Our Easter Wouldn't Be Complete Without a TBI Story

As I read through everyone’s Easter recaps and scrolled through the smiling faces on my Facebook feed I needed to remind myself that my journey isn’t going to look like your journey.  Every family has its quirks.  We had a perfectly lovely Easter.  The girls enjoyed coloring eggs, did not enjoy eating them.  They were super excited for their baskets and new basketball hoop.  They got to play with their cousins and have an egg hunt at their grandma’s house.  What they didn’t get to do was spend the day with their father.  His head prevented him from joining us on the trip to my stepmother’s house.

Looking back at last week I am not surprised.  I should have known but sometimes I forget that we aren’t a “normal” family and I let go of some of my self-preservation techniques.  Last week was just a crappy week; work was really getting to me, I was really missing my girls, I had a minor car accident that left me hurting all week and some unthinkable things affected people I love.  I was in more than a funk, I was in a depression.  I tried to hide it but I couldn’t so I tried to talk to Will about it.  I knew I shouldn’t have, when I am having a hard time with how our life has played out he has a hard time understanding that it’s not his fault.  When I really just need to vent and cry and be told that things will be OK I usually end up having to reassure him and I am left worse off than before.  It’s not his fault – I know this and I am not mad at him for it but it is so frustrating.

I don’t want to keep things from my husband, I love him and want to share everything with him but at the same time I want to protect him.  My unloading on him made him upset and stressed and with the anxiety of a large Easter gathering hanging over his head his body reacted.  5 years after his accident he started experiencing a “concussion headache”.  He has several different types of headaches and having never had any of them I can’t really talk about them but he said he felt as if he had just gotten the head injury.  Because of this he knew that he would be able to handle a loud house full of people, so that is why we spent Easter apart.

He was there for the girls’ baskets and when we got home he heard all about their day but he wasn’t there.  I had a great time with my family and it was nice to not have to worry about how he was doing with my family but I would have rather of had him there.   

We have done a pretty good job adjusting to what is normal for us but it doesn’t mean it doesn’t hurt. 

It's Allowed (updated)

Updated 2/26 5:30PM-
I pulled into the driveway and noticed that the car had moved...he went to the store!  I had to hold back my tears, I was on the phone with my sister and just kept saying "oh my god, he went to the store, he went to the store!"  Knowing what a major step this is she was so happy for him and me.

Today I am reminding myself that it is alright to allow myself to be frustrated with the changes Will's TBI has brought into our lives.

I am allowed to not love being solely responsible for anything that needs to be done outside of the home and for most things inside.

I am allowed to be disappointed when he says he's going to do something but his anxiety gets the best of him and he doesn't even try.

I am allowed to want a release from the stress that all of this causes, knowing that there just aren't enough hours in the day.

I am allowed to be hurt when he is so wrapped up in his own issues that he doesn't even acknowledge when I tell him I am having issues as well.

This is a struggle and just because it's been 5 years since his accident the struggle hasn't gone away.  I'm having a hard time today, I am having very selfish thoughts.  Well, I don't know if they are selfish, they feel selfish because I truly do understand his issues but if he would just try, to go to the market it would make me so happy.  Even if he gets there and can't go in...I don't know, like I said I am being selfish but as long as I can get over it this is allowed too.

Working Mom Struggles

I never thought it would be easy, not once.  I always knew and appreciated the time I was able to spend home with my babies - even when it meant that we were searching the couches for spare change!  We had our ups and downs these past four years since becoming parents and since Will's injury.  But Will can't go back to work - not in the state he's in now so we knew it was my turn to step up.  Yes, I have been working since February but that job was mostly at night and I got to spend the best part of my day with my family - but that was the only good thing about that job.

These days I out of bed at 5:30-6:00 depending on if I am going to run.  My girls should not be out of their room until their clock light lights up at 6:30 but that almost never works.  So I am showering and getting ready while changing a diaper, fixing breakfast, and dealing with whatever toddler crisis comes up.  Will is usually still in bed.  If he's not downstairs by 7 I wake him up and try to remember to east some breakfast and brush my teeth before heading out the door no later than 7:21.

I spend the day at work trying to stay busy - which is not always easy - and fighting the physical pains of missing my children.  Some days are better than others but at least once a day my abdomen feels like I am being stabbed and the desire to put my arms around them is overwhelming.  I want to know what they are doing, if they know that I love them...pathetic, I know.  I do my best to take control of these feelings but some days the anxiety takes over and I have to deal with a mini panic attack prying that no one notices.

I call home on my lunch break, checking on everyone.  I make sure Will is feeling well enough and the girls are behaving.  At 5:00 on the dot I am out the door and speeding down the road to beat the commuter rail traffic to get home by 5:30.  When I get home Will is stressing over dinner and the kids are running around in their disaster of a playroom.

The house is a mess, we eat dinner as the girls start to wind down and become unraveled.  Bedtime is at 7 but the tantrum start well before.  I am home for their worst part of the day.  We put them to bed and it takes over an hour of screaming and crying and potty trips and whatever else they can thinks of before they are finally asleep.  Now I try to clean up, without Will seeing me clean because he feels bad that while he has all these grand plans to keep the place clean nothing gets done.  I try to not hold it against him, because of his injury he has a tunnel vision issue where if he's doing one thing nothing else in the world exists.  I would rather have toilet bowl ring than a toddler who wonders out of the house alone.  But damn it sucks.  Somehow he does find a way to clean his fish tanks twice a week though...  His social anxiety wont allow for us to hire a cleaning lady.  Then I finally get to try to relax and Will is all over me about why I'm so anxious.  But what can I do?  I know his limitations - complaining to him about things he wishes he could fix is just going to leave us both miserable.

I really hope starts to get better, I don't know what will change but hopefully something.  But I can't really think about that now, I have to meal plan for the week and get my shopping list together because guess what - I still have to do that too.

Date? That's a Fruit Right?

I am getting more and more frustrated with our lack of dates.  We still haven't had one since 2010...February 2010.  We now live close to family and have a cousin of Will's 1.5 miles away willing to sit but still nothing.  Today he made me choose between going to the zoo with the girls are going out with him tonight because he didn't think he would be able to handle both.

I've never seen Sophie's Choice but I imagine it had something to do with a similar decision. 

Here is a picture of me and the girls at the zoo.

I am beyond frustrated.  8 months ago we were on the verge of a split, it is way overdue that we put us first.  The best part of all of this is talking about it without making it seem like I am attacking him or downplaying his anxiety but the fact is that I have it too.  My triggers are different but they are still very real and feeling like I am worth at least attempting a night out would do a lot to help me. 

I want to get pretty and go somewhere with just my husband and, for one night, be a normal couple.

House Arrest

I've talked about it in the past but one of the hardest parts of Will's post TBI life is the social anxiety.  Don't get me wrong, before he was injured he would have rather sat at home than go anywhere but he could go.  Now just the thought of having to interact with other people makes him physically ill.  So we are home, always home.

I know I can go out on my own but I can't really make plans because my job is pretty last minute most weeks and because I never know what kind of a day Will will be having.  When I do find myself having a free night or some time he always says "go out, do something for yourself" or "call your friends, go out".  It doesn't quite work like that.  I've pretty much neglected most of my friends since I got home - I haven't done it because I don't care or I don't want to see them, I miss them terribly, it just happened.  When I am not working and the girls are awake Will gives me a guilt trip if I am not home with them and I work most nights.  Almost all my friends have kids, just because I have a free night it doesn't mean everyone else (you know, people I've failed to fit in my calendar up until now) will drop everything.

This would all be solved with one thing, I know what you're thinking - PLAN AHEAD!  Yup, that seems to solve a lot of problems, all but one.  My husband.  He acts like a lost puppy when I make plans without him.  He doesn't mean it but he does it.  First, I am always sure to invite him along - that would be ideal but he never wants to come.  So I have a choice, go without him and feel like shit or just stay home.  To avoid this I've stopped making plans, stopped committing to things.  It sucks, when I am not on work release I feel like I am on house arrest.  I don't really know a way around this.

As hard as it is for me the people who are really losing out are the girls.  I am trying to just take them and do our thing as much as possible but that has it's downfall too.  I took the the girls to the beach and they had a blast in the sand and even ventured into the ocean.  Will was pretty bummed to miss that.  A week later I took them to swim in my sister's pool which the both loved and had a blast, I don't think he's even looked at the pictures.  My going it without him seems to make him worse.

This should be daddy, not Uncle Brian.

 I am really struggling with this.  I have never thought I would be living like this.  I don't want to live like this.