Today...Breath...Get through Today

Why is it that some days are like this? Today I saw a little girl doing cartwheels while her mom was trying to get her into the car. I saw her and all I could think was, "That's supposed to be my little girl....why why why???". Just when you think that you won't ever ask "why?" again. Just when you think you are comfortable with life and where your child is....it hits you like a ton of bricks. Damn it!!! It's just not fair! Yes, I am so very thankful that she is alive! I am so thankful that she is who she is and that she shines sunshine into very dark places, but sometimes I just have to ask WHY!!!

I listen to the children in my class talk about Emma. They are so sweet saying, "Emma is just very little" or "she is young". While I am so happy that the others are so accepting...I just wish....oh how I wish!!

Yes, I am having my own pity party! I am....I am entitled. It won't last forever...but, it is what it is.

Here's a little picture of my 2 to brighten this post:). Enjoy!

Where does the time go??

I honestly can't believe that September is here...and our weather feels like Christmas is just around the corner. I wouldn't be surprised at all if I woke up to snow in the morning?? CRAZY!

Well, here are some pictures of a few things that have happened in our household lately....

We had Owen baptized in August. We have many pictures, but this is BY FAR my favorite:)


Then, Emma started Kindergarten! I can't believe it, but my baby girl is in big kid school! She absolutely LOVES it. They are long days for her, but she is doing GREAT! She says her favorite thing so far is the FREEZE song:). It's so fun to be able to watch her interact with the other kids. She is a peanut with a giant personality:).


Then, here is a picture of Big Boy Owen. He is growing so fast. It is fun to watch him:). He is now almost 14 lbs. He is rolling both ways, and can he ever carry on a conversation with himself:). He is loving daycare:).


Enjoying fall...wouldn't mind a little more summer, but we'll take what we can get:).

Today You're 5

Today is the day....my big girl (who is 33 lbs. and 37 1/2 inches tall) is 5 years old! Honesty is what I'm going to write today. I looked back at my blog this morning to see what Emma was doing at this time last year, and I think that I have always been very vague about Em's accomplishments (as a protection for myself). Now, I really wish that I had written about it because I KNOW that she has made leaps and bounds in the past year. SO, here goes.....Emma says so many words now. She will repeat any word that you give her (it may or may not sound the same). She puts together many 2 and 3 word phrases. "I go", "all done", I U Mommy" (ie...I love you mommy...makes a momma's heart proud), "no way", and many many many more. She can count to 10...although she ALWAYS leaves out 7. She loves the numbers 8, 9, and 10. We are working on identifying colors....but we're not there yet. She can match anything....the girl LOVES to match. She loves to play with Barbies and Hannah Montana:(! In the past year she had learned how to jump off of things and she's learned how to ride a tricycle (although she still doesn't LIKE to ride her tricycle). She can eat anything (except her allergens) and drink straight liquids (without thickener) without getting sick. Em loves to sing, and will try to sing every song that she hears.

Overall, Emma's come a long long ways. We still have a long way to go, but we are enjoying each new milestone that she makes. Life is good.

The Big 5!!!

Dear Little Missy Moo Emma Loo,
I cannot believe that tomorrow it will be 5 years since I first saw your beautiful face. I remember the first time that I saw your long black hair and heard your sweet little cry. I knew at that moment that you were mine and I would do everything in my power to always protect you. You were my sweet precious baby, and I loved you more than life.

That first year was tough. I saw you fight for your life so many times. You hung on and successfully made it over every hurdle with ease. You amazed all of us including the medical professionals. I saw you in pain so many times, and I cried for you wishing that I could take your place and make the bad times go away. We saw you transform from the very fragile caterpillar to an amazing strong butterfly. You found your wings, and you flew! Everywhere that you would go people would comment on your beauty. You knew how to work a room. Your personality just shone, and there was rarely a moment when you were not smiling.

Today, I look at you and I am in awe. Life is still challenging in so many ways, however you never let it get you down. You are the strongest person that I know. Your beauty and personality have become even larger than I ever imagined they could be. I look at you when you are telling me, "NO MOMMY!" and while it makes me frustrated that you don't want to listen to me....I always take a step back and appreciate the spunky little spitfire girl that you have become. You are my baby that they said would never walk....as you run from me laughing. You are my baby that they said would never talk, as you sing the song, "ONE DAY!" over and over and over and over.

Sing away sweet songbird. Your voice is the sweetest most wonderful sound that I have ever heard. Your mission in life is unknown, but you have already accomplished so much. Everyday I thank God that you have made it through all that you have. You are my angel sent from Heaven above to teach me and so many others about love and patience. Thank you for choosing me to be your Momma! I am one lucky lady.

Love,
Mommy

The Mind is a Scary Place

At times I worry that my mind cannot quite comprehend everything that happens in my world. I think that part of my mind is just my "tune out zone". When things get too complicated I just go to that place....and it makes me happy again. I find myself needing to do this a lot lately. There are so many big changes that are coming....and they are coming SOON! First, Emma will be 5...can you believe it??? 5 YEARS OLD!!! Where did all of the time go?? Second, Emma will be starting KINDERGARTEN! Yikes!! AND she will be IN MY CLASS. While an enormous part of me is so excited about this, and we did push for this to happen....a small part of me is scared out of my mind. Does that make me a bad parent?? Just the thought of it is making my mind go to its "happy place".

I know that Emma will be fine. It's me that I worry about. Not me as the teacher....she will be fine also. It's me as the Momma...who's heart literally gets ripped right out of my chest anytime that I see kids being mean to my little girl. Kids can be brutal! I know that I was probably brutal to kids who were different (meaning had special needs) when I was a kid, but I really wish that if I was mean I could turn back time and make it "all better" (Emma's favorite saying right now). I think that it will be difficult to try to explain to other students in my class why Emma is "different". I think it will be very difficult to seperate the teacher from the Momma in those situations. BUT, they will come and we will get through it. My mind will just go to the "happy place".

I find that since Emma was born I am much more outspoken than I ever was before. I have always been a fun and outgoing person. Now, I find that I am still me...with just a little more fire when it comes to certain subjects. Here is an example.....I frequent (many times daily) a website that has families of children with liver disease. I LOVE the people on the website and have made some wonderful friends who are on similar journeys. I have always felt that I am a big part of that website because Emma is the same as those children. I know that Emma has other issues, but I allow my mind to go to the "happy place", and I can make myself believe sometimes that liver disease is all that we are facing. However, TODAY one particular post hit me right in the heart! It made me feel like I had been knocked down on the floor and I was gasping for air. Really, it was a simple word that the mother wrote. Her child had just had a liver transplant yesterday and she was angry at a nurse. However, the one little word that she wrote made me lose a little respect for this mother, and it made me feel like she is one of the priviledged ones in the world.....a mother who does not have a child who is of lower intelligence. The mother wrote , "Does the nurse think I am a retard???". Yes, her child just had a transplant....I know that the mother is not "lucky". I know that she is hurting inside, and it was just a flippant comment. Before I had Emma the comment would have struck me as a little odd, but it would not have had the impact that it had on me today. It took everything in my not to PM her and tell her that it was inappropriate. But, #1 her child is very sick, and it would be very bad timing on my part. AND, #2 I know that it wasn't intended to be mean......my heart is just fragile.

So, today my mind will just go to my "happy place". Today I will count my blessings that my baby girl is almost 5 and will be going with me to kindergarten. Today I will be a happy momma who loves my girl no matter what.

4 days later....a prince is born

4 days after my last post....our prince decided it was time to make his entrance into the world. What an amazing entrance it was!! He decided to be born on one of my very best friend's birthdays.....April 28th....Happy Birthday Becky...AND Owen Edward James __________. He was 4 weeks early but healthy as can be:). He tipped the scales at 6 lbs. 14 oz. and 20 inches long. He really is amazing! Eating, sleeping, pooping, peeing (everywhere:)...boys are so much fun:)). What more can we ask for?? Here are a few pictures of the Prince...and one with the Princess. She's still not sure what to think of him! When he cries she yells at him, "STOP...no crying!!!" (Like that's going to make him stop??). She does love to hold him and kiss him too.
Owen's 1st picture....he's pretty relaxed:):







Here is Emma thinking, "If I just keep this plug in....he won't cry"

Falling into place....???....

I am going to knock on wood before I even type this post, but things really do seem to be falling into place. I am back to work, and feeling pretty darn good I have to say. I have 19 days to go until my scheduled c-section date, however my OB doesn't seem to think I will make it that long...and at this point I am OK with that. The ultrasound on Monday showed that my baby boy weighs a whopping 7 lbs. 3 oz. (YEAH C-section!). I feel an overwhelming sense of peace about his health, and I think that is a very good sign.

The planets also seem to be properly aligned at this moment. The BIG news since the last time I posted....EMMA GETS TO COME TO MY SCHOOL! Yes, I will have the ultimate priviledge of being her teacher next year. I can't even begin to explain what a huge weight that was off of my shoulders. I am so excited to see her get on the bus the first day with her brand new lunch box (Lord only knows what she will want to pack in it) and her pretty little dress. She is such a big girl, and I am just blessed to be able to be her first teacher in the public school setting.

We also had Emma's transition meeting last night (2 1/2 HOURS!!!)(Transitioning from pre-school to public school). I was extremely nervous about this meeting as her pre-school therapists go through all of her strengths, weaknesses, and.......show us the testing that shows where she is "developmentally". I have asked to not see any of the "scores" for these tests since Emma was 18 months. Seeing the scores back then did NOTHING for me! It just sent me into a crazy funk, and made me feel disconnected with my child....not very promising for either of us. I knew going into this meeting that I would be shown those scores, and I had prepared myself. However, when they got to that part of the meeting (and that part of the 3" thick packet of paperwork) there was a page that was folded in half. It was her scores!! They "had" to give them to me, but I am so glad that I didn't "have" to see them. No, I am not an ostrich with my head in the sand. I KNOW that Emma is developmentally behind her peers in ALL areas, BUT she is EXACTLY where she is supposed to be! That is truly all that I care about. Tell me what goals she has met (for her), and tell me where we need to go from here. End of story. The meeting went well, and I left with a positive feeling that next year Miss Emma is going to shine!!

Also, last week I found daycare for baby boy:). That was a HUGE relief!!! We live in a town of about 8,000. We don't have many daycares, and it seems that EVERYONE that works for the school district that is in the childbearing years is pregnant! Each daycare can only take 2 infants, so when I heard that the daycare that was #1 on my list had an infant opening I literally sprinted to the phone....which was not at all pretty by the way! I know the owner and I have since high school. I am just very excited!

So, that's our lives in a nutshell! Things are feeling pretty good, and I am so glad to know that the planets have finally figured it out and found that perfect alignment:).

This Life

Here I sit at 2:30 am full of frustration and confusion. Maybe it's because it's the middle of the night and I'm just not thinking clearly, but I felt like I needed to write some thoughts down so I can eventually look back and see how far I've come. That's what this blog is all about, right?

I sometimes sit back and I can't believe this is my life. Five years ago I sat on this same couch (probably in the middle of the night), pregnant, and I would never have dreamed that our path would have gone this way. I will just say it.....I never WANTED to be a mom of a child with special needs. Who would? I never WANTED to have a child with a complex medical history. Who would? Yet, here I sit 5 years later up to my neck in it....and what the hell am I supposed to do about it? Don't get me wrong I love her with all of my heart. I just hate the way that I still feel about being a mom with a child with special needs and a complex medical history. AND, I hate the fact that I will never know WHY! It hurts my heart like no one will ever understand to not know what the future holds for her. It makes me so very angry that we have to fight for every single thing for her, and it frustrates me that she will never be looked at as "normal".

My heart is so heavy tonight. I am so worried all the time that something will be wrong with this baby. I am in constant turmoil over it. What did I do wrong the first time I was pregnant? What if I have done it again? I pray that God knows that I am not strong enough to do this again. I NEED to experience normal. PLEASE let me experience normal. I hate the fact that we went to the neonatologist and got the perfect picture of the baby's foot (on ultrasound) and Tim and I both immediately jump into panic mode thinking that his foot looks exactly like Emma's. We then have the doctor going in search of the baby's thumbs....we need a picture of those thumbs to SEE that they are not the same as Emma's. It just makes my heart shatter! How can I NOT want this baby to be like Emma? As I layed there asking the doctor to look for different things on the ultrasound, I looked over at my sweet girl sitting on her Daddy's lap, and it just made me sad! How can I love someone SO much, yet be petrified at the thought of having another one like her?

As the time for the baby to be born gets closer, I can feel my anxiety getting worse. When I think about it, it feels like my chest is collapsing and I can no longer breath. I so badly want to see him, but I also don't want everyone checking him out head to toe to see if he has the same "dysmorphic features" (doctor's words:(....damn them) as his sister's. I want to just love and appreciate every aspect of both of my children, but tonight I just feel like a bad mom.

Happy 4th Liver Birthday Miss Em

Dear Emma,
I never imagined 4 years ago today that life with you could be this amazing. You have definitely been the rainbow at the end of the rain. Your colors shine through to all who meet you. You have such an amazing capability to make everyone smile. Even the person who is angry at the world and can see nothing good....cannot help but smile at you.

I believe that you know that you have this special gift, and you carry it with you like a treasure. You know exactly when to bring it out (when your being sent to your room for being naughty, and you just have to give Mom a hug first). Your world is amazing, and it is such a blessing to see you continually learn about your surroundings.

4 years ago today we placed you in the arms of a nurse to take you off to an 8 hour surgery. What should have been the most terrifying moment of my life...was actually one of the most peaceful. I knew that you had to have that surgery for you to live. Time was not on our side, and I had watched you slowly deteriorate for 7 months. I knew that you were struggling, and I was so thankful that you were finally receiving your gift.

Your Angel Claire has watched over you constantly. I have thought about and prayed for her family every day for the past 4 years. In their time of great sorrow, they chose to help 17 others. I'm so glad that one of those was you.

You never take a day for granted Emma. You live every day to its fullest, and you are rarely sad or angry. I cannot imagine if our journey had taken a different path, and I could not look at your smiling face today. I feel like the luckiest mommy in the whole world.

Continue your magic Emma! You are such an inspiration to so many.

Love,
Mama

1 more day....1 Angel always remembered

Claire would have been 21 years old. She was planning to become a nurse when her life came to an end on that beautiful mountain. Not a day goes by that I don't think of the devastation that her family has/ and continues to feel. Not a night goes by that I don't go into Emma's room after she is sleeping and thank "Angel Claire" for protecting our sweet girl. Emma gets her strength from Claire. I truly believe that. It has been said that the recipient of an organ often takes on some of the characteristics of the donor. Although I never knew Claire, I have read many comments from her friends and families that have been written on a website dedicated to her life. I know that she was a beautiful girl with a big heart. She loved life, and I know that she has passed that trait on to our Emma. Thank you Angel Claire for donating your liver to our little 7 month old girl who was desperately fighting for every breath she took. 4 years later and your liver is still a perfect fit for our fiesty girl. Bless you Angel Claire!

2 Parents

Yes, Emma's 2 parents have grown so much over the last 4 years. It was not too long ago that we were talking about how fortunate we are to have Emma in our lives. When she was first born....and for a long time after that, I think we both questioned WHY! What did we do in our lives to have God punish our child. That may sound odd....and we never felt like we were being punished, but why did God decide to give Emma so many struggles?? Just recently, we have both come to the understanding that Emma is SUCH a gift! (we have always known this...I cannot describe our recent thoughts). Other children who are "typical" are everywhere that you look, but when people look at Emma they see the love that she radiates. She loves everyone that she meets, and she would never want to hurt anyone. Truly, wouldn't it be a blessing if everyone in the world could look at every experience as an adventure....and love everyone they came into contact with. What a wonderful world it would be. As parents we have grown, and as a couple we have grown. It's been a very long journey, but it is one that we feel very fortunate to still be traveling. Today is one more day on the amazing journey with our precious girl.

3 Places that Emma loves to go

1) Grandma and Grandpa's house

2) To see her boys (our nephew's)

3) To get french fries at McDonald's

Not too hard to please the perfect princess:)!

4 Fun things

These are the top 4 things Emma loves today:

1) Her dogs

2) Dora the Explorer

3) Fruit snacks

4) Her Daddy....and sometimes her mommy too!

5 Fabulous things about our Future

Or, at least 5 fabulous things about the next year.

We look forward to:
1) Emma meeting her new baby brother!! What a day that will be:).

2) Emma starting kindergarten! I can't wait to see her at the BIG school:)....all 29 kids that we have there (grades K-5)

3) Emma's 4 year check up - It will be scheduled in July, and I'm sure it will be great!

4) Summer - All Emma can think about is planting flowers outside. I'm so excited to have her help me this year.

5) Seeing Cousin Kale again:). Emma loves her baby cousin, and she can't wait to see him again!

6 Significant people we've met along our journey

OK, I'm behind again! Somehow I am lacking my mojo??? You'd think just sitting on the couch all day would motivate me to write, but I seem to find other things to do.

Today, I am going to write about 6 of the people that we've met along this journey. These are 6 people that we would not have met otherwise, and they have made such a huge difference in who I am today. Some of them I only know through the Cyber world, but they are important to me nonetheless.

1) Becky, Joe, and Louis - We met the adorable Louis on an organ donor awareness walk. Although Becky calls me a stalker for tracking her down....I'm pretty sure that she's glad that I was so determined to meet them that day. Louis had received a heart transplant 3 months before Emma received her liver. Louis was also about 3 months older then Emma. Emma loved him from the start. Although we only knew Louis for a year before he left his Earthly body, he will ALWAYS hold a special place in our hearts. His parents Joe and Becky have become some of our best friend. Becky is the one person who I know will always listen to my woes and laugh about my funny mishaps. I truly feel like she is my sister that was misplaced at birth (hmmmm...not sure we could've had the same mom...but pretty sure they are at least sisters). My life has changed dramatically by having Becky in it.

2) Jill and Marek - Jill is my cyber friend who lives in Alaska. Our kids were transplanted within days of each other, and their birthdays are very close also. Marek and Emma have had many similar post transplant issues (especially allergies). I look forward to the day that I will one day meet Jill in person. When I talk to her on the phone it is as if I have known her all of my life. She has 3 boys, and she is expecting baby #4 in September:).

3) CRC staff - I can't limit this to just one person. CRC is the place that Emma goes to pre-school. All of her teachers and therapists (well MOST of them) have been phenomenol! They are so great with our sweet girl, and she has made amazing progress because of their loving care.

4) Annette - she is our transplant coordinator, and I don't know how we would have been able to travel this journey without her. She is the one who called to tell us that our life was about to forever change, and that our girl was going to have a 2nd chance. She answers all of our questions and never makes us feel incompetant. She is just amazing at what she does, and I am so thankful that she has been the coordinator that has been placed with us.

5) Debbie - I received a phone call last week from a fellow mom of a child that has Biliary Atresia and Rubenstein Taybi syndrome. It was an amazing conversation, and just a euphoric experience to know there is someone out there going through very similar challenges to what we have gone through for the past 4 years. Granted, this person has just come into my life, but I hope to talk to her many many more times.

6) Angie - Yes, I have met myself. When I look in the mirror today, I see that I am a drastically different person than I was the day before Emma was born. For the most part I have changed for the better. I am more understanding and compassionate toward others. I am definitely more educated. However, I am also more leary about what the future holds (before I never really thought about the future).....maybe that makes me a better person because I value every day that I have. However, sometimes I wish that I could get just a piece of that naitivity back.

******Above all else....I have met Miss Emma!!! Without her where would my world be? I love her with every piece of my being! I love absolutely everything about her. I would not change one part of our journey if it meant that I didn't have my baby girl to hold in my arms and kiss every night. She is my strength, my hero, my world!

7 Signs of Liver Disease

Only 7 more days (from yesterday...oops), and I thought I would post the 7 top signs of liver disease. Although we are post transplant, we still watch for these signs as they can be signs of rejection:

1) Light colored poo....I know that poo is just what everyone want to hear about, but that is the truth. Emma's was almost white pre-transplant.

2) Jaundice skin...this is the number one thing that people usually think of when they think of liver disease.

3) Hard, distended abdomen....as the liver becomes more ill, it tries to regenerate itself. It will literally add onto itself. If liver disease is progressing it will kill off that part also, but the liver will still try to regenerate. That makes for a very hard and big tummy. Once the liver gets to an advanced stage of cirrosis then it will start to shrink...never to regenerate again.

4) Lethargy...when any organ is not functioning correctly it makes your energy level become lower and lower.

5) Vomitting...as the liver gets larger it pushes on the other organs. It also makes processing food become more difficult which can lead to increased vomitting.

6) Elevated LFT's....The liver function tests in your bloodstream become elevated.

7) Itchiness and bruising - both signs of progressed liver disease.

Obviously, only one of these may or may not mean much, but when your child has ALL of these...it is a frightening road. Being post transplant causes increased anxiety anytime I see any of these signs. However, if I do see any, it helps me to know that I can get her blood drawn and know if it is liver related or not.

8 Easy (Easier??) things about this life

OK, I got a little behind in my posts....so, now I am going to play catch up! Now, back to our regularly scheduled postings.....

Our life post transplant has become so much easier. There are just so many things that I somewhat take for granted now....although I TRY not to. It's just the longer post transplant we become...the easier it is to put those memories of how difficult life was behind us. So, here are the top 8 things that I think have become so much easier compared to life before transplant:

1) Potty trained!!!- Before transplant Emma seriously had 10 -15 blowout diapers a day (I know TMI...sorry). Life is so much easier in that department:).

2) Medication- For one thing Emma LOVES her medicine, and she now reminds US about her medicine. She is also "only" on 6 medications vs. the 15 that she was on post transplant. Granted, I would LOVE for her to be on less...but...we'll take it!!

3) Oxygen - Post transplant, I had to carry Emma's oxygen around for the 7 months post transplant. I remember the day that she finally came off of it....a weight had been lifted from my shoulders in more than one way. We've had a few pneumonia scares where she has briefly been put back on it, but overall...she holds her own in the oxygen department.

4) Sleeping - This may sound bizarre, but pre-transplant Emma slept TOO much! I cherish the fact that she doesn't sleep much anymore. OK, getting up 4 times last night may have been a bit much, but I love the fact that she has so much more energy now.

5) Eating - Pre-transplant we literally had to force Emma to take her bottles. We calculated every single ounce and calorie that went into her mouth, and then we watch it all come right back out. She vomitted constantly. That along with the blow outs was SO difficult. We just watched her not gaining weight and getting smaller and smaller. Emma weighed 6# 10oz. at birth....she weighed 11 pounds on the day of her transplant, and her liver weighed 2 lbs!!! YIKES!! I look back now, and Emma has come so far in this department (mostly in the last year). She will try anything, and she loves to eat:). Mealtime is so much nicer in our house now. I don't have that fear about WHEN is she going to throw up???

6) Allergies - Emma's allergies post transplant became really bad. She is severely allergic to many foods, and moderately allergic to many others. Those allergies have not become any better, BUT in the last year we have found the right "cocktail" of medications to keep them at bay.

7) Personality - Emma is little Miss Personality....she always has been, but her personality is just shining through more and more every day.

8) Blood draws - Post transplant they tested Em's blood 2 times per day (this was immediately post tx...and she had a central line), then it went to once a day, then every other day, then once a week, then once every other week, then once a month, then every other month, and NOW she only has her blood drawn once every 3 months!! That is AWESOME!!!

However, blood draws are never "easy". I took her yesterday, and they had to poke her 4 times!!! Guess what! They still didn't get enough blood:(. It makes me so sad to see her poor little arms all bruised as the tears stream down her face...and mine! It's been a long time since I have cried at a blood draw. However, yesterday all Emma wanted to do was go to her BFF Brindi's house. We were on our way there, but I told her that we had one stop to make first....when we pulled up in front of the hospital, and I went to get her out of her car seat she said, "NO, Brindi's house". The whole time that they were trying to draw her blood she just kept saying "NO, Brindi's house" over and over again!! Afterward she received 10 stickers, 4 suckers, AND she got to go to Brindi's house! Anything you want baby girl!! You are my tough little princess!

9 more days...9 new worries

Life post transplant has truly been an amazing experience. I often look back at life pre-transplant and the time right after, and it seems as if it could've been someone else's life...and I was a mere observer. Then, reality brings me back to the present. Although life is SO much better than life before "the call", I would not say that our life is "normal" (although...truly "normal" is JUST a setting on the dryer). It is "normal" for us, and I would not trade it for the world. We were told before transplant that getting a transplant was like trading one disease for another. Although we got rid of the liver disease, we now have a child that is immunosuppressed and always will be. So, today I thought I would post the "top" 9 things that we have worried about since transplant. Granted, they are much less terrifying than life pre-transplant, but none the less they are worries for us as parents:

1) Immunsuppression - Emma takes a medication two times every day that suppresses her immune system so it does not recognize the "foreign body" that is her liver and attack it. Because of this we have to be more cautious that she is not around those who are sick.

2) Allergies - Since Emma was transplanted at such a young age and then put on the medication called Prograf (immunosuppresant) it has thrown off her allergy system. She has literally tested positive for allergies to every food that we have ever tested. Our allergist (who we love) has eliminated the major allergens (eggs, nuts, and shellfish) from her diet, however she has spells where she will get hives for days for unknown reasons or have vomitting spells. It boggles my mind sometimes! We are anxious to have her allergies tested again this summer because I think some have become more extreme.

3) Aspiration - Now, whether this is transplant related or not, it is something that we definitely worry about! Emma had always done fine with drinking....until one year post transplant. Her first year post transplant she did fantastic. Then, one year out she began having sinus infection after sinus infection...which turned into lung infections that led to hospitalizations. She would literally be on antibiotics for 10 days...be off for 2 and end up in the hospital again. This went on for a year. Finally, we went to Denver for her annual check up. I mentioned it to her doctors, and they were ready to just tell me it was OK. I was adament that something was not right. So, they did a swallow study, and sure enough Emma was aspirating on thin liquids. Since then we have had to thicken all of her drinks. It is a pain, but not all that difficult. We hope that one day she will be able to come off of the thickener.

4) Weakened bones - Emma has been on steroids for so long that it is questionable how strong her bones are. We have "only" had one broken bone so far (knocking HARD on wood right now).

5) Poop color - sorry TMI, however any "liver parent" knows that the poop tells you A LOT about how the liver is functioning. So, anytime that Emma has lighter colored poop....It FREAKS.ME.OUT!!! However, too much milk or too many bananas can also cause lighter poop (there's some food for thought:).

6) Blood draws - Even though we are down to getting blood drawn every 3 months....and they alway look excellent, I still get that high anxiety feeling until I get the results back from the blood draws. There is ALWAYS the chance of rejection. The further out we get the more confident I feel....but I don't think it will ever be a laid back event to get her blood drawn.

7) Teeth - Being extremely jaundice when the teeth are forming leads to....you guessed it....yellow teeth!!! Also, being on so many different medications and vomitting so much have not helped. Therefore we see a pediatric dentist. We will be seeing a new one this summer in Denver. I am frightened of that day.

8) Mom's sanity - LOL....I always wonder about that one:)

9) The thought that we are never promised another day with her. I know that sounds odd, and I know even with a totally healthy "typical" kid you never know what will happen tomorrow. However, when your child has been through so much, that fear just looms in the dark shadows all of the time. I wish that it would go away. Or do I? Would I value every single second as much as I do now?

For now I just take it one day at a time, and I cherish every single moment. Life post transplant is not simple....it is not easy....BUT, it truly is WONDERFUL AND AMAZING! I would not trade one single day of the life that we have had with Emma, and we look forward to many many more anniversaries to celebrate in the future!

10 days until Emma's BIG day

We have 10 days to go until we will celebrate Emma's 4th transplant anniversary. This time of year is always a time of mixed emotions for me. The memories that come flooding back are so clear, yet the further we get away from transplant I notice that many of the bad memories are beginning to fade allowing only the good ones to surface. I think this is the first year where I have not felt the anxiety at this time of the year that I have felt in other years. This year I just feel joy at the fact that our little princess is here with us today. Not a single night goes by that I do not go into Emma's room after she is asleep and thank Angel Claire (Emma's donor) for giving Emma the gift of life. My heart goes out to her family at this very difficult time. In a time where we are celebrating our child's life here on Earth, they are watching another year pass by without their precious daughter. Claire would have been 21 years old this year. She was an amazing girl, and I know that she is greatly missed by her family, friends, and community.

It's 10 days until Emma's 4th transplant anniversary. Today, I thought that I would share the top 10 things that Emma says that melt my heart. The fact that Emma is talking, just that simple fact, is truly enought to melt my heart. We were told when Emma was 6 1/2 weeks old that she "Would never walk or talk"....boy, was that doctor wrong. Here are my top 10:

1) When we say, "I love you Emma"....she replies with, "Too... Mom and Dad and Dogs and horses......(and whatever else it is that she loves that day:).

2) The way she says "Thank you" anytime that something is given to her. She has such great manners.

3) When we are giving her medicine, and she thinks we are giving them to her too quickly she puts up her little hand (as if to say stop) and she says, "Wait a sec".

4) She puts her big baby doll in the baby's crib and says, "Quiet, baby is sleeping, shhhhhh!".....this one will be a good one for the months ahead.

5) "Emma go to school now???"...she always loves to go to school.

6) "Idol...girls sing"...she is still American Idol's greatest fan. Maybe one day we'll see our little rock star on there. When the girl's sing, Emma always picks up the closest "thing" to be her microphone and she sings along with them.

7) "NO, down dogs....P.U"....I guess this is an example of what her mom thinks of the dogs...oops!

8) "I read like Mama"....anytime that I'm reading on the couch, at the table, in the bed, ect. Emma will get a book or a magazine and read next to me.

9) When I asked her to "Stop it" the other day, she looked at me and said, "NO, you stop it!". Yes, a little sassy, but I love it!

10) My favorite...we've been talking about friends a lot lately. So Emma said, "Mama's my best friend". Yes, she knows how to melt my heart.

Love you little one! Can't wait to celebrate in 10 more days! You deserve ONLY the best!

Signs Signs Everywhere Signs

As I become older...and wiser (LOL) I have come to realize that our entire journey is pre-planned. It's all layed out in front of us, however it is not available for us to view...nor would we want to. However, lately I have had the time to ponder the idea that if we truly look at our suroundings and pay attention to the people, landscape, and events that are happening around us, then we might just catch a glimpse...just a brief view of what is to come.

I have many examples of how this has happened in my life. One that sticks out vividly was the week before Emma was born. It was the first week of August. The temperature had been over 100 degrees for weeks. It was miserable hot, and I was getting bigger by the day (I gained 30 pounds in the last 3 weeks....YIKES...toxemia). I had gone into Wal-Mart, my "usual" hangout...because it was so much cooler in there. However, on this particular day I just could not get comfortable...and I was EXTREMELY agitated. As I was walking into the store, our local NOWCAP (mentally disabled facility) van pulled up and as the people started getting out one of them ran up to me and asked, "Why do you have such a big tummy". Now, normally I would have much more patience, but on that day I was snippy with this man and said, "I am pregnant"...and continued on my mission. I did not have the time or the energy to deal with "those people". Upon checking out of Wal-Mart I got a cashier who we know. She has a son that has a disability, and I was not overly nice to her that day either. It was my world...all about me....and I was having a bad day, so why should I make anyone else's day good, right? Granted, this is VERY out of character for me...but I was miserable.

Looking back on that day, it was a huge sign for me. A sign of the struggles that I would have soon in my life. If only I could relive that day. If only I could show the peole that I encounter how I know that their feelings matter. If only everyone could step back and see "the entire picture" because no matter what your journey may be....we all have difficult times. After I began thinking about that day, I came to the realization that I had encountered many many people/families that had children with medical issues and disabilities throughout my entire pregnancy. Many more than I typically encounter. I believe this was my sign, and the way the families dealt with the circumstances was my life lesson and my "glimpse" of things to come...unbeknownst to me.

In my current situation (pregnant with my 2nd child), I try to be more aware of my surroundings. My "signs" have definitely been there throughout this pregnancy. People that I have known for quite some time and consider good friends have come out of the woodwork to tell me about a time in their life that I did not know about. One of my friends shared with me the first child that she had 40 years ago. The child was born with many complications and only lived for 5 hours. Now, you may ask HOW this helped me. However, my friend went on to tell me about her next 2 children. While she had been very scared throughout both of her preganancies, she went on to have 2 very healthy children. Amazing that I have known this woman for 10 years. I consider her I good friend. I've worked with her. However, she knew the perfect time to share this story with me. This was my sign.

There is another family in town. I do not know them well, but they have also been a beacon of hope for me. They have 2 grown boys. Their oldest has severe autism, and their 2nd child was the validictorian of his graduating class. Their love for both of their boys is visibly seen. They treat them both with the utmost respect, and they've raised them to be strong citizens in our community. Their younger boy is everywhere that I go lately. I see him in the store, at our school speaking to the older kids, I pass him on the street often. This is my sign that things are going to be OK.

Yesterday, was the most amazing sign! A mom was placed in my path to share her story with me. I cannot even begin to explain the feeling that I felt when hearing her story. It was like a neon flashing sign saying ALL IS WELL....BE HAPPY. I have felt so much lighter since that encounter, and I will be forever grateful to that mom.

Our universe is a mystery that none of us are meant to "figure out". We go into our future blind folded in so many ways. However, if we just become more keenly aware of our surrounding, I believe there are times that we can catch a glimpse, a simple sign, of what lies ahead. Becoming more acutely aware of those signs may just help us to endure those difficult times, and help us to celebrate the joyful times.

Laugh or Cry....Right or Wrong?

In an attempt to find the straw that broke the camel's back, I'm truly TRYING to find humor in every situation. In the end it makes us stronger right? It's all character building....BLAH BLAH BLAH. Then, in the next thought I have a little pitty party. A little whoa is me....why is this happening...why did THAT happen? Only to be followed up with a brief river of tears (I keep telling my husband that they make pregnant women drink more water because they cry ALL OF THE TIME), only to be summed up with a fit of laughter. Some call it hormones. Some call it craziness or maybe borderline bi-polar disorder. I just like to call it life, and right now I have WAY too much time to think about every aspect of it.

An example is the thought of sending Emma to Kindergarten next year. Are we doing the right thing? Who would know what the right thing is? Then there's the thought that the school district thinks they get to decide where MY child will attend school. Yes, all other children in our district (OH, that's right...only the one's that DON'T have special needs) get to choose the school they would like to attend. However, since my child was born exceptional in so many ways...which has also caused her to endure so much more than so many other children her age....but, YES please do tell ME where the "best" place for her to go to school would be. See, I teach Kindergarten at a rural school. I generally have 10 children or less in my class, and we have a full time special ed teacher in our school. Yes, Emma WILL attend the school where I teach. THAT is the best place for her. NO ONE else needs to decide this. However, as I anxiously wait for the school district to complete their observations and evaluations on my child my anxiety over the situation continues to rise. I continually work "my case" out in my head....getting ready for the "great debate" that will hopefully never have to take place. However, I have found that it is our job as parents to fight for every single thing that our child deserves. WHY??? Why do we constantly find ourselves jumping through hoops (that sometimes feel like they are on fire no less) for things that are obviously best for Miss Emma?

Then, we have Emma the Exorcist. Yes, it makes my child sound demonic. However, lately whenever it is time for bed our child turns into someone that I have never seen before. I swear that her head is going to start spinning around soon. I believe that I have already caught a glimpse of the red eyes glowing in the dark as she throws toys at me and yells NO at the top or her lungs. It's not a pretty phase, and I do hope that it passes quickly because it is STRESSING ME OUT!

Then, we have the insurance case worker who has to call once a month to check on "Emma's status". She somehow caught wind that I am on bedrest, so today she called to 20 question me.....about ME! I had to chuckle just a tad when asked, "Is there anything that is causing you stress right now". HA!!! Funny lady:).

Ahhh, this is so theraputic. I can just feel the stress melting away:). Next, we have my husband who continually is gone on business trips. Granted, he is generally just gone a couple of days a week, but dealing with everything right now is just a tich too much. Next week is the last time that he will travel out of town until after Baby Boy is born. Can I hear a HOOORAAHHHH!!

Some days it just feels like I have one nerve left.....and it's wearing pretty thin.

3 hours later

Yes, I am still sitting on the couch, but it's been 3 hours....so, I thought it would be a good idea to post again. I just had my house cleaned. THAT is the nicest thing someone can do for you:). Apparently, someone has paid the cleaning lady to clean our house from now until I have this little guy. It is just so refreshing to have a clean house to sit in. We also have people bringing food every other day. It's difficult for Tim and I to accept so much from other people. We worry that we don't reciprocate enough, and it's difficult to be the family AGAIN that is in need of support. But, I know the time will come when we can do the same thing for others. Thankfully, Emma is at the sitters. I had her with me yesterday afternoon, and although she was very good...she still just does not understand that Mommy can't get up and play with her. It's best if we try to keep her in a routine.

Hopefully, this weekend will bring the transformation of the baby's room. Tim is planning to paint the walls. We moved Emma from that room to a bigger room last summer, but we never moved her closet. So, that is on the agenda for this weekend also. Then, next week I will begin to paint the mural on the wall. I am going to paint a big frog that is holding a sign with 3 boards on it. On the 3 boards I will write his first, middle, and last names. Then, we will put brown burlap up around the top of the room as a border. I'm excited to get things moving. I think that will make it all so much more real for me, and it will help me to see a "light at the end of the tunnel"...the couch tunnel. I've been going through baby clothes that we have been given, but until I have somewhere to put them...it still seems so foreign, like I'm just playing with dolls.

Here's an Emma funny.....I've started telling her that the baby is going to sleep in that room everytime we walk by. Yesterday she said, "No, baby mom!". I said, "Yes, he's going to sleep there". She said, "NO, THERE!"...and she pointed at the garbage can:). It could be interesting to see the adjustment when the baby comes.

Joys from the Couch

I know that I keep saying that I am going to post more on this blog....then the times get fewer and farther between. However, I should have PLENTY of time to post now. I am officially on Couch Arrest for the next 7 weeks. I would love to think that it will not be that long...but, at the moment that is what the good doc says. So, I am eagerly searching for ways to keep myself busy. Today, the best thing that I came up with was making a paper chain to count down the days...now THAT does sound like fun, doesn't it? I know that's what you're all thinking. I could write a book?? How about a book about how to make your ass larger while sitting on the couch for 7 weeks. Oh, and did I mention that I've already been here for 3...so, let's give a big HOOOORRRAAAHHHH for a full 10 weeks on the couch, on my ass, watching it get larger and larger and larger with each passing moment. It's all for the good of the baby. I keep reminding myself of that. I would rather sit on the couch in the comfort of my own home rather than be in the hospital on bed rest....OR, with a baby born WAY too early in the hospital. So, here I sit coming up with CRAZY thoughts of how to occupy my time. Any suggestions would be greatly appreciated. I may start counting how many rice grains we have in our box of Minute Rice soon:).

Dear Baby Boy....

I cannot wait to see your face! In so many ways I can't believe that it will only be 3 more months....and in other ways I can't believe that I have 3 months left. I think it will go pretty quickly from here on out. However, until that day I cherish every time that I get to "see" you and every time that I feel you move. Here is your amazing little face (that's the cord in front of your neck)

The moment that I look the most forward to is seeing your sister when she meets you. She is so excited about "the baby", and she is doing a fabulous job "practicing" her mommy skills on her babies. She is going to teach you so much about this world...and she is ready too:).

I've been looking at photos lately. The only pictures we took when I was pregnant with Emma was the day before we had her

not a pretty site. I feel so much better this time around, and I hope that it continues!

I can't wait to meet you Baby "O"!!!

Love,
Mommy

Liar Liar Pants on Fire!

OK...so the last time that I posted and said, "I was going to post more frequently" was in October. I truly have intended to post more often. However, it is amazing how quickly time can fly....and how slowly it can creep by in other areas (i.e. pregnancy). Well, here is the post you've all been waiting for:)....OK, I doubt that I even have anyone that reads this anymore, but I am typing so I can remember these times.

I am currently 23 weeks pregnant, and I am still scared as can be that the "other shoe is going to drop". You name it...I've worried about it. Everything from this baby coming too early, him kicking too low, Oh...I haven't felt him in a few hours, my husband not finding me attractive and finding someone else, Emma getting sick in the middle of all of this, Emma dying (oh, how many times I've planned my sweet girl's funeral in my head....I HATE THAT!). It is all dumbfounded...there's really no explanation for these thoughts. However, they are there. They are real, and they scare the crap out of me!

I have always been a worry wart, and the last 4 years has just made me more aware of how precious life is...and how quickly it can change. My life right now is AMAZING! Emma's doing awesome, my husband and I are more connected than we have been in a long time, so WHY of WHY do I allow my mind to wander to the what-if's? That's the question of the day, and I do believe that I have the answer to that question. I am afraid that if I get too excited about things....then I will be let down when things don't turn out the way that I had planned. Yes, it is a pesimistic attitude to have. But, I am afraid! I'm afraid to be excited. I'm afraid to be happy. I'm afraid to think of a future with a new baby that is healthy.

Do I dream that that is what is going to be? YES, YES, YES! I pray that this baby (who we know will be a boy) is going to be 100% healthy! I just need to see it to believe it.

I've had the "high risk" ultrasound with the most amazing Dr. He has told us that all is well with our little boy, so why can't I just take those words and be excited?

As Emma would say, "SOON". Soon I will know. Soon I will hold our baby boy is my arms and allow my frightened tears to leave my body and fall onto him. As they fall they will turn to a blanket of joy and I will know that our future is good. SOON!!!

Crystal Ball

Wouldn't it be amazing to look into a crystal ball, and see just a tiny glimpse of our future? Or would that be so frightening that it would make us turn and run the other way? If I could see the future....would I change it? Would I change who I am destined to become? Would I dodge the obstacles that are ahead, and would I be happier if I did? These are the thoughts of a person, a mother, a mother of a special needs child, a mother of a special needs child who is expecting another miracle to be born into her family in 7 more months, a mother who is petrified of what the future will be, yet a mother who can look at the past and appreciate the obstacles that she has taken head on and made it, a mother who plans to continue to move ahead and see the future that is planned for her and enjoy every moment of it.

We have talked about having another child for the past 3 years (Emma is 4 now). We both have known that we wanted another one, and we've been reassured that what Emma has is not "genetic". That made the decision easier for both of us. Neither of us wanted Emma to be an only child, and she could learn so much from a sibling. We have been trying to get pregnant for a year, and I knew that when I got pregnant this time I would not be nervous. I was just going to enjoy pregnancy and know that the outcome would be wonderful. WELL, here I am 9 1/2 weeks pregnant.....and I am scared out of my mind!!! I try not to be. I mean I love my child with all of my heart and soul, and I am so looking forward to a new life coming into our family, but the naiveness that I had when I was pregnant with Emma will never be returned. I feel like I have been robbed of that. Every little thing that doesn't feel right freaks me out. I know what CAN happen, and I just cannot let that go! I have tried different things, but my subconscious mind continues to go back to those first few weeks with our beautiful infant daughter and all of the things they continually told me were "not right" with her (I refuse to say that they are "wrong" because she is EXACTLY how SHE is supposed to be).

So, I've decided to come here more often and journal my thoughts. They may seem crazy and irrational at times, but I will get through this. In the end that Mother inside of me will see the future and all that it has to offer, and I will enjoy every moment of it.

Random thoughts....

So, I know that I have been bad about updating the Blog lately, but with things changing in our lives minute to minute....it is difficult to breath....let alone BLOG:). Many changes happening in our little household. About 4 weeks ago I found out that I was pregnant....we were overjoyed. About a week later I was told that it was probably a tubal pregnancy....we were so sad. About 4 days after that TA-DA....suddenly the pregnancy is there....in the uterus....right where it is supposed to be. OK, so there was a surgery, the possibility of twins, and some other things thrown into that whole week, but PHEW! Am I ever glad that THAT is behind us.

I am now 7 weeks pregnant! We are thrilled beyond belief, and Emma is loving "giving the baby (my tummy) kisses". She is just adorable. I'm pretty sure that she has NO idea what is happening, but she came up with the kissing the belly idea on her own. It's very cute.

Emma started pre-school again last week, and on the first day only had to go to time out.....TWICE!!! Yep, I'm feeling like parent of the year! However, I'm so glad that they did that because Em is really in a button pushing stage, and if she thinks she can get away with it and you aren't going to do anything about it....WATCH OUT!!! So, they let her know who's in charge, and she's done awesome ever since:).

I know this is brief. I will post again soon! Just had to jot down the little "happenings" in our world:).

Mary Poppins....at your service

I recently ran into a little snafoo while traveling along my road of life. Emma's babysitter of the past 4 years informed me that she would like to only work part time, and she asked that I find someone to watch Em 2 days during the week. I honestly felt like my world was spinning for at least a week. I felt like I had been hit in the stomach. I wracked my brain trying to come up with a person that could watch Miss Em. You see....it's not that she's difficult to watch (OK....maybe just a "little"). The child has allergies that could make many people scared just hearing about them.....and she has food issues. She also has limited speech...which made us uncomfortable with sending her to a larger daycare center. AND, oh yeah....she's immunosuppressed. Just hearing about Emma could make any prospective babysitter run for the hills.

So, Tim and I set out on the journey of trying to find a part time babysitter. We went to a larger daycare center (20 kids every day), and they said they would take her. The lady "listened" as I told her all about Em's allergies and the fact that she needs her liquids ALL thickened (she "listened" as she typed on her computer, answered the phone, and disciplined a child). We left there feeling much less than OK with taking Emma to that center....but, was that our ONLY choice??? I called our wonderful babysitter of the past 4 year and begged her not to make us take Emma to that center. She was appauled at the idea that we would even consider taking Emma there. She kindly said, "If it's meant to be it will happen. Even if it's 6 mths down the road...that's OK. I'll take her every day for as long as you need me".

2 days later I received a phone call from a school district employee (I had e-mailed everyone in the district to see if anyone knew of a person for me). Her daughter was interested and she wanted to know if it would be OK if she gave her daughter my phone number? Well....let me see.....YYYYYEEESSSS!!

So, we met the babysitter and her 2 year old little boy. We immediately liked her. She actually asked if she could dress Emma AND do her hair in the mornings??? UM....yeah:). She said she has always wanted a girl. She started watching Emma EVERY day starting last Monday. Our other babysitter is bummed to not have Emma at all.....but this is what was meant to be. She was exactly right. I guess I need to listen to that advice in all areas of my life:).

Emma loves the new sitter and her little boy, however sharing her toys has been a bit challenging. She is into hitting....and that's a no-no....she'll even tell you that....right after she hits you:).

Yesterday I got home from work and I went to get something out of Emma's drawers, and guess what I found???? Our very own Mary Poppins babysitter had organized all of Emma's room....even down to the hair jewelry (and let me tell you....the girl has a TON!!!). Can I hear you say YYIIIIPPPPEEE!!! Now, I'm just wondering if she can do the whole house???

Happy 4th Birthday Princess Em

Dear Emma,
I cannot believe that you are 4 years old today. I look at you and I am in awe with what an amazing person you are. Your love for every person that you come into contact with is so reflective in your eyes. You have the purest soul of anyone that I have every met. I learn a lesson from you every day about the way that I need to look at the world and treat others. You are kind to everyone, and you think that all people are good. What a wonderful world this would be if we could all think that way.

In the last year you have become potty trained, you've gone to pre-school, you have learned to jump higher and run faster, and you have developed a love for purses, make-up, cell phones, and jewelry that even Paris Hilton would be intrigued by. I'm amazed at your independence. You have found a BFF (best friend forever) at pre-school named Brindi, and the two of you are inseperable. I love to watch you and Brindi interacting. The games that you come up with are really amusing.

My favorite time is still at night when you are so tired. Even though you tell us you are not tired...your poor little eyes can barely stay open. When you crawl into my lap and ask for a story to be read to you how can I resist. If I am really a lucky mama...you fall asleep on my lap with your head on my shoulder, and I realize then exactly how sweet life is.

I look forward to many more years with you my strong little princess. You have overcome obstacles that most of us will never encounter in our lives....and you have won! Keep on reaching higher every time that bar is raised. Never let anyone tell you that you can't. You are my hero, Emma and I am so fortunate to be able to say that I am your Mom.

Love you with all of my heart,
Mama

This was at your party yesterday. My heart was so happy to see you sitting with your little friends and eating....what amazing progress you have made in a year!


Your new little fake smile that you give me any time that I tell you to say "cheese"! This is how you smiled for the camera all day yesterday.


Here's your Dora cake that Mama made. I know that she doesn't have any feet....whoops! You loved it anyway!


Blowing out the candles....I hope that every wish you ever make comes true!

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:).