because I can...

Miss me last week?

I meant to blog every day, but never made it past the good intentions stage of things... R was sick (cough) with a cold (cough, cough) the early part of the week and M had a gastroparesis flare up the end of the week. Between those two things I didn't get much sleep and spent the early morning hours, when I usually blog, either staring vacantly at computer screen or trying to steal a few more minutes of sleep.

I was going to blog early this morning, but ended up outside shoveling manure, cleaning the paddock, instead.

I didn't have to do it... it's supposed to be R's job (I do all the chicken work, she keeps the pasture clean) but the paddock was a mess, and the rake and pitchfork were right there, and so I did it.

Mostly I cleaned the paddock because I could.

And I was appreciating being able to do something as simple as shoveling manure...

A close neighbor, a woman who is just my age, is battling cancer.

Again.

After surgery and radiation two years ago to battle breast cancer, and a looooong difficult recovery, her cancer has returned. I won't share the details... they aren't mine to share... but her treatment involves weekly chemo, daily radiation, and a vastly different life than even the one she had after her first battle with cancer.

So I cleaned the paddock because I could... because I was appreciating and so very aware of the sweetness of hard work... thankful for the satisfying heft of the full pitchfork, the earthy barn smell, the freedom to stay outside and work in the morning, the strength in my muscles as I eventually pushed the full wheelbarrow around to the back of the barn to dump on the manure pile. I relished each bit of the time I spent outside working...

But now it's late... I have firewood to bring inside and stack, a kitchen to clean (yes, last night's dinner still isn't clean up!) and later Christmas shopping to do...

Tomorrow I'm bringing dinner to my neighbor and her family, and have become the fill-in driver for her daily radiation treatments... (when her FIL isn't able to drive her). She'll by in my prayers through these so very tough days and weeks of her treatment.

And I'm pretty sure I'm going to appreciate every minute of this ordinary day.

Boston...

... our tears and prayers are with you.

Jumping on the bandwagon....

I read a few blogs that fairly regularly post writings from the book Jesus Calling by Sarah Young. After reading bits and pieces from the book here and there for several months, but not buying it or even being very interested in it, I finally broke down and bought it last spring. Since then, it's become a regular part of my early morning reading/prayer time...  (I think I resisted buying the book for so long because of the title... I think they could have come up with a much better title, for sure.)

Anyway... I thought I'd share some bits and pieces from the August 22 entry in the Jesus Calling book because it just seemed so pertinent to me, right now, today.

"Trust me and don't be afraid. I want you to view trials as exercises to develop your trust muscles."

Joe was back in the ER yesterday... I won't go into details (for the whole internet world!) but it was more of the same problems he had back in May.

"Refresh yourself in my Holy Presence, speak or sing praises to Me..."

At the hospital yesterday evening I prayed one of my favorite psalms (or parts of psalms), Psalm 59:16b-17 as I waited for all the tests to get done and results to get back... I do love those verses, I start my day with them each morning.

"...and my face will shine radiantly upon you."

Joe's home now, and this week is shaping up in involve a LOT of doctor appointments. (I've already got three on the calendar for M and R, and Joe is likely to have at least one or two as well!)

"Trust me and do not be afraid, for I am your strength, song and salvation."

I'm not sure how it's all going to get done this week, but it always does... It will be interesting to see how He pulls it off this time. (My "trust muscles" are going to be body builder buff by the end of this... ;) )

Sunrise...

...the promise, and blessing, of a new day.

I never get tired of watching the sun come up...

So... after posting my list of 20 things I wondered if maybe I shouldn't have...

Maybe it was too personal.

Maybe it would make people feel uncomfortable.

I thought about deleting it.

But then I decided no, I would leave it.

I didn't post it to make people feel bad, or guilty... but because, as Stephanie touched on in her comment, many times people just don't know what to do when a family is struggling with the mental illness of a child. People who really want to be supportive, and would know exactly the right thing to do if there was a death in the family, or the child of a friend was struggling with a serious injury or illness... don't seem to know how to be supportive when that serious illness is a mental illness.

So they do nothing.

They don't know what to say...

...so they say nothing.

They really want to be supportive... but they don't know how.

While my list is very specific to our situation, hopefully it gives at least a few good ideas for that unknown"how".

So the post is going to stay...

And hopefully people will understand the spirit in which it was written.

... it's been a rough few days.

One of dh's brothers (T)  has been diagnosed with cancer. We won't know how bad it is (if it has spread, etc.) until after he has surgery. We are broken hearted for T... Even if the cancer hasn't spread, the surgery alone is life-changing. T is such an amazing person, and life has already thrown him what seems like more than his fair share of challenges... He is a strong person though, and we are all hoping for the best.

I also got word that M's pdoc is closing her outpatient practice, and letting all her patients go. She sent out letters to let parents know that they need to find a new pdoc for their kids within the next few weeks.

I haven't gotten the letter yet, but think that's probably more connected to our poor mail service than it is to us not being included in the mass mailing.

It's hard to think about dealing with M's illness with this doctor... she's been his pdoc for more than 7 years, and diagnosed his schizophrenia. For the past few years, she's been my only (mostly) consistent support as I've dealt with the ups and downs of treatment resistant sz. We haven't always agreed about M's treatment, and there were times I didn't even know if I could continue to work with her... but even through those times there has been affection between us, and a strong and mutual respect for each other. It's hard to think about doing this without her...

Edited to add: I just got off the phone with the pdoc. Her superiors are insisting that she dramatically decrease her outpatient load, she is able though, to keep a few patients. M is one of five outpatients that she'll be able to treat.

It feels good to take a deep breath again...

Please keep T in your prayers... Thanks.

Thankfully M is doing pretty well right now. When he's unstable he's not able to focus, and purposeful activity is rare... sometimes he seems to not even be able to think. But when he's fairly stable he can be incredibly creative.

He worked the other day making a game. First he decided how the game was going to be played, and made a game board and cards for the game. Then he went through our bins of Playmobile toys and chose characters that matched the cards he'd made.

Here are some of the card and characters...

... and the finished game.

It turned out to be a lot of fun to play... it's fast moving, interesting, and easy to understand... he did a great job. I love to see him doing well enough to be creative like this...

My friend Christiana is no longer sick and hurting...

She passed away yesterday afternoon.

Please keep her family in your prayers.

A friend of mine is fighting for her life right now, she needs your prayers... 

 She is a truly remarkable, powerhouse of a woman.  She almost single-handedly put together the Empower Colorado organization... a group that is still going strong today, offering support, education, and encouragement to all parents of children with brain disorders. 

 She kept this group going and growing through the early years even while she was working full time and caring for her own son with a brain disorder. 

 She has supported countless parents, including myself, as we try to find our way through the maze of diagnostic and treatment services for our mentally ill children. 

She has held our hands and cried with us through the pain of watching our children struggle with mental illness...  

I am so blessed to know her... 

 She was diagnosed with leukemia last December and almost died in January... (Her care page is here, if you'd like to read about her ordeal) She miraculously survived though, her leukemia went into remission and she was able to go home from the hospital to be with her husband and kids. 

They found a bone marrow donor and she was scheduled for a bone marrow transplant the end of this month. 

 Then the leukemia came back... I got this email from her parents this morning: We need a huge prayer chain so I am asking you all to share this in church today or by yourself. Christiana's cancer has come back. The doctor told her, no more chemo, that it is not working. He is going to try some experimental drugs on her starting Monday. This is at the end of her life so I am asking you all to pray for a miracle. How does one say good bye to their child? Bob and I feel so empty, how do we go on without our child? Help us to ask God for another miracle. 

 Please keep Christiana and her family in your prayers...  

Well I think my girl is really on the mend. She fussing about keeping her arm in the sling, fussing about taking the ibuprofen, and fussing about not being able to ride. 

 She was very happy though, spending time with Chance this morning. She says she's afraid of other horses but not Chance... I'm thinking about seeing if Chance's owner will sell him to us. It's a long shot, but I won't know unless I ask. 

R took advantage of the beautiful day today and groomed him (he was looking pretty rough). It was very good therapy for her.

 

 It was so good to see her out there doing what she loves...

 

 Thank you Lord for the miracle of this child. 

 Edited to add: I talked to the neighbor, he won't sell us Chance. :(

thankfulness...

This is an old favorite of mine, and I thought Thanksgiving week was a good time to post it (again) on my blog...
~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~

I Am Thankful

By Nancy H.

~

For the husband who is on the sofa being a couch potato.

Because he's home with me and not out in bars.

~

For the dog barking to come in because it means

I can hear, and that I have a faithful friend.

~

For the cat leaving hair in my lap, because it means

I have another faithful friend.

~

For the mess to clean after a party,

because it means I have been surrounded by friends.

~

For the clothes that fit a little too snug,

because it means I have enough to eat.

~

For my shadow that watches me work,

because it means I'm out in the sunshine.

~

For a yard that needs tending, windows that need cleaning

and gutters that need fixing, because it means I have a home.

~

For all the complaining I hear about the government,

because it means we have freedom of speech.

~

For the parking spot I find at the far end of the parking lot,

because it means I'm capable of walking and I've been

blessed with transportation.

~

For my heating bill, because it means I'm warm.

~

For the pile of laundry, because it means I have clothes to wear.

~

For weariness and aching muscles at the end of the day,

because it means I have been capable of working hard.

~

For the dog waking me up in the early morning hours to go out

to wee, because it means that I am alive.

~

And finally- for too much email,

because it means I have friends who are thinking of me!

thank you

....for the prayers and good thoughts, I think the situation has turned around now and it looks like M will be fine.

We spent yesterday checking and rechecking M's white count... His pdoc had talked to the people at the National Registry (because clozaril has the potentially fatal side effect of dropping the white count, it is carefully monitored by this agency and can only be prescribed in certain situations and under certain conditions). She was told that if we had a normal CBC within 48 hours of stopping the medication we could start it again with lots of follow up CBC's. 

So I drew M's blood twice yesterday and around dinnertime we got the good news that his white count is back up in the normal range, and since it had not been 48 hours since we stopped it, I could restart it again. (Had it been more than 48 hours we would have had to very slowly increase the medication as we did when he first started taking it. It's a months long process to get it to a therapeutic level.) 

We don't know why his white count was apparently so low on Monday... I had a hematology doc check the specimen I sent in and he said it was fine... no clots, and there were none of the other possible reasons for it to drop. There is also no clear (medical) reason why it would have popped back up so quickly... I'm taking it as another miracle in this child's life. 

He had a rough day off and on yesterday, I could already see a change in him without his medication. The pdoc was talking about ways to keep him sedated during the time he was without the clozaril, and things were looking pretty grim. Getting the news last night that his white count was back up was an incredible relief... 

It's funny how good "normal" looks (even a normal as strange as ours!) after coming so close to it being gone. M should be back to normal within a few days to a week... He'll need more frequent (every few days) CBCs for awhile, but that's not a problem. Our children's hospital has very generously provided us with a courier service to the hospital. So I just have to draw the blood, call the courier, and it's picked up at the house and taken into Denver. They've made it very easy for us...

  THANK YOU again for all the prayers, good thoughts and supportive comments.... They mean so much to me.

prayers

We've had a crisis with M, and I would really appreciate it if you could keep M in your prayers...

 Here is what is happening... 

The main medication M takes for his schizophrenia (clozaril) can have the side effect of dropping his white count dramatically. This side effect doesn't happen often, but can be fatal... this is why I have to draw M's blood every week or two for a CBC. In the three + years he's been taking this med, his white count has been fine... but I found out yesterday evening that the blood draw I did on Monday showed it had dropped seriously. 

His pdoc called last night and said I had to stop the medication...

You're probably wondering why I would give him such a potentially dangerous drug. It's because it's the only one that seems to work with treatment resistant schizophrenia. It's referred to as the "gold standard" in terms of meds for treatment resistant schizophrenia.

  So I've had to stop it, abruptly, and who knows how much M is going to disconnect as a result. In the past when I've decreased that med too much he loses touch with reality (not immediately, it's a gradual process) which is incredibly painful for him. I'll have to draw his blood at least twice a week for awhile, so his doc can watch for his white count to (hopefully) rise again. Legally she can't start the medication again until it's reached a certain point for a certain period of time. (That's if we decide to use it again...)

 That's the situation... I'll keep you posted if anything changes, but until it does we'd really appreciate your prayers.

There's a birthday cake in the oven...

...and gifts hidden under the bed.

 Tomorrow is M's 14th birthday.

 Last year on R's birthday I wrote a little about her life... about how much she has overcome, what an awesome kid she is, and how very proud I am to be her mom. I thought it was only right that I spend this evening, as the house slowly fills with the warm, sweet smell of "red velvet" cake (thanks Duncan Hines!) writing about M. I'll try not to write a book, but it's been an interesting 14 years...so this might take awhile.

 M was our second foster baby. We got him when he was just 7 months old. Our first baby stayed an entire year, and it broke our hearts to lose her, but we really believed in what we were doing, and so we got the nursery ready and just a few weeks after she left, M came to live with us.

 M was born a month early, weighing just a little over 5 lbs. Before he was a month old, he was back in the hospital with pneumonia. His first seven months he bounced from place to place. Birthmom was homeless, birthdad was bad news (and absent) and BM (birthmom) would leave M and his three older siblings with just about anyone, sometimes for days at a time. (She'd promise to be back in an hour, and drop out of sight) The older siblings remember abuse, M was too young to remember of course, but he was obviously neglected. BM tried to take care of him (when she was around) but was herself a product of the foster care system, and an extremely dysfunctional family, and really had no idea at all about how to take care of a child.

 At 7 months he couldn't roll over (either way) or even begin to support himself sitting. His body was tiny, about the size my birth daughter's had been at about 6 weeks of age, and his head looked way to large for his body. I worried about hydrocephalus but the pediatrician explained that M was just malnourished. He'd been fed enough (thankfully) for his brain to grow, but not enough for his body to keep up. BM's idea of good infant nutrition was Strawberry Nestle's Quik poured into a bottle. His eardrums were scarred from numerous untreated ear infections, and he was so dirty that it took several baths to get him clean again. He wasn't able to digest able to digest regular formula (he vomited everything up!) and eventually needed a "predigested" formula. (Which was gray and smelled like chemicals! No wonder the kid has food issues now!!)

 He was such a hard baby. He cried for hours at a time, several nights a week. This wasn't just normal infant fussiness, I already had lots of experience with tired, colicky babies. No this was much worse... M would literally scream for hour after hour after hour during the night. Nothing would calm him. I would walk the floor with him, change him, massage him, bathe him, lay with him... and sometimes cry with him... night after night. Many nights I loaded him into the car and drove aimlessly around the neighborhood... hoping the car would eventually lull him to sleep. When he screamed his body would get completely stiff, and his eyes would be just blank. He'd no longer recognize us during those spells, and it was impossible to reach him. Those screaming spells lasted until he was almost 2.

 There were other issues as well. He could work himself into a frenzy if his bottle was delayed by even a minute (I slept with a bottle for him on my nightstand... knowing I wouldn't have time to run to the kitchen to get it before he'd be screaming so hard I couldn't calm him). He was hypersensitive to lights, sounds, smells, tastes, and touch and even the sound of a car driving up the street at night would wake him up and start the screaming again.

 Those first years were rough in many ways, but he was a sunny little guy (when he wasn't screaming...) and although we had no plans to adopt, somewhere along the line we fell in love with him. Some time during the endless nights of trying to calm him, the many runs to the ER sure he must be in pain, the countless illnesses. and the constant worry of how to get enough calories into him for him to grow... he became our child.

 BM left the state shortly after he was placed with us, and BD wasn't in the picture... so M was on his own by the time he was 9 months old. When we were asked if we wanted to adopt him, the answer was an immediate "YES!". He was 3 1/2 before the adoption was finally complete. ~

The years since that naive and optimistic yes have been filled with evaluations, diagnoses, and tears. But they've also been full to overflowing with lots of love hope, joy, milestones, beating odds, good friends, strong faith, and a few truly amazing physicians who love as well as they doctor.

 M has been my education. From him I've learned the incredible strength of the human spirit. He's suffered with hallucinations for at least five years now, and yet he still finds joy in life. He never complains about the miserable side effects of the meds he has to take, and he's never cried out in anger or anguish at all that schizophrenia has taken from him.

 From M I learned that we are all just people first, regardless of whether we have a "disability" or not.. and I've learned that "different" isn't bad or good. It's just different. He's taught me about unconditional love, and forgiveness. He's taught me about hope, about never giving up, and about giving to others, even when you are struggling yourself with huge challenges. He's taught me to never ever give up, and that even impossible situations are possible sometimes. He's taught me that I'm a better, and worse, person then I thought I was. And he's taught me that life is full of miracles, if we only open up our eyes to see them.

 M's BM's drinking during her pregnancy with him has damaged his brain, and schizophrenia undoubtedly has damaged it more... but neither of those things have damaged his heart or his spirit. He's truly an incredible person... and I'm very blessed.

 This is M at 3, right before the adoption was final. (The red splotches on his face aren't in the original photo, but showed up after being scanned)

And here he is now, meandering across the pasture with his nephew.

Happy Birthday, big guy... 

One year ago... (our moving in story)

One year ago today we moved into this house... I wasn't thinking much about the anniversary of that move until I woke up this morning to the slap of the snow hitting the windows, and the howl of the wind down the chimney. We're in the middle of a storm here today, and under a blizzard watch... the snow is blowing sideways and our back pasture is hidden by a curtain of white.  It looks (and sounds) exactly like it did one year ago, when we moved in.

 So in honor of that anniversary, and all this tumbledown house has put us through since then, I thought I'd celebrate by sharing the story of that move.

 After many years of living in the same house in the city, we decided it was time for a drastic change... a move to the country. After a crazy few months of looking at houses, and getting our old house sold, we ended up with a fairly narrow window of time to actually get ourselves moved. We had to give possession of our old house to the new owners just three days after getting possession of the new house. (That seems like plenty of time now, but remember we were moving 18 years and 5 kids worth of stuff!) As the date for the move got closer, the weather reports were forecasting a snow storm for day two of our three moving days. As the day got closer the forecast got more ominous... it was supposed to be a huge storm, and dump lots of snow. Hmmm... what to do? We decided to really push to  get everything to the new house on day one... just in case the weatherman was right. We didn't want to have to deal with getting moving trucks through deep snow...

 April 6th of 2005 was a beautiful day... We had lots of help coming, and I had the old house completely packed and ready for our "movers" (friends and family). The entire house was empty and all our things loaded into trucks by mid-afternoon. We filled two 24' moving trucks and a long horse trailer (with stuff from the garage). The new house is about 25-30 miles away from the old house and by the time we got there it was late afternoon and still warm, but the wind was starting to pick up. We quickly unloaded the house stuff into the garage, and the outside stuff into the barn. As we unloaded the temperature was dropping by the minute... When we finished, the garage was absolutely stuffed full of boxes and furniture...there was just a narrow path through the garage to the door into the house.. As soon as we unloaded, M, R and I went to a motel about 20 minutes away (so we could have beds!) and dh and older daughter K went back to the old house (because they didn't mind sleeping on the floor).

 The storm started during the night sometime and when I woke up the next morning I could hear the wind outside the motel room window. I pulled back the heavy drapes but couldn't seem to get ahold of the white sheers that still covered the window. It took a minute to realize that the sheers were already pulled back, but the air outside was so thick with fine flakes of snow that it was like trying to see through sheer white curtains.

 It was still very early, hadn't been snowing too long, and there wasn't much snow on the roads yet. So, rather than risk getting snowed in at the motel (at $100. a night!), I decided to head to the new house. It wasn't that far, and most of the way was on main roads... so I thought we'd be fine.

 The kids and I checked out, and headed east. The roads were slippery, but the snow wasn't deep and the visibility was ok. I crept along (I hate driving on ice) and was about a third of the way there when the back end of the car just started moving sideways (seemingly on it's own). It was the strangest feeling... the back end of the car was moving sideways, gathering speed as it moved in a circle, and eventually the front end just followed it around. It felt as though neither the brake nor the steering wheel were attached to anything... I couldn't stop the slide. We went up and over the median (mowing over a bunch of evergreen bushes in the process) onto the wrong side of the four lane road, then... still spinning, up and over the median again ending up back where we started (even facing the right direction!). We sat for a minute, while I calmed the kids (and myself) and then I tentatively put the car back into gear to see if it was still drivable. It WAS! It drove funny though, so I stopped and quickly checked it... no flat tires, no obvious damage... so we kept on going.

 It was such a strange drive... the farther east we drove the worst the blizzard got. I could see nothing but white at times, and we were almost the only ones on the road. We made it through the little town closest to the new house, and started up the hills leading to the house. The car still felt funny, but it just kept moving (and I just kept praying). We were about 2 miles from the new house when the car stopped. It was still running but would no longer move forward. We were out in the country by now, and I was pretty worried. It was just the kids and I... in a broken car, in a  howling blizzard... and my cell phone didn't have any reception. Within just a few minutes though, I saw a big SUV heading towards us (from the direction we were going) and flagged them down. The woman driving said she'd turn around and come back for us. While she was gone I backed the car off the road (it would still go backwards!). The kids grabbed their overnight bags, and I grabbed M's meds, and we jumped in the SUV.

 As it turned out, the woman who stopped lives in our new neighborhood. She had left to go to town, but had decided to turn around and go back home when she saw how bad the snow was. Had my car stopped any sooner, she would have already turned around and missed us...

 By the time she dropped us at the new house, it was more than four hours after we'd left the motel for the 20 minute drive to the house, and the snow was about a foot deep. We ran down the driveway and into the garage, then found the light switch and wound our way, through the boxes and things, upstairs and into the house. The house was cold, but I turned up the heat and we finally warmed up. I tried to make a fire in the fireplace, but the wind was blowing so hard that it was blowing down the chimney and I couldn't get a fire started.

 That first morning we had a "breakfast" of sprite and chips that had been leftover snacks from the day before. Then I started digging around and found a box of pantry food, a tiny TV set, a radio, and an old plug in telephone. That gave us food, a way to check on the weather, entertainment for the kids (kind of... the TV had no antenna) and I was able to call dh and let him know that we were ok.

 We were snowed in for 2 days before dh and K could make it to the house. During that time I unpacked some boxes, and moved some of the smaller furniture into the house. We ate a lot of instant oatmeal and canned soup during those days, and slept together on the floor. The kids still enjoy talking about "camping out" here at the house...

 When I finally got my car dug out and towed to a repair shop, we were told that I had a broken axle from the accident, and it had also caused other major problems in the rear end. They were surprised that I was able to drive it at all after the axle broke, and were really surprised to hear it had gone another 10 miles or so. They said the rear wheel really should have fallen off... (I'm thinking it took several "every day" miracles to get us home through that storm!)

 Well... the wind is still blowing sideways here so I'll end this with a couple of pictures I took earlier today...

 Looking out through the ice covered window...

 

Brrr......

Can you by looking at this tree, which direction is north?