Thursday, February 28, 2013

Family History

Besides all of the heart attack deaths on my mothers side of the family (her father died when she was young of a heart attack, just to name one person)...I don't know if it was related to undiagnosed congenital heart disease....but I do wonder. 

Congenital Heart Disease in my family:

-Cecilia has: Hypoplastic Left Heart Syndrome
-Rusty (my cousin) has: Transposition of the Great Arteries
-Jenny (my aunt, and also she is Rusty's mom) has: Anomalous Origin of the Right Coronary Artery from the Left Coronary Sinus

Cecilia sees her Cardiologist next week, and as long as all things are stable for her, I hope to pursue arranging to get the rest of my daughters hearts checked out.  Karl's heart is fine... he has had it checked this past summer.  I will eventually get mine looked at, probably later this year. 

Tuesday, February 19, 2013

Heart walk DC area

A couple days ago we signed up for 2 heart walks.  One of them, on the Eastern Shore for the AHA, has already been disabled and converted to a different fundraising event.  So we will no longer be walking on the Eastern Shore. 

But, the Congenital Heart Walk in the DC area we are still going to, and very excited about it!  And I know of a few friends also going with their CHDers... it will be a great day to see them again (or finally meet them in person)! 

This is our team~  ♥Cecilia♥  consisting of all 5 daughters, myself, and likely my Mother in law, Bernadette.  If you want to help sponsor our team for the Heart Walk you can do so here.   The money raised goes to The Children's Heart Foundation, and the Adult Congenital Heart Association.  This is the link to the main page of this heart walk if you would like more information:

Please join our team and walk with us, OR make your own team and join the walk with other families effected by Congenital Heart Defects, OR help us reach our team goal of funds raised.  ♥

Sunday, February 17, 2013


 The bigger the problem is, the longer the struggle lasts...

Sometimes I feel like this journey of life gets the best of me.  It tests me in every way imaginable, and maybe I'm failing.  I'm at the mercy of opposing forces...A Destiny or Direction I have little to no control over.  I feel like I'm being dragged through time...clinging weakly to whatever I can hold onto.  A Dream.  A Wish.  But this is unrewarding.  All that reassures me is but a simple smile.  My family- my daughters.  They are it ♥.

I used to love it when "life" was out of my hands...When I didn't know and I didn't care what tomorrow would bring.  When the uncertainty was thrilling.  It was a familiar freedom.  But now...Nobody can honestly tell me everything is going to be OK. 

I was sweeping the floors, and I thought, as I often do, how badly we need new floors.  I thought Karl and I can eventually do them together.  Then I remembered the DIY flooring job we did in the girls bedrooms (it was a fail).  My Dad is great at doing floors.  But he is dead.  And just like that-- I'm broken.  It's a moment of uncontrollable pain I can't escape.  I did it to myself because I remembered.   Instantly, I think of the last time I saw his face.  It is the image I always see anytime I think of him.  It takes me back to the room in the back of the funeral home, so me and my sister could say goodbye before his cremation...  A very large room meant for a formal viewing.  Except, we could not afford a viewing.  There was nobody there but us.  Nobody mourning his body and missing him.  A huge room with nobody but us...and so much negative space.  And just a wooden box with dad inside and a sheet over his naked body.  We couldn't afford a "real" casket.  The woman arranged this "viewing" for our closure.  It was just so much space.  Walking towards him felt so far away.  He was really frowning.  His frozen facial expression of hopelessness haunts me...  But only when I stop to think about it.  When I think about him.  So I try not to do that.  That is my answer to this problem.  To this pain...  Is just to avoid it. 

People always compliment your strength anytime you are faced by tragedy or go through a difficult process.  In some ways, I understand it is an attempt to comfort you.  I don't feel strong.   How can I be if I have a mini breakdown with no warning and no purpose? There's always some painful memory teasing me...Scratching and clawing it's way to the front of my mind.  If I just stuff it back far away where I prefer to keep it, that is not strength!  Maybe, really,  it is being a coward?

Anytime I feel or experience something unpleasant, and I don't understand, I feel desperate to know "why".  If I understand it, I can prevent it.   I think my situation with Cecilia has distracted me.  On his one year anniversary of death, she had a failed extubation.  That pain of my child's struggle outweighed it.  She had her Gtube surgery the day prior to his birthday.  The fear and unknown of what was wrong with her outweighed my pain.  On the day the person responsible for his death was convicted, was the day following my close Heart Mom friend burying her daughter, Anya.  This situation, again, distracting me... and demanding my full attention and energy to keep it together.  I couldn't process any of it because I wasn't strong enough to take on anything else.  In a way I'm grateful because I don't want to remember that he's gone.  I don't want to be angry the way my brother is.

 This is a scanned version of an old (but appropriate and relevant ) note my dad wrote me when I was a teenager. 

When it is a new day, and the girls are awake, and everything is loud...I will be distracted.  But they will smile ♥.  And nobody will know that I couldn't sleep last night, but me.  And still, that is not where I can identify strength.  It can not be compared.  I can say with confidence that Cecilia and her heart friends have gone through more than I have.  More struggle than most!  And right there is where I recognize strength.  And truth be told, a resonating guilt now in my mind, punishing my heart for feeling like this when what my baby is going through is worse than what I am. 

Tuesday, February 12, 2013

the weekend

Gina Raye-  my Gigi -"Sunshine"

Julia Rose ~ "Julzie"

A couple weekends ago, Karl went home to New York to visit his family because his close cousin Kat has been fighting cancer and its not good :(.  Kat gave him this picture she took of our family a couple years ago.  I LOVE this picture! ♥  It is rare for us all to be together in a pic ♥   Sophia was our baby, and about the same age as Cecilia is now. 

♥♥ Karl + Sophia, Me + Anastasia, Gina + Julia ♥♥

Saturday, February 9, 2013


I have a scrambled post, bear with me. Feb 7th was Julia's 6th Birthday, and my 27th bday on the 8th.  It's also Congenital Heart Defect Awareness week.  Anyway, Julia's 6th birthday we have not technically fully celebrated yet.  It's hard for us financially because Anastasia's birthday is also this month (she will be 5!).  I dont typically do anything for my birthday.  We did eat cake and do a few presents for Julia though.  We are going to the Eastern Shore tomorrow to have dinner and spend time with my In-Laws.  I am so excited!  I also have began planning ideas for Cecilia's first birthday.  It probably sounds ridiculous to begin planning so early, but I have never thrown such an epic bday party before!  I dont want to mess it up!  The only thing about it that is set in stone for sure at this time, is Icing Smiles has agreed to make her a Dream Cake.  ♥



Cecilia is so clingy.  I really love that she has to be touching my hair, or caressing my hand, or bounced and danced in my arms, so don't mistake this for a complaint ♥.  I think I love it so much because she suffered withdraws until she was 2 months old (give or take).  That was very hard at times being rejected by her.  I literally avoided holding my baby sometimes even though I desperately wanted to, because I learned that she didn't want it.  Now she cant get enough of her Mamas love and attention.  ♥
 Cecilia comes back to the Cardio in one month for an echo and we discussed also getting another type of ultrasound done to make sure she doesn't have any tiny clots.  The leg where she has had her caths before has a much weaker and harder to locate pulse than her other leg.  So I thought she would have discoloration in her legs, or a size difference if she had a clot (because that is our experience with clots) and he said not necessarily.  We might also be doing some kind of test to see if she has a blood clotting disorder in the future, since she has not had this test to my knowledge.  If it was positive, Cecilia would have to stay on Lovenox injections for life.  I'm thinking he was not too convinced there would be any clot, because otherwise we would have the scan sooner, so I dont expect her to by any means.  The only other eventful thing from her check up this week was that the pulse ox is a big difference on other extremities.  Like 88 on her right hand only, and low 70's everywhere else.  I'm not sure if thats normal because prior to 2 weeks ago I could read her in the 80s regularly on her feet...  I think it might also have something to do with why he wants to check for clots.  IDK