What I've Been Thinking About

Maybe it's something about turning 30, but I have this urge like never before to have a baby. No, not just to have a baby, to have a baby. There, I said it. It doesn't mean I'll actually do anything about that—since that would require a lot of planning, given the sort of relationship I'm in, but I feel it deserves some attention.

Let me back up. When I was first diagnosed, I remember sitting in the office of the esteemed shoulder doctor, my head swirling with questions, hands shaking as they clutched the handwritten lists I'd written but forgotten. My eyes quickly shifted from the brilliant x-rays illuminating my useless bone held together by titanium plates and screws to the surgeon's white coat and kind face to the door. I wanted to run, to escape the future, to forget the words I'd just heard.

“What do I do now?” I stammered.

“There are support groups,” he said. “See a genetics counselor if you want to have a baby. We can talk about what to do if you need more surgery...”

No, no, NO!!

I wanted to scream, to shake him, to tell him that I didn't care about surgery or a baby, that I was 19 and that all I wanted was for him to be wrong. I've been told that my face doesn't mask emotion well, so I'm sure he got it. I know Cam did. We drove the 2 hours home in unusual quiet, occasionally making small talk.

Over the years, Cam and I talked about having a baby, but as my body got worse it seemed obvious that a pregnancy would be hard for me. Not that it would have mattered—since Cam was a little girl, she's wanted to have a baby. She carried the Poodle and her pregnancy was wonderful. I never felt I missed out on anything. Until now.

Cam thinks she might want another baby “in a few years.” Until recently, I was perfectly content, but now I am struggling. It's new. Foreign. We talk about it, but it's painful.

I don't want to give the wrong impression here. Adopting my older children was an amazing journey. I was blessed with four precious beings that I treasure each day. When I think of them, especially of Atiyyah and Miss Puggles, whose birth parents I do not know, I often think there was some sort of mix up that led to their being born into the wrong family and just taking a little longer to get to us. Since I know Old Boy and Monster's biological mother, I feel a little differently—mostly thankful. She gave us the most selfless gift of all, the gift of our boys.

It's not that I don't want to adopt another child, it's just that the internal voice won't relent. That damn maternal instinct (which should be satisfied by parenting four children despite the constant gnaw of pain and pummel of exhaustion) screams, “Time to have a baby!”

And what about that EDS anyway? I may catch some flack for this, but even if the stars were to align and my hips and spine were in good shape to carry a baby and I were off the cocktail of pharmaceuticals, I feel uneasy when I think about knowingly passing this on. Yet I feel just as badly about knowingly saying, “Uh-uh” to the little EDSers-to-be during a potential genetic counseling appointment. What if they had my eyes? My mind? My...? (And this from a staunch defender of reproductive rights. Do you see the mayhem that the big 3-0 has brought to my mind?!)

It's all hypothetical...if that. I will never be able to have a baby. This body barely holds itself together enough to support me, let alone me +1. I've known this for years. I'm fortunate that I have 4 living children. I'm fortunate that I have a partner who could potentially carry another child. I will never be able to have a baby. I've known this—somewhere within myself—for years.

Why then, does typing it bring tears to my eyes?

Rainy Day Rant

Someday I'd like to believe I won't have to apologize for the length of time between posts. (Absence makes the heart grow fonder?) I am sorry, though. My dear Puggle (AKA my sweet daughter) had a few rough months, but is feeling better. Nope, I haven't updated her blog either. She does have a CarePage, so if you want to stay slightly more up-to-date on her medical stuff, send me an e-mail. Now let's get to it.

I wrote an entire post about my ankle fusion, which went off without a hitch on April 28^th. I'd like to think it was informative, so I'll probably post it sometime in the near future. (I'm guessing some of you have bad ankles, too and might like to know a little more about the whole ordeal. Short synopsis: it wasn't so bad. I think I'm in more pain from having been on crutches for 19 days than from the surgery. I may have a different opinion once I start walking on the screwed-together ankle, I suppose.)

But for now, I have an entirely different agenda. If you'd like a totally feel-good post, you might want to read elsewhere. I may have mentioned earlier that I'm not always a most cheerful person. Although I've brightened up considerably since my emo-ish adolescent days, I don't quite fit in with the other PTO moms. And if I were to pick an alternate title for this post, I'd borrow the words of a bendy friend and go for: “Dear EDS, Fuck You.”

I'm not sure if it's the 19 days of hobbling or the 3 days of rain or the 2 sickly children, but I've had enough. I've had enough of the damn cast, the hospital bed, the feeling of impotence as I watch my family live their lives from whatever seat I'm consigned to at the time. I miss my bedroom, located on the unattainable 2^nd floor of our house. I miss the time when traveling from the living room to the kitchen didn't require prior planning. I miss feeling like a contributing member of anything.

I went in yesterday and had my stitches removed and a new (hopefully final) cast put on my ankle. If all goes as planned, in two weeks, I'll be out of this cast and back in a walking boot (although there will likely come instructions not to do much walking.) This will give me the freedom to climb stairs, carry the Puggle, and do a whole lot more without difficulty (drive, shower, etc.)

Why, then, can't I just look forward to the nicely-fused, cast-free future (i.e. May 31^st @ 9 am, not that anyone's keeping track)?

Because EDS just hasn't given me a break—EVER. Every time I thought, “This is it; I'm done,” out popped some new symptom to be dealt with. Dislocations or pain or dysautonomia or migraines or seizures or reflux or medication intolerance. It's been a long time since I've felt like ME...sometimes I don't even know how that's supposed to feel anymore.

Then again...just when I've resigned myself to a certain level of disability, hope does seem to shine through. Last year, I thought I was wheelchair-headed for sure, but now I don't know. I managed to walk pretty well for a while this year. My new knee brace is promising. My new ankle is promising. I finally found a medication that stopped the headaches. And while I may not be able to eat bagels, my stomach and I are on slightly better terms than we were last year.

So here's the truth—I'm scared. I'm scared of what the future holds. I'm afraid of failure. I'm afraid I will never be able to stop crying.

That may not be very encouraging for those of you who are newly diagnosed or wanted something uplifting, but that's the truth. I want a life that is more than a collection of diagnoses and a laundry list of (failed) surgeries. I want a life in spite of it. I have 4 children who need me. When I was first told I had EDS, at age 19, it meant little to me. It explained my crazy joints and rationalized a shoulder fusion. I had no idea how great the impact would be. I don't think my doctors knew. Ugh. (And if they could see me now!!)

A rheumatologist I saw had this to say about EDS:

“We used to call EDS 'Benign' because it doesn't destroy the joints in the same way as say, Rheumatoid Arthritis, does without treatment. We no longer call it benign because while it may not destroy your joints, it destroys your life.”

True.

But while I'm glad ecstatic for the understanding, and while I am afraid of what the future holds, I refuse to let EDS destroy my life.

And while I don't knock any of the following, I just wish there was treatment besides writing, crying and camaraderie. And joint fusion.

-Xan

P.S. I will have better things to write about in the near future. So thanks for reading and I'd by honored if you continued to do so!

Unprepared

So yesterday I implored the general public to be generally nicer...and today it happened. So you'd think I'd be prepared, right?

In the words of my 3 year old, “No, nope, never.”

I was actually outside the preschool of said-3 year old when it happened. It was 20 minutes before closing and I had been driving for an hour, having left Old Boy's outpatient OT appointment right at rush hour.

Puggles and the Poodle were sleeping in the van.

Monster's preschool is in a large building in the back of an old mill complex. Since there is no view of the parking lot from his classroom and picking him up is often an unnecessarily long process fraught with odd rituals and delays, I am uncomfortable leaving the two little ones alone in the car.

Since I can't walk well and neither of them can walk at all, the only choice the three of us were left with was to use the double stroller. Luckily, our double stroller is light (enough). However, I was completely exhausted, so the thought of lifting anything more than a banana felt overwhelming. And I knew that getting the stroller out was only the first of several undesirable steps including probably waking two children, rushing in to pick up my anxious toddler (who hates being picked up when “the sun is sleeping”), then repeating the whole process to get back into the van and home.

I must have looked as tired and miserable as I felt at the moment that I opened the rear door of my mini van and pulled out the stroller because another mom a few cars over asked, “Do you need some help?”

I was so taken aback by the question that I didn't quite know what to say. I'm fairly sure I stared at her blankly for a moment.

 

--Am I dreaming? Is someone actually offering help?--

Of course, I graciously accepted stammered something unintelligible before saying, “No, I'm ok.”

She gave me a look of complete non-belief.

“I just have to pick up my son,” I continued, as though the sling, brace, limp, and obvious exhaustion were commonplace... “My two little ones are sleeping and I have to bring them in with me. It just takes a little longer, that's all.” Oh lies, lies, lies.

“Oh, ok,” she said, probably half-relieved and entirely confused. “It's just that you look so--” Disabled? Exhausted? Forlorn? All three? “But as long as you're alright.”

“I'm alright,” I parroted. “Thank you, though.”

She drove off and I slowly got the little ones into the stroller, managing to keep the Poodle sleeping and Puggles hooked up to her feed. I hobbled in to get Monster, who ran happily to meet me, which temporarily eased the exhaustion. I gladly chatted with him and piled everyone back in the car in what I felt was a reasonable amount of time.

Still, I could have accepted this kind stranger's assistance. I could have asked her to stand with the kids for a minute or to run into the preschool for me, or something. For goodness sake, I'm a mom and beyond that, I'm human. If I had seen anyone in the shape I was in tonight, I would have offered to help them--and not just out of obligation, but because I'd genuinely want to do so. Instead, tonight I was just too me—shy and stubborn and independent and leery all rolled into one.

Jeez. No wonder people drop the door on me.

Week in Review, My Thoughts on Public Hobbling

 

This past week has been crazy-busy with appointments of every kind for me and the kids. We also seemed to have wrapped up the week of stomach-yuckiness, until I was stricken yesterday afternoon. I think I made out much better than my poor kids and wife, though. Everything has stayed in, perhaps as a result of the many painkillers, but I feel gross. Thankfully, the big guys had school today and Cam took the Poodle out with her, so Puggles and I just maxed and relaxed. It's funny—Puggles is exclusively tube fed as a result of her genetic disorder and dysmotility. (I will eventually get her blog to be more than a figment of my imagination), but I swear sometimes she wants to eat. Either that or she's teasing me. Today, as I was forcing myself to eat Saltines and sip ginger ale so that I could take my regular meds, she was practically wiggling out of her seat whining at me. Out of common courtesy, I offered her a cracker. She looked at me like I was crazy!

So aside from my current stomach woes, I've actually been getting out of the house recently—to places other than the hospital and pharmacy, no less. It's still a work in progress. Some days I feel fabulous. On Sunday, we had the Poodle's birthday party, and I had so much fun.

We have some pretty awesome friends and family. One of Puggles' little friends, Skye, came over after the party with her parents, and we all enjoyed feeling normal for the evening.

I notice now when I go out in public (right arm in sling, left in brace, limping with a crutch), I'm met with one of two reactions:

1. The Over-Reaction
   People keep their kids away from me and generally treat me like I'm dying. Also, like I'm deaf. A very strange conversation took place behind me at Stop & Shop. It was between two women trying to figure out how to pass me in an aisle and was **VERY** dramatic. I felt like turning around and informing them that I was able to hear them or like whacking them with my crutch as they attempted to rush by. I didn't.
2. Complete Ignorance
   People either have no common courtesy, are completely oblivious to what goes on around them or think that a person with a physical disability would be appalled at any offer of help. This past weekend I went to Old Navy to get a Halloween costume with Old Boy. After shopping for a while and standing in line, he was even more wired than usual; I was even more tired. We walked to the doors with a group of people no more than three feet behind us. Instead of taking a step forward to grab the door for me as I struggled with a large bag, a crutch, a heavy door and a hyperactive child, the group pushed into us and huffed.

For cripes sake. It isn't that difficult. To the over-reactors: If I were in some critical condition, it's unlikely you'd find me at the grocery store or Old Navy. You don't need to whisper near me or avert your eyes. To the second group: have some decency. I'm not suggesting that anyone make a big show out of helping a person with a physical disability if they appear to be doing fine on their own, but if someone seems to be struggling, it doesn't hurt to ask if they need a hand. Furthermore, this doesn't just hold true for a person with a cane, but for any person. (After all, I'm still disabled on days when I'm not wearing the sling and using the crutch.) What's the worst that could happen? You might get snapped at. But chances are, you won't. And as a person with a crutch, I've really appreciated door-holding recently!

So overall, a pretty good week. I actually had two very productive appointments with new providers (for myself.) I have a great deal of anxiety when it comes to seeing new providers, especially since I am prescribed a lot of pain medication and have had some unpleasant experiences along those lines. To my pleasant surprise, both the neurologist and the gastroenterologist took the time to research EDS and were thoughtful and kind. Wow.