Saturday, January 22, 2011

The Deep Dark Post

I am so frightened.  Sometimes I can’t believe this is my life.  Sometimes, the overwhelmingness of it all makes it hard to breathe.  I feel like someone is sitting on my chest.  I wonder how we will ever get through this.  I wonder if we ever will.  I try so very hard to put on a brave face, and smile and enjoy this life and each and every day because I know its what I am supposed to do or expected to do.  When really all I want to do is cry, yell, scream.  I am angry, I am angry that this happening to me, to Mike , to Patrick and  most  of all I am angry that this is happening to my sweet sweet baby girl.

I don’t know how to express these next feelings, other than  Mike I feel very alone.  I feel like no one else understands or wants to understand what our life is.  Not to say we haven’t been shown some amazing support .  Because we have, and were are forever thankful for that.  I mean more like there is a disconnect.  As I said I don’t know how to explain it.  It’s just lonely.  Which isn’t anyone’s fault if anything its my fault, I have pulled a way a bit recently and hope to face the world again soon!

Mike and I have had to make sacrifices because of the hand we have been dealt.  Those sacrifices come in various forms.  We have sacrificed friends, and sadly some family because they just didn’t get it and just couldn’t understand where we are and what we are facing each and everyday.  The old saying holds true, when tragedy hits, ( I hate to say tragedy, but I guess when you are faced with the unimaginable) you really do learn who your friends are.  It has been a huge awakening to us.  People who we thought would be there for us, surprisingly weren’t.  I was enlighten to learn  just how truly selfish some people are, and you know what we are better for it.  A LOT of our time is filled up with doctors appointments and such, our time is valuable and I would much rather be spending it with those that truly love us, so that is what we do.

Sometimes like tonight, or should I say this morning  since it is 3AM and even though I should be sound asleep (sadly, I don’t think Ambien is working any longer) I wonder how we will get through this, and I find myself willing the phone to ring, with Transplant on the other end, telling us they found the perfect heart for our princess, since the heart I gave her, the heart that grew inside me was not perfect and has failed my girl, has failed us all.

And even though the thought of transplant and all its associated risks scares me, the uncertainty of when this heart she has is going to stop working scares me more.   So once again, I am forced with not choosing the best most wonderful option, but the lesser of the evil. 

But, I know tomorrow will be filled with laughter, Mickey Mouse Club House,  lipstick, and potty dances!

I know that 95% of my day will be filled with normal happy mommy joys!   Until, its time for meds, or I catch a glimpse of her G tube and I am reminded that nothing about this life is normal.

Wednesday, January 19, 2011

My Baby Boy is 2

It sounds so cliché to write this, but here goes. On one hand it’s hard to believe that my little man is two years old, on the other I can’t remember our  life without him.

When I learned I was pregnant with Patrick it was a pleasant surprise, in no way was Patrick a mistake, he was anything but, he was a very welcomed surprise.  Truth be told Mike and I never thought we would conceive a child completely naturally.  Although we had planned to have another child, we had even met with our fertility specialist which is how we came to learn that we were already expecting.  To not have to endure the harsh, trying IVF experience again was such a blessing.

Patrick entered this world at 11:28 on Monday January 19th after a long, but thankfully uneventful labor.  My heart grew that day.  It grew twice as big, as the love I felt for my baby boy was overwhelming.  Since day one Patrick has been such an easy going, laid back, kind and caring baby. 

He has this smile, that will melt your heart.  And a belly laugh that is contagious.

All About Patrick at 2 years old.

Weight & Height… I need to get back to you on.  (Wellness visit is next week)

Favorite Color:  Not sure he has one, so I will pick for him Green!

Favorite Toy: Thomas Trains and anything  Toy Story Related

Favorite Food: Patrick is a great eater… I would have to say his current favorite is: Cheese. 

Patrick, I love you more than you will ever know.  I love your spirit as much as I love your hugs.  You make all of our days happier.  You are an amazing little boy, so smart and inquisitive.  Always looking to see how things work and problem solving, just like your daddy.  You are a kind and caring Big little brother and I am so blessed to be your mommy.  I love you bubba!



Patrick Blog Birthday

Monday, January 17, 2011

A Weekend of Celebrating…

the little man that stole all of hearts almost 2 years ago.

Our little monkey will be 2 on Wed. TWO! My Baby will be 2!  Anyway more on him and his amazing two years on Wed.

Our celebrations started on Friday morning, with a couple friends and their awesome mamas.  Unfortunately, a few of our friends weren’t feeling well,and couldn’t be here.  You were all greatly missed. 

Then Saturday, daddy was in full party mode while I was at school.

Sunday Patrick was celebrated with family, and was cuddled by all of his favorites.  Here are a few (well my idea of a few Winking smile) photos from our amazing weekend. 



Really the cupcakes tasted as good as they look.!


Coffee for the mama’s


Mama Deb  snuggling her most handsome boys!!!


Patrick was loving Mama Jess…( smart boy) She is very loveable!






Friday, January 14, 2011

Embracing this life…


How could I not…


The only thing better than beach pictures are….


Snow Pictures!


Boy, did we get hammered with some snow this week! Which is fine by me.  I think if we are going to have to suffer through the bitter cold, we should at least have some snow to enjoy.


Even daddy had some fun in the snow!


Did you embrace the snow?