It's going to be OK

Every now and then something happens in life that is a big AHA! 3 1/2 years ago I was living in a dark dark place. I have felt like I have missed out on so much with Emma. For everything that she has learned, and the personality she has acquired...there has always been a shadow still glooming over me. It's sad, I know. I have told myself over and over again that she is growing up so fast....I need to enjoy this time. Honestly, I have tried my hardest, but in the back corners of my mind I always have the fear of the unknown. The future honestly still scares the crap out of me. However, the last month or so I have been seeing sunshine every day and I know that it is going to be OK. Emma has already changed the world....and there is so much work left for her to do. She is amazing, and even if she never is able to fully verbally communicate (which I know that she will)...she IS going to be OK (and you know what...I am too!).

The last month I have enjoyed every single minute. I have just made myself realize that she is who she is, and I no longer think about the "what if's". That is my secret. Now, if you are reading this and you have a completely neuro-typical child it may perplex you as to why it has taken this crazy woman 3 1/2 years to finally embrace her beautiful little girl. Until you have walked in the shoes of another person it is difficult to judge the steps they have taken in their journey. My child is and always has been my world. I would do anything for her. I just feel like I am able to be a more complete mother to her now.....now that I have seen the light.

Here is just a glimpse into the wonder of my child....and one of the many reasons that I know she is going to be "OK" in this crazy world:

Today, as Em and I were driving to school in the snow on a very gray day. My little ray of sunshine in the backseat made me smile:). The song Beautiful by James Blunt was on the radio. Emma (who has limited speech) started calling "Mama mama mama". I looked at her in the rearview mirror and she said "Emma" and signed the word beautiful. As tears filled a proud mama's eyes I said, "Yes, you are sweetheart".

These are the moments that make it all worthwhile:). Thanks for letting me share my small victory....that meant the world to me:).

Wonderful Day!!

What an amazing day that we had yesterday! To see the joy on Miss Emma's face made every single step of this journey worthwhile. I feel fortunate enough to be able to celebrate my child's "birth" twice a year. I have to say that my favorite part of the day yesterday was when Emma had balloons delivered from our dear friend Becky. She just could NOT believe they were for HER!!! She proceeded to carry them with her anywhere that she went in the house. The singing balloon is still her favorite. She has learned how to make it bounce off of the ceiling to make it sing. Too cute!! I also enjoyed watching her order her cousins....er I mean PLAY with her big cousins:). The three boys (ages 10, 12, and 14) are so very good with her...even when she is commanding them to play exactly the way SHE wants them to play. Here are some pictures to show what a wonderful day that we had. Enjoy!

Emotional Exchange

I woke up this morning with a renewed sense of strength. Today is a day of hope and remembrance. Three years ago this morning I dropped my baby girl off with her babysitter. Three years ago today I had an impending sense of doom. There was blood in her diaper that morning. That along with her extremely golden skin, her orange eyes, the way she slept 20 hours a day...and the fact that she had been listed for a liver transplant for exactly 58 days were all indicators that my beautiful child was slowly fading away from me. Death was imminent if a liver was not found. I knew that morning that it needed to be found soon. As I waited for the babysitter at our normal stop I knew that "today would be the day". I remember having that thought in my head. However that thought was quickly overshadowed by the thought that today could also be the day that my baby would die. Grief, sorrow, and hope all wrapped into one feeling.

Two and a half hours after dropping Emma off with the babysitter the call came that would forever change our lives. The call that they had a liver for us. As the tears flowed down my face I said in a petrified voice, "I don't want her to die...I don't want her to die...I don't want her to die". I had been skiing with my class when the call came, and that walk down the mountain was the longest walk of my life. From that moment on I did not cry, but I had hope that this was what we needed. A sense of peace envoloped me, and I knew that everything was going to be OK.

I know for another family that their morning wakeup today was a different experience. Today is a day of remembrance for them also, but they no longer have the hope that their daughter will grow up and experience life. Three years ago today they were on vacation. I imagine that they woke up, went to breakfast, and knew that their daughter was healthy and having a wonderful time with her church youth group on her very first ski trip ever. She was in beautiful Colorado surrounded by beautiful snow, magical wonder, and marvelous trees. The trees that would ultimately be the cause of her untimely death. Her family woke up in Florida that morning knowing that Claire was in good hands. Hours after they woke up they also received a call that would forever change their lives. Their daughter had suffered a massive internal head injury upon hitting a tree while skiing. She was on life support, but it was not looking promising. I can only imagine her Mom walking to the car saying in a petrified voice, "I don't want her to die....I don't want her to die....I don't want her to die". Unfortunately Claire did die that day, and her parents will forever be in my heart and on my mind. A part of Claire lives on in Emma every single day.

I am so very thankful to Claire's family for making the choice to donate her organs. In their most profound time of grief they were able to make a decision to help 17 other people. They helped Claire to be a hero to so many that were in desperate need. My heart hurts for the feeling that her mother had when she woke up this morning. Today I will look at my beautiful girl and continue to be so thankful for every single day that I have with her. Life is the most precious gift that each of us is given. I need to remember to live each moment as if it is my last. I'm so grateful to still have Emma in my life. Thank you Angel Claire.

Blog world beware!

This blog is being tempermental! It tries to tell me that I have to switch to the "new and improved" blog, HOWEVER it will not ALLOW me to move to the new blog....ugh! Technology has never been my friend.

So, onto the trials and tribulations of my world. Em tested positive for influenza on Thursday (after I arm wrestled the pediatrician to swab her....OK really I was such a wimp...I actually left the office with the diagnosis of sinus infection...HEARD about it from my husband.....called back Friday morning and asked for her to be swabbed....I think the ped was really too SCARED to even think about arm wrestling ME)!!! She has actually done exceptionally well with "the flu". It is supposed to last 5-7 days of nastiness. We only had one BAD day.....now she is doing really really well with it:). I think that we'll take it.

The Biggest Loser weight loss competition continues at the little rural school where I teach. The staff started on Jan. 3rd. We each (all 8 of us) put $20 into "the pot". We have weighed in every week since. The competition ends on April 3rd. The Biggest Loser will be the one who has lost the biggest percentage of weight. So far....drum roll please....I am in the lead!!! I have lost 13 pounds. One more pound and I will be down to pre-pregnancy weight....whoo hoo!! Hopefully....just in time....to get pregnant again:).

Yes, we have been trying since June to have another child. It appears that Endometriosis has taken over my internal organs:(. I am just ready to see a specialist and find out what my options are. My husband and I neither one want Emma to be an only child....SO, I am optomistic that another child will be in our future....it may just take a little help and patience to help him/her enter this world. If you are reading this please keep your fingers, toes, etc. crossed for us:). I will see the doctor on Monday to see where we go from here.

Well, there is a mini-version of my life:). I am on Spring Break this week, so Em and I are going to be taking a road trip to see our good friend Becky. We are so excited!!! Tim does not have spring break at all because apparently....his district "values" education more than mine does LOL!!! I think that my district just values sanity:).

Where did she go?

Yesterday I caught a glimpse of myself....5 years ago. While I was shopping in a store, a girl walked past me. I turned to watch her bee-bop down the stairs...so carefree...so happy. She had on her down jacket, her wool hat, with her healthy skin glowing, and her beautiful freshly washed hair hanging down her back. The sound of her laughter echoing as she descended down the stairs...down to pick up her skiis and head out to the slopes for a day of cool, brisk wind on her face...not a care in the world.

Sadness encompassed me as I realized...that used to be me. Where did that girl go? She has been replaced by a shell of a woman who feels so empty inside. A woman who is in constant fear of the unknown...perpetually waiting for the other shoe to drop....and angry with the fates that this life has thrown her way. The conclusion was quickly made in my head that she is gone...never to return to this life. I will never again be able to simply live vicariously...without a care in the world. It makes my head throb and my heart hurt just thinking about it.

The time has come to find a new sense of freedom and happiness. I try to make the most of every day, but when I saw that girl today I realized in so many ways that I am just masking the feelings that lie beneath. I realize that the past few years have made me a more compassionate person in so many ways. Many parts of myself are enriched and improved. However, I long to not have the worry every single minute of every single day. The worry of Emma getting sick, the wonder of if and when she will talk, the sick feeling I get when I can sense other people judging my child...the child that DESERVES to be looked upon the most respect of anyone that I know.

The dark corners of my mind apparently need to remain that way. When a light shines in those corners it makes me think just a little too much about the whys, the wonders, and the what if's. Yesterday the light simply made me think about the where....where did she go????

Happy Valentine's Day

Happy Valentine's Day to all! I hope that everyone gets that extra hug today from a special someone. A special look that says....you are all that matters to me...that look that makes the butterflies flutter. Emma thinks that Valentine's Day is a GREAT day! Isn't she sweet???

Unwritten

I have a new song that is my favorite. It is called Unwritten, and it is exactly what I needed to hear. The moment that I heard it on the radio I knew that it was meant for me to hear right at that moment. It says:

I am unwritten,
can't read my mind
I'm undefined

I'm just beginning
the pens in my hand
Ending unplanned

Staring at the blank page before you
open up the dirty window
let the sun illuminate the words that you cannot find

Reaching for something in the distance
So close you can almost taste it
Release your inhabition
Feel the rain on your skin

No one else can feel it for you
only you can let it in
No one else, no one else
Speak the words on your lips

Treat yourself in words unspoken
Live your life with arms wide open
Today is
Where your book begins
The rest is still UNWRITTEN!!!!

Aren't we all just beginning to live. Each day SHOULD be a new beginning...another page in a wonderful book....with the ending unplanned. When I think about my favorite book that I have ever read, it is not utter happiness on every page. It has drama....it has depth. Every page of my book may not be happiness, excitement, and joy. It is the reality of life. There are moments of true bliss, and there are moments of extreme dispair. How I wish that every day of my life had been documented. Wouldn't it be wonderful to look back in a time of dispair, catch a glimpse of happiness, and realize that bright days would come again. Wouldn't it be wonderful to keep yourself grounded by reading about a time in your life that was terrifying and realizing that.....today is really not all that bad....I CAN handle this.

I think it is important for me to realize that I am in charge of me. No one else can "feel" it for me....I need to feel the rain on my skin.

So, today, I am chosing to live my life with arms wide open! Today is where my book begins. THE REST IS STILL UNWRITTEN! How is the story in your book?

Our Little Cheerleader

I have to admit that we are not huge football fans in our house. However, I always try to root for one of the teams during the superbowl. This year the Colts and the Bears are in the Superbowl. Granted I have no big ties to either team....which has made me think that I need to find out more about the teams:). I have followed a Caringbridge page for a little boy named Donovan http://www.caringbridge.org/in/babydonovan/. The family LOVES the Colts. I have always had a smile on my face as I read how much they love their little Donovan....and their amazing Colts. Little Donovan, just 2 years old, earned his angel wings the day before the colts played their last game. I honestly feel that they won that game (just barely....at the end) just for Baby D. So, a part of me really wants to root for the Colts.

HOWEVER, the other day we were in the basement sorting through Emma's clothes (ones she has outgrown....and upcoming hand-me-downs). She reached into a box and pulled out a dress. She INSISTED on putting it on. When I looked at it again. I realized it was a BEARS cheerleading outfit. Apparently Miss Em has her own team that she plans on rooting for. AND, it looks like she has found her true calling in life (Aunt Beck....she wants YOU to be her agent). I'm thinking that she will go far with this career move.

Here she is practicing her dance moves:


Here she is working on her "girlish figure":


Then, she MUST practice her posing for all of those photo shoots:


Who could say no to this sweet face...with all of the beautiful hair:


So, it looks like our houshold will be split this year on who should win the Superbowl. I would still like the Colts to win.....for the honor of Baby D. However, my little Bears cheerleader does make it difficult not to think about the Bears as a possibility. So, I guess that I will be happy either way!!!

Stay at home Moms

I have been home with Emma for the last few days. Our babysitter's children have been sick, and it is very difficult to find someone else to watch Miss Em. So, I am glad to take on the job. However, does it make me a bad person to say that I don't think that I could do this every day? I truly value those mother's that do stay at home...I think it is wonderful. When I stay at home with Emma too much I just find myself getting more and more frustrated...with her, with our situation, with the world, with EVERYTHING!! I find myself just letting her watch T.V. (before I was a Mom...I said, "I would never let my child watch TV too much......I said never to many things....before I was a mom). Maybe if I was a stay at home mom I would go out and do more in the community? When I am just home "sick" with her (although she is not sick....a teacher cannot be seen out in public on a school day). I feel that teaching is the best job to have if you have to work as a mom. I get long vacations, and I get off at a decent time. However, I feel the pressure from those around me who tell me, "just stay at home with her". Well, #1 I CAN"T stay home....my husband is also a teacher, and one income is not enough to support us! and #2 I don't think that I would value my child as much if I was home with her ALL of the time. Is that a bad thing? Probably! Is it bad to think about having another child....and not planning to stay at home with that one either? Is someone else truly raising my child? I look forward to the day that Emma can come to school with me and be in my classroom. I know that if I give my job up it would be very difficult to get another teaching job in this district, and I truly have my dream job. I have a classroom of 10 children, and I love the people that I work with. Then, there is always the fear that creeps in that my babysitter may move or say she doesn't want to watch Miss Em anymore....THEN what do I do.

See, staying at home just makes me think too much! I think about the future and all of the "what if's"....it's not healthy!!

The King Penguin

My students are learning about penguins....all kinds of penguins. Yesterday we were discussing the king penguin. The king penguin weighs approximately 30 pounds and is 32-35 inches tall. Well, guess who else weighs 30 pounds and is 32 inches tall (I know....my last post kind of gave it away)....Miss Em!!! I wonder how she would do if I sent her to Antarctica:). I'm not thinking that she would do so well:). Still, I found it to be an interesting association.

We've reached the big 3-0!!!!

No, I am not talking about 30 years of age:)....that TRULY feels like forever away for Miss Em....and that's OK by me:). I mean that we have reached a HUGE milestone of.......are you ready for this????.......30 pounds!!! I am not sure that I ever thought the day would come! 30 pounds is HUGE for us:). Granted I used our home scale to weigh her because....are you ready for THIS???......we haven't been to the doctor AT ALL for more than 2 months. Yes, 2 months!!! Now, I am knocking HARD on wood!

Emma is truly making so many gains right now and it is fun to watch. She is starting to talk more and more (something that I have dreamed about all of her life). She is healthy, and she is gaining weight. What more can I ask for? Now, I could pass on the orneriness that she seems to be trying out, but hey...it goes with the 3 year old territory, right? I'm lovin' it:)!

You are my sunshine

The sun is shining through once again. I believe that it is part of the roller coaster of being a parent of a child with special needs. Some days/weeks/months are very very dark. I try to keep those periods of time short....and to myself. However, it does help me to write about it. It does not make it go away, but it makes it more bearable. I always look forward to the moment when I can see the bright and shining light once again. I can see the sun shining through

and the name of the shining sun.....is.....EMMA

The beautiful sleeping face that pops the shower curtain open each morning and says, "haaaaa" (her new hi....we don't quite have the long i sound yet....but, we'll take it). The sound of pitter patter feet in the middle of the night, and the finger poking me in the eye along with the sweet little voice saying, "mom, mom, mom" then making the drinking sound to let me know that she would like something to drink.

Yes, my "normal" may be a bit different than others, and I do sometimes grieve over the life that I have dreamed about every day (the one where I would have the child at the top of her class....the one where I could read the book What to Expect the Toddler Years...and I could relate to every single page....please note that all of those books were burned in my house when Emma was 3 months old:). However, one dream that I always had is being achieved every single day....I DO have the perfect little girl that I always dreamed about. She was made absolutely perfectly....the way SHE was meant to be.

Somedays I think my mind just needs to take a vacation and go somewhere else. I believe today is a day that it should have done that....because it is thinking entirely too much! Emma and I have the day off today...YEAH!! We have the day off for "equality day"...otherwise known as Martin Luther King Day. My husband does not have the day off....apparently they do not have enough ethnic diversity in the community??? Today is also my brother-in-laws birthday. We were invited to go out to breakfast with my sister, brother-in-law, their 3 boys, and her mother and father in-law. Emma was eating like a champ, and I was actually breathing (I am usually holding my breath at a restaurant, scoping out where the bathroom is, and contemplating the quickest and easiest path I can take to get to the bathroom once my child has thrown up). However, today seemed like a different day. We were going to make it through this meal. All was going to be OK. WRONG!!!! Emma shoved too much toast into her mouth, gagged, and yes you guessed it....threw up. Luckily, I had the "bucket bib" in place and caught all of it. However, the humility of it hit me like a ton of bricks. Tears flooded my eyes and flowed down my cheeks as I quickly walked to the bathroom to empty the contents of the bib and wash it out. Of course I quickly composed myself and came out looking fresh and ready to take on the world again. I may look that way on the outside, but everytime that happens a little piece of my dignity goes along with it. Times like that make me look at my future....a future that no one knows. Will I one day have a 12 year old that still has to wear a bib and throws up?? Will this ever get better? Tears again...here they come! Where is the God that is supposed to listen to my prayers? How many times have I prayed in the last 3 1/2 years? Yes, my child is with me, and for that I truly am thankful. I just want her to have an easier life. I need help! Words of advise from other parents that have been there? How do you cope with what may/may not be in the future?

2007....fitting in????

I find myself lost as 2007 begins. I am slowly removing myself from existance. It may sound harsh, but I believe that is what is happening. I've been trying to piece together why I just want to remove myself from all around me. I can't completely put my finger on it...but I do know that I am tired of my "new normal". Sure, the Polly Anna in me wants to say, "There is no such thing as normal" or "everyone has their troubles" or "Normal is just a setting on the dryer". I know that it's true...each and every person has something going on in their lives that others may not consider "normal". Here's the kicker....my "not-so-normal" life is SO obvious to anyone that comes into contact with me. My child who I love dearly does not talk....and she throws up...A LOT (on top of the 10+ surgeries that she has had in her short life)!!! I just find myself longing to at least look "normal" again. Is that so wrong? I'm not embarrassed or ashamed of my child. I love her, and I would fight (and I have) for her. I just wonder....when will this new normal feel OK??? I've been struggling with this for 3 1/2 years. In so many ways it has become much easier, but in some ways it is getting more difficult. The older Emma gets...the more people expect her to be able to do. The bar continues to raise....and we continue to plateau (or make very slow progress). When can I reconnect with society and become the "wall flower" that I once was...simply blending in with my surroundings and going with the flow. I guess I just want to fit in once again. It is human nature to want acceptance, and I believe that it is even more important to feel that your offspring will be accepted. So, 2007 may be a year of learning to accept my new normal....that is my hope and my RESOLUTION!!!!

Wonderful Christmas break!

Well, today is the last day of our break. It is so nice to have a spouse that is also a teacher. We have enjoyed every moment of our time off together, and we look forward to the year ahead.

I thought I would share a "few" pictures:
The first is what Emma thought of Santa this year...petrified would be a good year. However, being the "GREAT" Mom that I am...I just HAD to get a picture. So, here it is


So, Christmas morning when Emma heard that Santa had been to our house....and he left lots of toys. I THOUGHT she would be excited. She was..petrified. .. she tought he was still there. We had to practically drag her out of her room. She clung to her Dad's leg.


She enjoyed the rest of the day...and she looked oh so sweet:)


Two days later Emma got her first professional hair cut. I have cut about a foot off on my own, but I decided it was time for someone who knows what they're doing to give it a try.

She would only sit on the chair if the beautician's daughter sat on the chair first:).

Can you tell that she got it cut? Not really, but it did make it easier to comb through, and that was the goal!

We also enjoyed a GREAT trip into Yellowstone National Park on a snow coach over break. To see the beauty and peace in the park is magical. The shimmering snow that has not been touched is so amazing! Emma loved it too, and she was truly an angel for the entire trip. Here are a few pictures:








Happy New Year to all!!! 2007 is going to be a FABULOUS year!!!

Tis the Season:)!!

The season is upon us. Time for turkey and fa la la la la. It is my favorite time of the year. The weather is cool, but most of the time it is still bearable. Everywhere you go people are still in the Christmas spirit, AND I get to eat Auntie Em's sweet potatoes (from the Mayberry cookbook). Yes, they are my FAVORITE part of Thanksgiving. It's the only time during the year that I get to eat them.

It is also my favorite time of the year because Mr. Snowman gets to make his appearance in the front of our house where he is lit up by all of the other Christmas lights that surround him. The day that we put our Christmas lights up is NOT my favorite day of the year. It comes with high tension...and extremely high ladders (which I always get talked into going up). However, by the end of the night...the beauty of the house and the glow of the lights warms my heart. It is another reason that I love this season.

We lit up the outside of our house last Sunday. This was the first year that Emma insisted on "helping". She got RIGHT in the middle of the lights and wanted to hand them to "mama". PERFECT! It may have added a little more tension to an already intense day, but the joy on her face when she knew that she helped made it all worthwhile. Here is a picture of our little helper elf. I hope you all enjoy this part of the season as much as I do!

Blast from the "past"

I know that Emma's broken arm happened over a month ago, but I just downloaded the pictures and I had to share them.

Here is Emma. She broke her arm at noon the day before, spent 5 hours in our local ER only to be told that we had to drive to Denver, drove 9 hours (through a MAJOR snow storm) to get there at 3:30 AM, "slept" for 3 hours, then got ready for her big surgery. Still, laying in this bed, getting ready to go into the ER, she wants Mom to "smell her feet" and she has a HUGE grin on her face (her arm has been broken now for 18 hours!!!


The wonderful attire that you get to wear if you are the fortunate one to accompany the child to the ER until she falls asleep. We'll never leave your side until you know you are safe little one. Oh, so the clothes scare you???? (remember Mom and Dad are running on little to NO sleep...and the "clothing" is not very flattering)!


Coming out of surgery to.....one of the same nurses that we had post transplant!!! Amazing!!! However, this time she has juice...AND she gave me a PRETTY purple cast!!! OH, and my belly doesn't hurt:).


As long as I have my buddy Elmo to help hold my arm up....life is GOOD!!!


After I got out of the hospital...I got to see my friend Ronald McDonald...and I actually LIKED him this time!!!


3 weeks later, my cast is off, and I'm back on my wild way! I'm running, jumping, and LOVING life:). My mom says that she wishes EVERYTHING was as easy as my broken arm:)!!!

Angels Among Us

I'm feeling a little emotionally empty right now. I never would have imagined that I would know so many children that would be gone from this Earth at such a young age. It just makes me wonder WHY? These children have struggled, they have fought such a difficult battle, still...they die? The parents are left to wonder time and time again what their child would be doing today...if only. Yes, you hear the typical..they are in a better place, they are not hurting anymore, they are with God. However, the parents are left here with a huge gaping hole in their hearts, and the big question....WHY? A parent is not supposed to bury their child. That is not the way it is supposed to be. It just makes me angry. It leaves me feeling helpless. What do you say to the parent that is grieving? I do not know what they are feeling. I have thought numerous times that I might become the person that would know what they are going through, fortunately my child is still here today. What do you say to the person that is living their worst nightmare? I'm so sorry just doesn't seem to cut it. Oh how I wish that I could turn the clock back for these parents and make the outcome for their sweet children different.

Godspeed Little Jackson and Dillon. May peace comfort both of your parents as they try to endure the pain of their loss.

Happy Halloween???

I hope that you all had a wonderful Halloween. Emma had so much fun! She was absolutely terrified of all of the masks, but she was so excited to be Elmo....and she was SO cute (not that I am partial at all). Here are a couple of pictures (if I can get them to work....Flickr has been a little temperamental lately).



This one was the day BEFORE the broken arm:). I was standing behind the camera, pointing to my chin, and telling her to smile. She is such an imitator:).

I'll just say it

I'm just going to come right out and say it....while I'm feeling "brave"...my child has special needs. Just writing those words makes the tears jump right out of my eyes to flow down my cheeks. It's amazing! You'd think after 3 years of this my tear ducts would have dried up by now, but I can make my shirt go from dry to soaking wet on the top in 60 seconds flat. Yes, everyone knows that she has medical needs, but when will people figure out that she has "other needs" as well. OR, have they already figured it out...and they just don't say anything? It's amazing the havoc that it wreaks on my brain and my body day in and day out! I feel as if I have aged 20 years in the past 3 years. Yet, I love that girl just the way that she is. My fear is that the rest of the world may not accept her the way that I do....the way she deserves to be accepted. She has battled too much in her short little life to not be looked at with the highest regard! I will fight tooth and nail for that child....but, why should I have to....shouldn't that just be a given?

Just my random thoughts for the day:)