Irrational Fear

As we approach the one year anniversary of the Sandy Hook Massacre in Newtown Connecticut.  I am reminded of my biggest fear.  A fear that just doesn’t haunt me because the anniversary is so close by… a fear that has haunted me since the moment Katy started Kindergarten.   A fear from so down deep that it will often wake me up in a cold sweat and has often caused Katy to miss a day of of school because I had an irrational fear that something was going to happen that day. 

You see for 5 almost 6 years I was the constant that could keep Kate safe.  She was safest inside me during utero when the fragility of her special heart was so unknown… I knew as long as she was inside me she was safe. 

At the hospital she was NEVER without Mike or I.  We were always there advocating  for her.  On the rare occasions that we couldn’t be, she was with grandparents who had immediately access to us and those times were few and far between.

Then the horribleness of Sandy Hook happened and I imagined myself as a teacher before I imagined myself as a parent and that was hard enough… I played through how would I keep all my students safe… and then somewhere it dawned on me that just next year that it could be my daughter and there would be some other teacher… a teacher I don’t even know responsible for keeping her safe.  I tell you that shook me to my core and brought me to my knees and still does.  The thoughts and feelings I have as I type this with tears streaming down my face are real.  This is real.  REAL.  Scary pain.  Pain that hurts like no other. Because after all I have, we have protected our baby from we can’t protect her from this. 

I don’t have this same fear for Patrick yet…. he is in a tiny most wonderful Preschool with small ratios and teachers that are just a part of our family.  I feel he is safe there.  No threat.

Katy’s school is big and when I enter her school I don’t get that warm fuzzy feeling…. granted her teacher is AMAZING if I could have hand picked her myself she would be the one.  I have no doubt that someone sent her just for Katy.  That said she has 22 kids to protect and what if she can’t protect my Katy. 

When I volunteer in the classroom I just look out to the row of windows… the row of windows that I imagine to be much like the windows that were shot through by that crazed gunman… I look around the room and wonder where in the heck would the teacher be able to hide those precious children. 

I know that it is unlikely… but it doesn’t make the fear any less real. 

Please hug your children and pray for the families that lost their sweet babies.

Our Thanksgiving

Our Thanksgiving was spent up North with our Murphy side of the family cousins.  I don’t know who was more excited to escape North me or the kids.

 

  Of course I was sad to be missing our traditional Thanksgiving with my family, I was excited to spend it with our Mulkern cousins.  They have truly been such a blessing to our family.  We are very thankful to have them… the kids absolutely adore all their cousins and Auntie Nora, Auntie Kathleen and Uncle Reed.

 

Mike loves being around his family and I love hearing stories of his little nana and how much my Katy looks like her.  The only thing missing at Thanksgiving was Nonnie and Papa!! They were hosting Thanksgiving in Florida!

Kathleen & Reed were gracious host…and everything was perfect!

So thankful for Nora! She is the Big sister I never had! She loves my babes like her own!

Family picture with 18 people and 2 dogs is no easy feat!!!

So much to be thankful for this day and always.

30 Days of Thanks: Epic Fail

 

I completely failed at posting a daily Facebook status stating what I was thankful for everyday in November.  Last year I posted religiously.  I remember I had to find just one thing to be thankful for, and that some how by sharing it on Facebook it would make me feel more grateful and therefore more worthy.  If I was willing to be thankful for mundane things like coffee as well as the fact that Katy was healthy enough to be home on Milrinone…. that maybe somewhere in the universe or wherever it was that decisions were being made on my little girls behalf.  They would see that we are good and we are grateful, humble people.

It also gave me an outlet to let those who I so desperately wanted to acknowledge that I needed to let them know how much they meant to our family during our darkest days. 

I guess what I am saying is that last year I needed the rigidness of some sill Facebook game to remind me to stop and think what I was thankful for.   If I were to play along this year…every day would have been the same or a variation of the following. 

Today I am thankful for Katy’s New Heart.

Today I am thankful for our amazing donor family…. who during there darkest moment unselfishly made the choice to save our little girls life.

Today I am thankful that Katy & Patrick are home playing together.

Today I am thankful we are all under the same roof.

Today I am thankful the most perfect heart came in time.

I don’t need a 30 days of Thanks Facebook game for a daily reminder.  I think of those things EACH and EVERY day.  Multiple times a day… I don’t think that there is a day that passes that I don’t think of how very blessed our family is.  How amazing it is that with the love and support of our village we were able to get to this side of transplant.  A side that due to lack of available organs so few actually get to see how wonderful this life is. 

So don’t think that because I didn’t call your name out on FB this year that I am not thankful for you…. because I am.  Life is just really busy when you have a Healthy 4 & 5 year old.

Watching Sophia The First…cuddled in bed! Right where we all belong!

Blog Your Heart|November 2013

I found this on another blog and thought it would be a good way to ease back in to blogging. 

1. blog whatever is authentic. whatever is truly on your mind and in your heart.

2. It can be serious, silly, short, long. NOTE:no one said it has to be serious. But it should be authentic.

3. No judging allowed no snarky comments, no making fun, no passive aggressive digs. Nothing here is whining, though I can't help it if you perceive it that way. It's me honestly sharing my feelings. if you feel that it's whining, then you don't have to read. :)

I have taken a break…  for a few reasons.  The first reason is that I just have not had the time… our life has just exploded and we are BUSY! Our little Kindergartener has a full social calendar… that combined with me working a few days a week and moving/unpacking…a couple holidays and BOOM! No time for to blog! 

Another reason is that I have struggled if I would even come back and blog.  Mike and I have made the decision to remove some people from our life.  Again never an easy decision but some times necessary. It is especially difficult when those people are family. That said our lives are so much better and more peaceful for it.  However, I know that one of them actively reads my blog and it annoyed me… not sure why. 

Then I found out she was posting on Facebook about our family.  She posted about Katy’s heart transplant garnering sympathy and support.  It made me physically ill… Never calling or checking in. This is the same person who once when angry with me told me that it was Karma and that is why Katy was sick.  Katy was 2 years old at the time.  Who says that?!  It takes a certain kind of horrible to bring children into an argument, but to bring a sick child into it… I mean really I basically have no use for you at that point.

So that made me question what I share here and if I wanted to continue sharing knowing she was reading here.  Again Mike and I talked and Mike reminded me that I blog for me, as a record for our family, I blog for family who we love and who love our family and genuinely care about us and want to get updates and see pictures.  I blog for all that have loved and prayed for our family and our sweet girl and continue to pray for us. 

With that the decision was made to continue to keep the blog.

Transplant Family Picnic

We had a fabulous time at the Boston Children’s Hospital 7th annual Transplant Picnic at Kimballs Farm.

It was so nice to see some of our favorite nurses/staff and doctors outside of the hospital. 

Katy & Lauren from Child Life!

Katy with Dr. Smoot!

Katy & Patrick with Dr. Blume… words can not describe the love our entire family feels for Dr. Blume… but clearly by this picture you can see that she is part of the family.  I love how Patrick is holding her hand… just as she has held ours these past 3 years. 

Lunch was delicious! But, nothing beats Kimball’s Ice Cream!

Katy had a little help dunking Dr. Smoot in the Dunk Tank! Dr. Smoot was such a good sport!

The Bumper Boats were so much fun!  We finished the day with a round of mini golf… ( a short round)

We had a great day! So happy that Katy is healthy enough to participate in this outing.  Can’t wait for next year!

One more thing! Katy was also included in the Transplant Calendar for the month of February!! Such a cutie!

An Elite Group

Almost six years ago I  begrudgingly joined a moms group, not your typical moms group.  Not the mommy and me play date groups I had expected I would join when I became a mom.  I joined the group of heart moms.  Although, it would take me three or so years to fully accept that I did in fact belong in that group. I soon realized that this is a group of exceptional moms…who not only love fiercely, are able to function on very little sleep, know more medical terms and procedures than any mom should know, and have the ability to pick you up when you think you just can’t go on.  They get the significance of o2 sats in the high 90’s, the humor in seeing your child loopy from the Versed, how uncomfortable sleeping bedside can be, they know what it is like to make LIFE and DEATH decisions on a daily basis. 

Unfortunately this group is large…with 1 in 100 children born with a heart defect, there are many heart mamas.  I have had the pleasure of meeting many and have come to call a few my friends.  I have prayed for their babies as they have prayed for Kate.  I have celebrated their milestones and cried over unexpected set backs. 

Last week our group experienced an incredible loss. A sweet, funny, talented, six year old boy unexpectedly earned his angel wings.  Joseph Middlemiss better known to us as Joey was the epitome of what life is all about.  At only six years old… he knew what he was doing.  He grabbed this life by the horns and rode this roller coaster we call life… with a smile on his face and a song in his heart.  You see as heart moms we get to mother these amazing heart babes… who are like no other child.  For all they endure ( and trust me what they go through on a daily basis just to survive is enough to make a grown man cry) it makes them love all the more fiercely, it makes them see the best in each and every day even the hard ones ( and on this journey there are many hard ones) and oddly enough they give us their moms and dads the strength we need to make it through another day.  They remind us never to take a moment for granted… they remind us to enjoy the ordinary…and to seek the very last best drop of every. single. day. Joey did that.  Joey was able to do that because his parents Scott & Kate gave him the chance to do that.

You see, when you have a medically fragile child you have two options on how you will parent that child. Option One: You put that child in a bubble… you constantly live in fear of germs and everyone’s quality of life is a about a –1.  Or Option Two:  You are cautious and aware of your child’s medical needs, but you let your child live LIFE.  Obviously, you know Mike and I are a strong proponent of Option Two  given that we have always tried to take in to consideration Katy’s quality of life.  At times those decisions have been harder than some of the medical ones.  I can remember when we made the decision and finally somewhat reluctantly with the teams blessing we took Katy home on Milrinone.  Something pretty much unheard of for a child her age.  Kate said to me something along the lines of Don’t mess it up…  meaning pave this path so someday we can do it to. 

Because you see Scott & Kate chose Option Two of parenting for their beautiful boy and gave him every opportunity to live his life to the fullest.  I hope when they look back that they can see although Joey’s life here on earth was much too short… his time here was wonderful… he had a beautiful, fun life.  He lived more in his six years and touched more people in his short life then I have done in my thirty three years.  He has inspired me to live a fuller life.

I am a better mom for knowing Scott & Kate… they reminded me when I sometimes question how important quality of life is.   Do I wish I met you in a typical mommy and me group… I would be lying if I said no.  Regardless… I love you, I am here to support you in any way I can and I will never ever let Joey be forgotten. 

Routines

Lots of new routines.  New schedules. More commitments.  Overflowing To Do Lists. Full Calendars. 

Our lives are no longer our own.  Kindergarten is a whole new ball game.  Oh, yeah that’s right our girl…  this one right here:

Yeah… she started Kindergarten!

I know… I blinked and that happened.  Not really but sometimes it feels like it… and sometimes it feels like it took FOREVER to get her to this point.  But, here she is.  Healthy happy and loving life in Kindergarten. 

Oh and this little man…

you know my baby.  He has started Pre K and all of a sudden it is like a switch has gone off and he is printing all his letters and sounding out words…he is only 4.

With new school routines come a whole slew of other routines… we have dance class and soccer.  Need to sign up for Girl Scouts and Sunday School.  Their time is no longer only our time.  I mentioned I started working part time (very part time) I give props to you full time working outside of the house mamas.  I have no idea how you make it all work.