Wednesday, November 28, 2012

There, I said it.

I have a friend whose husband is in the National Guard. As a soldier, he gets sent for year long deployments in war torn areas. This last time he went to Iraq and my friend, a mother of two young kids, was left on the home front to face a year of birthdays, holidays, and milestones alone. This couple had Skype (not always working), the phone (again, not always working), email, and good ole' snail mail.

Can you imagine how difficult this must have been?

As her friend I desperately wanted to be a support to her during this hard time of single parenting and worrying about her husband's safety. She did not live in my town and we were under RSV isolation, but I tried my best to let her know that I cared and was thinking about her. I did not quite understand the emotional toil she was facing and I often wondered if what I was doing was helpful. Was I saying the right things? Was I encouraging to her or just aggravating the already raw surface?

I will never know everything she went through during that year. I could only try to ask sensitive questions and try to put myself in her shoes. They key word is "try".

I'm sure you can see where I'm going here.

Unless you have been in a similar situation, you can't possibly compare or comprehend. You just can't. And likewise, there is no way to understand the complex world of parenting a micro preemie unless you have been there. We've blogged about the NICU journey, the emotions, the death, the life, the day to day, the worry, the stress, the joys, the heartache, and about our world being turned upside down. All of it. It's on here for those interested in reading hundreds of thousands of words... you can read, you can ask questions, you can try.

But unless you have lived it, you will not fully understand. Such is life.

And here is my kicker - unless you have been there, I believe this takes away the validity of the opinions you have relating to micro preemie life. Or maybe (and probably more accurately), your "right" to have me listen to your opinions. You can say all you want, come to conclusions, research, whatever, but it's just not the same as living it. That means your opinion about my emotions, how I react, and what I write about and say... it's really not up for discussion.

This is my blog. The story of my family. The story of my micro preemie son. You won't always get it. You won't always agree. And it really doesn't matter. This is my truth and no one is going to fully understand because they are not us.

There, I said it.
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16 comments:

Anonymous said...

Well said!!! Wish I had the courage to write this to some people in my life!!!

Andrea said...

Well said! I'm sorry you've had people disrespect your family. I'm the mom to a 23 weeker, too. Jax is 4 months old and I've just begun blogging about his journey. I'm sure I'll run into the "well wishers" you speak of. I think I'll just send them a link to this post! :)

catchupdaphne.com said...

Brava!

Stacie said...

Right on! People don't truly understand unless they've been there. Even people who have dealt with prematurity don't understand what it was like to be in the NICU for months on end, watch your child struggle to breathe, watch families lose their babies...to pray that your child will beat the latest setback and come home, unless they really lived it. Our experience with two very sick 28 weekers who both developed hydro and needed shunting was vastly different from a 34 weeker who was a feeder/grower. Our experience was vastly different than Jack's exlerience as a 23 weeker.

It's hard, though, to feel misunderstood and live a life that in some ways SO many do not "get." To feel like you need to keep quiet because others may judge and be unkind.

Many people (dare I say most?) do try to have empathy and be sensitive. They know there is untold struggle behind the words written.

Many hugs.

Athena said...

Keep doing what you do, keep sharing your feelings and thoughts, it is refreshing to know many of us are not alone. Even though we have walked the same path of prematurity we have not shared the same shoes.Every single journey is different, with sometimes vastly different outcomes even from similiar beginnings. Noone can ever tell you that you "should have" done this or that, because there is no guarantee that you would have seen the same results as another. I have a 27 weeker and a 33 weeker and the only thing the same about their nicu stay was their last name. I think Jack is adorable and love seeing him grow!

Bethany said...

THANK YOU!!!
We have a loving and supportive family, but they still can't "get it", even though they try. I'll never "get" what you went through, though we, too, experienced brain bleeds and a shunt, ROP, and months on the vent. Because while SOME of the things we went though are like your experiences, we are not YOU, as you are not ME. Everyone copes differently, and I really don't expect anyone to "get it". But it really upsets me when they, with their full term pregnancies, and healthy "take home" babies, claim they do... it's impossible. And yes, I still feel this way after 2 years. I don't care how people feel about my coping mechanisms... I do the best I can, day to day. Keep doing what you're doing, it gives me hope, and keeps me going!

Julie said...

Let me set your mind at ease. You did not ever offend and your emails, care packages and visits (through blizzards!) meant the world to me. Even though maybe you didn't perfectly understand my challenges and loneliness, you did understand that I was going through a tough time and you expressed your care and friendship in the ways that you could.

In my experience, the people that offend are usually not those that bumble in their sincere attempts to connect and show care but those who assume, who boast, who complain and who are negative or just plain stupid (like the people who asked if I missed my husband...yeah, I kinda missed him after not seeing him for year!). It's easier to forgive a raw word that comes from a loving friend who says the wrong thing by accident than the careless words of a stranger.

All that being said, I am glad you have found a community of micropreemie parents who may not understand exactly what you go through but can empathize better than most other parents or friends. And I am glad you have the courage to say it like it is - it's one of my most favorite things about you. <3

Joanna B said...

Well said! I am still working up the courage to write this sort of post...

The Kimmels said...

You're right, people will never get it because they haven't been there. And I also believe you have every right to be frustrated that people don't understand. I don't know where I would be without the people who DO get it. I hate that anyone has to go through things like we have been through, but I'm glad we aren't alone. I'm also thankful for the people who don't get it. I don't know where I would be without them either. And while it can be so, so hard and isolating, I'm also glad that people DONT know. I would never wish knowing what having a preemie and watching them struggle between life and death is like. I would also never wish that someone understood my pain of losing a child. I'm glad that those people are there to support me, but how I wish they didn't have to be in this boat with me. Of course this is just my opinion, and like you said, I will never know exactly what you are going through day in and day out. I appreciate your honesty and you write in a way that so many parents can relate to!

Anonymous said...

I just wanted to say I love your blog. I get it. I had triplets at 27 weeks and 3 days. I lost one daughter 4 days after delivering. My other daughter was in the nicu for 4.5 months, my son 3 months. The kids have continued in home therapy. My daughter was on oxygen for a year after being discharged from NICU and we also were on home lockdown for 2 years due to their chronic lung conditions/rsv etc. (The docs didn't even want us to chance it during the rsv off months due to the kids lungs and especially my daughter who got an pnemonia in the nicu.)I still struggle with close family and friends understanding what we have been through and having children who have fought to live and now have catching up to do. Although its gotten easier and now the kids surgeries etc are all in the past it seems like there is always another hurdle. I think too for me there wasn't just grieving of losing a child but so much more. Holding a child one month after you have delivered is not the same as holding them following delivery etc. Anyway I read your blog postings regularly. They are therapeutic. I get it. I have lived it. I can say we have gained a certain take on life because of it and I wouldn't change that.Of course if I could bring my daughter whom we lost back I would but otherwise, my children are blessings, full of joy, love, and each day they teach me something new!

Anonymous said...

I will add micro preemies are very special~

Anonymous said...

Your blog is awesome, you are an amazing mommy and advocate for jack-who is so very cute!

Rosie Keisha said...

What an eloquent post. You are absolutely right. Unless "you have been there" you don't fully get it. This also applies to other heart-breaking events in life...the death of a beloved husband, a child, a parent etc. People who care always try to say the right words but they don't understand the ache in your heart. I can see how this blog is therapeutic to you...a release, a record of where you have been and hopefully looking forward to the better days. I would not be able to read insensitive comments without being hurt no matter how logical I was. Do you have the ability on this site to turn "comments" off and just allow yourself to vent which would still be so helpful to others without inflicting any further hurt on yourself? Just know that our heart reaches out to you and your family. Thank you for your honesty.

Shannon said...

You nailed it girl!

Michelle said...

I remember another woman telling me, "Don't worry; things will get easier." just after I brought my micro-preemie twins home. I wanted to scream, "How the heck do you know? Have you had micro-preemie twins before? Have you fed your child through a tube? Have you fed them every 3 hours around the clock for a year!?". I think it would have been best to just say, "I'm glad they are home" rather than offer advice she knew nothing about.

Anonymous said...

Mrs. Bennion,
I don't have a micro premie and I don't have children (however I have years of experience working with children). I realize I am late to commenting on this post, but I feel the need to let you know you shouldn't ever feel the need to not express how you are feeling on YOUR blog. I find it completely out of line for people to discuss your choices of keeping Jack. Not only is it your decision, but it is a life... something you give so much everyday to give your best to. How could anyone fault you for giving Jack the opportunity to live? How could anyone not want such a precious and beautiful child just as he is? They have no right to judge you or your decisions! You are an amazing Mother doing amazing things for your amazing child. NEVER listen to those that don't agree with your decisions! You and Jon have made a number of fabulous decisions that are right for your family and for Jack.