Adapting The Dream.

   Life has been rolling along here, just as we do. But it doesn't look like we thought it would. Not at all.
   Aaron's not walking these days because he's coping with the pain from having two sciatic nerve neuromas and/or weaning/managing with narcotics he doesn't usually take. Outside of the occasionally pill to help him sleep through his pain, he doesn't take pain killers. It's not good for him or our family, so he limits his use. This often leads to days spent in pain, but the alternative is not really doing much besides lounging around the house. He could have surgery for the neuromas but that comes with its own price, too. None of this is very convenient  for our little family but we will make do.
   I was talking with another caregiver the other day and we weren't being entirely hyperbolic when we made comments about how long our children will get their fathers. Will they have them longer than the Army did? Will AJ have Aaron longer than I had my dad? I don't go to that place often, but it's a very real fear that creeps into my nightmares sometimes. It most often happens when Aaron's been gone for awhile, so as long as he's here, I sleep a little better.
   But while AJ and I sleep, Aaron does not. He is so tired. I can see it. This nerve pain is just stacking onto his back pain. I don't know what to do. He doesn't oversleep, thank god, but a lot of the time I know he's just bone-tired but up anyway. He wants to be around AJ. He wants to at least hang out with her and watch cartoons. So you know, we have the TV going a little more than we planned on with AJ, but it helps. She plays nearby and stops to cuddle with the best daddy in the world every so often and watch Mickey do his thing. Although, between 9-11 is time for Wayne Brady and Drew Carey. AJ largely ignores this block and plays in her kitchen by throwing everything everywhere.

 We are trying. We went out for Halloween, out on a date! And we had a great time! We got to hang out with some old friends we never see. We had a sitter and everything went well. We are also going to put AJ in part-time day care; I just have to stop retching at the cost. It's a full time day care with all the bells and whistles of that, so the part-time rate is a little high. But we'll make it work. AJ needs to other friends besides her weirdo parents.

 The house is coming along. We had plans, GREAT plans, and now they will serve as a coloring book for AJ. We can't afford them. So we picked new ones. I REALLY, REALLY hope we can break ground this year. We are so ready.

We're ready for the rest of our lives, I just don't know what that exactly looks like anymore. We have adapted and compromised a million times; it's like living in a Picasso painting at this point. Still beautiful, just all jumbled. And some days, we just want to feel normal.
 
 
   

The Full and Lonely Fridge.

I went shopping two days ago. Or was it last night? I went to the grocery store, and I bought food for a family of three (plus dog) to last two weeks or more. I stocked up. I took two hours. I clipped my coupons, checked the online site, and took off. I saved $70 on our bill. I bought some new things to try with AJ. I looked forward to cooking.

Aaron will be on a plane Sunday, headed towards Walter Reed for appointments and eventually surgery.

AJ and I will be eating all the fresh food up alone and freezing what we can before we follow our warrior in about a week. I hope to be there for surgery.

You think, "He's home safe. He's on American soil, and he's mine forever! We can live like retired people, but raise our kid to be around both parents everyday even if it makes her weird! I don't care! I got top prize. He's home, he has his mind, the important parts of his body, and he's not angry! My funny, sweet guy with shitty memory is here and that's all I need!"

In the Army, you get used to long absences, short notice missions, and the like. You expect it. You know it's what you signed up for, right? And when you're done, you're done!

Not when war comes home with him. Not when we experience the consequences of 09..07.11 every single damn day, and some days are worse than others.

Earlier this week, he couldn't go more than a few minutes without flinching and his legs spasming. It only went on a day or two before he took off for the VA. CT scan, morphine, we'll call with the results.

He has neuromas on both sciatic nerves. It's a special kind of neuroma, reserved for above-knee amputees. And since he has two of those, I guess he gets two of them, too.

It just sucks.

I just booked tickets to Houston to see the family of a very dear friend who is not alive anymore. I named my kid after him and it's time for his family, who is already close to my heart, to meet her. Adjustments will be made.

I just filled my fridge with fresh meat and veggies and fruit. I bought milk and juice and all those things.

Aaron is on morphine and in pain and relativity useless. He hates it more than I do. He's dozing on the couch right now, exhausted from just being awake.

It just sucks.

And what I want is that life where we are done with the military and war and don't pay for it every day. Where we don't have to freeze everything in the fridge and eat up the fresh stuff since we might not be here.

We almost never know how it's gonna go when he wakes up winching in pain.

We can build a mansion. We can have a place to call home. We can have kids, and sign up for activities, and do all that shit people with families do.

It doesn't matter.

War comes home and it never leaves.

It even leaves you crying in front of a full refrigerator.

The Cost of Coming Home. Part 1.

We arrived in Birmingham the beginning of November and began to immediately transfer Aaron's medical care to the VA hospital here. We came home because we needed and desired our family, who are close by. We wanted to give AJ life around her family, and a house with a back yard- things that weren't possible in DC. When we realized we couldn't afford to stay, we knew home was where we would go.

But our experience with the Birmingham VA has not been what people say it could be. It is supposed to be some of "the best" VA care available. Maybe it is, and the system is that broken. But Aaron and I are far too young to be dealing with these issues. And now I am just plain tired of it all after the latest "incident." I am just done and now I will be going to every person I know, every corner of hope, to alleviate the trouble we've been having. I feel the fight in me waning. I would like to work part-time, go to school, and not feel that managing his healthcare is a full time job on top of trying to be a family, raise a toddler, and do other productive things with my life. I am so much more than a caregiver, but some days it feels like I am not doing enough. Right now, all I can do is get it out so I don't cry another tear today.

Aaron needs physical therapy for his back and prosthetic use. This is an issue, and we have yet to get him regular care at the VA. There's always a reason- a new consult, needing the right staff to work with him, purple people eaters took over- who knows. So he's in pain, and the best he has gotten so far is one appointment and painkillers. I have no idea why this is such a problem, but excuse me for worrying about his future mobility and wanting an appointment months ago. ETA: Aaron has made some mistakes with this, but it does not negate the fact that I feel it's taken longer than it should have to sort out regular PT appointments. He hasn't made enough mistakes for it to be next to non-existent.

Aaron needs dental work done, but the Birmingham VA has problems with this, too. Appointments are 90 days out, which means he should be able to get it done in the civilian world at no cost to him. Veteran's Choice, an old program with new wrapping paper meant to send veterans to the civilian sector at no cost, is exempt from dental care. However, fee-basis is not. There is a form for this, but we need the Chief of Dental to sign off on it. We aren't sure this is going to happen. It might. It is what needs to happen. VA Dental is not exempt from the 30 day appointment policy (it seems to think it is, as this is a system-wide issue, but it is not). I only know about this form because of other caregivers educating me, not because anyone at the VA educates me on how to obtain timely and affordable healthcare for my combat wounded husband. VA Dental is not some special program that can just shrug its shoulders and not give veterans the care they have earned. We will find out soon what Birmingham VA Dental wants to do with us; and then I will proceed with a plan to get Aaron timely dental care.

Let's also go over how Aaron missed a psychiatry appointment: He called ahead of time to confirm it. He was told over the phone that the appointment was for podiatry.
I will let you just catch your breath over that one for a moment. I know you need it.
So then, of course, he says he isn't going to go because he does not have @!#$ing feet. As it turns out, it WAS for psychiatry. The person on the phone was just illiterate. Then the appointment is marked as "patient cancelled," which can actually hurt Aaron's ability to get services in the future. So now I am working on getting the whole thing removed from his records, since it shouldn't be a mark against him that he thought he was cancelling a podiatry appointment. Hashtag insanity.

And then there's me. As far as I am concerned, the caregiver program here is... non-existent? I get my monthly stipend every month, but that is it. I feel absolutely no support from my caregiver case manager and the VA "caregiver system," whatever that is. Our tier rating was decided in DC, by a case manager who once actively tried to persuade a Fisher House employee not to approve me for a Hero Miles request. The program is in place to fly people in to aide in respite for the caregiver. She had her own rules that I never received notice on, and when I went past her for approval for a much needed flight to get help with my baby during Aaron's recovery of yet another damn surgery, I know she pushed back on the approval.

We were given Tier 2 status in DC, even though Aaron is a double-amputee and we were in a non-accessible apartment with stairs. We were not re-evaluated when we got to Birmingham. Each caregiver case manager can decide what the perimeters are for the tier levels and stipend payment. A case manager in Tennessee can decide anyone with amputations or people with all their limbs but 100% ratings gets top tier; one in DC can decide it is only for those whose warriors who can not bathe, eat, or use the bathroom without assistance. There is no consistency in this program at any level whatsoever, outside of just abject confusion what the hell matters when deciding who gets what. 

I decided to appeal our rating once we got to Birmingham, as I have never agreed with it but since we were moving decided not to fight it in DC. We were denied the appeal. Then I got a bill in the mail for $876 of over-payment of stipend since I was paid the DC rate after we moved. We did everything we could do to swiftly transfer every single service to Birmingham VA, but because the VA moves at the speed of molasses, I now have a debt to the government. And it's only my fault. It does not matter I did not deceive anyone, lie, or wait to transfer services.

I do not feel that my caregiver case manager is on my side. I actually thought she couldn't help me with the appeal; perhaps she has to remain neutral. Apparently, though, there are case managers who do advocate on behalf of the veteran and caregiver, aide in appeals, and are there for support. I certainly have not had this experience. I don't even know if a caregiver case manager is actually supposed to do anything other than handle initial tier ratings, appeals, and Hero Miles flight requests. As far as support being a caregiver, I gain that only from my involvement in organizations that the VA knows nothing about- America's Found, Wounded Warrior Project, Elizabeth Dole Foundation, Yellow Ribbon Fund, EOD Warrior Foundation, and so on. They all offer support and respite retreats, but the VA has nothing to do with this. Caregivers must find support on their own. I want to one day walk away from all of it, but right now I need the stipend. So I just take the tier we have and be grateful I haven't pissed anyone off enough to be put "under review."

I need the stipend because I am struggling with my life, and I can not imagine having to step outside of the home. Aaron can not take care of AJ for days on end alone. He has sleep issues that affect us everyday. He is in pain. When he gets sick, he gets very sick. He has reactions and side effects to vaccines and medication. He has yet to go a year without surgery, making the idea of a job laughable. What employer would hire me when I need so much time off to manage my family? But I want a job. I want to make more money and contribute more financially to my family. We are building a house. Maybe I am just an overwhelmed whiny-assed housewife who needs to grow up and learn to manage my life better. I know I am. But when my life involves needing to dedicate hours to VA follow-up and appointments, maybe it is a little more hectic than most other people's.

The thing is, I know how lucky we are. We have benefits right now that afford us housing, food, and healthcare. We do not struggle to meet our daily needs and a lot of wants. That right there makes us the 1%. I do feel fortunate. I feel ungrateful for having any complaints at all. I should just be more grateful.

But you know... this morning happened. Aaron went to the VA last night for a sleep study. They put all these sticky electrode pads all over you. So when you wake up, you go shower. He could not shower at the Birmingham VA hospital because the roll-in shower did not have a shower chair/bench for wheelchair bound people. THE BIRMINGHAM VA HOSPITAL COULD NOT ACCOMMODATE A WHEELCHAIR BOUND VETERAN. MY HUSBAND.

And then I am just done. So done. Aaron's OEF/OIF case manager is fantastic and spent an hour on the phone with me, on a day she took off to take her kid to the doctor. She cares. She is doing everything she can to get us good care- but the good care just isn't there. We have had many other minor incidences, things that did resolve themselves or we just let go of, and she has been key in each positive step. But it helps to hear that anyone would be as upset as I am, as I go between crying and raging.

Aaron does not deserve this. I do not deserve this. Millions of veterans and their families did not ask for this. I feel like we are a burden. We are asking too much. We were spoiled at Walter Reed and just expect timely care anywhere else but there. I pushed for us to come home, as I held our newborn daughter and I realized I couldn't do it all in DC- and I hurt Aaron by doing so. DC might be expensive and far from family, but Aaron had good healthcare there. He had Walter Reed. He had urology care that took his testosterone deficiency seriously. He had phone numbers for doctors' secretaries, so that he didn't have to wait months to get care. He could get skin products from the hospital, something the VA doesn't do here (no skin Marathon- a solution that helps with the wear and tear prosthetics do to him). It's constantly some other bullshit and I am so done with it. He is 36 years old, needs more medical care than an 80-year-old, was just awarded a script for hearing aides and another one for a CPAP machine. I worry constantly that I am going to be lucky to get 20 years with him, that I just pray he sees his baby girl graduate high school. I am terrified of our future- how much of one we even have. I worry he will get cancer or become immunocompromised and die from the flu. I worry about future surgeries. I worry about a car wreck and if he could save himself. I worry about him in ways that should be unnatural for a 32-year-old wife. This is bullshit.

Well, not total bullshit. Our story? A cakewalk compared to what some of my friends live with. I won't go into details, but all this- all this complaining- is not even a drop in the bucket. And I know it. But I'm still pissed, and sad, and scared. I just want to feel secure that he's going to get what he needs, and that I don't have to expend so much energy getting it for him. So much energy. I want to work, go to school, enjoy my daughter. I don't want to feel like I haven't been doing enough as Aaron's caregiver. I need to get medical records. Write emails and letters. Make contact with people who might be able to help. I need to spend more time on this. More hours. Less anger; more doing. I need to be better.

But first, I need to go home and hug my husband and precious toddler girl. I am going to fight; for Aaron, for our future, for AJ to not have a complete spazz of a mother. I am just not going to do it today.

The Posts I Never Make.

She said, "Some days I feel like shit/ Some days I wanna quit, and just be normal for a bit"

It is National Infertility Awareness Week, and I have a post about that.

My soulmate best friend is getting married this week and I am spending five days away from my baby, and there is a post about that.

We met with the Birmingham VA Chief of Staff and got a new primary provider AND are being seen off-site for urology/fertility, and there is a post about that.

My sweet, blond, blue-eyed, perfect, and WALKING baby is the light of my life and there is a post about that.

I am officially a Dole Fellow for the Elizabeth Dole Foundation, and there are SEVERAL posts about that.

I moderate a caregiver support site, and there is a post about that, too.

Our documentary got into the GI Film Fest, and of course, I have something to say about that, too. You can rent our documentary online and duh- I need to tell you about that. It's pretty amazing.

But none of that is in this post.

Right now, I am exhausted. We are at Aaron's parent's house. It is not even 9:30pm and everyone in this house is wore slap out. Aaron is sick the day before I am to disappear for five days. What we woke up to this morning is not what we're going to bed with tonight.

This is that post.

We can not catch a break.

Aaron's pretty sick and has a fair amount of back pain going on. The worst part of this is knowing how upset Aaron is with this. Have you ever had to wonder if you can take care of your kid without help? Probably not. Most of us know that we can power through and make it happen, even if it means the TV on all day and apple sauce pouches and junk food for meals. We can make it happen. I don't know what it's like to not be sure about that, and I can't imagine the feeling. It must be pretty close to feeling like shit, if you ask me.

We got Aaron a bath. My in-law's helped with bedtime for AJ and unloading the car. We are trying to figure out if Aaron is better off with AJ or driving me to the airport, but both have their issues. We don't want AJ in the car for three hours without a very good reason, so we are trying to work out who stays with her and who drives me.

He has never had a reaction to vaccines before this round of routine stuff. We fully vaccinate in this family, so this is new. Poor timing. His back has been hurting him for months and it seems to just be something he will have to deal with since he is in a wheelchair. Physical therapy, massage, chiropractic care are all on the menu so he can avoid the heavy narcotics.

It is what it is.

I honestly nearly broke down sobbing earlier. My mother-in-law and I were supposed to stop by the grocery store on our way home from dinner, so Aaron and his dad had taken our care home. Father-in-law called to say that Mom had the house keys. As we pulled up, Aaron was puking in the bushes. He never gets sick. I just wanted to cry. He just wants to feel normal, human, and he can't. Instead, he is sick and in pain and trying not to take a bunch of pills all the time to manage it all. He just wants to feel a little bit like me and you, a little bit in control.

There is so much we want to do, the little stuff everyday and the bigger goals. But we are tired. At any point, these lasting effects of 09.07.11 can appear. His body will be responding to this trauma for the rest of his life. He can go from being the guy who takes vaccines and medical care in a breeze to reacting to every single little medical thing we choose. He doesn't have legs and his life in a wheelchair will continue to tear up his back and shoulders. There is only so much we can do about it.

It is what it is.

I have a gift. I can write and speak in a way that resonates with people. But instead, I am tired. I am blessed, I hug my miracle baby everyday knowing that she is only here because Aaron fought to live, because his team members did all the right things, because he got care right away. I touch my husband's residual limbs knowing that a centimeter or an ounce difference would have left me with nothing. We have a dog, and a baby, and a plan.

But we are just so tired, and there's so much we want to do, but can't.

This is that post.

Squishy Turned One!

I never intend to stay away from here for as long as I do. Life is up and then down, or rather busy then really, really busy! I am still learning how to get things done with a kid in the mix. One, who by the way, is nearly 14 months old now! And down to one nap a day. She isn't quite walking, but she pulls up and cruises around the furniture a lot. She babbles, growls, and says "uh oh" but just to be cute. We have a real highchair now and she can feed herself diced up fruits and veggies. We still mostly spoon-feed her, but we're getting there with self-feeding. She eats just about anything, for now. Now that she's definitely teething, she is liking cold foods more than before. She sleeps through the night and wakes up between 615am and 7am. If she's up a bit early for us, I bring her to our bed with a bottle and we all cuddle. She'll reach out to touch me and Aaron, but likes his cuddles best. I do, too.

Aaron had a month-long stay at Walter Reed, with two weeks of it in the hospital. He came back right before Valentine's Day. He missed her first birthday party here, but she still had a great one. Tons of family and friends came by and I think everyone had a great time. It was in the high 50s that day, so the party spilled outside in the sun. I had two of my best girlfriends in from across the country. It was as amazing it could be. He back up there now for a doctor's appointment then off to South Africa for a plains game safari hunt, paid for in full by Safari Club International members. He is going to have a great time living out a dream.

Aaron not being here for AJ's party and first birthday won't be a one-time thing. While we have ducked out of the military life, there will still be absences. He will require medical care and it won't be appropriate for her to visit all the time. There will be hospital stays. Even though his HO and muscle surgery went well, he will still have to go through with the bone extension at some point next year (most likely). It kind of sucks that we still can't seem to get out of the lifestyle of having him miss milestones, but it is what it is.

On that note, here are some great shots from her birthday photoshoot. I am addicted to Visual Arts by Jessica. Squishy just lights up for her and we get amazing photos I couldn't love more.

What we got.

I wasn't supposed to be here this time. I was going to wait, but then he said he wouldn't be back to celebrate her first birthday, the day of on the 27th or our little party.

So I came to make sure he got something with her. Memories for both of them. You never know when pictures and videos and notes and stories are all someone has left of you. I want her to be able to look back and know just how much love she had in her early life, even the parts she'd never remember.

She won't remember this either. I'll have to tell her about her first trip to see daddy in the hospital. It's her first because it won't be her last. This is her life. Our life. It was just my life, being the one waiting on him, but it is hers, too. She makes everyone happy and he's held her while laying in his hospital bed. He dealt with her when she stepped on his nub, fresh with stitches and wounds. That's his life.

It's just what we got. It's okay.

He was so happy to see us and be surprised. He says he's sorry he can't be her daddy jungle gym. It's like the day we both teared up when we realized he'd never "airplane" her because you need legs for that. These were different days. I've already cried a lot about all the things we're all gonna miss because war came home and nearly half of him didn't. It happens, and I'm over it.

But I cling with my whole self to what we can have, and I'll be damned if we can't have a birthday party for him and her. I will be mom and take bad pictures with my iPhone. He will be dad and feed her the first bites of cake as she tries to crawl through it. Everyone will oooh and ahhh and laugh and talk about how big she is getting. Aaron was gonna miss all that, and I just couldn't allow for that to happen. There is so much already.

There might be things he does miss. It's normal. People travel. Some parents deploy. Others save lives or go to court or sell houses or work in retail. But we live everyday with what we don't get, trust me, so I'll take what we can. I'll steal it. I'll create it. I'll build it or buy it. Whatever it takes to have a tiny piece of normal and nice.

Aaron will be fine. I will be fine. Squishy will be fine. And her first birthday party ever will be in the USO center and I was able to surprise Aaron in the hospital because of Luke's Wings getting me here. I will take "date night" with sushi while sitting on the end of a hospital bed because there aren't legs there and the cuddles as he naps. I got to see him. And he ordered the sushi. My favorite.

It is what we got. And it's more than okay. It's just perfect.

When It Matters.

I never intentionally check out of this space; life just gets in the way and I realize one day I haven't done the thing I enjoy the most. And then I wait until I have to be here, because sleep will not come with a brain still running full speed, even if I am exhausted at 9pm.

We all do our bests as parents. We all feed, clothe, and love them in the best ways we can. One can not quantify being a good parent. I know I do my best. I buy her organic baby food when I don't make it myself. I breastfed for as long as I possibly could, and now give her the best formula I think my money can buy. Her diapers are eco-conscious and low in chemicals. I balance modern medicine with more natural choices; we go to a chiropractor and her well-baby appointments. When she's not feeling well or is restless, she sleeps between me and her dad. Her wish list of toys for her first Christmas was made with development in mind. I ration all medications and read about hexane and DHA and grains and cow's milk and plant milk and and AND. It doesn't matter. None of that matters. Money can't buy love but love certainly is not enough. We have to be reasonable, encourage our children, love them, let them go, push them out, and then welcome them back in. Take them to the doctor when they are sick, raise to be respectful and kind to others, teach them to work hard, to love others, be nice to pets. When they graduate, drive cars safely, help those less fortunate, join the military, become doctors I can promise you it doesn't matter if their diapers were eco-conscious or their formula all-organic or if you breastfed for 22 months or if you went through a drive-thru twice a week.

Squish wasn't herself this past Friday, and we ended up in an after hours pediatrician's clinic, with a diagnosis that probably was right but not severe enough to warrant the antibiotics I gave her four times. Her behavior improved but the side effects of the medicine increasingly got worse. I decided to pause dosing her and called the nurse's line. I know this is risky. But it had been 24 hours since her last dose and the side effects were getting worse, not better. Even though it wasn't an allergic reaction, something terrible was happening to her and I was the one giving her the thing that was doing it to her. I know, I know- probiotic, thick diaper cream, yoghurt. But none of that was going to help her diaper rash stop from getting so bad it did eventually become raw. None of that was going to help her to absorb her food's nutrition faster than she could expel it. I bargained for an appointment, and in the end I learned a very important lesson: I am her mother, and I know when something isn't right, and no nurse's line is ever going to convince me otherwise ever again. Not even for a few hours. She's going to stay off the amoxicillin and we're going to get her gut and little butt healed as fast as we can. None of this would be happening if I hadn't kept calling, kept asking trusted friends, kept listening to myself, although I didn't listen fast enough.

This isn't my fault, but I still feel a ton of guilt. I did the best I could with what I had at the time. In short course, I will have my happy baby back. Her perfect little butt will heal. We will recover from this. She is loved by so many. Her grandmothers have been here to help since dad is off to Walter Reed for more surgery with his father in my place (this was decided months ago, and another source of guilt and concern for me and a separate post). I know it will be okay.

I am sure worse is down the pipeline and this will be a foggy memory soon enough, but I won't forget the day I realized that I might just be a great mom: it's the same day I felt like like an inadequate one.

And that's one thing that matters.