Devastated

Still ... it's been almost two months since Meg was diagnosed with cancer (http://www.caringbridge.org/visit/meghanwalker). God! My baby was diagnosed with cancer. How the f*ck can that be? Don't we have enough shit to deal with? Haven't we had our share?

I know others in the world have it much worse. Some women ache because they don't have kids. Others ache because there children were taken from them. But, it hurts ... so much ... so deep. I cry so hard that I fear I may throw up. My whole body and my entire soul are shredded, every bit in excruciating pain.

It all has to go somewhere; so, in addition to crying, I'm writing and hoping that some of the sorrow will lessen, somehow. Please, God.

Our lives are now revolving around Meg and her treatments. Before all of this, our lives seemed restrictive. Trying to plan anything with the boys was nearly impossible. As a family, we would seldom go any where. Now, that time seems filled with freedom. Planning anything now seems impossible. We can only hope and pray that our lives will change for the better when treatments are over.

But, what if? What if the treatments don't work? What if we are going down a road where we lose our only daughter? Our only (mostly) typical child? I can't go there, but it is so difficult to ignore the elephant in our tiny house. Her condition is serious. Her cancer is stage III. I've seen some survival-rate numbers, but I can't ask about them. I can't write them down. I can't acknowledge them. I can't lose my baby, but I might. How is that possible?!?!

With vomit and poo, what's a girl to do

Lately, I've dealt with a ton of poo and a bucket of vomit. O'kay, I exaggerate. It was probably only a cup or two of vomit, but I'm standing by the ton of poo.


Please bear with me. Writing is therapeutic, but reading this may not be. Feel free to stop right now although I would like you to read the last paragraph. Thanks.


Jakey tends to be constipated ... all of the time. Well, until he isn't, and then watch out. We try to manage his meds so that it doesn't get too bad, but it's really hard to balance. Too much? Diarrhea. Too little? Oh, my. If it's been a while, he may have poo the size of an actual baseball or once it was slightly larger than a soda can. This is not exaggeration. Each poo is usually so big that we can't flush it (I am so sorry, Great Wolf Lodge). I feel for my poor boy. He will do anything to hold in a poo, and when stuff comes out. He wants it out NOW! So we have poo, BIG poo, on the ground because he does not like it in his pull-up. And, how does he get it there? With his fingers. So, now poo all over the fingers, hands, and (ugh) under the fingernails. But, he doesn't like poo on his hands so it ends up on his clothes, his body, whatever he is playing with at the time.


Now, please do not say that I need to watch him more closely. I do. He is incredibly quick. Amazingly so. And so independent that usually won't ask for help. Just takes care of it himself. Ah, poo!


Then there's poor Finn and his poopy pebbles. He really only likes to drink milk, and that's the side effect. Except for the other day when I brilliantly decided to give him pear juice. I was so excited that he liked it. While he was playing nicely, I changed Jakey's poopy pull-up. Never forgetting to scrub his hands, fingernails, sometimes legs, etc. Now, Dyson seemed to be licking something brown off of the couch. I scanned my memory. How? Jakey never touched the couch. Then ... OH MY ... Finny is jumping on the couch and with every jump, liquid poo squirts out of his shorts. That's what Dyson, the dog, was licking.


Now, I had a choice. Try to change him where we were or carry him to the bathroom and get poo all over me. I'm not saying that I made the best choice, but I really didn't want to get poo all over me. First, I kept him still while dabbing up the poo puddles. Then, I made an error. I laid him down to change his diaper. Liquid poo shot out the back of his diaper and formed a puddle on the couch. Yes, brilliance at work. I was finally able to clean him up with no mess by keeping him standing while I removed the offending diaper and wiped up the brown sheen covering him. Lots of cleaning after that ... Finn, the couch, me.


This morning I had to deal with vomit. Chunky milk vomit. Finny must have thrown up during the night and fell right back to sleep. All over his blanky, his bedding, his jammies, his hair. Poor baby. I felt so bad for him. He was fine though. Great time playing. Nice, long nap. Then, Mommy made another error. Oops. He loves to spin so I had him in a big toy tub and spun him around. He loved it until he didn't. Fortunately, it mostly ended up in the tub (still need to clean that out).


Back to non-bodily-fluid stuff ... Now, and extra dose of poo, but not the bodily kind. After a rollercoaster of a ride, we have been told that the iPad giveaway is bogus. It's all rather mysterious and weird. I don't think I have the whole story, and I'm too worn out to go into the details. I apologize if anyone gave money to Marissa's Bunny. They claim that they will return donations if asked. If they don't, please let me know, and I will see what I can do. Two of the families are doing what they can to make the best of this situation, please check out Little Wonders and Blogzilly for more details.

An exciting announcement ... no, not another pregnancy

It's been ages since I've been here. Life is so busy that when I do have downtime, all I want to do is nap and read. As always, I'll try to be better. I want to loosely document our lives before I forget everything. Memory loss happens more and more as I juggle all of our schedules. Sigh.


But, back to the announcement. A couple of months ago I read about an iPad giveaway for people with special needs. Ever obsessed with getting an iPad for Jakey, I entered him. Last month we were informed that Jakey had made it to the finalists. Out of over 350 entries, Jakey moved into a field of 40. 20 iPads were going to be given away, and if the forming foundation received enough donations, then as many as 35 could receive iPads with $500 of apps. 


When I read that Jakey made the cut, I started crying. My baby won something. The little guy --- who never runs a race, never competes for a team, and never enters contests --- made it to the finals. Simply awesome! But, with Brian's help, I dug a little deeper. It's not just that he was on the road to winning, but also that what I wrote about him touched another's heart.


Before Jakey could win, we needed letters from his therapists explaining how Jakey could benefit from an iPad. Of course, anyone who know this technological wonder also knows that Jakey would be in seventh heaven with this gadget in his hands. His ABA therapist at Children's jumped right on it and had a letter for me within a couple of days. Next I approached his case manager and therapists at school. This was decidedly more difficult. First, no one responded to my mails; then, I heard that they might not be able to do it since they were working on a backlog of IEPs. My frustrating was riding high. Their lack of assistance could mean that Jakey wouldn't qualify. Really?!?!? I only needed a couple of paragraphs, if that. Fortunately, one the therapists called me about an unrelated issue, and she agreed that Jakey would benefit from an iPad. A few days later and just in time for the deadline, I received another letter.


The foundation wrote that they would hopefully inform everyone on May 10th about who won the giveaway. Last week moved so slowly for me as I waited to hear.


Cut to Mothers' Day. What a lovely day! Brian packed the boys up and dressed them for church (we're going to Overlake Christian Church since they have a wonderful special needs ministry). After church, we enjoyed a wonderful Mexican lunch. Followed by a short nap and me running away to Tully's where I sipped coffee in a comfy chair with my feet by the fireplace while I read a mystery on my Kindle. After an hour or so, I checked my email on my phone and found the best Mothers' Day gift ever:

"I'd like to say (privately, at this point), that ALL of you final 40 have been selected to receive an iPad.  My bosses hearts were breaking with each tale, so they decided to pony up for five more."

Yep, Jakey won! And, I cried in the middle of Tully's. You see, I fought for Jakey and won. As parents, we decide whether or not to fight for kids every day. Sometimes we win, sometimes we lose; most of the time, we never know the results. THIS time, I fought AND won.


You can find out more about the family behind the foundation and giveaway at Marissa's Bunny.


Plus, if you want an iPad 2 all for yourself while also giving to a great cause, please check out the Marissa's Bunny iPad 2 Raffle.

Bookish Mad Libs

I'm a sucker for memes, but I almost passed this by since I couldn't remember any book that I've read in the last year, not even the one I'm reading right now. This is why I would not do well on Jeopardy; my mind just goes blank. I saw this on The Betty and Boo Chronicles today and decided "what the heck! I have plenty of other stuff that I don't want to do." I need to wait for the butter to soften before I bake Meg some cookies anyways. 

The key is to fill in the rest of the sentence with a title of a book you've read in the past year.

In school I was:  The Golden Child (at least I was to my parents)

People might be surprised I’m: The Book Thief

I will never be: Lord of the Silent

My fantasy job is: Winning by Losing

At the end of a long day I need: More Blood, More Sweat, and Another Cup of Tea

I hate it when: He Shall Thunder in the Sky

Wish I had: The Help

My family reunions are: The Sea of Monsters (don't be insulted, I'm trying to be funny-ish) ... or The Queen of Babble

At a party you’d find me with: The Guardian of the Horizon

I’ve never been to: The Red Pyramid

A happy day includes: The Hunger Games

Motto I live by: I Know I Am, But What Are You?

On my bucket list: The Paris Vendetta

In my next life, I want to be: Catching Fire

Why not play along with the fun?

Promises, Promises

(I apologize for the wacky spacing. I could probably fix it if I edited the HTML, but I think I would rather go to bed.)


Eek! I promise a lot here in the blog, mainly to write more or about this or that topic, but ...


Ever have the need, the desire, to write, to let something out, and when you finally have a moment to spare, nothing comes out. Oh, there are ideas swirling around. Describe latest family happenings, relay significant chats with friends or strangers, or delve deep into my heart. But, when I start to type, nothing solidifies in my mind. 


(after a long pause)


Now, I remember what I wanted to write about. Long, lost friends. There has been a theme this summer, and I'm wondering where God is leading me. I'm always up for a good mystery and more accepting of having one in my life so I am waiting expectantly to see where this is leading. 


I've never been good at long-distance friendships; my cousin Julie can attest to that. I don't write letters and seldom make calls. I used to be pretty good at near-by friendships. I would arrange activities, parties, get-togethers, trips, adventures. But then, like many new moms, my life imploded a little. After Meg was born, I worked full-time and tried to figure out how to be a mom (still working on that one). Then, I was 20 weeks pregnant with Jakey, and our lives completely imploded. The only friends that we spent time with sought us out, or more likely, were part of our work or church lives. If we went somewhere as a family, it was never to someone's house, and we stopped asking people over to ours. Life with Jakey was complicated, and we gave  in to the convenience of keeping to our little family.


Because we are who we are, Brian and I still made friends along the way, and they are very dear to us. With our friends, though, we lead separate lives. I have mine, and he has his. It's odd but easier. When we have a babysitter, we want to spend the time alone, just the two of us. Before kids, we shared our lives with friends; now, we we share our lives together and separately with friends. There are a couple of exceptions, and we've met each other's friends, but hang together? Nope.


Since joining Facebook, I have connected with many friends that I haven't seen or spoken with in over a decade or more. Facebook is an amazing forum for these cyber reunions, and I wish I would take more advantage of the opportunity. I intend to still but haven't yet.


That's an awfully long set up. Long, lost friends. In the last month or so, I have spent some amazing time with friends I haven't seen in ages. Where to start?


First, the quickie. Brian and I were out on a date, and as we are walking along the Kirkland waterfront, we hear my name called out. A co-worker and good friend from the 90's is sitting at an outdoor restaurant with his wife, who is also a friend, and their daughter. We hadn't seen them since before Jake was born. Circumstance hit this friendship hard. After Jakey was born, we had to guard his health. No one was allowed near him, or us, if they were sick. We just couldn't take that chance. His health was too fragile. At that time, our friends were going through a series of colds and flu. And, there they were. Right in front of us. Only a fence kept me from hugging them. We spent only a few minutes talking, but it was nice.


Then, a friend from church that I hadn't seen in 2 years invited Finn and me to coffee with her and her daughter. I hadn't met her daughter, and she hadn't met Finn. We had such a nice time catching up.


Shortly after friending (on Facebook) my RA and eventual housemate from college, she asked if I would be available to meet up with her and her husband when they came to visit Seattle. This woman has always meant the world to me. She impacted greatly the life of a sheltered freshman at Berkeley. I was always amazed that she was my friend, and that I was hers, but that's another story. 


While they were in Seattle, we decided to meet up for breakfast. I wish Brian could have joined us, but he stayed home to work and watch the kids. Breakfast turned into three delightful hours at the 14 Carrot Cafe. We hadn't seen each other in over 17 years, but that didn't matter. Fortunately, they visit Seattle regularly, and now I am on their list of people to see. :)


Next, Mom told me that my cousin and his wife would be stopping over in Seattle on their way to Canada, and they were wondering if I was available to get together. Another trek to the city, and I had a delightful time with my cousin and his wife whom I hadn't met before that day. So fun. We hadn't seen each other since Brian and I took Meg to Chicago 10 years ago.


On that same day, I met with our old pastor, the one who baptized Meg and Jake. We have always loved this man. He spoke into our lives as pastor and friend. The last time that I had seen him was at his 50th birthday party three years ago. I hope to have more to say about that chat another time.


But wait, there's more. In July, we took a trip to Pacific City, Oregon. For the first time, we decided to rent a beach house instead of staying at the inn. Since we could house up to 10 people, we invited my parents and two friends who are local but we seldom see. Lovely. The guy friend was someone that we were both friends with. We even shared a house together years ago. The girl friend was someone I have known since 6th grade (we think). We met playing soccer. Now I see her every week because I convinced her to join the soccer team that I started playing on.


And, last but not least? Last weekend we joined some friends that we haven't seen in 8 or 9 years. We were asked to join them for a surprise birthday dinner and BBQ the next day. That one is a bit too complicated to explain here but very nice all the same.


See it? I do. Brian does. Now, I am excited to see where God is taking this. I also have to add that before this summer of revived friendships, I had a hard time getting together with friends. I'd want to see them but anxiety made it easier to stay home and keep the status quo. During this time, I've had no anxiety about seeing these dear people, none. Something is going on. Maybe it's only inside me. Maybe something is coming. Maybe it's simply a gift to my heart. Some day I'll know, but for now, I'm enjoying the ride.

If I have to ...

I'm playing on my laptop: gone through my email, caught up on Facebook and Twitter, checked out the bargain sites for mommies, read everyone's blogs ... and done. Sigh. Maybe I just need to update my blog. It's been a long time. No one may even remember that I am here. Oh, well. I do this for me.


My mind is a blank. So much has gone on and yet nothing is really new. Guess I better think harder.


O'kay, let's start with last week, no two weeks ago today, Friday, July 2nd. Nothing spectacular about that day, just that pain decided that I had had too much of a break lately. By late afternoon, cramps had set in nice and strong when they were joined by tremendous pain in my upper jaw on the left side. Fortunately, I have vicodin around for those monthly occasions. 


The weekend went by in a blur of cleaning and packing for our upcoming trip. If I didn't take my meds every 4 hours, pain would set in and make us all miserable. Yes, the pain made me extremely cranky, and I did not hold it in. Poor boys. Meg was out of range in California with her grandparents (every year she visits them for 2-3 weeks on her own). 


By Monday, I couldn't take it any more and called my dentist. I was fully prepared to have him paged since the 5th was a holiday, but low and behold, someone answered the phone and set me up for an appointment the next day.


I couldn't wait for the 3 pm appointment. Usually dreading a dentist visit, this was a new sensation to me. Brian and I have been seeing the same dentist, when we go, for about 16 years or more. I've only lived here for 17 years. He's really good and doesn't lecture me too much. Dr. N explained to me what the possibilities were and did some quick tests.


Now for the confession, part of me wanted it to be a root canal. I know that has to be a very bizarre sentence to read. I must be a masochist, right? No, I'm not. I hate pain. Some claim that I have no tolerance for pain, that I'm a wimp. I believed those words for so long that I begin to doubt whether I'm in pain or not, whether I'm exaggerating what I really feel or even making it up. No one has gone through what I've gone through, and I haven't gone through what anyone else has ... really. No one that I grew up with suffered from the crippling cramps that I've had since my teens. No one understood, and I always thought that they didn't really believe me. Of course, my mom saw the vomiting when I didn't take medication ... So to be told that I needed a root canal and that my pain was indeed real was vindication for a crummy weekend.


The same thing happened when I suffered the subdural hematoma a few years ago. I felt relief when I received the diagnosis. Hurray, my pain is not imagined. It is real! 


Back to dentist ... yep, I needed a root canal. Right then. No waiting. No soccer game for me that night (yes, I'm back on the pitch after 2 years). I did not have time for anything but more packing and cleaning.


Thursday, the 8th, was the first day of our 5-day vacation on the Oregon coast. Brian was working mad hours. He literally slept and worked all day, and very little of that was sleeping. Preparing for the trip was up to me: oil change and tune-up for the van, appointments, Mini repair (another story on the goodness of mankind), cargo box research and eventually rental, arranging dog and house sitting, ordering and picking up prescription for the puppy (he gets carsick and was going with us), making lists, packing for everyone, arranging with family and friends who were joining us. 


By Wednesday night, I was spent and lost it. How the boys put up with me, I will never know.


Thursday we were off to our favorite place on earth ... so far. Pacific City. Cape Kiwanda. Pelican Pub. I can say those words like a mantra and feel my blood pressure go down and my cares wash away.


I think I'll stop there while I'm nice and calm and relaxed.

Ugh

Haven't posted since February? I should really do something about that ...