It's not pretty and it might not make sense....vent.

It's been a long time since I last sat down and wrote a blog update.  I've been meaning too, but time just goes by too fast.  A couple weeks ago I read through all of my posts over the last 5 years and I was so grateful that I had those posts that I realized I need to write more so I can document memories and experiences with my family.

Unfortunately, this post isn't a memory builder.  But it is one that I feel is important nonetheless.  I've never been much of a writer.  I've never been very eloquent in how I vocalize my thoughts and feelings, but I need to vent.  I try not to complain much, I realize that there are many people who have things harder than I do.  I know that complaining about my situation isn't going to change anything and I just need to buck up, embrass it, and try to improve things.  However, I just have to get these feeling out.

I asked Jason last night if he ever feels alone on this heart journey of ours and he said no.  He said he thinks everyone handles things differently and there are no two heart journeys that are the same.  Some kiddos have it harder than others but he feels like he has the support he needs. 

Me on the other hand, I feel so alone on this heart journey.  When you have a heart baby, especially one with a very complex defect, it doesn't just affect the heart baby and parents, but it affects the dynamics of the entire family.  EVERYTHING our family can and can't do revolves around Gracie and how it will impact her, whether she can do things, etc.  Gracie has had it rough from the beginning.  And she still does.  She has delays that most of her heart peers don't have.  She has only been off of oxygen for 6 consecutive months her entire life.  Gracie has developed anxieties that have begun to impact her life experiences negatively.  Don't get me wrong, she has a strength and joy and zest for life that I wouldn't exchange for anything but because of her struggles and difficulties it is hard and it is lonely.

In the heart world there are support groups but I feel that even if I try there isn't much support.  Maybe it is because when Gracie was first born we kept to ourselves.  It was too hard to connect with others when they were either losing their little ones or their little ones were sailing through surgeries, the hospital, and recoveries. 

Apart from the heart world, I don't have family to turn to.  My mom has never been there for me.  She has never seemed to care enough about Gracie or what she is going through and now that her heart is 'repaired' I think she thinks she is fine now.  I wish I had a relationship with my sisters that I could just talk to them and vent and that they would get it or at least be there for me, but it isn't the case.  Everyone has their own life, their own struggles and really don't reach out to us regardless of how hard I try to reach out to them.

Jason's family is great, but it isn't the same.  I am not close to them in a way that I can really voice my fears and heartaches.  Though I know that they admire how well we take care of Gracie, do they really know how hard it is?  It is hard to take her to therapy appointments, doctor appointments, do our homework from said appointments everyday.  Play with the other kiddos,  balance the time spent with each kid, when Gracie requires so much attention and individual care.  Not even to mention the economic toll this all takes.

Some may say turn to Heavenly Father, He is always there.  Yes, yes He is.  I know this to be true.  I know that Him and Jesus Christ understand far better than anyone else what this journey is like.  They understand my fears, my guilt, my anguish.  But the truth is my relationship with Them has struggled and lacked since Gracie came into our life.  In a weird twisted way of thinking, I fear that if I truly rely on Them that they will think I am strong enough and take Gracie.  So instead, I just have distance myself from Them...I know this is foolish thinking, but it just how my mind and heart have worked the past few years.

This journey is hard.  Hard on everyone and all of our family relationships.  The pressure to do it all is great.  Am I making the right choices, do I have the strength to carry on?  Am I helping all my kiddos and giving them all the attention and help they need?  Will I ever have the energy left to devote to Jason and improve our relationship?  Will my other kiddos resent Gracie or see her for the miracle she is?  Will we ever be able to be 'normal' and have a 'normal' family?