Friday, March 22, 2013

An unexpected loss in the community.

When we (as in, Aaron, me, and our families) arrived at Bethesda in September 2011 we were very scared and unsure. The very first fellow caregivers to speak to us were Siobhan and Krystina, who were there for Derek (his mom and girlfriend). Derek had already been in ICU for 50 days when we arrived. Derek was a very sick man and more than once he was almost lost. However, he pushed through. For the past 20 months he has worked harder than anyone else I've met at the hospital. He and Krystina won a dream wedding, totally $80,000 in worth, just this past December. He had recently begun the med board process and looked forward to going back home to Jersey and finally beginning his life. Here is their initial story as told by Siobhan.

So it has been a huge, terrible shock to learn of his sudden passing. There aren't any details known yet, but it happened at point where he would have been sleeping. Krystina discovered him. After so much hard work and hope, everyone who knew this family is devastated. There is nothing to be understood about Derek passing away because it isn't understandable, fair, or even comprehensible. I absolutely can not imagine the pain his family is feeling. Siobhan composed a beautiful good-bye letter to Derek on a site she was very passionate about, DC Military Family Life.

Siobhan and Krystina are the molds for caregivers. They did whatever it took to make sure Derek got what he needed, and didn't care who had to work harder or get pissed to do it. The hell they are in now is literally the most unfair situation I have ever heard of and I honestly can not process it. Derek was quiet but well-composed and a talented writer. Krystina constantly posted about their shenanigans and how much fun they had together. High school sweethearts, they spent a total of six years together. A lot of marriages don't last that long.

Here is a link to donate at Operation Ward 57. If there was a post of mine to re-post and share, it is this one. It is not about the money- it is about making this family feel loved and remembered for all they have been through. It's about making sure that they never feel alone in their new journey. They were on the brink of the rest of their lives when it was so unjustly robbed from them. When they post information on which charities to donate to in Derek's honor I will be sure to share it with you all. That is just the kind of people they are, which is all the more reason to drop a dollar or ten at the link for them.

I will not claim to know them particularly well, but you didn't have to be affected by this massive loss to the Walter Reed community. Derek was a friend of the animals, and had just selected his service dog. Krystina had just picked out her wedding dress. They were so ready to move on and move home, and that is exactly where he will be taken now. I had the opportunity to hug his mom the other day. My entire family remembers their brief encounters with her because she was there to hug and coach us in those early days when we had no idea what to do or how to proceed with Aaron. Now it's our turn to pass love onto Derek's family. Whenever I spoke of caregivers and the price they pay, I always thought of them. They have sacrificed so much.

So please, share this link. Share their story. If you never share another thing from me, just share this.

Sunday, March 10, 2013

Hope kills but love perseveres.

I can not thank each person who read my last post enough. The outpouring of support and condolences overwhelmed me with love. The post even reached people who could possibly help us through this mess, as well as get the story out there. It's not just me and Aaron going through this, I assure you. I'm not an ideal voice for anyone but myself, but I am willing to talk. Thank you all, again and one thousand times. It will get better.

We've had some time to process this mess we're in. Retirement seemed imminent and unwelcome until the only other option was presented: continue on active duty (COAD). For more reasons than I think I can list, that is really not a good option for Aaron or me as his wife. And since it seems that we are in this together, we have discussed it. Just... no. I do not trust the regular Army to know what to do with him when he needs medical care, or anything else related to his unique situation (I have seen this demonstrated time and time again, unfortunately, with other soldiers who COAD), which is just one compelling reason for us to move on. Financially, employment-wise, the ability to settle down... all of these are things COAD would make difficult. There is a lot of aide (like receiving a home) we can't accept while he's active duty. So, yeah. That COAD info sheet put things into perspective really quickly. Retirement it is.

Delaying retirement is also a non-option, as it would take a catastrophic medical event for that to happen- and let's just go ahead and say "hell no" to that. We've had all the fun we're going to have with this whole routine of losing limbs and recovery and such, thankyouverymuch. Aaron does not have to start all over at a VA with treatment when he becomes a veteran; he can continue some services at Bethesda. There is that and that's all there is to it. The rest of our life together is coming at us, like balls in a batting cage. We're swinging as best we can.

After looking myself in the mirror and talking to Aaron, he supports the so-called decision that attempting IVF in a few short months is probably epically reckless of us, if not ludicrous. IVF is not for the weak, but the super human. Having children under any circumstance should not be a forced issue, either. I am not in great physical condition at the moment. In fact, I'm pretty wrecked from care giving. I've been off and on birth control because I either bled through the pack and stopped taking it, or stress screwed my cycle up so I took the pills to have some consistency. I just don't think I nor Aaron can handle that this year. I am not happy, at all, that realizing this could jeopardize our chances of making a kid at all and forever, but that's the reality of it. Perhaps if there is workable sperm we can freeze it and attempt IVF in a few years, when we had planned on  it, anyway. Aaron and I both feel that IVF at this time would damage our relationship. We just... can't. Sigh. So even if it is an option, it's not one we want to gamble on at the moment. Yes, babies are wonderful and usually having one is the most adverse situation a couple faces. Aaron and I are pretty well versed in adversary and we just can't elect into any more.

Aaron and I did not get married to have kids. I don't know if anyone does, really. What I'm trying to say is that kids don't make or break this for us. This doesn't make us "better" than people who do decide on kids, and go through many different means to become parents. We got married and agreed that kids could happen in the future. Neither one of us lobbied for more than one or two. In fact, before we said our vows, we spent more time talking about adoption as a means than the more traditional method. I know we have the capacity to love a child we did not create and that gives me more confidence in being a parent than our ability to make and bake.

 I just did not fancy myself a mom without a partner. I never dreamt of babies. Call me dysfunctional, but that's the truth. A lot of that has to do with my very turbulent relationship with my uterus. It's never been an easy or pleasant ride, so I've never really harbored good feelings about it. Basically, everything else my uterus has done has sucked so I would never expect it function well in baby making, either. I could be wrong, however. Maybe it was only made for baby making and the rest of it (not making babies every month, thank God) just sucks. So there is my explanation/excuse for why I never thought about becoming a mom. It feels a little bit like it's biting me in the ass, but that's ridiculous. The universe does not work this way. I doubt God works that way, either.

But. But. Aaron does things to me and my brain, and I'd love nothing else more than to have a mini-me/him running around. Maybe even one for each of us. And as always, becoming parents should be a choice. It's not fair, nor will it ever be, that the choice was taken away from him and his wife. That will always be awful, and yet another cost of war. That's what he gave up to go do his country's bidding, to protect other soldiers by taking on that bomb, to be an EOD team leader, a service member, a hero. It's bullshit if I ever heard it. He deserved so much better than this.

I am not okay with any of this but I am content with it. Aaron and I will probably adopt in a few years. We will eventually be okay with all of this. What I really appreciate more than anyone could know is how supportive Aaron has been. It terrified me to be honest with him and tell him that I just didn't think I could go through IVF in a few months and what that might cost us. He just wants us to be happy and healthy in every moment, and he knows that we will be happy later with or without a biological child. Or any child at all. Who knows. We do have some choices (like, two. Kidding, we have four).

We have each other. We have each other. We have each other! And if that's all we get in this lifetime, we already got more than we bargained for. More than we ever could have hoped for. I am so lucky to wake up next to him, to be his wife, his caregiver, his partner. It's not easy but I have never, not once, thought that it wasn't worth it. My marriage has already been through hell and back and we're just a month short of our third anniversary. We know what we're made of, what it means to work and lose and fight and cry and still laugh. Every morning starts with laughter. This ain't easy, but if he can still text me "boobies" hours after I've had another meltdown, I know we'll be alright. I don't need anything or anyone else, really.

And on a little bit of a more content and not-quite-happy-but-not-morose note, that's all I have to say about that. (I am also going back to a therapist and probably going to get a little medicinal assistance for a few months, because my anxiety is through the damn roof. But I am doing okay.)

Tuesday, March 5, 2013

Between a bullet and a baby.

This is as real as it gets.

This is the part that hurts as much as it did when I found out my husband lost his legs in war.

This is one of those posts I never thought I'd write. And as for writing, I don't know what else to do right now. I've certainly cried enough. I've got to get this out.

Aaron's VA and DoD disability ratings came back. There are definitely some things to appeal with the VA packet nor are we sure about the DoD packet. Once he signs off on the DoD side though, it's 90 days until retirement. It is an understatement to say that he is not ready for that yet. We could definitely say he could be good to go in six moths. We are not sure if we can delay anything at all yet, or how long we'll be able to do so. It's all kinds of a mess that is happening much too quickly for us both. And then it gets worse.

We also had a meeting with urology and the doctor he's had in that service since he arrived. Aaron's been on testosterone therapy for almost the past year and a half straight. First it was shots every two weeks that I gave him (poorly) and then he tried implanted pellets that dissolved in his back. He had his testosterone tested about a month ago, near the end of when the pellets would be effective. It was lower than what is considered normal (300-1200). He has never had a sperm analysis done because either his testosterone would be too low or the therapy he was on was inhibiting production. There was an attempt at a sperm harvest 11 days post blast while he was still in ICU, which obviously came up with nothing. We knew all the facts about testosterone therapy but didn't bat an eye about him getting the medicine he needed. Testosterone is essential to many functions like mood, sleep, appetite, and energy. We planned on looking into becoming parents at some point, but not any time soon. We also knew how he'd get his sperm production in gear: Clomid. Yes, that Clomid: the medicine women usually take to help with their fertility issues. It boosts testosertone in men, too but without inhibiting sperm production. It takes about 90 days to get an answer on it, though. Do you see how that's the second time "90 days" has been mentioned in this post? Do you see where this is going?

Somehow, someway, we've been put under the gun with a lot of life-changing decisions, including parenthood. If there is sperm, we have to pull the trigger on proceeding with IVF immediately after finding out. That would be June for us, also about the time the military is trying to retire him.

Last year, Congress approved "free" (not free-free, because someone does pay for it, of course) IVF for active duty members who sustained fertility threatening injuries while in theater. Yes, the woman receives the IVF and I know some people have a problem with that but I can't really help anyone who thinks that to understand it better. However, the free IVF does not extend to veterans; even those who were injured in war; even those who have been active duty since the policy passed; and it is only his tired, long, determined, and paced recovery that has prevented him from pursuing parenthood sooner. So again, if there is sperm and we want to try with IVF in a situation we've grown to trust, we have to do it over the summer. If we don't want to worry about seeing if Congress extends the program to veterans, or how we'll raise the money, we will have to do it soon. And that's if his retirement can even be delayed. That's if IVF is even an option. The answer could be "no."

Honestly, neither one of us has any idea what to think or what to do about all of this. We are completely stunned and emotionally drained.

Are we even ready to approach parenthood? Financially, yes. We would make great parents, as well. Awesome, actually. We want a child eventually, so why isn't now good enough? Does our complete horror and confusion over the whole situation discount the fact that we still feel robbed of having a damn choice at all? What about our dreams, our goals, the things we'd like to have on the table before attempting to bring life into this world? Aaron doesn't even know where he wants to work yet. I am nowhere near finishing school. And what about my body? I've been taking birth control off and on for the past two years. Do we want a child "less" just because of the decisions we made for our health and not for the end goal of having a kid? Do we care less than anyone else? Trust me, there have been more cares given, more tears shed, and more hope gained and lost over the past 18 months than I ever thought humanly possible. It has been more than I will ever be able to articulate. Just... so much more than we ever thought it could be.

But how do we turn down the chance at IVF over the summer? We'd be foolish not to give it a try. And we have to least try. But when does it count? When do we get to be completely devastated that we don't get a chance to have our own kid? Is one IVF cycle enough? If I don't switch out his body wash and deodorant for all natural products, did we want it enough? Is me being on birth control the past two years mean that we didn't want it enough? Does the fact that I wasn't sure I even wanted children at all until I married Aaron mean that I didn't want it enough? Does it matter than I didn't spend my 20s dreaming of the day I'd be a mother? Or how he said he'd be a lifelong bachelor, until he met me- does that mean we didn't want this enough? Is the fact that we opted into testosterone therapy 18 months ago, knowing what it could do in the long term, mean that we didn't try hard enough to be parents to our biological child? Does the fact that we don't consider using donor sperm an option mean that we just don't want me pregnant, with some genes instead of none, enough? Is it that we don't deserve it, that we don't get to say that the idea of being told "no" hurts more than we thought it would because we admit doing it now is scary, too? Where's the goddamn line? For the record, we are more than okay with adoption. We welcome it, actually. We just didn't actually think that it might be the only way we become parents. Maybe that's the problem- we're so okay with adoption that the universe has conspired against us to make it happen. We chose Aaron's immediate health over trying to make a baby in the middle of his life-saving recovery, during what possibly could have been the worst time in our lives, and now we are paying for it- that's it, right? We just didn't love God and Jesus enough, did we? We should just lie down now and give it up. We clearly didn't want this enough.

Here's the thing, plain and simple: There is no reason why we would have ever thought that we couldn't make the parenthood choice on our time, on our own dime, and for our own reasons. We just found out that the free IVF is only for active duty, so we didn't think about this six months ago when it would have been appropriate to do so (yet another understatement). Just a minor detail.

We both spent our 20s making our own choices and enjoying the hell out of it. As capable adults, we made choices together after we got married. Everyone gets some choices. But you know, since September 7, 2011 a lot of choices have been taken from us. He has lost more than anyone will ever know. I've adapted, adjusted, bounced, bended, and accepted enough "new" circumstances for 100 marriages, let alone just ours. I've bitched and moaned, yes. I've lamented who I was and what I've had to give up on this site quite a bit. But I'll be damned if anyone else wouldn't have done it, either.

 I have bled myself dry, over and over again, convinced I had nothing more to give this situation, only to wake up again and give more. Does the fact that we might bookend this experience with full IVF, shots and all, terrify the life out of me? Yes. I am terrified that I can't do it. I'm terrified I'll start it and it'll finally be too much. I am terrified it will be the last I have to give this situation. And does me admitting that mean that I just really don't want it bad enough, and I should quit my dramatic complaining right now? Will no one want to listen when I sob because we just couldn't do it? This is further complicated by the fact that Aaron does need some testosterone therapy. He can't just not take it and chill out until we're ready to give it a shot. We don't know how long he can take Clomid or even if that will be enough. It's not as simple as "wait and see." He'll need something, so just how badly do we want to try for our own kid if we're willing to pass just to keep him healthy? Will people think that I didn't want it enough? Who the hell knows. For every one IVF cycle you do, some other woman did 10. For every shot you had, someone else had five. Who is ever enough, anyway? Why do I not get to be totally lost, even if we realize we just can't do it- and again, that's if it's even an option. If. It. Is. Even. An. Option. At. All.

We have been utterly stunned the last few days. We can not believe that retirement, job future, moving, and parenthood would all come crashing down like this at one time. I haven't logged into my online schoolwork in days. The apartment is a wreck. We're both off the rails, emotionally. We just have no idea what to do, where to go, what to say, what to think, or even how to stop being shocked and start doing something.

This is not what we wanted. This isn't what I wanted for him. I'm more upset at the idea of him not being a father to his own bio-kid than I am about the idea of me not being a bio-mom. I spent 27 years and change convinced no one would want this with me, and I didn't want children outside of a two-person partnership. Then came Aaron. Aaron changed it all. Aaron made my ovaries explode, what with his dimples and blue eyes. His brillance makes me want a smart-assed boy child who plays with trains and Legos (like him) and loves to dance (like me). You know, after all the shit- well. No one is promised anything. And we can only control ourselves. I feel it's trite to end this with "but we love each other and that's all that matters." It goes without saying, actually. It's not a perfect marriage but it's ours- our sick, laughter-filled, tear-streaked, and beat-the-hell-up-but-we-fought-back-for-it-ALL marriage. This won't break us up, but it does break our hearts.

And that's all I have to say about that.