwittingly clip her wings before she could show if she could fly. I may be wrong, but I have come to believe that diagnoses are for doctors, insurance companies and school officials, not necessarily for parents, family members, friends and schoolmates. Diagnoses shouldn't be for society in general but they do tend to be, unfortunately. Diagnoses allow people to treat someone in a certain way, but not necessarily how that person should be treated.

And in the bigger scheme of things in life, it doesn't really matter. I know Marissa is a child of God and He created her just the way she was supposed to be.

For you created my inmost being;

you knit me together in my mother's womb.

I praise you because I am fearfully and wonderfully made.

Psalm 139: 13-14

As a wise and kind preacher from my youth (who just happens to be my Dad) demonstrated for me with a sign hanging on his office wall,

"I know I'm somebody, 'cause God don't make no junk".

Too right.