The vacation post.

I’m in a house on the shore of Lake Erie waiting for the rain to stop so we can go swimming. Every day this week, we’ve had beautiful weather and I haven’t even opened the computer for anything (until last night when I got an e-mail announcing Land’s End’s end of season swimsuit sale – now the kids all have new suits for next year in the mail) because I haven’t felt like it. On vacation, you can pretend the real world doesn’t exist. You can pretend that nothing bad is happening anywhere in the world because you’re watching your kids splash and swim in the water like fishes and digging holes to China in the sand with their cousins. On vacation, you can watch the sun set over Cedar Point and imagine that, even though it’s miles away, you can hear people screaming on the roller coasters. You can eat cookies and chips and drink pop and pretend there are no calories (ha!).

(On a side note, on vacation you can stress about trying to make everybody happy when you’re staying with more than one family. You can stress about the weather, sunburns, and schedules. You can worry about your kids waking everyone up before 6:00 and whining all day because they stayed up too late, again. You can stress about making sure your kids don’t eat too much junk or telling on their cousins even though they aren’t being angels either.)

I’ve thought of lots of silly things to write about – cute things the kids said (like Sienna who was singing “This Little Light of Mine” and said “Won’t let Santa pffff it out, I’m gonna let it shine”), how amazed I am at how well my kids are swimming. I have watched Ethan in swim class – he jumps into the deep end and can swim to his instructor, so I knew he was doing great; but the girls shocked me because, without noodles or swim rings, they would sort of dive under the water and kick their feet (Sienna with her little bum way in the air) and actually move forward.

I thought about writing about how it’s so hard to not worry that I’m going to upset Tom’s family (with whom we are vacationing) because we doing things differently. (You know I always worry about making sure people know that just because I do things a certain way doesn’t mean I think everyone has to do it that way – that I’m right and they are wrong.) I’m a bit anal retentive – I have a hard time letting go of normal routines and diets even on vacation, especially where the kids are concerned. I feel like I seem like a mean mommy for saying “no” to my kids if they ask for too many treats, or if I say it’s time for bed at 8:30 or 9:00 or if I insist they take a nap one day instead of swimming more or going some place fun.

I thought about writing about how much I hate vitiligo and how I feel like a leper or how I have eaten too much and feel like a big blob – and yet I keep eating and eating.

I thought about writing how I’ve only had one bad headache this week and how that makes me happy and scared at the same time; happy because I feel good, scared because I doubt it will last.

I even thought about writing about “The Count of Monte Cristo” because I just finished reading it on  my Nook yesterday. (And even how I love my Nook!!) How amazingly “religious” Alexandre Dumas was. I was truly awed by how faith played the most significant role in the book without seeming like it was a “Christian” book. In fact, I’ve read several “classics” recently and so many of them just assume that everyone believes in God and He just plays a natural part in those books. Too many “Christian” books these days feel so forced. It makes me excited to think that someday, in heaven, I’ll meet the author of “The Three Musketeers”!

But in the end, I didn’t feel like writing about any of those things because, even though it’s raining, I’m still on vacation and I don’t feel like thinking hard enough to write about anything deep or important. I don’t feel like proofreading or editing or even rereading anything I wrote. I just want to start another book on my Nook and pretend that tomorrow, we won’t be going back to reality.

Why?

So here I am in my collar. I don’t have the CTO vest or the traction unit yet, but I ordered them out of pocket because I don’t know who keeps messing up, but between the pharmacy, the doctor’s office, and my insurance company, I’m no farther now than I was three weeks ago as far as getting them ordered. Insurance won’t cover them when I order myself unless I fax a request for approval and then order through a licensed provider but I don’t care anymore. I get too anxious too easily and I’m just plain sick of making a bazillion calls and not having anyone call back. So hopefully those things will get here soon.

In the meantime, I thought the collar was helping (and I still think it does) but yesterday, no matter what I did, I couldn’t make my head feel better. I got “cough” headaches every time I turned my head up and down or side to side. So I wore the collar almost all day and still, by afternoon, I was so miserable that I couldn’t move.

I got angry. I don’t know what to do other than cry. I can’t definitively say that what Dr. Bolognse from The Chiari Institute said won’t help because I haven’t gotten the traction or the CTO yet, but it’s really discouraging to feel so terrible even with the collar that I’m supposed to use “to treat symptoms”. And I can’t take the Diamox anymore because I was losing my hearing with it and that was kind of what I was “banking” on. Really, I have felt marginally better with the collar, but not enough to say that it’s really helping. Especially not yesterday and today where, even with it on, my head feels like it will explode.

So last night, I went to bed at 9:00 and laid there crying. Why? Why the heck does God not help me? Why does it feel like He’s ignoring me (again)? I do believe He can heal me – I do! I also believe that He doesn’t always do what we want – just like our kids might think they know what’s best but we, as parents, know better. We have to let our kids experience pain sometimes – no matter how much we want to protect them – or they’ll never mature. I get the feeling that that’s what’s happening to me right now. But gosh, I’m ticked.

I just want to play with my kids. Go on a freaking walk. Cook dinner. Clean my house. Do laundry and pack for vacation. I’m not asking to be able to run a marathon – I just want to go on a bike ride. Forget the 30 mile rides I did last year. I just want to do 10 miles. I’m sick of being worthless around my house. I’m sick of telling my kids to please be quiet because it hurts my head when they make noise. I’m sick of telling them they will have to play by themselves unless we do something calm and quiet.

Last night, I apologized for being really short with Ethan, Kaylee and Sienna. It’s hard when you have a headache and it’s like 100 degrees outside and the kids are stir crazy. I snapped a lot. So when I was putting them to bed, I told them I was sorry and sweet, sweet Ethan said, “Mommy, we know you don’t mean to be angry. We know your head hurts and you just want to feel better.” Blubbery mess of tears.

Where did I get these kids?

Yep. From God. I may feel like He doesn’t care, but he didn’t give me a “typical” boy or obnoxious girls. Ethan can be rambunctious, but in general, he’s just a calm, laid back little guy. And the girls usually take their cues from him. I really want to freak out on God – to scream and whine and complain. (Well, I have done that…) But God knew that I needed these kids.

I want so bad to be typing that the collar is a miracle. I desperately hope I can say that the CTO and traction will be a miracle. I admit, though, I am full of doubt. Not that I don’t trust God, but I don’t know if He wants me to be better. There are lots of people (Paul – as in Saint Paul from the Bible, who was in prison, beaten nearly to death, shipwrecked… And if that weren’t enough, in 1 Corinthians he mentions a “thorn in the flesh” that he pleaded with God to take away and God didn’t. We know God’s answer: My grace is sufficient for you, for my power is made perfect in weakness.) who love God and serve Him with their whole heart, yet God allows them to suffer.

I’m at a low point. I admit it. In one of my poems I wrote about how huge mustard seeds are. Currently, I have faith the size of a molecule. And maybe even that’s exaggerating. Despair has a pretty good clutch on my heart, too. I want to comfort myself with the knowledge that my physical body will be restored to perfect health when Jesus comes back to take us to His Father’s house. To my Father’s house. That’s a nice thought. Really, it is. But right now, when I feel like crud and I don’t see an end…

Who are you and what have you done with my son?

Ahh, the phase where your kid tests you to see if your limits have changed – which, of course they haven’t.

Let’s see how much back talking Mommy can endure.

How much whining before you give in to me?

What if I sneak in a little lie?

Maybe I can swat my sister and get away with it if I come up with a good enough excuse for doing it.

Perhaps I can be very loud and scream to get my way.

Pouting might work.

Flopping around like a fish could work.

Maybe I’ll try saying “No” when Daddy asks me to do something.

 

Ahh, poor child. You shall receive much cayenne pepper on your tongue, swats on your behind, toys in time out, and early bed times. After all this, you will realize that mommy and daddy are the same yesterday, today, and tomorrow too.

Thankfully, I know that this, too, shall pass. You’ll be back to “normal” soon. Until then, please let my son know that I miss him.

It’s finally setting in.

It’s been two weeks now since I received an answer to my chronic pain. At first, it was such a joy and a relief to have an answer and a name for what’s going on. And I’m still glad – after all, I’m not imagining all this. I’m not a hypochondriac.

And for the last two weeks, I’ve been – er – negotiating with the insurance, the pharmacy and the doctor’s office, trying to get the collar, traction unit, and CTO vest so that I can start to feel better. I also started losing my hearing, which must have been from the Diamox, because I stopped taking it and I’m starting to hear again. But that means that the Diamox won’t help my headaches.

Anyway, I finally decided to order the collar (Aspen Vista TX, in case you are wondering) myself because I just want relief. In my mind, everything was hinging on the collar – if it doesn’t help, I’m hopeless again. I got it yesterday and well, it’s not comfortable like I had hoped it might be. I’m sure I just need to get used to it. And I’m guessing that the fact that my neck bones are in the wrong positions doesn’t help because they “resist” the collar. Maybe they will conform to it over time?

So for now, my plan is to wear the collar for 1/2 hour at a time – and build up to longer periods of time. But the fact that it wasn’t/isn’t a “magic” fix has discouraged me. And it hit me that Ehlers-Danlos and Chiari are life-long conditions. The best thing for me is that when I get older, my joints will tighten up and that might help. But when???

I tell you, there are days when I just don’t know how on earth I will ever survive another day and another headache.

My kids are better than your kids.

No really, they are. And they will always be cuter. Because I will never acknowledge that any kid is cute unless I can add on how much cuter my kid is. For example…

You: Isn’t Bobby so adorable? He won second place a photo contest!

Me: Yes. Too bad he doesn’t have a swirly cow-lick on his head like Ethan, he probably would have won then.

 

You: Oh, you should hear how well my Adriana sings. She got the lead in the church preschool play.

Me: I’m sure she’s just amazing. Sienna was selected to sing “The Star Spangled Banner” for the Indians’ home opener next season. Ahem.

 

You: Olivia’s curls are adorable. No one else in our family has curls!

Me: They are cute. Oh, look at Kaylee with her golden blond curls. She’s the only blond in our family and she got curls.

 

You: Did you hear Max say “please”? He’s just so polite.

Me: That’s great. My kids say “please” all the time. And “thank you” and “how can I help you?” They’re basically perfect.

 

Of course, I never actually say that. And mostly, I don’t think those things either – at least not to that degree. I’ll admit: I think my kids are basically perfect. But not because they are always obedient or super smart or adorable or friendly or good athletes or any other thing that’s worth bragging about. They are perfect because they are my kids. And guess what? People are supposed to think their kids are the best kids in the whole world. People are supposed to be more proud of their own children more than anyone else in the world.

It breaks my heart to hear people refer to their own babies as “brats” or “monsters”. Or when they say their own kids are stupid and how they can’t wait until they are old enough to move out. I’m not saying you can’t ever be annoyed with your own kids. I get annoyed with mine quite a bit – little kids’ll make you crazy sometimes. But when you believe your kids really are brats or stupid or losers, I tend to think that’s what they will become. More than anyone else in the world, children believe what their parents say (and believe) about them. That’s why they need unconditional love. They need you to say they are awesome even though they lost the race because they did their best. They need you to tell them that not everyone gets A’s in school all the time, what matters is that they worked hard and studied and did their project to the best of their ability. They need to know that even if the rest of the world thinks they look goofy in glasses – or even because they don’t have blond curls – that their mom and dad will always think they are beautiful. If parents don’t believe their kids are good enough unless they are on top, that’s what the kids will believe, too. And let’s face it, most kids are not the best at everything they do.

So for the record, my kids are better than your kids, no matter what. And if you tell me yours are better than mine? Well, I’ll never agree with you, but I’ll know where you’re coming from and we’ll have to agree to disagree.

 

Grumpy, Sleepy, Sneezy

The kids are passing around a summer cold. They got to stay up for fireworks last night – in bed after 11:00. Mommy’s not giving in to the crocodile tears. Hi-ho. Hi-ho.

The official diagnosis

Well, after an adventurous trip to Long Island, New York (one in which the navigator missed a sign and the poor, handsome driver ended up driving through the Holland Tunnel and through downtown NYC, and one in which it took us over two hours to go just over 30 miles) we made it to the Variety House – which is like the Ronald Mc Donald House for adults. It was only $25 for the night and was quite nice. If only the other occupants who came back well after midnight had been respectful of us and let us sleep…

Anyway, Friday morning we went to The Chiari Institute which was just about a mile and a half away from the Variety House. The nurse did the Ehlers-Danlos test and I was correct – I got a 9/9. I also have stretchy skin?? That one seems less likely to me because it doesn’t look like the pictures on Wikipedia. The nurse said it is stretchier than normal, though. And I bruise easily. She also went over my other symptoms which are exactly like Chiari, as I said.

Then we met Dr. Bolognese. He got right to business. He said I DO have Ehlers-Danlos Syndrome (which if you didn’t look it up, is a connective tissue disorder which makes all your ligaments too stretchy and unable to support the joints properly) and I DO have cranial instability as I suspected. (Basically, my head “settles” down onto my neck through the day when I’m upright.) That’s the only bad news. The good news is, my cerebral tonsils are “low” but not herniated and all my symptoms are coming from the instability – I even have that growth (a pannus) on my odontoid bone from the rubbing that has occurred. It’s not huge, but it’s there. So that means Dr. B thinks that “conservative” measures have a good chance of helping relieve my symptoms and that at this time, surgery is not necessary!!! YAY!!

So here are the things I’ll be doing:

1. Taking Diamox. It’s a medication that helps reduce the amount of CSF (cerebral spinal fluid) you have. That makes the pressure lower and should help with the headaches.

2. Give up any activities that could jar my head – no roller coasters (waaah!), trampolines, etc. He even said it would be good to always have cars with really nice suspensions. 😛 Tom says that means that we have a good excuse to buy a luxury car. I wonder if the insurance would give us a discount? hee hee

3. Wear an Aspen Vista TX collar – a neck collar like you wear after a car accident – whenever I take long trips or will be standing a long time or just to relieve symptoms. This should help with the neck pain as well as the headaches – as will the next two items.

4. Wear a Johnsons CTO vest. This lifts the head more and provides even more support than the collar.

5. Use a Pronex home traction unit each night. I have to be careful not to overdo it because too much stretching could actually make the ligaments looser.

6. Physical therapy – I’m going to be doing this at home since I have all the exercises and tools they gave me from the last several times I’ve gone.

7. I guess with EDS, it’s common to have mitral valve prolapse, so I have to get an echocardiogram. Also, it’s common to have a problem with your aorta so I’ll get an ultrasound on that. I have to do that every two years unless something is found.

8. He suggested I find a rheumatologist experienced with EDS to help with any other issues that come up.

9. If I ever need back/neck surgery, I’m to contact him because with EDS, you can’t do “typical” surgeries since the ligaments won’t support they way they are supposed to. He said he will write to whatever doctor I see to explain what needs to be done.

So I think that’s it. I am so relieved that I won’t be having surgery – yet I’m quite nervous about whether all that will help. I’m optimistic, though – Dr. B said that he sees lots of EDS patients (probably because he “partners” with the top doctor specializing in EDS – a lady in Maryland and she refers patients to him) and that they have pretty good success with conservative measures. Considering that the next step is the fusion, I am 100% willing to try all this first.

All in all, it was a good trip. Exhausting – driving for about 10.5 hours on Thursday and close to 9 yesterday… I was so sore and my head was pounding terribly by the time we got to NY and home. My mom kept the kids for us, so we were able to sleep in this morning. I hope that all makes sense to you. I’ve researched all this so much – I take for granted that you might understand connective tissue disorders and loose ligaments and cranial instability. If any of that doesn’t make sense, let me know! In the meantime, prayers that these conservative treatments will make a huge difference and that I’ll never need any major surgery would be greatly appreciated! And thank you all so much for the prayers you’ve lived for me already! God is GOOD!