"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

Thursday, November 27, 2008

Thankful

As I sat in my daughter's room before she woke up this morning, I thought back to when Jeremy and I first learned of her existence.


I had just recovered (physically, not emotionally ) two months prior from a miscarriage. Even though we only knew for two weeks before losing the first baby, we felt we were already parents. We found out we were pregnant with Marissa on July 29, 2006. About two weeks later, the drama of having a high risk pregnancy began. I won't go into all the problems I experienced during my pregnancy right now, but we weren't sure if she would hang on long enough to be born, let alone be born healthy.


At the beginning of November we decided to have an amniocentesis. The doctors were telling us that if we found anything, we had the choice to terminate. In my mind, we weren't having this procedure to make a decision to terminate or not, my control freak brain just needed to know what was going on with my baby.


The day before Thanksgiving I got a phone call from the Maternal Fetal Medicine center at our hospital. They said the results came back negative for certain syndromes or problems, but they could only test for so many problems and there still were the existing issues. We knew she didn't have Down Syndrome or Spina Bifida, but other than that, we didn't know much more than before the test. The next day I sat at the Thanksgiving table with my husband and sister and thanked God for the little life inside me. I knew right then that even though it was going to be a long bumpy ride with many unknowns, Jeremy and I were up for it.


After Marissa was born we spent the first two months watching her fight for her life, coming close to losing that fight many times. There is no doubt in our minds that the tracheostomy and g-tube that were placed on May 9, 2007 saved her life. Even though this is not an easy life by any stretch of the imagination, Jeremy and I are so thankful that Marissa is here and is as healthy as she is. She has changed our lives immensely and we would be truly lost without her.


I am thankful for many other things too.


I am thankful to have a husband that puts up with me (which is an amazing, almost impossible feat at times!) He is my best friend and such a good husband, father and provider.


I am thankful for Jeremy's job. Even without the help of Medicaid (which still has not kicked in yet) Jeremy works hard enough that I don't have to work outside the home. I don't know what we'd do if this were not the case. Marissa can't just go to any regular daycare!


I am thankful for my sister Michelle who has saved my sanity more than a few times. Having her here in the same town is such a blessing, even before she became Marissa's babysitter. :)


I am thankful for the rest of my family. We have our moments, of course, but they are the world to me and I am thankful that the majority of them live in this state.


I am thankful that Jeremy's mom is healthy again and was able to come out and meet Marissa for the first time in May. As Marissa was fighting for her life, Jeremy's mom was also fighting for her life at the same time. We love you Grandma in Utah!


I am thankful for the way our families treat Marissa. They have embraced her and accept her the way she is. They don't look at her as different, just special.


I am thankful that with as large a family as I have (four parents and six kids between them), that we are all happy and relatively healthy. I do not, however, forget that we used to be a family of seven kids. We miss and love you Scooter!


I am thankful for friends, old and new and even friends online that I have never met. I would not be the same person without them.


I am thankful for my new "trach family". You know who you are. I am so blessed to be able to get together with such sweet spirits that "get us". I love you all.


With as long as this list is, there is still much more I am thankful for.


I hope and pray that you are able to see the blessings in your lives and can be thankful for them every day of the year.

Tuesday, November 25, 2008

Sleep Talking

This morning around 1:30 Marissa started getting restless. When she does this we try to see if she will settle herself down on her own. Sometimes she does, sometimes she does not. This morning she was not able to settle herself down so I asked Jeremy if he could get up and help her go back to sleep. He got up and a few minutes later came back to bed. Marissa lay quietly for a few more minutes then started up again, so I got up. We did this routine two more times a piece.

Finally around 2:30, exasperated, I asked the rhetorical question "what are we going to do?" Jeremy responds in his "I'm not awake voice" and we have the following conversation, if you want to call it that:
(Imagine your best groggy slur)

J: I'm thinging.

A: What?

J: I'm thinking.

Knowing full well that he was not thinking (or thinging), but sleeping instead, I decided to have a little fun with him. I allowed a moment or two to pass and then said:

A: You're not thinking!

J: Am too. I'm thinging abou fah shah, bud tha won work fer a baby.

A: What?

J: I'm thinging abou fah shah, bud tha won work fer a baby! (obviously perturbed at me for making him repeat himself)

A: What is fah shah?

J: (said almost consciously) File sharing, but that won't work for her! (Jeremy fixes people's computers for a living)

A: What are you talking about? (trying in vain to control my laughter)

J: Oh I don't know, I thought I could try file sharing.

A: Are you awake yet? (uncontrollably laughing)

J: I am now. I know, I know I'm not making sense. (now laughing too)

A: Poor guy, you're working in your sleep!

J: (laughing)

A: You know I'm going to have to blog about this tomorrow. (giggles)

J: Yeah, I know (giggles) Go ahead.

Marissa settled herself back to sleep and so did we.
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And yes folks, I conquered the pile. We now have a dining room table again.
In a couple of days I'll be able to show you our Thanksgiving Feast on our "new" table! I'm so excited!

Thursday, November 20, 2008

Drowning In The "Business" Side Of This Life

There are many aspects to my life as a mommy. Like every other parent, there of course is the typical role I play as a mommy to a toddler who is literally into EVERYTHING, especially the things she is not supposed to get into. Like every other parent, Jeremy and I are her teachers. We try our best to teach her things like patience, being gentle and kind to others, and right from wrong.


As a mommy to a toddler with special needs, there are the roles of nurse, therapist, and advocate for my child.


When I became a mommy, even a special needs mommy, I was prepared for all of these roles. I embraced them. That is not to say that I do not struggle or am not challenged in these roles even on my best day. But I saw them as part of my daily life and prepared myself for them.


The one role that I never thought about, the one I never prepared myself for, is that of businesswoman. I am talking about the role I have to play when dealing with the endless, hours long phone calls to and from insurance companies, early intervention, doctor's offices, medical equipment supply companies, Medicaid, Jeremy's Employer HR department. The countless hours I spend coordinating and scheduling therapies, surgeries, order and delivery of supplies and equipment. I'm not sure why I never thought about it. Who else did I think would be taking care of these things? It kind of snuck up on me, I guess.


And the paperwork, OH the paperwork!! Medical records, bills, receipts for co-pays and scripts, plans of care and IFSPs, paperwork for upcoming appointments and procedures, insurance EOBs (there are literally close to a thousand every year!), study reports and evaluations, forms to fill out. PHEW!! I think any parent of a special needs or medically complex child can relate to what I am saying.

When we first brought Marissa home and I was smacked in the face with this role, I would let the paperwork pile up on the table. I quickly realized that I needed to get organized, so I bought a file box. This method worked very well for a while.


Then it became too full and I knew I had to go through it and get rid of a bunch of stuff. Of course this requires just a little more than your average cleaning since all of the paperwork has our personal info on it. I can't just throw it away, I have to shred it!


Over the last couple of months, this role as businesswoman has completely overwhelmed me. I allowed the paperwork to just pile up on the table and the thought of tackling this job has been more than I can wrap my head around. But, now Thanksgiving is a week away. I refuse to eat our family dinner on t.v. trays in the living room! My hand is now forced and I must face the role of businesswoman/document shredder/paperwork sorter and filer head on. This is what I am going to face on Saturday:

It may not look like much because I could not convey the depth of the pile in the picture, but it is at least 4 inches high in some places! Please pray for me and my family (our sanity especially!) this weekend as I tackle this monumental task. I will show you "after" pictures if the pile does not swallow me first!

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On a completely different note, how about Awesome Hair Part II...

Note the incredibly adorable shoulder dimple!



Monday, November 17, 2008

Minivan Mom? Say It Ain't So!!

The lease on our Jetta is coming to an end and, with as much as I love that sporty little car, it just isn't equipped to run even a small family like ours around town. It is just too small. To that end, Jeremy has been trying to convince me to get a minivan for about the last six months. I have been strongly resisting because I am just not the minivan kind of gal. We had decided to get a Toyota Sienna because it is all-wheel drive, but I could never fully get used to the idea. It just looks too "minivan" for my taste.

Last weekend I was watching t.v. and a VW commercial came on. I'm sure you have probably seen the one... Brooke Shields talking about how all over the world people are having babies simply for German engineering and to be able to justify getting VW's new minivan. I finally paid attention to that ad and that new minivan looked sweet! It does not look like your typical minivan. So this weekend Jeremy and I went car shopping. We weren't going to pick one up, but just look at them and get an idea of what they were all about.

Well... we ended up signing a lease on a new VW Routan and brought it home on Saturday! Our sales person said we are the first to pick one up in Colorado Springs and possibly the first in Colorado! It is such a cool car with so many cool features. For safety, we are going to put snow tires on it.
Bye-bye sporty...
Hello soccer mom!


While mom and dad were out getting a new car, Marissa had a fun time hangin' out with Auntie Chelle and Uncle Nate.

Looks like they had a great time, huh?

Thursday, November 13, 2008

Pardon Me, Is There A Walker In The House?

Ready...


Set...



GO!!!

video
By the way, she turns 20 months old today.  Yay Yay Yay!!

Wednesday, November 12, 2008

Important: Please Read

This is going to be a long post by way of a couple of other blogs.  Please stick with this to the end as there is a very important message to be shared.  

The material you will read in the following links has been written by two very special mommies.   I will not elaborate on what they have written.  They have done a much more adequate and eloquent job addressing these issues than I ever could. 

I have been reading the blog of a wonderful little boy named Alex for several months now.  I checked on him yesterday evening and was taken aback by what I read.  Please go to Alex's mommy Jessica's blog, A New Kind Of Normal  to read what she had to say.  Within her post is a link to another special mommy Tamara's blog.  Please go there by clicking on the gray text within the second paragraph of Jessica's post.  This is where the whole story started.  I know this is a lot of linking, but I would not ask you to do this if it weren't so important.   

We need to put a stop to the ignorance, intolerance and hatred that is thrown at people who are "different".  After all, that kind of hateful attitude toward those who were "different" is where the atrocities of the Holocaust came from.

Thank you.

 

Thursday, November 6, 2008

Saving the Best For Last

Lots of Pics and Vids to get through and if you all are patient, there is a big reward at the end.  Don't cheat and skip to the end first though!




Aren't sleeping babies the cutest things on earth??

She was starting to catch a cold on this day and I was able to take her trach mask and pulse-ox probe off without her waking up.  I thought for sure the pulse-ox probe coming off would wake her up because it is wrapped around her very ticklish toe!  She didn't want to wake up for anything.  Poor baby!

Today is the third day and fortunately her cold is still not very bad.  I attribute this to the fact that we are giving her Pulmicort nebulizers 2x a day.  Thanks Dr M!


video
Poor baby just wanted to keep sleeping and instead, she has to deal with her insane mommy!  Just look at her tired little eyes.  I am sure that if she could talk, she would say "It sure is a good thing none of my friends are here because I would be SOOOO embarrassed right now!!"

We call this one "Nurse Rissa"
video
She's seen us do it a billion times so why can't she do it herself, huh?

And finally, The One, The Only... The Incredible Walking Marissa!!

video
Isn't that great?!?  She has taken up to 8 steps between us, and we know she can do more.

We've known for about 2 1/2 months that she COULD walk, she has just CHOSEN not to!  When we have tried this before, most of the time she stands there for a second and then throws herself down with an exasperated yelp as if to say "I am not your little grind organ monkey!  I will not perform for you anytime you feel like it!".  She does this with the talking thing too.  I tell ya, this toddler attitude just might be the death of us.

So there you have it.  How many of you cheated and watched the walking video first?  Come on now, tell the truth.  Santa is watching!!

Wednesday, November 5, 2008

Blog Background Election Results

UPDATE:

THE CULPRIT
For those who were wondering who hijacked my vote and wrote Hillary's name on the ballot... I give you... my brother Brian!!! Mama's sweet baby boy. Look at that guilty face. BUSTED!!!!

The polls are closed and the people have spoken...

Old background - 2 votes


New background - 3 votes


Hillary Clinton - 3 votes




Unfortunately for Hillary, I didn't include her on my ballot and I think Marissa's blog might look a little strange with her as a background. ;)

So the people demand... The NEW background!!! (Sorry Mom and Michelle, you fought
valiantly, but alas, you still lost)

Take heart Hillary. As the saying goes, "It is an honor just to be nominated".



Tuesday, November 4, 2008

A Different Kind of Election

On this, the most important election day of our lifetime, I ask that you take a moment away from watching history unfold before your eyes and help me with another kind of vote.  Or, I will settle for responses tomorrow if you really can't tear yourselves away from the real election today.   :)    This is much more lighthearted than what is going on in our nation today and I hope you play along.


I am in a quandary at the moment.  I need help deciding what the look of this blog should be.  As you have probably noticed by now, I changed the background a couple of days ago.  

Now, I loved the old rainbow picture.  It was very beautiful but the one thing I did not like about it was that it made my pictures transparent.  Of course this problem could be solved by just clicking on the picture and it could be seen clearer and bigger. 

I like the new background because the pictures are clear but I also like the simplicity of it.

So, I need your help.  Please vote for either the rainbow background or the new background.  I will tally the votes and whichever one gets the most will be the permanent background.

Rock the Vote!!!

Thank you      :)

Saturday, November 1, 2008

Happy Halloween!

We had a great time getting together with friends last night and trick-or-treating. Here are a few pictures...

There were many great yard decorations but we thought this one was the coolest!


How precious is this?


Our good friend Brandi and her beautiful kids Grace and Tommy.   Ben... sorry, didn't mean to leave you out (husband to Brandi and Daddy to Grace and Tommy)... You were taking pictures too, so we never got you in the photo... O0ps!

The "Gang"

Jeremy was in costume too.
He was a Computer Geek, of course!!!