Summer fun!

I know that it has been awhile since I have posted, but LIFE has gotten in the way. We have been so busy, and Em has been having SO much fun! So, I had to share a picture post with you about our good times that have been had:).

We went to the hospital for a liver checkup for Emma. Here she is waiting for her blood draw....it took 4 pokes to get it drawn, but my little trooper only shed one silent tear. What an amazing girl! She got a really great treat from the staff after she was done for doing such a super job:).


Then we were able to see lots and lots of family. Emma enjoyed jumping on the trampoline.


And spending time with her cousins!


When we got home Emma enjoyed playing in our neighbors fabulous "waterpark". Actually our neighbor was flood irrigating, but Emma had a blast playing in the water!


Who could blame her? I mean...look at this AMAZING yard!!!


It was enough to wear out any Princess


We went to some of our friend's house for a barbecue the other night. Emma got to hold a kitty for the first time.


AND she got to help feed a baby cow.


Best of all she has enjoyed just hangin' out with her Mama...while Daddy does grad school "stuff".


It's really been an amazing summer....and I'm not ready for it to end yet. 3 more glorious weeks, and I'm going to enjoy every second of them:).

Stay tuned.....we have Emma's 4th birthday coming up....4 years....can you believe it????

Our Travels

It's been a month full of travels in our little household this month. Last weekend, as Emma and I were heading to Jackson Hole, WY to pick up her Dad from a conference....I had a little chuckle. As I approached a construction site....there it was....on the side of the road. It was a large, orange, construction sign with the simple words "EXPECT DELAYS". Why did I find this humerous you may ask? It was because others came across it as they were making their journey through life. How nice would it be if a big sign like that could just hit you in the forehead in your 8th month of pregnancy? I found it amusing that people were on a mission to get to their final destinations.....then the delays came and they had to wait and wait. We had to wait for an hour for the pilot car to come. I think that definitely made some people a little irritated. While some sat irritated in their vehicles, others of us got out to enjoy the beautiful warm sunshine and the breathtaking view. Then, as we finally got to proceed, we did so at the pace of a turtle leaving the travelers to wonder, "are we EVER going to get there?". Next, we came to the sign that said "ROUGH ROAD AHEAD". I just laughed. This little stretch of road that was only 10 miles long was like reading a road map about the last 4 years of my life. HOWEVER, the key that I found to this entire adventure was this......in the end we DID reach our destination!! Even through all of the delays, the slow pace, the rough roads, (did I mention the wrong turn that took me an EXTRA hour?)....after all fo that...I did still arrive in Jackson Hole Wyoming!

Upon arriving in Jackson I looked in my rearview mirror to see the wonder girl Emma....smiling up at the "BIG" Teton Mountains....as she said "BIG" and signed Mountain. Yes, Baby girl, we will get there. It may be a difficult path, but the scenery along the way is SO worth the wait.

Here are a few pictures of my beautiful girl enjoying summer:).





Emma enjoying the view at Yellowstone Lake

A Rock as a Home

I'm contemplating just finding a beautiful rock and making my home right under it. I'd like to just be away from the world...enjoying my little family and listening to the rain. I would like to watch my child playing in the sunshine and exploring her surroundings. Oh wait.....my life is kind of like that! I love the days that I can sit and home and watch Emma. The mischief in her eyes, the way that she figures things out, the knowledge that her brain has continually growing. I wish that we could just lock the door to the outside world and pretend that everything was wonderful and perfect and gloriously glorious. Truthfully most days really are like that.

I know that I have a tendancy to write about the negative. For my own therapeutic means I have to write out the things that bother me. It is my way of "letting go". There are very few people that I discuss my woes with, but somehow letting all of the cyber-space world know about my life seems to be OK. I don't like talking to people about it because....let's face it....everyone has problems, right? Who wants to hear about mine? At least if you're reading about my problems you can stop reading...thinking Man this woman is psycho:). if I told you all of this in person you would be forced to listen to my incessant whining with a glazed over look on your face and casually nod your head and say "uh-huh" from time to time.

Today is a rough day....again. I usually only have about one/month. I think that is pretty darn good considering after Emma's initial diagnosis every day was black. Even on medication it was difficult for me to get out of bed every morning, put a smile on my face, and make it a great day. Every single day!!! I think that I am doing pretty good.

However, comments that innocent people (not SMART people) make can just crush me flat in an instant. It could be something that I have thought about every day since Emma's birth, but to hear it come out of someone else's mouth makes it real.....and sometimes I prefer living in fantasy. Real to me is scary and unknown. Today someone asked me if I thought that Emma would have to be placed in the severly special needs room once she is in school. Now, it is 2 years until Emma will be in school. Who knows what will happen in those 2 years.....who knows if she will even be with us in 2 years (yes, a bleak thought....but also real). However, I honestly had never had that thought! I had never thought that it might be a possibility that they would tell me that she HAD to go to the severely special needs classroom. I played it cool for the lady that asked, and as soon as I got in my car I felt all of the air escaping out of my chest. It felt like a huge boulder was being place on top of me....crushing crushing. I saw my life flash before my eyes....including my future life with my child. Hot tears sprang from my eyes as sobs wracked my body. NO, this is not my life!!! My life is living under my beautiful rock watching my child enjoy the wonders of the world. To hell with anyone who thinks anything else!!!

I honestly just try to live in the today. Here and now is where I need to be. I need to be present for my child and all that she is. I treasure every breath that she takes and value the fact that she is here for one more day.

Please let me know if you hear of any real estate with a simple yet beautiful rock that is big enought to occupy a family of 3. We would prefer one that has a sign that says, "We love to live our simple naive life. Please allow us to live in the today".

Never Again!

I was told the day that my child was born that she had some "odd" features. I was told within 24 hours that she might die. I was told when my child was 6 weeks old that she had Rubinstein Taybi Syndrome and she would never walk or talk....she would be severely retarded. I was told when my child was 6 weeks old that she had a life threatening liver disease and without surgery she would not make it past her 2nd birthday. I was later that day told that my child "probably" did not have Rubinstein Taybi syndrome....they just did not know....only TIME would tell. I vividly remember withdrawing to the very darkest place that I could find in my mind. It was the only place that I could live with all of this information. The beautiful child that I had carried for 9 months....the child I dreamed of....I planned her future...I planned OUR future together. At the time all I could think of were two things. First I thought that we would not have a future at all with this beautiful daughter of ours. Second I thought about the future that would be so different for our family. The days became darker and darker while the thoughts in my head became more and more bleak and undefined. I withdrew from my child. I was so afraid to love her. I despised the way that others looked at her. I worried about every single thing there was to worry about. How was her growth? Was she eating? What did her bloodwork look like? Was her oxygen sufficient? Did she seem more yellow? The gloom of the unpredictable future was always hanging over us. Did she or did she not have "The syndrome"? Would she be severely mentally retarded? We wondered if we were capable of raising a child with such severe special needs. We briefly discussed the possibility that we could not handle this. I prayed and prayed that if her life would not be happy that God take her from us....and not give her a 2nd chance at life.

I was told when my child was 4 months old that she had a heart defect. I was told when my child was 4 months old that she would need a liver transplant....SOON! I was told when my child was 4 months old that if the heart defect could not be repaired she would not be eligible for a transplant. I was told when my child was 4 months old that the doctor "did not think" she had Rubinstein Taybi Syndrome....."she looked too bright". I prayed and prayed and prayed that the perfect liver would come and she would live a happy life.

I have lived through 7 surgeried in the first 7 months of my child's life. I never imagined my life with a sick child.....or a child with special needs. Here I am today, almost 4 years later. I am so happy that my child di receive a second chance at life. The first year of Emma's life was very gloomy. I never quite felt like I attached to her. I always feared getting too close to her....or loving her too much. These are not emotions that I am proud of....they are just the truth. I have struggled through many emotions over the last 4 years. I still struggle with having a child with special needs and fearing what her future will look like. However, I try to wake up every day and appreciate the fact that I have one more day with this amazing child. I look at her face and I cannot imagine my life without her. I watch her tell me no in her own way (not with words) and I laugh inside at her strength.

Last night we met our neighbors in the yard. Their daughter (who is my age) was visiting. Emma LOVES her. They were playing, and their daughter said to me, "You need to teach her some words". Anger has enveloped me since I heard that phrase come out of her mouth. Not anger at her for being so ignorant, but anger at the fact that people think something is "wrong" with Emma...that I need to "teach" her something. Emma is exactly who she is supposed to be....and she will speak exactly when she is supposed to. (OH, and the fact that we have had her in speech therapy since she was 5 months old).

Today I have decided that it's not going to affect me. Nothing that she or anyone else has to say about Emma will ever again make me go to "that dark place". Today is for living, and I will never again withdraw or be ashamed of my child. She cannot speak, but she has more knowledge about the world in many ways then most of us could ever have. Emma is absolutely perfect!!! Just ask her:).

The little pangs in life

The end of the school year is upon us....and I can feel it in the air. The children are so anxious (and so are the teachers of course). As I was cleaning my classroom today I came across student work that I wanted to make sure to send home. So many parents keep a portfolio for their child. They dream of sharing it with their children's children. They would laugh with little Johnny about the way that he made his J backwards in kindergarten, or how he drew his Dad with just a head and arms and legs coming out of it (otherwise known as spider people). Yes, my student's parents needed this student work to add to that portfolio.

Then it hit me. The pain that occassionally creeps up on me. Will I ever experience that? It's a double edged sword. A part of me is petrified that Emma will not be alive for me to share her portfolio with her when she is grown. Then, there is the part of me that is petrified that she will not be able to produce work like that on her own. I know that it's a crazy thought. Deep down I do know that. Emma is Emma....she will do it in her own time....but she will do it.

I just wish that I could shut off certain parts of my brain. I just want to live in the now and appreciate today. Today is the day that I put a pair of size 3T pants on my little peanut....and THEY FIT...length and all!!! Today is the day that Emma went to pre-school and got in trouble for taking her pants off (I'm just excited that she CAN take her own pants off). Today is also the day that Emma said clear as a bell, "Horse...cold"....while pointing out the window at the horse.

I truly wish that my mind could always focus on the positive. I wish that I still had the gift of bein a naive parent who thought my child would grow up and could possible become the president of the United States (OK....I never would wish that on anyone). I wish that my mind would never have to grieve the unknown.

Happy Mother's Day

Happy Mother's Day to all! A time to reflect on the job of being a mother. When I ask my 5 year old student's what a mother does I often get the response, "Make dinner" or "clean the house" or "Get me ready for school". The one that got me the other day was, "My Mommy loves me no matter what". There you have it. A Mother's job is to love their child no matter what.

I have to say that on this Mother's Day eve I am pretty darn proud of the Mother that I have become. I can do all of the above. I can make dinner (order in Pizza counts, right?). I can clean the house, and I can get Emma ready for school. Above all else I love my child with a fierce protectiveness no matter what. She is everything that I have dreamed of in a daughter. She is funny, beautiful, and she loves everyone she meets.....especially her mommy. I am so proud of her and who she has become. I love to share new adventures with her, and teach her about the world. I love to see the wonder on her face at the fresh fallen snow.



Looking back to my "pre-Emma" days I always knew that a wanted to be a Mom. However, I never really gave a second thought to what that job would be like. My Mother was a stay -at-home mom. I figured that my job as a mom would be similar....except I would also have a job outside of the home. All of the women that I have known to fill the role as mom have done a good job. I had excellent role models to follow. When my child was born it was difficult to see where my path was meant to travel. It was obvious that many parts of my new role would be different. My child was yellow, she required 7 surgeries in the first 7 months of life (including a life saving liver transplant), she has required and will continue to require speech/occupational/physical therapies 4 times per week. My child has difficulties that make her life more challenging.

However, I realize now that the fact is A Mother's job is to love her child no matter what. I will continue to do that, and today I am proud of myself because I think that I have done a pretty good job so far in this new role in my life.

A Child's Perspective

While Emma's Daddy was out of town this weekend, we had our babysitter's little girl over to stay the night. She is 7, and I have had her as a student for 2 years. She is an amazing little girl with exceptional manners....and she LOVES Emma!! It was so sweet to watch the 2 of them playing together. Then, Joncey asked me, "When I am 12 and Emma's all grown up...". I said, "Whoa, wait a second, when you are 12 years old how old will Emma be?". She paused to think about this and said, "8". I said, "So, will she be all grown up if she is only 8?". (Thinking....am I missing something?) Joncey said, "Well, I mean when she is 8 she will have "real words" right? So, then she will be all grown up". WOW! I guess that is the ticket. Once they get "real words" they are considered a grown up. Watch out, soon the 3 year olds in our society will be wanting to vote....and join the military.

However, I did like the optimistic point of view. Em's doing OK....as long as she has "real words" by the time she is 8. I think I need to adopt this philosophy myself. Maybe my mind would be less filled with worry if I could just learn some things from this amazing 7 year old.

Not Just Another Dandelion

It was a beautiful day today. Emma and I worked in the yard. We planted some bumpy, ugly bulbs that the box assured me will bloom into beautiful fragrant flowers. I look forward to seeing them. Then, I began to dig up the damn dandelions. The dandelions that are taking over my yard. They are EVERYWHERE!!! It's amazing how they just pop up...almost as you are watching them.

While cussing at the dandelions an analogy came into my head. It's a bit scary to catch a glimpse into my head....but, here we go. Hold on!

Dandelions are so much like children. You see.... a dandelion will grow regardless of conditions. It needs sunlight, water, and soil.....the basics....but beyond that not a lot is required to ensure that a dandelion will grow.

You ask how dandelions remind me of children. Well, children are similar to dandelions. They pop up all over the place. Many times they are not planned....they just happen. And guess what....typically they grow. Sure, they need food, water, shelter....but, similar to the dandelion....regardless of conditions children will continue to grow. Yes, for a child to become an adult who can cope with society they need love, a good home, etc. But, even without those things, a child will grow. A child will typically learn how to sit up, roll over, crawl, walk, eat, talk.....amazingly all on their own (with a little guidance).

Every so often a special seed is planted among the dandelions. This seed is placed in a very special place. It is given love and extra attention from the early stages. Finally the day comes when the tiny little plant pops out of the Earth. From the beginning it is apparent that this seed is special...it will require extra love, patience, and work for it to become a flower. The gardeners scratch their heads. After all, they only know what to do with the dandelion....which typically grows on its own. This plant that the gardeners have been given will wither if circumstances are not precise. The gardeners watch the plant with utter scrutiny....wanting to give it the best conditions. They learn that the plant that they have been given is called an orchid, and it is the most fragile of all the plants. They read that even after all of the care they give their orchid, all of the love and proper handling, their orchid will never be like the other dandelions. They watch, they wait, and they wonder. Will all of the dandelion parents laugh when their flower finally blooms.

The day comes! The vibrant color emerges to the awe struck onlookers. The flower that everyone believed would never make it blossoms into a beautiful image unlike any other. The gardeners realize that the tender orchid will always require special care, but it has a beauty unlike any of the dandelions. It is looked upon as a true miracle.....a miracle loved by all.

And it begins

At the store today a woman that we have known for quite some time approached us. She wanted to say hello. How thoughtful was my initial reaction. She saw Emma in the cart and said, "H-E-L-L-O B-E-A-U-T-F-U-L G-I-R-L.....H-O-W A-R-E Y-O-U T-O-D-A-Y?" A little louder and a lot slower than you would speak to most people. My mind started spinning around this for a minute. It began to think "What???? She can hear just fine....and she understands you very clearly too....there is no reason to speak to my child louder or more drawn out than you would any other child. She simply does not answer like other children do. It's quite simple really.

Granted, I do want people to talk to Emma. I don't ever want people to just walk by us because they don't know what to say. I just want people to treat her as a normal little girl. True, she is exceptional. However, I am still a mom that just wants to go about my day to day business with my child in tow knowing that our world is just "normal". It is our version of "normal" and we wouldn't have it any other way.

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:)

Which muppet would I be?????

You Are Kermit

Hi, ho! Lovable and friendly, you get along well with everyone you know. You're a big thinker, and sometimes you over think life's problems. Don't worry - everyone know's it's not easy being green. Just remember, time's fun when you're having flies!

The Muppet Personality Test

My Child's Name is EMMA!

Yet another visit to the hospital...another surgery under our belts....and more doctors pushing for Emma to be seen by the genetic team. Guess what folks....WE ARE NOT DOING IT!! I don't need someone to tell me that she is not talking yet. We have had every organ in her body inspected. Truly, what would a genetic team tell us that we don't already know? Yes, they may give a "name" to what she has, but I want my child to be known as Emma....not some name to a syndrome! True, that may be a part of who she is, but that does not define my child....END OF STORY!!!

The snow that I was so excited about in my last post turned into my nightmare. Soon after I posted my last entry I had walked into the kitchen, then I heard Emma crying. She had fallen off of the couch. I picked her up and tried to comfort her. It was a cry like I have never heard before. She would not move her arm and she screamed bloody murder and said, "OWWWWW" (a new word for Miss Em) anytime I touched it. So, I took her to our local ER and found out it was broken. We sat for 4 hours while they decided what to do. After talking to Denver about our last "simple procedure" (the one where Em crashed on the table and ended up in ICU), the anesthesiologist decided that he wasn't comfortable doing the surgery (she needed 2 pins put in). So, at 5:30 in the evening we left for our long journey to Denver (a 9 hour drive). The "beautiful" snow turned into horrible road conditions. At one point we had to drive 30 MPH for 60 miles! UGH!

Well, 3 nights in the hospital and a purple cast later Miss Em is on the mend. This stay in the hospital has made my heart feel a little more raw. That is the only word that I can describe. When you think of a broken arm you think of a "normal" kid thing, but having a 9 hour drive with doctors mentioning genetics on top of it just makes you realize that people cannot just accept that this is our "normal" for our little girl. Everytime I think that my heart is healing....someone else stabs me. I accept her for who she is, and I expect everyone else to do the same. Is that so wrong????

Winter is here?

I know that it seems a little early...but, I woke up this morning, looked out the window, and saw the soft white blanket covering the Earth. I love the snow! It makes everything look so fresh and clean. The cold.....something that I am not ready for quite yet, BUT they do go hand in hand...so, bring it on:).

We got to go out and brave the snow early this morning. Emma had to get her blood drawn. She was SUCH a big girl! She didn't even cry! WOW! I never thought I would see the day. Of course, I had her pick out her sticker and the kind of sucker she wanted before the blood draw. The tricks of the trade of a Mom who has to hold her child down time and time again.

Enjoy winter where ever you are. Yes, I'm sure that even Lisa is enjoying "winter" in Florida...with her 85 degree days:).

That euphoric feeling.....

Do you ever get the strange feeling that you are an outsider looking in? (No, I do not have multiple personalities....do not call in the straight jacket). I went to Wal-Mart (sometimes I feel like I should just move my bed into that place). I went to get a prescription at the pharmacy....imagine that. All of a sudden Emma gets whisked off by the pharmacist to go behind the counter to see all of her "pharmacy buddies"...how many of us get to go back there? Then, 3 people start discussing Emma's hair saying things like, "I'll bet it's curly like that because_______, and I'll bet she gets the color from__________". Hello folks, how about if you just ASK HER MOM....who is OH YEAH standing RIGHT HERE!!! Hmmmmm?? Bizarre feeling!

Well, I get Emma back from her expedition and head to the front of the store. I chose the self check out. I get there to see an elderly lady looking curiously at the machine wondering, "where is the clerk". I explained to her that it is "self check out". She said, "Well, who checks you out". Guess who checked her out....Yes, it was me (I used to work at Wal-mart, right). Then, she wanted help with the money. So, I did that too. She said that I was an angel and she gave me a mint from her purse. As she was walking away she turned with a gleam in her eye and she said, "That child of yours smiles all the way through her eyes. Her heart is pure". Then she walked away?

Do you ever wonder why a certain chain of events happens all together? Do you ever wonder if you are just a pon on a gameboard? I know....the bizarre thoughts that go through my mind. Aren't you glad that you captured a glimpse of them tonight???

1st day of preschool!

Well, we made it through the first day. The tears, and the drama......OK...they only came from me! LOL! Emma LOVED it! She was hugging all of her "friends" the minute they walked through the door (even though she had never met any of them). I honestly don't think she even noticed when we left. She had so much fun giving the dolls a bath and feeding them, playing with the cars on the race track, playing with the cars outside, having a snack, making a Chicka Chicka Boom Boom tree...whew! I thought she would fall down from exhaustion, but NO! She wouldn't even take a nap for me this afternoon!

It really was a great day all the way around. Tim and I dropped Emma off at school, then we went and did a presentation at the high school on organ donation. I felt really strong, but soon was moved to tears...and I was afraid that I wouldn't be able to stop them (it was during an I-movie that I had made at the beginning. Luckily, by the end of the movie I had regained my composure, and we did a fantastic job (if I do say so myself...I mean it is definitely something that I feel confident talking about). We finished in time to have a nice lunch at a restaurant before we went to pick up Em. I felt like I was playing hookie from work (I guess I kind of was...I had taken a personal day).

When we went to pick Emma up she was still playing hard with her new friends. Ahhh, the innocence of children. They just see everyone as good. Isn't that the way it should be? What a wonderful day!