Friday, May 15, 2015

special needs.

My Facebook friends are always commenting on how perfect my  husband is. It's true; if we're FB friends and you are not in the loop on the most intimate details of my life, you probably think I have this totally too-good-to-be-true marriage. It's not exactly fake, either. Mr. Hope is one of the sweetest, most loving people I know. He genuinely adores me. I love him more deeply than I have ever loved anyone ever. We really do have as much fun together as it seems.

So definitely not fake. More like...edited. 

What I don't ever talk about on Facebook (nor will I ever) is the mental illness that almost destroyed us.

Mr. Hope has bipolar disorder. Technically, it's bipolar disorder with psychotic features, but I tend to leave that last part off since the psychosis has been in check for years. But it's there. He takes a small dose of a scary little pill every night that keeps the olfactory and auditory hallucinations away. He takes a lot of medicine to keep his brain functioning in a way that's conducive to so-called normal life.

Today, I consider us lucky. Mr. Hope is so "normal" now that sometimes I forget he even has this disorder. He's been working steadily for more than two years and just got a new position at his company that came with a nearly 50% pay increase. He went from twice-weekly therapy sessions to one every other week. When bad things happen, he is better equipped to handle them. I am confident that he's going to be a great dad to Jellybean.

But if you'd asked me even four years ago, I would've had a very different take on our relationship. 

The quick and dirty version is this: when Mr. Hope and I got together I soon realized he was a binge drinker. Not every day, mind you. But, like, out of the blue he'd get blackout drunk. Sometimes he'd be verbally abusive. There was an incident that pushed me over the edge about six months in. I told him to get sober or get gone. 

He chose sober, and has been sober ever since.

The bipolar was diagnosed in the wake of this. The drinking was a way to self-medicate the mania. This is common in mental illness. Not just drinking but dependence on any substance.

Mr. Hope also has ADHD. It's pretty bad. His psychiatrist tried him on a non-habit-forming ADHD med. Things got better...until they got worse. Here's the fun thing: symptoms of ADHD and symptoms of mania look an awful lot alike. So as the shrink upped the ADHD medicine, the symptoms got worse. More medicine. More symptoms.

Eventually, the medicine broke his brain.

That marked the first time Mr. Hope logged time in a mental hospital, but not the last. After he recovered from that episode and returned to work, the shrink put him back on the same ADHD medicine. Once again, it broke his brain - only this time, it did it a lot quicker. And also a lot worse.

More hospitalizations. More leaves from work. In a three-year stretch, Mr. Hope only logged about 8 months on the job. He was actually on SSI for a couple of years. Fortunately, his company has really good short- and long-term disability. He never lost his benefits. In fact, he never went below 50% of his salary.

Taking an extended leave from work gave us a lot of time to find the right med combo. This took more than a year. No joke. When we eventually went for a consult at a world-renowned hospital, the doctors we met with said they'd never seen anyone on as many medications as Mr. Hope and still be functional. They dried him out and started fresh, and that's what got us where we are today.

When Mr. Hope returned to work, we weren't sure he was going to make it. But he did. Not only that, he excelled. He got picked for training jobs. He got assigned to special task forces. He was accepted into a prestigious leadership development program. And just this week, he was hired into the new position, jumping up two job grades in the process. 

I honestly could not be more proud.

Why am I telling you all of this? This is a blog about infertility, not mental illness, right? 

Because I wasn't entirely honest in yesterday's post. I wrote something about being afraid of the test not telling me that our kid had a damaged heart. But what I'm really afraid of - the thing I've always been afraid of - is having a kid with special needs. Not your garden variety special needs, but like the kind that keeps your kid a kid forever, even when they're 40. 

This makes me a horrible person, I know. Before anyone else says it, let me: YOU SHOULDN'T HAVE TRIED TO MAKE A BABY IF YOU WEREN'T OKAY WITH A BABY THAT NEEDED MORE LOVE AND CARE. Okay, fine. I'm awful. I'm the worst. Nothing you say can make me hate myself more than I already do.

But I know what I can handle. I know what I am capable of. I have glossed over Mr. Hope's breakdowns here but let me be clear: those were some of the worst days of my life. They were scary and dark and nearly broke me. Bouncing back - putting not only his brain back together but also our relationship - took years of hard work on both our parts. And there were times I thought we'd never get to where we are today.

This is one of the reasons I've always been more in favor of having one child, not two. If I have one and Mr. Hope's meds stop working, or if something triggers another break, I'll be okay. I can handle being a single mom of one while he is in the hospital. I can handle taking care of one kid by myself while he is healing. But two? Two seems like it might be too much. Throw in a child that requires an extreme level of care? I don't know that I could do it.

But what about autism? you ask. They can't see that on a test. This is true. We could have a kid that requires a high level of care that no diagnostic test would ever pick up. It's a gamble. I get it.

It's a gamble we were willing to take.

Anyway, there it is. The whole truth and nothing but the truth. Skewer me if you desire, but like I said: I have enough self-loathing for all of us. 


  1. Oh honey we all have those worries. And I'm sure the amazing women who have special needs children didn't think they could do it either, but once you hold your baby you will move heaven and earth to keep them safe. I think God or Nature or whomever knew what they were doing when they designed babies, it's impossible to not pledge your life to them!

    1. Except there are some women in my super-secret FB group that *seek out* special needs embryos. They actively want that responsibility. I'm not saying that I wouldn't step up, but I do think there's something to be said for being aware of what you can/cannot handle.

  2. I can completely relate. My husband has different diagnosis, but I know the financial/emotional/physical strain a lifelong diagnosis can put on a relationship. I'm glad he's getting what he needs and has found professionals who take the time to look at the whole picture. I've thought about what you're saying quite a bit. We are avoiding a neuromuscular disease but anything else in the world can happen or occur. So we may do all this for nothing and it would be- I don't have the words. At the end of the day I will love my child regardless and fully but that doesn't take away thoughts, concerns etc.

    1. Right. Exactly. You can have the fear and hope to avoid having to deal with a disease or disorder or whatever without negating the fact that you'll love your child. If you could choose a definitive path not fraught with said disease/disorder, you would, but you can't, so you at least try to stack the deck in your favor.

      I feel guilty about this, even though logically it makes sense. Why would anyone want to seek out an opportunity to battle a disease/disorder? You know?

      I so need to talk with my therapist about this.

  3. Your husband really does sound like an amazing man and after reading all of that, I'm proud of him!

    Personally, I don't think you have to apologize for the way that you feel, but I agree with Marianne: however your baby is designed you WILL be able to take care of them and love them just as they need.

    1. Thank you. He really is. It took us so long to get to where we are, but I never regret sticking it out with him. Not for a second.

      I know I will love this baby. It could be born green with vampire teeth and I'd still love it wholly and completely. I think it's natural to hope for a perfectly healthy child with no challenges to overcome. And yet I *still* feel guilty every time I am honest about this. I don't know why.

  4. Mr. Hope has done so well, and so have you. Your relationship has overcome so much difficulty and is stronger for it. Of course you will love your child regardless, but your feelings are totally natural. Probably the guilt is natural too. Its easier to be overwhelmed by these feelings when your are flooded with pregnancy hormones and anxiety and fear, but might be something to bring up with your therapist, like you said in a comment above. Personally (and now I feel guilty for even thinking this let alone commenting on it), I would wonder more about what is going on in the heads of people like those in your facebook group who actively seek out special needs embryos. Maybe they are just saints in disguise, but I guess I can't understand why they would choose that path.

    1. Some of it, for me, is needing to get out the thoughts in my head. I think a lot of people think ugly things they never say. Me, when I say them (or type them, as the case may be), I unburden myself from the ugliness. I'm thinking of writing a post about this, because I was having a lot of difficulty with us having a boy. But then I talked/cried it out with Mr. Hope on Friday night, and when I woke up on Saturday I felt completely different. Light, happy, and ready to embrace our son. I think I might just be one of those people who has to get it out there or it eats me from the inside.

      Just caught up on your blog and am SO HAPPY you're home and that everything looks okay. More in a minute.

    2. I'm glad you are feeling so much better about having a boy!! You should definitely write a post about the ugly things!

  5. Thank you for sharing this. I think it's important to point out that infertility doesn't mean we have to accept anything we get just because we get it, if fertile couples get to choose their barriers, infertile couples should too. Not that you wouldn't love them anyway, it's just a matter of having the right to choose.

    I suffer from OCD...real OCD, not the "I'm so OCD because I file my books in alphabetical order" thing that's overtaken modern vernacular. So I can relate on some levels to this, and I really appreciate when other bloggers come out about this kind of thing. It's real, more common than people realize, and it's so hard. Everyone is always saying how lucky my and my hubby are because we're such a good match for each other and we get along so well - while all of that is true, my OCD has really made some aspects of our life difficult - exhausting even - and it's something that can't really be explained unless you've been there.

    Especially since you've been there - dealing with the special needs of a serious mental health disorder - you have every right in the world to determine that you don't want to deal with that on another scale for the rest of your life. Of course, it doesn't change what might still happen at birth or after but being aware of what it entails enables you to see the full picture of what that can involve - and I think anyone judging you on that should take a firm look in the mirror. Either way, we know you'll love this baby but I pray that your fears are unfounded and maybe that you can find it in yourself to cut you a little slack - it's bean a long road for you!

    1. Wow. *BEEN, not bean!! I really need to start checking my comments before hitting post.

    2. Thank you for this. Mr. Hope and I have had this conversation so many times, and at the end we are always filled with self-loathing for having any limitations on our ability to be parents (perceived or real).

      I think part of it is that we are anomalies in the donor embryo community, as the majority of people in it are people of faith and we are not. (In my group, there is a small minority of people who aren't religious - very small.) There's a lot of "God doesn't give you anything you can't handle," and while I admire people who have that kind of religious conviction, my husband and I aren't like that. So I feel like if I speak my truth that I'm going to get a lot of advice to let go and let God, which isn't what I need.