Thursday, June 14, 2012

The life of a military child

I grew up as a military brat.  My dad was in the Air Force, and during Desert Storm was gone quite a bit.  After that he frequently TDY'd for long periods of time.  He was in the EOD (Explosive Ordinance Disposal), you know - the guys who get rid of bombs.  I was used to him being in and out of our house, and knowing there were twos type of normal - One when my dad was home, and one when he was gone.

When my husband enlisted I was originally opposed to it.  I didn't want to have to kiss him goodbye and I didn't want my kids to grow up while he came in and out of our lives.  We both knew this was the best road for our family, though.  We wanted a large family, we were young, we were already pregnant with Anthony, and we needed stability.  The military doesn't provide home stability, but it does provide job security, a community, and benefits that make it easier to breathe at times. So he enlisted.  He left when Anthony was 3 months, and we reunited when Anthony was 8 months old.  He deployed off and on, or TDY'd off and on for the next year or so, but it was okay.  I had one child, I had a great group of friends, I was young, in shape, and I was determined to be a strong military wife.  After our daughter was born he left for 6 out of her first 8 months.  I had severe PPD, I had a falling out with a friend, and my daughter was very high needs. Still, I conquered those deployments, and when my husband came home he transferred to the school house so he could further his career and stay home with us.  It was supposed to be a 2 year assignment, but it turned into 4 years.

During that time we had 3 more kids, my health began to fade as my EDS became more painful and apparent, and my friends PCSed or separated from the military.  I was no longer a young, nor new military spouse and I found it harder to find people who were in the same stage of life as I was.

Now Chris is deployed again.  The longest deployment we've had yet - 6 months.  This isn't like the other deployments, for me or my kids.  My kids were young last time and didn't really understand that daddy was gone.  I now have 5 kids to care for, and two of them are school age which requires a lot more "get out of the house" time.  There is no more napping for me, or sleeping in.  I can't just leave the house at a moments notice, and most of my friends now have careers which means little time to hang out.

My kids are now aware that daddy is gone, and are dealing with it in their own ways.  Anthony has a very hard time even talking to Chris on skype.  His room is littered with pieces of paper with pictures he drew of daddy and "WANTED - My daddy to come back home. We need him", and "Daddy, no one is as missed as you are, come home please".  It breaks my heart, but he won't talk about it much.

Anastasia has gone from my happy go lucky child to being melancholy, and withdrawn.  She doesn't want to play anymore, she has reverted back to being very clingy, even to the point of not wanting to leave me to go to school.  She'd rather run errands with me than spend time playing with other kids.

David is angry.  He says things like, "I'm not going to behave until Daddy comes home!" or "I hope Daddy never comes home because I'm mad at him", and "Did Daddy leave because he doesn't like me anymore?".  When I try to talk to him about Chris his chin begins to wobble and he refuses to speak.  I tell him that daddy didn't want to go, that he had to, and that he loves him and can't wait to come home.  I think there may be a long adjustment period on Davids part when Chris returns.

Charlie goes from anger to sadness.  He was the closest to Chris out of all the kids.  He was Chris's little shadow, spending every second that Chris was home attached to him, and sleeping curled up on him at night.  Some nights he dances when he hears the skype music, other nights he gets grumpy and hides behind me refusing to talk to Chris.  Still 2-3 times a week he wakes up in the middle of the night sobbing for him.  He is too young to understand why Chris left, and it's quite clear he feels abandoned.  I've had to be very sensitive about even putting a shut door between Charlie and me because it can send him into a fit.

Alan doesn't even know.  I think thats the saddest of it all.  In Alans world he only has one parent.  He doesn't know about Daddy and how awesome he is.  He doesn't know the way he smells, or the joy of being tossed in the air by him.  I try to let the two play when Chris Skypes but Alan is still too young to even do that much.  He's very attached to me, and lights up when he sees me.  Out of all 5 kids he is the most joyful, and playful, and it breaks my heart that Chris is missing this.

Being a military SPOUSE is much different than being a military BRAT.  I thought I understood what deployments were like having dealt with them as a child, but I had no idea what it's like to be separated from your companion, your best friend, and having to live life like a single parent but not being a single parent.

I used to face deployments as, "I have to be this super strong, can't show I'm upset because I'm a military wife and we don't do that!" and I was dumb.  It's normal to be upset, and to have bad days.  I'm still "handling" this deployment.  I'm still getting up every day and doing what I have to do, and what Chris used to do. I'm dealing with my kids emotional needs as THEY'RE dealing with the deployment.  I'm just not doing it and pretending that I'm okay all the time.  Especially to my kids.  I WANT them to see that I miss their father, that his absence may be necessary but it's not wanted, but that as a family we get through it.

There is a very real possibility that at least some of my children will go from military brat to military spouse or service member.  While these deployments are hard for them on so many levels, when they become adults they'll be difficult in other ways.  Every deployment is different because life is never quite the same for each deployment.  Perhaps our next deployment will be easier than this one has been.  We'll be more seasoned, it will most likely be a lot shorter, and my kids will understand a little better.

I've said it, and I've heard it often, not every spouse is cut out for this lifestyle.  It's why we see so many military marriages end in divorce.  I think we forget that not every child is cut out for this lifestyle as well, except they don't have a choice to end it. All we can do it try our hardest to be as emotionally supportive of our kids as possible.  We can't make it easy for them, there is nothing easy about being separated from your only father or mother, but we can help them deal with it and understand that it's OKAY to be upset about it. It's expected, and it's healthy.

Thursday, June 7, 2012

"Oh, let me tell you about YOUR disability..."

Its been a while since I've blogged, but it's something I'm desperate to get back to.  This post has been a while in the making.

I had to bite the bullet a few months ago and my husband and I had myself declared "handicapped - permanently" through the state so I could receive a placard for the car while he was deployed.  It was a very sad day for me.  It's a struggle, constantly, between letting people know about Ehlers-Danlos Syndrome and how it affects me - and not letting it rule or ruin my life.

May was EDS awareness month.  I find this to be especially important as I would not have been diagnosed if it wasn't for a passing conversation with a complete stranger.  It's so important to me that more people learn about EDS.  With this comes...more opinions, though, on how *I* should be living *my* life with this syndrome.

Whenever you are disabled, no matter the cause or severity, everyone seems to have an opinion on it.  "Oh, you're TOO disabled to be doing that!", "You don't LOOK disabled", "IF you were disabled you surely couldn't do THAT!", "Are you sure you are disabled?", "Are you sure you should be doing that?", "I think you are faking", "You don't need to be taking THOSE medications", "You can't be in that much pain, surely, and still be moving!", "I think you are a drug seeker", "*I* would never take those meds, even if I was in pain", ect ect ect.

Everything I do is now questioned, scrutinized, judged, and ridiculed.  I've dealt with it from people who don't know me well, Chris's squadron mates, and most recently people I confided in and considered good friends of mine.  It's tough, but it shows me who I can count on to be there for me and who I can't.  It also shows me how much further we have to go in educating the general public on Chronic Pain conditions and EDS.

Yes, my joints dislocate, my tendons and my ligaments tear, my muscles shred, and when the damage is severe enough my bones begin to degrade.  Yes, I get up every day and do what any hard working mom of 5 would do.  Would it be easier to lay in bed and cry? Of course, and there are days where mentally I AM still in bed, curled in a ball, and crying my heart out.  Crying because of the pain, and crying because it's just not fair that I have this.  But physically, I get up and take care of business.  When it becomes more tough to push past the pain I meet with doctors and have procedures done to help.  Thats why I had my wrists fused.  I couldn't push past the pain any longer, and by that time my wrists were permanently dislocated, shredded, and separating from my arm.  I think I did a damn good job still parenting with broken wrists.

I feel that disabled people have to go ABOVE and BEYOND what any able bodied person does, and still we aren't good enough.  In my case, it's with my parenting and my ability to care for my family.

If I was an able bodied mom of 5, whose husband is deployed, I could make a frozen pizza for dinner, take a nap in the middle of the afternoon, or feel so tired by the end of the day that bed time comes early and everyone would completely understand.

When you are a disabled mom you must ALWAYS cook meals from scratch, maintain a meticulous house, play non stop with your children, have endless amounts of patience, and never ever be tired or complain.  If you fail, or have a bad day, you will be accused of being too disabled to physically care for your children.

If you decide to have a large family when you have a disability, well you are just in for it!  Even if you parent in such a style that you are constantly attached to, engaged with, or responding to one of your kids.  You mine as well be lumped in with abusers and neglectful parents!

I REFUSE to let EDS take away my dreams.  I was born with it.  A lot of people are born with it.  Experts believe about 1 in 800 people have some form and 95% of people will never be accurately diagnosed.  To me it's like yelling at a woman with RA for having kids, RA can be passed down too.  No family is perfectly healthy. Of course I hope my kids don't have EDS, but given the alternative (them not being born) I don't think they'd rather that have happened. Plus, having a parent who is AWARE sets them up for such a much better future dealing with it than I had.

Even my medication and how I handle my disability is scrutinized, judged, debated....

My journey into pain medication began almost 4 years ago when the pain became unbearable.  After the birth of David within 6 weeks I went from okay with minor aches and pains here and there, to unable to walk or use my arms from severe pain.  My elbow began dislocating, and eventually after a few weeks of dislocating over 100 times per day I could no longer pop it back into place.  It's still dislocated 4 years later.   The geneticist said it's one of the worst hes seen.  There is no option for it but a replacement which I can't get until i'm 35.  My legs stopped working and after PT and OT 3 times a week for 8 months I regained them but popped my achilles tendon in the process.  My wrists were severely damaged from dislocations, and required the fusions to fix.  During this process I was prescribed percocet, but no one was managing my pain meds.  I began taking more and more just to get the same pain relief.  Once I was taking 25mg at one time I knew something had to change.  My doctor suggested a pain clinic and I've been there ever since.  I've only raised my pain meds twice in the past 3 years which is pretty rare and slow going.  I'm very careful to not take too many because of tolerance issues.

I'm currently on dilaudid and morphine.  This has caused quite the stir.  Quite the opinions.  Until someone can experience the pain I'm in they can't say what they really would or would not do.  Compared to a lot of EDSers I'm on NOTHING.  One lady is 3 years older than me and having a pain pump surgically placed inside of her.  Others are on fentanyl pops, morphine patches, oxy, and dilaudid at the same time.  I would never judge any of those people.  Pain is so mentally and physically exhausting.  We do what we have to do to function.  I refuse some of the harsher pain managments, like methadone, because of nursing and wanting more kids.  I'm very carefully monitored by a huge team of doctors.

At the end of the day, it's MY life, MY choice, MY disability.  I don't mind sharing about it, but keep your opinions on how I should be living or managing it to yourself.