Sunday, July 21, 2013

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?   


g-ma-vicki said...

Never feel bad taking a vent... that should be in the rules when you become a heart mom. Whether at a peak or a valley you are on the same roller coaster and there is no one who allows you to get off. Seems like more of you angels on earth have had to jump on. The older I get the more I believe you are closer to God than most will ever get; you just really don't get the time to reflect or be introspective and when you do reflect you feel guilt. Take time momma, there are more of us out there that see that you do make lots of sense and you need your time to scream! Owen's gramma. Andrea's mom.

Em said...

Deanna, it may seem petty or silly, but you can vent to me anytime. I know our road with Ryker is/was significantly different from Gracie's, and those experiences will never be the same, but I am here for you. I know I whine and complain, probably too much, but I am there for you, whenever you need to vent or complain. I feel alone at times, in different ways. I am so grateful for Gracie in our family, and grateful for the way you treat each and every one of us. You are truly an example to me. I wish you could see how much I look up to you, how when I am with my kids, that I think "what would Deanna do in this situation?" I would hug you if I could, but I think you are very much deserving of some time for yourself. I was telling Jason the other day that while he gets his trip, you should get a trip to, even if it just a day to the spa and a massage/pedicure. Every mom needs a break. Love your guts.

Megan said...

I know you didn't write this for the responses you will get, but it made me want to respond so here I go. I will not say that I know what you are going through because my sons' hearts are healthy. I don't have to worry about the doctors that much or even day to day care that you have been given. I have always admired the way you jumped into this with both feet. You have always put on a strong exterior and you have more knowledge about heart health than anyone I know. But I also believe that you and I are similar. My family life is very much catered to the needs and whims of Evan. I often feel very alone in the day to day living. I don't wish that the long distance support I have is different or stronger, but I don't reach out. I don't have a fantastic relationship with the Lord either and am realizing that I need to start asking for His help if I ever want to improve our situation because I don't know what I'm doing. I feel like you have always known what you are doing. The fact that you are worried about the future is normal. I can't guarantee anything for the future, but I do know that with a mother like you who loves and cares for her children as much as you do, they have much to be thankful for. So many more words I'd love to ramble on with, but just know that even though I'm not close enough to do much good, I hope the best for you. I wish someone could offer you the support you are looking for and need.

cici said...

I agree with all the posts above.
I admire you for not being one of those "blog mothers" trying to make your life look perfect, when in fact if it was most would not have to blog every day for kudos and support.
There is no "normal" family, who ever made up the word normal was nuts! Normal is what is right for you and your little family.
I agree with Emily, a day off just for you is in order.
Have you ever thought of getting a smart highscholler to come in and help with homewrok and care for a reasonable rate in the afternoons>
It worked wonders for me to get a little samity back and the kids never suffered playing games and having fun.
Big hugs to you and an extra one and a Prayer for little Gracie.

Erica said...

(((Hugs))) Deanna,
My situation has turned out very different then yours, but I still appreciate the nights out we had together talking about all the medical stuff to someone who understood it. I think Heavenly Father helped us to meet years earlier knowing our paths would cross again in a much different circumstances. Thank you for helping me through those difficult times. I am still here to listen and would love to get together again sometime with or without kids and talk.

Anonymous said...

I don't know you but you seem like an amazing mom. Being a mom is SO hard but being a mom with all your added stress would be a million times harder. Please be easy on yourself. You sound like an amazing mom.