Mother's Day

Yes Gracie you were on minds today -both mine and your Mother's.  Last year was her first Mother's Day with you and this is the first without you.  Last year on Mother's day you were in the hospital - I bought you some toys since you were a little bored  - we suspect you were teething also.  You ate like a little piggy - we laughed at the amount of formula you drank.   Then you relaxed and went to sleep - Then I took Katie and Michael out to dinner, thought it would be good to get them away for a little bit...finally found a restaurant after wandering through the town we didn't know. 

When we got back you were resting but woke up some - you were having the MRI the next day.   You wanted more to eat but they wouldn't let us feed you because of the test, so you were a little fussy and making the one nurse a little nervous since you were upset and getting a little clammy feeling.  But we finally got you calmed down, I rocked you to sleep.   The next morning was your test and we held you for the last time, while you were wake.  When you returned from the MRI you were on a ventilator and your heart/lung was in great distress - that test took so much out of you. 

I have always regretted not spending every minute with you that day - we just didn't think it was our last chance at seeing you awake, happy & smiling - We labeled you the princess of the ICU since the nurses had been taking you for walks in a stroller and putting ribbons in your hair and stopping by to talk with you.  All of the other babies there were very small and not in a condition to be able to do that.   I am so sorry we left you for awhile that day and have wished so many times for those few hours and minutes back - even if only to watch you sleep, waiting for you to wake.  I would never have given up that precious time with you if I had known.  I have always felt guilty about that. 

We watched all the other Moms that day come and spend time with their babies and my heart was saddened for all of them.  It was extremely humbling to know that everyone there needed a miracle and you prayed for all of them even though you did not know there names.  One of the mom's said goodbye to her baby that day and another child was brought in w/brain cancer, but miraculously survived 19+ hr. surgery and recovered.

It was a heartbreaking place and a miraculous place and those that work there have my utmost respect and admiration. 
                                                                                   Mom (Katie) & Gracie on Mother's Day 2009
Your Mom, brother, Papa and I went out for dinner today.... we brought you with us in our hearts and minds.

We love you Gracie...always and forever!!                                

11 Months....

Tomorrow Gracie will have been angel for 11 months -   One year ago today Gracie was rushed to the hospital from her doctor's office - she was in for a regular checkup and they heard a heart murmur and she had low oxygen.  We were scared and confused and had no idea how life was going to change.  They couldn't hear her heart murmur at the hospital and they said that was "normal" with babies - but they sure didn't know why her oxygen levels were low......  We wouldn't know until the following day.... Gracie did not want to be in bed, she wanted to be held - she was bigger now and wanted to be moving  or a minimum be held- this was a big difference then when she was in for RSV -   We sure didn't any answers on this day - so I went home and looked up on WEBMD - low oxygen for infants and it immediately indicated a heart issue - that quick and the hospital wasn't sure?  

They did a ecocardiogram the following afternoon.... Gracie did not like being still...finally after singing and rubbing her head she fell asleep and after 90 minutes - they asked us to go in to a different room... I knew then it was serious, but still clueless as to how serious it would be.  What I remember is just before the Dr. came in - I went back in to Gracie's room and I heard an intern turn to the cardiologist and say - how did we miss this when she was here before?  My fear increased at that moment and when I went back to the other room I took my daughter's hand...and waited.   

I remember that the 2 doctors came in and then then the nurse with a Kleenex box - the lump in my throat grew.    The doctor drew a heart and explained that she had 2 holes between the upper chambers - I knew this could be fixed and waited for more news.  Then he said - I am not concerned with the 2 holes, actually it is helping her right now.  The arteries in her left lung are extremely small and she has sever pulmonary hypertension -  and then he said, there is some medicine, but it is very severe and there is no cure....  We will send her to Uof M - Mott children's hospital.  I am sorry but it doesn't look good.    We didn't even know what questions to ask - we simply held on the heart drawing, cried, held on to each other  - We were in SHOCK - speechless.   Then we walked back in to Gracie's room and looked at this sweet baby and wondered how, why.  We wanted to grab her and run - like that would make a difference.  How could this happen.  I had to have hope and I had to give hope to my daughter. 

This was the beginning of our journey to say goodbye.  I am amazed that 1 year later and I can still feel it like it was this minute - the shock and disbelief.   I fully understand that people can only take in so much during these types of situations - we just didn't ask a lot of questions and felt dumb at not knowing what to ask or say.  Hoping they were wrong - this could not be happening - these horrible things are the things you read about and they happen to other people - but now it was our journey to take.   


The 1 year anniversary is approaching fast and I find myself resisting it as much as I did her 6 month anniversary and birthday.  Amazing how raw the pain can still be at times and I am always left with that it feels like forever and it feels like yesterday at the same time. 

Most people think it is morose to relive these memories - but you can't help yourself and it would feel very dismissive/disloyal/ etc. to not remember.   But the truth is that you don't have to work to remember you just do - it is always there and will be always.

Gracie you are loved and missed daily - always and forever.  Fly with the angels.

Time....

Time is a funny thing - sometimes it goes by slowly, almost never ending or so it seems.
Then time can go so fast, that events, life and people are gone way before you are ready for it to end.
There was a time when we held you in our arms and kissed your sweet face.
Now we hold you our hearts and look at pictures of you. 
There will be a time, when we be together again and then we will really have all the time we need.

So the question has been asked - why do always say   "always and forever"  -  I whispered this to Gracie every day while she was in the hospital and promised that we would love her and remember her... always and forever!!