Thursday, November 20, 2008


Posted on Thanksgiving Day...I did not have internet access.

How can I possibly describe the thing that I am the MOST thankful for today? There are so so many things. But, as I look at my little girl playing out in the yard with the wind gently blowing her beautiful auburn hair, as I listen to her laugh and make pig noises while reading a book with her Grandma, and as I watch my baby boys eyes follow his sissy around the room as she plays....adoring her every move. I feel my heart ready to explode from all of the love that I have inside of it. That little miracle would not be here today if a liver had not come in time. For that day, that moment, that life changing event...I will always be thankful.

For this I have to be thankful for....however, today is not only Thanksgiving.....

On this day 22 years ago a beautiful little girl was born. The first girl born in her family, she was her parents pride and joy. She grew into quite a remarkable young woman, someone that I would have been proud to have known. She aspired to be a nurse. She was in the middle of her junior year in high school, was loved by all...including her youth group that she was traveling with on a ski trip in Colorado on March 19, 2004. I never did meet this beautiful child, whose parents named Claire, but I feel like I know her very well. A part of her lives in my house and in my heart.

Claire was born 22 years ago on Thanksgiving day. I have no doubt that today is a day of memories for her parents and family. I am sure that it is a day of heartbreak along with Thanksgiving. I'm positive that they are extremely thankful for the 17 years that they had Claire on this Earth. However, I also believe their hearts are aching that they only had 17 years with her.

4 1/2 years ago Claire went to meet her Heavenly Father. Her family made the decision to donate her organs. They made the decision, in their time of extreme grief. The decision that would save my baby girls life.

My heart is filled with sadness today. Happy 22nd Birthday Claire..thank you does not seem fitting. I feel so blessed when I think of how your legacy lives on in my sweet Angel Emma.

The Other Shoe

It is always suspended in the air, isn't it? Precariously perched, waiting...just waiting for the opportune time to drop. When do I quit worrying about that stupid shoe? When does life come to the point that I don't worry anymore? I know...once a parent you never stop worrying. However, this is an unhealthy amount of worry. Although at times it does become less, when it does come back it just hits me like a ton of bricks and consumes my entire being.

The funeral plans...yes, I have planned Em's funeral time and time again. At one time it was a potential reality. Now...why do the thoughts come creaping back into my head? Why do I feel the need to go in and lay next to her every night just to hear her breathing? Rub her soft hair just to feel the warmth?

The fear of rejection....we are 4 1/2 years post transplant and she has never (knocking hard on wood) been in rejection. However, the fear never leaves my mind. The fear of losing this liver..the liver that has given her life....and us hope. The fear that if she does lose this liver that she will not be deamed adequate to receive another transplant.

The thoughts of something being wrong with Owen. Although I know that he is healthy and thriving. The fear still creeps in that something still could go wrong. Why does he continue to get conjested? Knowing that it must be that he is aspirating (I know that he is probably not...but the irrational side of me feels this way).

I have always been one to worry, but given the circumstances of the last 5 worry tends to consume my life at times. Sure, I put on the face to all who pass me by that all is well. But, as I walk tall with my head held high in the air, please watch for the occassional flinch, the odd ducking motion that I may make. It is that shoe that I see...just hanging there...suspended for only my eye to see.

Waiting...waiting....waiting. Oh please, dear shoe, go take a jog! Please leave me alone. I do not want to ever see or feel you drop again.

Wednesday, November 19, 2008

What, Where and Why?

The "parent/teacher" conference went great! I really think that teacher knows her stuff, and she is such a sweet and kind person (wink), and that parent....WOW! I've never seen a more motivated individual. She knows all of the latest techniques and I can tell that she knows EXACTLY what to do with her child. Yes, I don't think that she ever has a problem controlling her child in any way, shape, or form (not only a wink....but body is going into full twitchy motion here folks).

No, seriously our conference really did go well. Em's special ed teacher joined us in our living room at 7:30 PM tonight...after Emma had gone to bed. We all talked about the amazing progress that Emma has made. We also talked about how much her glasses have helped her, and how much it has hindered her to have broken them (UGH!) and not to have had them the last week!!! It's like she could suddenly see the world....then it's taken away again. Yes, I am planning to get her a 2nd pair, but we need to make sure this is the correct RX before we get another pair. WHEW!! Enough said about that! Em's doing GREAT!

Now, onto my husband. All that I have to say about that is that I love him DEARLY! However, I am coming back as a man in my next life simply so I can pick and chose the times that I get up in the night to help with child #1 or child #2. Grrrr! Why is it I only get a break when HE decides that he can help out? Why can't it be the other way around? I know......because I'm the momma. Good reason. It's just that today I am REALLY tired!

Oh, did I mention that BOTH of my kids have pink eye, my own eyes are starting to burn (I think maybe it's all in my head), AND Emma failed her hearing screening in BOTH ears. So, basically my baby girl can't see right now due to her broken glasses. What she can see is all goopy, and on top of that...she can't hear worth a darned right now either.

What is this world coming to??? CALGON!!! I hear you calling!!! TAKE ME AWAY!!!

Tuesday, November 18, 2008

To Worry or Not to Worry?

That is the question here. Emma's parent/teacher conference is tomorrow night. Ha! Ha! I am the parent AND the teacher. SO, do you think I should be more worried about meeting with that crazy mom or meeting with the slave driver teacher?? I'm feeling a little bit of a split personality disorder coming on:).

Monday, November 17, 2008

And the Pendulum Swings

The pedulum has swung back to my "normal" state. Whew! Thanks to all of you for your words of encouragement! I hate those dark days, but everyone has them right? Some days it is just harder than others. However, today is a good day. Today is a day that I can sit back and be thankful for all of the good. Today is the day that I know I have "a place". I have great friends, a "close circle of internet blogging buddies", and many others who care.

The thing is....I live in a really small and secluded town. There aren't a lot of places that I can turn to get the support that I sometimes need. Yes, I do have really good friends here, but's been 5 years, and sometimes I feel like they think I am just whining. NO, I am not whining, but I can see how they might perceive that I am???

One of my very best friends had a son that had a transplant around the same time as Em...except his was heart. His mom and I hit it off from the beginning. That was 4 years ago, and she is still one that I confide many of my insecurities too.

It's just a different path than any of us ever dreamed we would end up on, but does life really ever go the way that we planned?

So, today I am going to take a moment to be thankful for the little things. Like the top 3 things that made me laugh this weekend:

1) Owen has no desire to "crawl"...why would you need to crawl when you can practice your wrestling moves and still get places?
Oh, I thought I had downloaded the picture:(. I will soon, and you will see what I mean. Picture him laying on his back and pushing up into a bridge with his head and feet still on the ground...and moving around the house like that!!! TOO FUNNY!!

2) Walking into Emma using the toilet, "Like Daddy does" can use your imagination on that one:).

3) Emma following me around the house all weekend with various books saying, "What do the words say?". I would read the page, she's flip to the next page and start all over again, and again, and again! I am so glad that she loves books, and it is neat to see that she knows that the words say something. GO EMMA!!!

Saturday, November 15, 2008

Trying to find "my place"

It's a difficult journey to the land of special needs. There are many potholes and detours along the way. At times the fog is blinding, and other times it is a sweet respite from the everyday challenges. The fog allows you to pretend that life is just peachy...yep, nothing is out of the ordinary in THIS house. However, the fog always clears, and you are left wondering, "Now where in the heck was I headed again?".

At the beginning of this journey it was as if we were thrown head first down an enormous water slide with the water blowing full blast directly in our faces. My pregnancy was fairly uneventful. I suffered pre-eclampsia in the last month and gained WAY too much weight (72 pounds to be exact), but the rest was a breeze. I had to have a c-section due to my high blood pressure. We were admitted to the hospital the night before I would have surgery. The night we were admitted just happened to be our 3 year anniversary. We were so excited to extend our family.

Immediately after Emma was born we noticed all of her long black hair. As people filtered in to meet our precious bundle of joy many commented on "her beautiful olive skin tone". The doctors were commenting on her large thumbs and toes, but we wrote that off as being similar to her daddy's.

That is when it started. Everything about my child that I saw as beautiful began to get examined, photographed, and critiqued. I loved her hair, her sweet eyes that turned down just a bit on the corners, her beautiful little mouth. All of them were described to us as "dismorphic features". Add to that the extreme liver disease that she had that began to turn our precious girl into the color of a banana, and you could see one scared, angry, sad, confused mama who was searching for a new normal....a new group of people who just might understand...just might be able to say to me, "I've been through it too".

I found that exact group when I found an on-line liver support group. I still religiously visit that group. It has been my lifesaver in the liver disease department. For a long time I could hide my head partially in the fog and pretend that liver disease was all that was "wrong" with Em...THAT was the reason for her delays, right? She had 7 surgeries in the first 7 months of life including a liver transplant...she's obviously going to be delayed, right? However, the delays became more and more apparent.

We were told when we first saw the geneticist (the one and only time...story for another day) that Emma possibly had RTS, and it was similar to Downs Syndrome. So, when the delays became more apparent, I came to the realization that RTS was a part of our Emma. I came to accept that, but I so badly wanted to find a place where I "fit in" ...a group of parents that could tell me that they "had been there". I could find very little information about RTS, so I began to follow a few blogs of children with Down's Syndrome. I posted a two comments on two different blogs, telling them about my Emma. BOTH of them e-mailed me back and reprimanded me for comparing RTS and Down's Syndrome....another door slammed in my face...another place where I didn't belong.

Do I have my special place today? I have found more people that I can relate too, but I so badly want and need to find a place where I belong. Does that make me sound like a middle school girl who is insecure? I think that it might? But, it is truly the way that I feel.

Everyone's journey is different, but when you have a journey with a child with special needs it becomes particularly different. Every aspect of my life has changed. I am a better person for it, but a little piece of me just misses that commonality that I used to have with all of my friends. I am no longer one of the pack...I now stand alone...and alone is a very sad place sometimes.

Thursday, November 13, 2008


I honestly cannot put into words the magnitude of emotions felt today. There were extreme nerves, a few tears, excitement, and a Mama's heart that swelled with so much pride that I thought it might burst.

Today was Emma's first performance in a school program...and she was AMAZING!! Our school has an annual Thanksgiving feast where we invite the community to thank them for all they do for our school. We had a crowd of about 90 people coming, and the anticipation that I felt was unnerving. It's times like this that being her mom AND her teacher is difficult. I so badly want her to do a good job and act like the music teacher wants her to act when she's on know, to fit in the "mold". Well, yesterday Emma was not going to have anything to do with "the mold". She was going to do her own thing and that was that. So, this morning the music teacher said that she might only put Em in for the last song. While I could feel myself going through the motions of opening my mouth and saying the words, "That's OK"....I was SO not OK with that. Emma had been practicing all of the program with the rest of the school for WEEKS. She was prepared to do the WHOLE program. So, when rehearsal came this morning, and our music teacher lined all the children up and did not say my Emma's name....I could feel the air deflating from my lungs. The familiar feeling came back where I feel like I am being shoved underwater, unable to breath, and there is no one that can save me. Our counselor happened to be there, and she said, "Surely she just missed Emma...isn't she supposed to be up there?". I simply said, "She's going to join on the last song". Then, I made a bee-line out the door, past many parents that were filing in to help set up the feast, up the very long staircase, down the excruciatingly long hall, and into the peace of my classroom, where FINALLY the tears were able to escape and course down my cheeks. All while the questions started to come, "Why God Why??? Why her?? When is this going to get easier? I CAN'T handle this". Then, the words to myself, "You're going to be OK, just breath, she's a survivor, you're a survivor, help her get through this". Then, they were gone. The tears dried up, and I was ready to go on.

When Em's aide tried to get her to sit out for the first part of the program she got VERY upset and cried and cried and cried. So, I talked to our music teacher and asked her to have Emma join the entire program. I said that her aide could pull her out if she needed to. She agreed and said that she had only made the suggestion to have her do only the last song because she thought it would be what I wanted. SO, it all worked out.

The emotions that I felt when I saw my big girl on that stage are ones that I cannot describe. SHE.IS.ALIVE!! Thank God for that! The odds have been against her time and time again...and she is a survivor. No one can take that away from her. She may do things in her own way, but her way is BEAUTIFUL! The joy that shown on her face today, the day that she got to join her peers on HER stage, it was undescribable!

Here is a picture of my princess. It doesn't do justice to the event, but picture in your mind the mom sitting in the audience that was running the video camera and simultaneously taking pictures...(now THAT'S what I call talent) with thoughts running through her head about what could have been...and instead what IS today!

getting ready for the program

My little star


Monday, November 10, 2008

Not the "P" word!!!

We took another trip to the doctor today. Owen had a fever of 103.8 that wouldn't break with Motrin or Tylenol or 24 hours of antibiotics. That's when I heard that nasy P word...PNEUMONIA! I won't even tell you all of the directions that my mind has wandered. I am quite certain that it has replayed the episode where Em had "pneumonia episodes" for an entire year...only to end up in ICU as I walked into her room to see her oxygen monitor drop to a lovely 32!!! Yes, the rational part of me says that this is Owen not Emma, and it's not going to go there. After all...she was aspirating...he is not, right? He's not, right? UGH!! My mind needs to go to sleep. I think that my mind cannot think very clearly because of lack of sleep.

So, to help my mind to feel better (that's what a momma has to do, right) I have decided to attempt to eat my body weight in carbs. Yes, last nights snack consisted of 3 Pizza Hut Breadsticks (MMMM...that was my #1 craving when I was pregnant with Owen), a big plate of pasta with butter and cheese and a Coke. Tonight, I am having some rice, some nachos, and a Coke. Yup, I am feeling much much better!

Sunday, November 09, 2008

Stranger Danger, Getting Old and SICK!

Phew! Such a list of topics for one day! Let's just say that it was an adventurous day (and last night) at our house.

Last night we were able to go to a movie....without our children! Grandma came over, and it seemed like it was going to be the perfect outing...until the realization came to me that Owen has not been watched by anyone (other than his daycare) since he was a month old...and even then it was only for about an hour. Grandma came over early and ate dinner with us, she held Owen, all seemed OK in the world...until we started putting on our coats, grabbing car keys, etc. THEN, Owen turned on the waterworks and managed to take my heart and practically pull it right out of my body. Grandma was holding him, but his eyes were following me all around the room while he cried, cried, coughed coughed, cried, cried..well, you get the point. I thought, OK this is a "good" think...stranger danger is a typical milestone that kids are supposed to meet, right? SO, guess what...he was just playing me!!! Grandma made a bottle right after we left, and he was just fine. I think he was simply worried that the chow wagon was leaving, and how in the heck was he going to get fed?

Today I woke up to my 2 little seals barking nicely in chorus. Yes, both of my children have been barking like seals for the past 3 weeks. I have not taken either in because they both have been eating, drinking, no fevers, and just acting like their cute little adorable selves. Here's the funny part....I am what is called a "medical mom". Not a title that I ever wanted, but it was so kindly bestowed upon me when Emma was born. I know the signs to look for on her for low oxygen, signs of allergy, signs of rejection, the good the bad and the ugly of jaundice, what "failure to thrive" means, any blood tests that have to do with the liver or anything surrounding it:), etc. etc.

Here's the funny....when it comes to Owen...I. AM. CLUELESS!!! How do you know when a "healthy" kid is "sick"? Well, last night he had a fever of 100.2, and the cough sounds "different". So, I took him in. Woohoo! I played the right card and knew when to take him in...he has a sinus infection. The poor little guy is feeling like crap! It is very difficult to redirect my mind from the "medical mom" world to the "mom of a healthy kid" world. I just fight so hard to not overreact.

Anyway, that made me feel a little better as far as the stranger danger from the night before when I left him with Grandma too. I think that a part of his whininess was his not feeling well.

Now, for the not so funny part of the day (Has the rest of my day been funny? Not really, but this is REALLY NOT FUNNY!!). I went to Wal-mart to get Owen's RX filled, and while I'm walking around the store an older gentleman came up to me and said, "What's this that you have? Is it a boy or a girl?". I said, "He's a boy". He said, "Is he yours?". I said, "Yes". He asked me, "How old were you when you had him? (At this point I'm thinking this man is being very kind and thinking that I'm too young to have children). I said, "I was 35 when I had him". He said, "Do you know how old you will be when you're done with him?.....(PAUSE) You'll be OLD! You will be like 57 years old!". I simply turned to him and said, "Even then you are not are never done parenting. Once a parent always a parent"....and I walked away.

So, the rest of the day has been a little blah. I've been feeling like an old mom with 2 barking seals for children. OOOHHHH...I think I hear Calgon calling my name!

Saturday, November 08, 2008

My 5 year old teenager...OY!

Where did my sweet little baby girl go? Ok, she is still very very sweet, but lately I find myself in awe of all of the things that she is saying. Maybe I am just finding myself in awe that she is talking at all....which is AMAZING!! She is so sassy, and I don't help things when I chuckle when she says something that is sassy. She is also very particular about exactly how things need to be done.

When we got in the car this morning she said, "Chewing gum please mommy". I said, "You think you NEED chewing gum". "YES!" she replies with exclamation. So, I gave her some gum. Immediately she tells me, "I NEED Hannah Montana". I said, "You NEED Hannah Montana?". She said, "Yeah" (and gave me the UH...HELLO MOM...where have you been), and...because I paused for a moment, she added her own words for me. She said, "OK...FINE...Emma!". Where does she get this stuff? It's just so darned cute though. I can't help but laugh.

Oh, another thing. She had a REALLY rough night of coughing and barking like a small seal that is being harpooned. She was up from 11-3! Yikes, good thing that I didn't have to work today:). So, when she woke up at 6!!! Yes, 6!!! No sleeping in for this little girl! I asked her, "Does your throat hurt today?". She paused, shook her head, and said, "NNNOOOOPPPEEE!". I wish that I could explain it the way that she says it. It is hilarious. Then, I asked if she was tired and she said, "NO WAY JOSE!!". HA!!

She's growing up so fast, and she is just so funny right now! I love listening to her. The other day she was on my cell phone! (just playing... HMMMM??? She probably shouldn't play with that (note to self)). I asked her a question, and she said, "Be quiet mommy! I'm on the phone!". It's so funny to hear things that I have probably said to her...repeated back to me. It makes me think...maybe I should ask in a nicer way??

If she's only 5 and acting like this...will she "be" the same age as me soon??? CRAZY thought:).

*Notice the new music on the blog?? The song "Unwritten" by Natasha Bedingfield has always made me think of Miss Em...she is Unwritten....but the pens in her hand...she will write the rest for HER time:). I also had to add a little Hannah Montana for my mini diva...I actually LOVE this song, and it makes me think of her too...the last is a song I just love that has helped me through some rough times. Enjoy!

Friday, November 07, 2008


I have a tendency to overreact when it comes to my children. Yes, I am one of "those" moms that I never thought I would be, but mess with my kids.....and the mama bear in me comes right out of my cave ready to attack. So, here is the situation that took place today, and I need some help deciphering through it to see if I am overreacting.

A little background:

Sometimes I just want to be able to be a normal parent. I have been very proud that Emma has been potty trained (for the most part...excluding nights) since she was 3 years old. Well, anytime that she gets sick, she gets massive diarrea that comes so quickly that she doesn't have time to tell you.

Emma's special ed teacher at school is one of my very best friends. She was in Denver with us through all of Emma's transplant and 2 other surgeries.

So, here's the deal:
Today, Emma sped. teacher was gone. It was a 1/2 day, so after Emma got out of school she went to daycare (where her sped. teacher happened to be working is owned by her daughter). Right before Em got on the bus she had a little accident, so I put a pull up on her just to be on the safe side.

I went to pick Emma up and her sped teacher had all of the 3 and 4 year olds...and emma in a circle singing a song. She stops and says, "Oh, we need to stop...Emma's mom is here". Then, she turns to me and says, "She had a REALLY poopy diaper...I keep telling her that she needs to do this when her mom's around".

Here's my reaction:
I didn't do a thing at the time...I might have been a little more standoffish, but didn't say anything about it. However, my heart is breaking. I realize that Emma has special needs. I realize that she doesn't care that that was said about her in front of her peers. However, I CARE! I would never tell one of my student's parents something like that in front of all of the other kids. Granted, my other students are typical kids and they would be mortified if their peers knew that they had had an accident, but still.....I'm just not OK with that news being announced in front of everyone.

It seriously made me go from having a really great day to just feeling like shit!! How can something like that make me feel so small and insignificant?

Am I overreacting? Please tell me the truth. If I just need to buck up and put on my big girl panties just let me know:).

Thursday, November 06, 2008

Bloggers please share

I'm interested to know....everyone has a story. Life is a big story with many many chapters. Tell me about the most difficult part of your story.

For me, it's been acceptance. I was talking to a fellow mom (2 completely typical kids) recently, and she was asking about Em's journey. I've only known her for a short time. While I was telling her all of the medical mumbo jumbo it hit me....that was definitely not the most difficult part of the journey for me. All of our medical stuff happened so fast and furiously. I mean Em had 7 surgeries in the first 7 months of her life including a liver transplant. Through it all I remember praying to God, "Please let her be normal if she survives this". 5 years later it still makes my heart shatter thinking of those very dark days. We made it through was pretty rocky but we made it. Did we make it to normal??? No, no we did not. Really, when I finally allowed myself to realize that we weren't going to find "normal"... that is when I hit rock bottom....and it has taken me a long long time to dig out of that hole. I think some days only my eyes are sticking out of the hole...taking a brief peak. I know that we are going to make it in this world. It's very different than I had ever imagines, but life is good.

Icky Icky Icky

The ICK has hit our house! Emma's been home from school since Tuesday with an "explosive backside" (I'll let you figure it out without more explicit details). Well, yesterday afternoon it had stopped, so I thought for sure today she would be able to return to school. Then, the clock struck 12:45 am.....and the puking began! There's nothing quite like waking up to that sound...knowing that your child is in their bedroom and there is NO WAY that they made it to the toilet. As you walk into their room you await the sight...anticipating the extent of the damage.

The ironic thing about this is it used to be a nightly ordeal in our house (if not 2-3 times). Emma used to have horrible reflux, and she would vomit 3-4 times a day and at least one time during the night. I was a pro at sleep walking down the stairs to throw her bedding into the washing machine and remaking her little bed so she could go back to sleep. It's amazing how far she has come in that area. You'd think it would be like riding a bike for me. You'd think that I could just go in there and clean it up while half asleep and return to bed. WRONG!! Why? You ask....well, this was ACTUAL VOMIT!!! AND, Emma got out of her bed to try to come and get me, so the puke was EVERYWHERE!! Back in the "good old days" (that is humor at its best), it would just be in her bed and it truly was just undigested milk (her digestive system was very slow), so it had very little odor so it was fairly simple to clean.

I look forward to this icky bug passing through our house. I really hope that the rest of us do not get it. I also hope that tonight is a peaceful night of sleep.

Sunday, November 02, 2008

We're off to see the Wizard

Happy Late Halloween to all! Yes, I am a little late....and my last post (Owen's 6 month birthday) was a little late too, but hey...better late than never, right? So, we had a GREAT time trick or treating...then, we went to a Halloween carnival. Emma was so sugared up by the end of the night..whew!!

Here are some pictures of our Dorothy and Toto! Enjoy!

Saturday, November 01, 2008

Happy 6 month Birthday Big Boy!!!

Dear Owen,
I cannot believe that 6 months have passed since I first saw your beautiful face. The moment I heard your cry I felt the fierce protectiveness that I have only experienced one other time in my life.

I have enjoyed the past 6 months so much. You have the most sweet spirit. When you smile your entire face lights up. You have so much to tell the world around you, and you really enjoy being around others. You think your sister is the funniest person on the planet, and you watch every move that she makes (with the intent on copying her very soon I am sure).

I love you more today even than I did yesterday....and I will love you even more tomorrow. I am the luckiest Mama in the world to be able to call you and your sister my children.