Scatterbrained, with Heavy Fog.

Eleventy-One Things About Me, #50: I'm not as smart as I used to be.

Note: This is a post I wrote several months ago--actually started writing before I knew I was pregnant. Things have gotten a bit better since then. My doctor told me that it's quite common for pregnancy to make cognitive issues worse; that "pregnancy brain" is a real thing even for people who don't have underlying cognitive issues in the first place. The first trimester was the worst; and was the most frightening since I didn't know there was the factor of pregnancy exacerbating things.

Things have improved a bit, or I've gotten better at coping, since I wrote this . . . I've gotten lost while driving far less the last few months, and have been able to get places in at least somewhat of a more timely manner, for instance.

But as we approach the baby's due date (5 weeks away as of tomorrow!), I know that once the sleep deprivation of having a newborn hits, it's almost certainly going to get worse. Massive sleep deprivation tends to have a hugely debilitating effect on me, which is one of the reasons I've basically stepped out of nearly all commitments for the next year or so. I'm planning ahead for the baby by not planning anything at all. My plan is to stay home, rest, and do as little as possible for as long as necessary. :)

I was conflicted about posting this, but I finally decided to go ahead and put it up. Maybe it will help some of my family and friends understand a little better.


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"You're just so scattered!" the voice on the phone screamed. "You never have it together; you forget things; you're so slow and I always have to wait for you! How could you not have all the information together when you asked me to call you??? You make me crazy!!!"

"I'm sorry," I wept. "I'm sorry."

"Don't tell me you're sorry! I don't want to hear that! Just--just stop being so scattered!!! I want nothing to do with you any more. I've had enough of you. I don't want you in my life, and I don't want any dealings with you, ever again!"

More incoherent screaming, and then the phone went silent as the person on the other end slammed it down.

I had tried to share some upsetting news that I thought they would want to know ASAP, and that I felt it would be better for them to hear from a friend than to find out online or in the news. I wanted to shield them, to make the blow softer. But, although I had gone over and over the information before the phone call (both aloud to my husband and silently reading it repeatedly to myself), and had pulled up a web page with the information so I would have it in front of me before I sent a note asking them to call me, my efforts only backfired.

Between the time when I'd first started trying to contact them and when they called me back, several hours had passed, and in the interim my brain had crashed.

I'd opened my mouth to say the name and thought I had said it correctly, but the voice on the other end of the phone told me that I'd said a different name and was yelling at me wanting to know which it was. I didn't think I had said the name wrong, but it was quite possible that I'd said my sister's name instead of my own middle name; the name of someone who had been killed in a tragic accident. Sometimes what comes out my mouth is a different name or word than what was in my brain or what my eyes were reading, and it often happens without my even realizing it.

At that moment the internet crashed (service is spotty out here in the boonies) and the screen went blank both on my phone and on my desktop. My mind went blank with it. I simply could not retrieve the information. The dreaded brain fog and short-term memory loss hit, and the more stressed I got the more my inability to process or communicate information suffered. The harder I tried the worse it got. Even if I'd had written it down on paper, at that point there was no guarantee I would have been able to make sense of the marks on the paper.

I didn't blame them for being upset; I felt terrible for botching something like that so badly, and said so.

I frantically tried to get the internet back up and pull up the information, apologizing and trying to explain what had happened. But by then my "friend" was screaming and yelling, and then hung up on me.

I tried contacting them a few times to explain and apologize, but it did no good. The relationship was gone.

"Just stop being so scattered." If only I could.

A few years ago I had hired an acquaintance to do some work in the yard, and was trying desperately to communicate with him, but having difficulty understanding what he was trying to say, figuring out and communicating what I wanted to say, walking, writing, talking, and just plain staying upright and functional.

Finally, half-joking, I said to him, "You know, I haven't always been this way. I used to be really smart."

His eyes widened. "Really? Wow. What did you say your disease was called again? I had no idea it could do that."

It can, and it does. Studies have shown that several of the conditions I have literally cause brain damage.

I haven't always been this way. It's not because I don't try or don't care. And, yes, it breaks my heart that my disabilities cause so much trouble for others; that it affects so much more than just myself.

No, I won't stop trying to find ways to manage it better; to be more functional. I don't use it as an excuse to stop working at doing better, and I won't give up. But I can't always predict when things will change; when the coping mechanisms that I've been using fairly successfully for the last several months or years will suddenly no longer be enough.

Some days are better than others. Especially if I rest up for several days ahead of time, I can often pull out several hours of relative sharpness and functionality. I can often function decently well, especially in a situation that encourages adrenaline production, and especially if I don't stop or slow down until it's over. But it's difficult to predict when it will all come crashing down, leaving nothing but shards of broken energy and clarity.

Ironically, it's the day-to-day things that cause the most trouble. Getting ready to leave for an appointment is one of the worst. I look at the clock, but have trouble making sense of it. Or I go downstairs and then get there and can't remember what I came for. Things always take far longer than I estimated, and the more stressed I get the longer they take. I drop or spill things trying to hurry. Most of all, I can't find things--I've tried to establish specific places to put things, but that doesn't always work.

I can't find my keys. I look at surfaces and into spaces, but my brain has difficulty registering what's on or in them. I look everywhere I can think of, looking in the place where my keys are three times before I find them. I already looked there twice; how could I have missed them? They were right where they should have been.

But I must have dropped my cell phone while I was looking. I go to look for that, and it's the same thing all over again. I finally call my phone, and find it dropped down behind the bed when I hear it ring.

Then I realize that I have no idea where I put my keys. I had found them; they were in my hand, I remember that, but I have no memory of what I did with them after that. So looking for the keys starts all over again.

I had my purse; I looked in it when I was looking for my keys, but it's not where I left it, so I must have moved it while I was looking for my keys.


I try so hard to get out the door on time. Before long I'm tired from rushing around and going up and down stairs, and it's harder and harder to keep moving. I desperately need to lie down, or at least sit down and rest. I want to just give up and stay home, and if it's not something I *must* do, that's often what happens. But some things can't be postponed. If it can be postponed, by the time I get ready to go I often just end up deciding to stay home, too tired from trying to get out the door to actually go out.

It's not just objects I lose. I lose time. I lose numbers and facts. I lose my train of thought. I lose names, both of people and of objects.

"That thing, you know, that big white thing that keeps the food cold," I say. Or I call a spoon a cucumber, or tell the kids to put the rack on the shoes instead of the other way round. They think it's hilarious.  It's not funny, really, but what can I do but laugh?

"Oh, I do that too," people say. "Everyone forgets things."

I have trouble with my own telephone number; relatives' names; times and dates, even of important events (my wedding, my kids' ages and birthdates, my own age and birthdate). Faces, places, long numbers or mathematics are next to impossible.

I write down an event on the calendar, but put it on the wrong date, or write down the wrong time. Or even if I wrote it down correctly I read a note that I have an appointment on a particular day and time, but that information may or may not sink into my brain. If it does, I may know I have an appointment Tuesday at 1:00, but calculating back from that to figure out when I need to leave and what has to happen between now and then might as well be quantum physics; especially figuring out how much time to take into account for things I drop or lose.

Sometimes I try to count something--a simple number, under 50, or even under 20, nothing complicated--and I can't manage it. I count and recount, but I forget where I was part way through, or I can't keep track of which number comes next, or I count them all but the number comes out different every time. Or I count them successfully, manage to get a number I'm sure is correct--but forget it before I can write it down. A simple task like counting how many places to set at the dinner table and then making sure I get the right number of items becomes terrifyingly frustrating and confusing.

Last week a package was returned to sender because I couldn't remember my address when I ordered it, and gave a conglomeration of our previous address and the address we've lived at now for well over a year.

It's not just an occasional occurrence. Every single time I have to say or write down my address, or my phone number, I'm frantically going over it in my mind, not sure I have it correct. I ask my kids or my husband to double check if they're available, but if they aren't there and I can't find a piece of mail to check, I just have to hope I got it right. I don't even try with my social security number--I know I won't get that right unless I look it up or ask my husband. Sometimes I even have trouble with my own name.

When I listen to phone messages on voicemail, I play each one over many times and am still not sure if I wrote the name and number down correctly. I have to set aside a decent chunk of time just to listen to the messages, and by the time I get through a few, I'm mentally exhausted. It's such an ordeal that sometimes I go weeks without listening to my messages. It helps a lot if the person leaving a message spells any unfamiliar names and repeats numbers twice.

I usually use my GPS even driving somewhere I've gone hundreds of times before, because if I don't I could end up in the next county, but occasionally I get cocky or the GPS won't work. Sometimes even with the GPS I still manage to turn the wrong direction or get on or off at the wrong exit. Lately I try to avoid driving as much as possible, especially if I'm unusually tired or having more brain fog than usual.

A few days ago I got lost picking the kids up from school. I was trying to drive straight from school to home, with no detours. The normally 15 to 20-minute trip took us more than an hour.

The next day I got turned around trying to get onto the freeway near my home, and ended up going north when I meant to go south, but it took a while before I realized I was going the wrong direction. That evening I got lost three times--significantly lost--driving home from my mother-in-law's neighborhood. I can get lost no matter how familiar the route. I drive up to an intersection I've been at hundreds of times before and it looks completely unfamilar, and I don't know if or which way I'm supposed to turn.

We got home, and I was so exhausted and in pain that I had to lie down. The other plans, things I had needed to get done that afternoon and over the next day or two would have to wait. I needed to conserve what little energy I had left for the most urgent things, like feeding the kids. Spoons are in limited supply.

It's been worse lately. Things I used to be able to count on my brain for, it will fizzle out on. I'll think I've planned for all the contingencies, that I have everything under control. Things will be running along smoothly and then, suddenly, I'm figuratively or literally lost; confused about what went wrong. Information that I had at my fingertips is suddenly inaccessible. Something that should be simple to understand makes no sense. A task that should be quick and easy to do demands colossal effort, and takes many times longer than it should.

I can handle the chronic pain, especially if it stays below a 7 or so. But it's the severe, bone-wrenching fatigue and the cognitive issues more than anything else that leave me feeling that both my body and my mind have betrayed me, and afraid of what the future might hold as things progress.

I've been cutting back on my activities and commitments, and even on social outings. Part of it is just that I'm focused on basic survival right now; and things like meals, sleep and the most urgent of the daily chores take priority. But part of it is that I'm afraid to let someone down; afraid to take on a commitment I won't be able to follow through on; afraid of the impact my failures have on others.

Most of the time I still do OK in writing; it helps a lot to be able to look back at what was already said in the conversation, or in whatever I'm writing. And I can take breaks and come back to it later without completely losing my train of thought. So I do much of my social interaction online, on Facebook, message boards, etc.

And, really, it's not always that bad. I am able to function adequately for most things. I don't need to be able to remember what exit to take in order to cook a fabulous dinner. Although I get lost a lot, I do fine with the actual process of driving, and I don't have trouble remembering things like the rules of the road. I even drove to several places today without getting lost once. :) I may not be able to remember my kids' teachers' names, but I can read the kids a bedtime story. If I can't figure out their homework, I can point them to someone who can. Usually I can carry on a conversation and participate in social gatherings just fine, at least for a period of time.

Most of the time, I function well enough that most people wouldn't notice anything amiss, or if they do they just think I'm unusually scattered and disorganized.

Thankfully, I do have people in my life who have the patience and understanding to love me and want to spend time with me anyway. Those are the people I need to surround myself with. I can't spend my limited functional time and energy going overboard trying to maintain relationships with the people who can't or won't understand that I don't struggle with these things on purpose just to make their lives difficult; or who think it's because I don't care or don't try.

Of all the elements of my health issues, it's the cognitive issues that scare me the worst. I find myself writing things down when my mind is relatively clear, hoping that somehow it will help me and/or others later. I can usually do better in writing than with other types of communication, because I can go back to read and re-read what was already said. I'm so thankful to be able to go back and read blog entries I wrote about my kids and about events and people I'd never remember otherwise.

A functional mind is a precious thing, and feeling that it's slipping away and not knowing if or when it will come back is far worse than any physical pain.

Turning in the Service Dog in Training Vest

Mira has made a lot of progress in the year and a half I've had her, but it has become clear that we will probably never be able to count on her being 100% unflappable and appropriate in every situation. She just has not been able to completely get past the consequences of having lived in an abusive household before we got her, and having been trained as a guard dog previously. Although she is no longer afraid of most people and situations, it's still too unpredictable what will set off a fear or protection reaction for her.

I've had her in and out of public-access training several times, thought we had worked through things and began gradually working toward putting her back in it, only to have something else pop up and have to pull her out again.

At our last session with our trainer, my trainer and I were sitting at a table talking as people were walking by at a mall. A woman with a large shopping bag came up and was almost right in Mira's face before any of us saw her coming.

She asked if she could pet the dog.

As I said, "No. Please don't; she's in training" the woman moved in even closer toward Mira, reaching toward her. Mira got partway to her feet toward the woman, barking and growling at her. She still thinks she is a guard dog, as she had been trained to be by her previous owner. She knew I had just told the woman to stay away and was going to make sure she did.

At that point we decided that enough was enough, and it wasn't fair to Mira, me or the public to continue putting her in a position where this sort of thing could happen. No matter how careful we are and how much we train, I can't guarantee that it won't happen again with the right trigger. Mira has barked and growled and rushed at people more than once (even though when she had the chance to bite, she just stopped and looked sheepishly at the person).

I do not regret bringing Mira home, and she will still be able to help me a lot at home. She is very good at her assistance tasks and can still help me a lot on the days I stay home and need to minimize movement and exertion. But I have turned in our "service dog in training" vest and will not be doing public access training with her any more.

The good thing is that ever since I was in the double-blind placebo-controlled study through a local teaching and research university, and discovered that my neurological symptoms, balance issues, brain fog, fatigue, pain and other symptoms were hugely affected by excitotoxins in my diet, I've been feeling so much better that I really don't feel that I need a service dog for public access work any more. I am better able to predict and prevent my bad spells, and when I do have a bad spell I pretty much stay home anyway.

Almost all of the other fibromyalgia/IBS patients in the study were similarly helped--84% had more than 30% improvement in symptoms, and some even got to the point where they didn't meet the diagnostic criteria for having fibromyalgia any more after going through the study. It has been very exciting to be a part of that! The study author will be publishing the study results in scientific journals and coming out with a book on the excitotoxin-free diet soon.

So, Mira is transitioning to being an at-home helper and family pet. We're going to continue training, and are hoping to take a "Control Unleashed" class and eventually pass the Canine Good Citizen test. But we have ended one journey and are beginning a new one together.

I'm sad, and I feel that I've failed her. I keep wondering if I'd been more diligent or had done things differently, if the results would have been different. But at this point I know this was the right decision. In a way, it will make life a lot less easier for both of us and take a lot of the pressure off trying to make her fit into a role that she just didn't have the temperament and stability for, and that was constantly stressful for us both.

I am looking forward to continuing to train and learn with her.

Loss

Two deaths I learned of this week leave me great sadness tonight.

My friend J and her dog J were such a blessing in my life and Mira's this past year. They trained with us, dogsat Mira, and J and I spent much time talking on e-mail and the telephone. She was such a loving, caring, gentle and giving person. She was a precious friend to me.

I know she is with her beloved Lord Jesus, but I miss her so much already. There were so many things I wanted to share with her and ask her still. I'm so very sad that I didn't get to see her more these last few months, after communicating over phone and e-mail became so difficult for her. She leaves a husband, children, dog and other family and friends who will miss her terribly.

Yesterday, the husband and father of a family I've known since childhood was killed in a hit and run accident while bicycling. Mr. P. was a wonderful, gentle, kind and humble man with a great sense of humor and love for God, family, students, all the people around him, and life in general. He was very much loved by his students, the church and homeschool community, his family, and so many more who knew him. His daughter and wife drove past shortly after the accident, which happened almost in front of their church, and immediately recognized his mangled bicycle.

The car was driven by an 18-year-old who, last year as one of this man's students, reportedly said that Mr. P. was the only person who believed in him and thought he could graduate. He had already had run-ins with the law on drug possession, driving while suspended, and assault charges.

Today Mrs. P was at the school where Mr. P taught, comforting students and sharing about the hope and faith that she and Mr. P shared in Jesus Christ. Their daughter, our long-time babysitter, posted a picture about receiving comfort in Christ's arms and a poem looking forward to Heaven where there will be no darkness, death, pain or tears.

Many are grieving tonight. Please pray for Mr. P's wife and children, friends and family, students and loved ones. And please pray for the young man behind the wheel, that this will be a turning point in his tumultous young life and he will come to know the salvation that Mr. P depended upon. Pray for the students, too. May they all be strengthened and comforted, and drawn to the One who can uphold them the best.

Resting and Processing

It's been a very busy few weeks. First, SIL The Mentor and her husband, Science Teacher BIL, and Sweet and Energetic SIL came and spent 4 days helping us do a "total home makeover"--decluttering, organizing, moving furniture, and even doing some painting and redecorating.

Then FIL passed away. All 12 of his children were able to come into town, from as far as Africa and the Middle East. We had a lovely memorial service and lots of family time.

Now we're all tired. But doing OK.

We're also still trying to figure out how to best manage AJ's challenges. We did have an appointment with a child psychiatrist. He interviewed all of us together and then her alone, and put her through some evaluations.

A lot of what he told us after that, we were nodding our heads and saying, "Yep, no surprise there. We could have told you that."

He noted, among other things, that she has an "inflexible mind", has difficulty dealing with transitions and things being different from the way she thinks they should be, and that she has a "low frustration tolerance" and tends to respond outwardly rather than inwardly when frustrated. She's definitely a worrier and tends to get "stuck" on certain ideas or topics, as we've noticed.

He did feel that her high need for alone/quiet time and her tendency to need more breaks/space in social interactions are "a comfort choice" rather than a lack of ability. So that was good to know. She definitely has no problems with her intelligence or attention span. :)

The psychiatrist did not feel that AJ was on the Asperger's spectrum, as has been suggested to us quite a few times in the past. But he did say that she was definitely on the OCD spectrum, and would be a good candidate for medication.

However, he was supportive of our desire to try other things first and only resort to medication if it's really necessary. He recommended that we see a particular therapist who is experienced at dealing with this sort of thing to get some extra tools, and also continue doing the play therapy and increasing the structure and predictability of our environment at home.

I'm not exactly sure what "on the OCD spectrum" means. When I researched the term "OCD spectrum", I found that it encompasses a HUGE range of issues, including everything from autism to eating disorders.

I think it could mean that he didn't feel a firm diagnosis was necessary or appropriate for AJ's age and situation, but that he wanted to give it enough of a label to give us some direction in pursuing resources and solutions that would be the most effective for AJ's particular quirks.

I do think that most people have some level of OCD or other quirks in their personality. If we didn't have some OCD tendencies, there wouldn't be so many of us that find Monk amusing. :)

It's really not something to worry too much about unless it's significantly impacting a person's ability to function in and/or enjoy life. AJ's functionality and enjoyment of life is impacted at some times more than others, but overall it had gotten significant enough that it was appropriate to seek some information that might help us parent her better, and some help learning tools to manage it.

For AJ, we're hoping to gain some helpful tools for teaching both her and us how to help her brain get "un-stuck" when needed, and how to cope with it to minimize the extreme frustration and discouragement she often feels.

My sister Sparrow has struggled with OCD that was definitely at the point where it was having a huge negative impact on her daily life and relationships, and medication is one of the things that has been very helpful for her. So it's something we would consider in the future if necessary. But I'm not anticipating that happening any time soon, if ever, since the other things we've been trying seem to be working fairly well so far.

Goodbye for now, Dear Father-in-Law

DH's father, Dr. Bible Professor/Pastor, went to be with his beloved Lord tonight. Please keep the family, and especially DH's mom in your prayers.

FIL leaves behind a legacy of 12 living children and many grandchildren and great-grandchildren who love the Lord, and goes to join two of his children and several grandchildren already in Heaven.

We will miss him, but we know we'll see him again some day.

Hand in Hand

7-year-old AJ is still processing the death of Maria, Steven Curtis Chapman's little daughter. AJ prays for the Chapman family often.

Here's a picture she drew:



I love the way AJ pictures little Maria walking hand in hand with Jesus in Heaven. We pray for comfort and strength for Maria's family.

A parent's worry

Steven Curtis Chapman's little 5-year-old daughter Maria Sue was killed in their driveway when one of the older Chapman kids accidentally ran over her yesterday. I really feel for the family, and especially for Maria's big brother who was driving the car. That would be so hard.

It's an important reminder to always, always check behind your vehicle before backing up or driving off, and make sure all kids are accounted for and well out of the way.

I hadn't previously heard this song that SCC wrote for his daughters. It's so beautiful, about treasuring the time with them while they're little because before you know it they'll be gone. It made me cry today.

AJ came in while I was watching the video, listening to the song and crying. She wanted to see what it was all about. I tried to explain it gently and in an age-appropriate way. It upset her quite a bit, though.

She was concerned about the little girl and her family, and very upset that a 5-year-old could die.

She said, "But now she'll never get to grow up! Never, never! [sob]

What about the little boy that was waiting for her to grow up so they could get married? What will he do now?

How could God let a 5-year-old get killed like that? She didn't even get to grow up! How could God let her die, when she was still a little girl?"

With tears in my eyes, I said that I don't understand it, either. But that God knew before Maria was even born how long her life would be, and what His plan was for her. That we didn't understand why, but that she was in Heaven now with Him and would never have any more sorrow or pain, and that her family would see her again some day.

Doctor appointment leads to more deep thought

Warning: This is a really long post again. Definitely not the light, happy kind. So proceed at your own risk.

I saw a new doctor on Thursday. Since my primary care doctor left the practice and his replacement won't be starting until July or August, his patients are kind of left in limbo, seeing whichever other doctor happens to be available.

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I liked the "bedside manner" of the doctor I saw. She listened carefully, took notes, asked lots of questions, and took the time to interact (at least until she abruptly rushed out of the room at the end of the appointment, leaving me wondering if I was supposed to go or stay). With my level of brain-fog and mental slowness during a flare-up, though, I did find it very difficult to understand her rapid speech and heavy Asian accent.

Basically, she took an update on how I'm doing, and then had some blood and urine testing done to re-check my thyroid, function, kidney function, do a metabolic panel (I think that's what it's called?), check for mononucleosis, and check a few key vitamin/mineral levels.

She told me about one medication option--I can't remember what it was called--that she has seen help one patient with severe fatigue issues. She said that it's normally an anti-anxiety drug, but with this particular patient it helped concentration levels, mental clarity and fatigue.

Frankly, I was rather unimpressed. It seemed rather a stretch to take a single case study of a patient who had basically fatigue, malaise and difficulty concentrating for a mere 9 months (the doctor didn't mention pain, or a diagnosis of any specific condition) and use that one anecdote to justify an off-label use of a strong medication for a patient who has had fibromyalgia and chronic fatigue syndrome for over 12 years.

I'm guessing it likely that the other patient probably had fatigue and malaise because of depression (quite common) since the anti-depressant/anti-anxiety drug helped so much, "and with her ATTITUDE, too!" the doctor said. It didn't sound at all like she actually had a similar condition to what I deal with.

The doctor said that there could be side effects harming the heart and kidneys and the medication was quite addictive. So, considering my family history of kidney disease and heart problems, and the fact that I've had heart palpitations, she would recommend caution in deciding to use the medication, but that if I was feeling bad enough she would recommend considering using it.

Basically, if I really wanted the doctor to prescribe something to try to make me feel better, she could prescribe it after running some tests on my heart and kidneys to make sure they're OK first. Oh, and also I can't take it while nursing. To her credit, she didn't pressure me to wean Ebee faster than I'm already attempting it.

I've worked hard to manage my illness without medications, considering that I know there's technically no "cure" for my conditions and (as readers of my blog would know) I'm not into using pharmaceuticals unless absolutely necessary. So it's highly unlikely that I'd try something like this just on the off chance that it could help, when even the doctor isn't sure it's really a good idea.

The doctor went on to say that she was really impressed with my attitude and my approach to managing my health, and that basically I'm doing better than could be expected. They always say that. There's really nothing else they can do for me except continue to monitor things like kidney and thyroid function every year or so. They always say that, too.

I asked about a referral to a rheumatologist. My previous doctor had said that if my tests last time for things like lupus, thyroid function, lyme disease, etc. came back normal (which they did) the next step would be to refer me to a rheumatologist. Rheumatology is the specialty fibromyalgia would fall under, but despite having had fibromyalgia for some 12+ years, I've never actually seen a rheumatologist.

This doctor didn't see the point of referring me to a specialist. She said that since fibromyalgia and chronic fatigue syndrome aren't treatable anyway, there's nothing a rheumatologist would be able to do to make me feel better. So I didn't need to see one.

I explained that I was considering some options for getting assistance, such as applying for disability (considering that I've never been able to hold down a job--even a weekly volunteer position--for long in the last 10 years, and had to drop out of college because of my health issues). If I could qualify for disability insurance payments, it would go a long way toward enabling us to hire someone to help with the kids and/or housework.

I think that if I could get more help with things like housework and meal preparation, it might allow me to focus my limited energy on spending time with the kids. As it is, most days we do the bare minimum of school and then they read and entertain themselves for most of the rest of the day and have "quiet time" in the afternoon while I rest. DH does what he can, but he works full-time and takes the kids to all their activities, does almost all the shopping and errands, etc. already.

Sometimes I just get so tired of being sick and tired. It takes almost all of my non-resting time and energy, most days, just to get everyone fed and dressed, supervise math and phonics, prepare meals, deal with any needs the kids have, and maybe--if I'm lucky--do a load of dishes or laundry.

It breaks my heart to constantly be making excuses as to why I can't play with, read to, or go on outings with the kids because I'm too tired and/or in too much pain. On a good day I don't hit the wall until close to dinner time or even bed time; but on most days I'm doing well to get through lunch before I run out of spoons .

The doctor strongly advised me to put the kids in school. Not for academics; when I explained what types of things they're doing and reading, she agreed that being in a kindergarten and first grade class would benefit them little if at all from an academic standpoint.

She was worried about their social development, until I explained that they spend time with other kids on at least 4-5 different occasions each week (DH takes them to Sunday School, AWANA, and various music/dance/swimming lessons, and we have our church home group weekly which includes 13 kids in our house playing for several hours while the adults have Bible study and prayer).

But what she said that really rattled me was this: "Your children need to be around healthy people; especially other healthy kids, but healthy adults too. They need to see and spend a lot of time with people who have normal health. Because you don't want sickness to be their reality.

"You have been sick all their lives; all they know is a mother who is ill. A mother who is tired and ill most of the time. That's not good for kids, to be around sickness all the time. They will think it's normal; they'll worry about it. They might start spending a lot of time thinking about whether their own bodies are sick or not. You need to make sure sickness is not their reality."

That struck the deepest place in my heart. Especially since we were so worried about Ebee's health for the first couple of years. I really don't want my kids' reality to be pervaded by health issues. And yet our household has definitely been more affected by health issues and the related stress than most households are. We have had a lot of concerns about health issues over the years.

I try to minimize that as much as possible; I try to be careful about what I say in their hearing and am very careful what I say to them, but I know they have picked up on the concern, especially when Ebee was so unwell for so long.

I don't talk to them a whole lot about my health issues. Usually I make other excuses--the weather, the time, needing to cook dinner, etc--for why I can't always do with them the things they ask.

When I got married and started having kids, I truly thought my health issues were largely behind me. Because I'd improved so much from where I had been, and I expected the improvement to continue. I'd gone from nearly needing a wheelchair and being almost completely disabled, to being so much closer to normal. I thought I was well, or very nearly so.

But I've been making excuses for years--too many years. I've always thought that once I get over this cold, or once I get things better organized, or once we get out of the infant stage, or once we get past this issue/illness/whatever, or once I start getting more sleep, or once I figure out how to tweak my diet just perfectly--then, THEN I'd be really well.

I'd have energy like a normal person, or very nearly so. My short-term memory and mental clarity would return. I wouldn't be in so much pain. I'd have the energy to carry out the joyful, creative, active, exuberant life I long for. I'd be healthy.

But 9 years later, I'm still sick most of the time; still debilitated to the point that I rarely go anywhere or do anything, because it taxes me too much. I can muster up the energy to appear normal for a while--sometimes for several hours, occasionally for a few days. But I pay for it later. The whole family pays for it.

As the spoon story says, borrowing spoons from tomorrow has its consequences. I'm learning it's not worth being mostly out of commission for the next few days or weeks to overdo it one day, even though I can push myself that way and appear to have normal energy and health for a little while.

Sometimes I wonder if it was really wise to get married and have kids. But my kids are such wonderful people. And, despite my health issues and despite the mistakes we make, I do think DH and I are pretty good parents. I can't look at my kids and wish they didn't exist. I just can't.

I also believe that God knows what He's doing, and that He has a plan somehow which includes me and DH having these kids and being, at least for the moment, in this situation. (I sure hope the plan includes changing the situation soon, though. Please, Lord?)

No, I can't regret getting married and having kids. Having my husband and kids in my life is the most wonderful, incredible thing I can imagine. I often wonder if they would have been better off with a different, healthier wife and mother--but with a different mother, these kids wouldn't exist.

However. Would it really be better for the kids not to be around me so much, as the doctor suggested? Would it? Is it bad for them to spend a lot of time with a person who is less than healthy, even though that illness is not contagious or harmful to others? That is one of the most heartrending questions I have ever had to contemplate.

All I ever really wanted (well, besides the numerous pipe dreams like being a veterinarian, public speaker, or writer) was to get married, have a lot of kids, homeschool them, and dedicate my life to raising them during their childhood years.

For this year I really think that we are best meeting their needs and giving them the best education, teacher/student ratio, customized curriculum, and spiritual/moral training possible by keeping them home. But next year? It's something we can only approach with as much thought, wisdom and prayer as possible.

But I don't want to just do what I want, or even what's best for me. We have to do what's best for them. Or at least the best we can manage under the circumstances.

The question is always, what is that?

A Tough Road

I discovered a blog yesterday by the husband of a lady with Cystic Fibrosis. This family has had to make some of the hardest decisions I can imagine.

Tricia had become quite ill with her CF. She was getting close to receiving a double lung tranplant that would hopefully save her life, when they discovered she was pregnant. As her father-in-law so eloquently pointed out in this post, it truly was a case where, for very good reason, the doctors were recommending abortion to preserve the life of the mother. There was virtually no chance that the mother would be able to carry the baby to term with both of them surviving the experience.

They chose to keep the baby. They believed that God had a plan, and that He gave them that child at that time for a reason.

Now, at 24 weeks into the pregnancy, the baby has had to be delivered by emergency C-section. They were attempting to intubate Tricia to buy a few more days or weeks for both her and the baby, but ended up needing to deliver the baby in the process.

Before Tricia went into the surgery, she and her husband were asked to make a heart-wrenching decision: If it came down to a choice between saving the baby or saving the mother, what did they want the doctors to do?

I don't know--I don't think any of us know--what choice I would have made in that circumstance. I don't know what choice Nathan and Tricia made. Thankfully, it didn't come down to that.

At this point both Tricia and the baby, Gwyneth Rose, are in ICU in critical condition. I'm checking in often to see how they are doing. I'm praying for them. Most of all, I'm inspired by this family's strength and faith. I'm glad I found their blogs.

Life and Death

Our newest niece was born last week, November 28. She's named after DH's mom and her middle name is very similar to Baby E's middle name. Her initials are the same as her big sister G who is a few months younger than Baby E.

After 5 days in the hospital, Baby GE finally got to go home. She's beautiful and healthy. Last night her family--Adventurous BIL, Artistic SIL, big brother J, Toddler G and Baby GE drove down to a gathering at SIL The Mentor's house. Several of DH's family from out of state and out of country were there, so it was great to see everyone.

I got to hold the baby. She's about the same size Baby E was when she was born. It's hard to remember E being that small. She's gorgeous. She reminded me a little bit of all three of her older siblings--J, William (who would have been 3 now), and G. I could see bits of both sides of the family in her, but she's definitely her own gorgeous little person.

I'm not sure exactly what number grandchild she is for DH's parents--55 I think? There seem to be always a few babies on the way in this family, with DH's parents having had 12 kids and most of them having medium to large size families. I think we and Science Teacher BIL/SIL The Mentor have the fewest children at 3 apiece.



My dad called today to let us know that Lauren died yesterday. She's my second cousin (my dad's cousin's child), but she was only 13 years old. Please keep her family in your prayers. They have had a rough time of it with her dad being seriously ill as well.

My dad's aunt died a couple of weeks ago, too, so it's a difficult time for that side of the family.

500 Prayers

A little boy in AJ's class at our church has just been diagnosed with Acute Myelogenous Leukemia. I can't even imagine what his family is going through.

His name is Luke. He likes the things a normal almost-7-year-old would like: riding his bike, doing sports, playing with his friends, building with Legos, playing PS2. He is artistic and loves to sing worship songs.

He's just a little boy, and he has leukemia. He's been in the Excellent Children's Hospital (the same one Baby E goes to for her specialists) for a couple of weeks already, and they're expecting him to be there for another 6 weeks or so.

A friend of the family shared this story about what he said when someone asked little Luke what he would like:

He replied with two answers. He said that he wanted "100....no 500 prayers." Then he said that "before he left the hospital he wanted a needle so that he could give every doctor a shot." Well, I don't think there's much we can do about the shots, but we can give him 500 prayers.

The prayers are being collected at a blog called 500 Prayers for Luke. There are plans to make a poster with the names of all the people who are praying for Luke.

I know we can get 500.

I'm praying for his complete healing, and for his family (especially Luke, his parents and his two siblings) during the process of chemotherapy, hospitalization, and treatments.

In Memoriam

P.Y.
Died May 10, 2007 at age 52



His memorial service is today. Yesterday I was sorting through some things and found this unfinished sketch I'd made of him years ago. I must have been doodling while sitting behind him at a church meeting.

I'll probably give the sketch to his widow at some point, if she wants it. Today, I suspect she'll be overwhelmed just dealing with the service and all the condolences from friends. This will be the first time I've seen her in several years, although we've talked on the phone a few times recently.

A friend from church is going to watch my kids so I can go to the memorial service. I'm baking cookies to take. It seems such a small thing, but I'm glad I can do something to help.

Sad

Just in the last couple of weeks, I got back in touch with a dear friend I'd been close to since my teens. We hadn't kept in touch for the last few years, and it was wonderful to hear her voice again.

We talked a lot on the phone several times recently, picking up right where we left off and enjoying each other's company just as we always had. We were supposed to get together this week, but we ended up needing to reschedule for next week.

I got a phone call this evening to tell me that my friend's husband died last night in a very tragic, sudden and wrenching way.

It's such a shock, and so painful. I hurt for her.

I haven't talked to her yet. I left a message saying that I am praying for her and that I love her. I told her to please feel free to call any time of the day or night, and to let me know if there's anything at all that I can do.

I hope she'll call when she feels ready.

I hope I can be of some comfort and support to her, somehow.