Happy Birthday #5 !!!!!

Happy birthday my sweet girl! It's hard to believe that 5 years ago today your daddy was telling me to "Try harder!!" as Star Trek was only 45 minutes away. You were a good girl and came with plenty of time to spare but the moment he laid eyes on you, all thoughts of Borg and deep space were instantly vaporized. The midwives only stayed a short while and then left us to get to know you and start our life as a family together. Who would have thought that years later we would be where we are now. It's been a bumpy road kiddo and you have endured far more than your fair share of hardships but you are a fighter with that never say quit attitude - unfortunately that also extends over to things like spreading peanut butter on the tv and emptying the pantry. You never do things "little" and it's that all or none, go hard or go home spirit that has kept you going thus far. Even when things are rough, you always have a smile or a giggle and a belief that hugs can truly make things better.

You have taught me so much over the course of your life. Because of you I see the world differently. You have taught me that sometimes it's the little things that are important and that it's ok to simply live in the present. Forget worrying about tomorrow but rather make each moment count as it comes.

I love you to pieces my girl and pray every day that tomorrow will be a little bit brighter for everyone.

Yesterday we had Chinese for lunch and after cracking open the requisite fortune cookie, this little gem fell out. Normally, Trent and I tack on "in bed" to the sentence, giggle at the resulting phrase (because we are mature like that) and go on with our day. This time, the fortune was met with silence. Trent has not told his family. None of them....which is exceedingly awkward as his father is currently renting out our basement. It's not that we don't want to keep them informed but more like we are simply not prepared to deal with the aftermath that will surely follow. Last summer when Tatyanna started to have a significant number of seizures of differing types, Trent's mom and sister would frequently call us in tears demanding to know why we weren't doing more. It was extremely upsetting and the conversations could sometimes take well over an hour. Trent has long been the anchor in his family. He is their rock. When one of them has a problem Trent is the one that is called, with the hope that he can fix the problem or offer some sort of needed insight. While I appreciate that they are such a closely knit family, this is one situation where Trent's needs must come first. He can't be the one who is consoling his family. I can see how everything is draining him already and I am truly afraid at what is to follow. Bad news travels fast and it is only a matter of time before they find out in some completely inappropriate way.

***

On a sort of unrelated note, I've got to say that I'm truly speechless at the sheer number of encouraging notes and offers of support that I have received over the last few days from all over the world. I can not begin to express what it means to me. Thank you all so very much.

Going postal

The quote of the evening goes to Trenton, overheard while he (in a moment of desperation) was filling out an application form for Canada Post:

"I don't suppose I should include the fact that I can hit a target with a high powered rifle from 1000 metres under my abilities and interests should I?"

Wondering.....

If my family had to get hit with some life altering event that has long shot odds, why couldn't we just win the lottery or something???

Apparently bad news makes you interesting.....

Wow, if I had know that I would be getting so much company on here I would have made coffee or dusted or something....or perhaps taken a crash course on spelling and grammar to make things a little more coherent But then, I have never claimed to be such things and "coherent ramblings and such" doesn't make for a very good title really. It's kind of an oxymoron don't you think?

At this very moment I'm doing ok and as such don't really feel like talking feelings. Instead I thought I would take a moment to do a public service handbook sort of thing. Think of it as a guide to help you help those close to you who are going through what I like to call "the suck".

1. Offers to help out are always appreciated but don't make them unless you are prepared to follow through. Be aware that most people won't take you up on the offer because they don't want to impose. While I realize that some of you might be counting on that fact, for those that don't, trying offering something specific.

"Is it ok if I bring over a delicious casserole? (again with the oxymorons, I know!) or maybe some cookies....barrel of whiskey...whatever."
"Could I help with yard work...housework....etc."
"Could I take your kids off your hands for a while so that you can......" or simply,
"I thought I'd come over for a visit..."

2. I realize that the situation might be upsetting for you but please take into consideration that the person that you are dealing with has to live in that situation 24/7 without reprieve. If you call them up and are crying or upset and they, at that moment are doing ok, it can ruin the moment for that person. Best to get the tears out before you pick up the phone. Also, if you are the one that's upset it often leaves the other person feeling like they then have to console you.

3. Do NOT say stupid things like:

"Everything happens for a reason."

"God only gives you what you can handle"

"You are so strong...I don't think i would ever be able to go through that"

"I know a person who had something similar and they......." don't even go there.

Comments like these can result in resentful feelings and bloody noses.

4. Never compare situations. Case in point: In the equestrian community that I am a part of there is a little boy who is extremely sick with leukemia. I had someone attempt to compare my situation to that of his family. I believe that they were attempting to console me with the fact that at least my kid doesn't have cancer. They are not the same. Itemized accounting of what each family has to endure to try to make one side seem worse is totally and completely not appropriate. Particularly when you don't have all the information.

5. Take into consideration that everyone handles things differently and processes things differently. There are no rights and no wrongs. Unless the person is continually engaging in self-destructive behavior, let them be! (Read: If I want another glass of a nice south african pinotage and it's not something I'm doing all the time, shut up and pour.)

6. Don't disappear when the heat of the moment is over. The person will probably need your support longer than you or they think.

7. Don't just assume that the person has family or whatever in place and then not call or stop by. Never assume anything. Chances are, they really do want to hear from you.

8. Don't take their anger personally. Don't act offended by it and don't keep thinking that you need to fix it. It's something they need to work through. Leave it alone.

9. I think that this one only applies to me. If I want to make jokes about hating Katie Holmes because she's so damned perky....and happy...and has "everything she could possibly want (or so she says" Let me. I'm really not that bitter and I really don't hate her but pretending to makes me feel better, so there!

10. Again, this one is just me. I truly appreciate that people need to do research and educate themselves on the evil that is Batten Disease but unless it's a huge news announcement on some new therapy or I initiate the convesation please please don't inundate me with what you have learned. It goes back to the fact that is is our lives and we are attempting to continue live despite it all. My kids deserve that. I spend hours conducting research and sending out emails. Sometimes it's nice not to have to focus on Yanna's illness. It helps me be a better parent.

I'm sure there's more but I figured that this was a good start. Also keep in mind that everyone is different so what's true for one person might not work for someone else. That's why these are called guidelines.

and it all comes crashing down....

There is really nothing that can prepare you to hear that your 4 year old daughter is never going to grow up. There will be no sleepovers with friends, no shopping for prom dresses or sharing motherly wisdom. There will be nothing but memories of a valiant little girl who fought so hard and lost so much.
Today Trent and I got the bad news we have been waiting for. Tatyannday a was diagnosed as having progressive myoclonic epilepsy also known as Batten's syndrome or Batten Disease (late infantile onset). Our suspicions were confirmed once we arrived at the hospital to find that the neurologist had booked a conference room and was coming in on her off. Things grew more ominous when we were informed that a nurse and social worker/support staff would also be present. While I really wished that I would have better news to share and that the ordeal of the past few weeks could be filed somewhere next to "cancer scare 2007" (yeah i know, I never did tell you about that one) I knew deep down that it wasn't meant to be. I wish somehow that made things easier. At this point I'm numb. I could feel my psyche slide into survival mode as the information was divulged. While I've held my sobbing husband and felt my whole world come crashing down, I have yet to shed a single tear. I know that won't come until later. When all the house is quiet and everyone is asleep. In some ways I hate that I'm like this. Things would be so much easier if I could just let my guard down and allow someone to console me when things get tough but at the same time there's a well-trained part of me that's not willing to let that control go.

Tatyanna my sweet girl you have endured far more than any child should ever have to with more courage than most adults. My heart is breaking and my soul aches. I truly wish that I could make this all go away.

***

RIP scuba phone

***

After months of working sporadically, my beloved Sony Ericsson W550i Cell Phone has gone on to wherever it is that cell phones go when they die. One minute it was working, the next the window showed nothing more than a brilliant display of colourful pixellated confetti. I choose to put the blame on the corporate giant known as Walmart as the phone was in working order when I placed a call prior to entering the store and it was no longer working once we left. Logically speaking, it must be Walmart's fault....right?? We won't talk about the fact that it really hasn't worked all that well since it took a dip in the toilet about a year ago (thanks Lex).

I thought for interests sake I would show you my cellular progression beginning with my white Motorola behemoth of a phone, that was so big that it couldn't fit in my pocket and had no extra features to speak of, and ending with my sleek new HTC touch phone, with its fun iphone-like touch screen capabilities. I was really torn between the HTC and the Blackberry as both had the email and PDA like features that I felt I needed but in the end since neither had the Worm Forts game I went with my first choice. Yes, the worm game really would have been a selling feature. For the first time ever, I actually had to consult the user manual to figure out how to use my phone.

personal anthem

I'm not even remotely a country mucic fan but I found this song playing on a blog that I was reading and found it pretty inspiring. You should go and find it for yourself and give it a listen. I'm thinking that I should probably download it for myself as my repeated trips to that website will having my looking suspiciously stalker-like should they have some sort of embedded stat meter.

***

Bring on the Rain-

Jo Dee Messina/Tim McGraw

Another day has almost come and gone

Can't imagine what else could wrong

Sometimes I'd like to hide away somewhere and lock the door

A single battle lost but not the war ('cause)

Tomorrow's another day

And I'm thirsty anyway

So bring on the rain

It's almost like the hard times circle 'round

A couple drops and they all start coming down,

I might feel defeated, I might hang my head

I might be barely breathing - but I'm not dead

Tomorrow's another day

And I'm thirsty anyway

So bring on the rain

I'm not gonna let it get me down

I'm not gonna cry

And I'm not gonna lose any sleep tonight

Dear Mr. Bon Jovi,

As a child of the 80's I grew up with your music playing in the background of my life. I'll be honest with you, I was never really your biggest fan. I was angsty, and punk rock fit so much better. But now, it's nostalgia music for me. Comfortable, like a favourite pair of jeans, or my tattered and holey dr. martens; reminiscent of day's when life was simpler. Today when "Livin on a prayer" came on the radio as I was driving I found myself singing along, sheepishly pleased that I remembered all the words. Then I found myself wondering if you had ever tried what your song is about. It's an awefully romatic notion really; one that I probably fantasized about as a delusional teenage girl with her head in the clouds. But I've got to say, as a 31 year old mother of four, this living on nothing but love and a prayer thing really sucks. But I guess that wouldn't make for a very good song, would it?

Sincerely,

Janelle

Lorna Sass is my new best friend....

On your list of things to do before you die you need to go here and make the Amaranth, Quinoa & Corn Chowder. It's that good. Seriously. Go grab a pen and add it to your list right now. The only thing to ruin my idyllic culinary adventure was that I couldn't quite get the song "Mrs. Lovatt's meat pies" from Sweeney Todd out of my head while I was stirring. It was a tad disconcerting to say the least.

It lurks in the dark recesses of my mind, whispering to me. Taunting me with the promise of knowledge it knows I crave. I can see the name written in bold letters but I dare not say it aloud. I won't give in. Any satisfaction that can come of doing too much research at this point is not worth the weeks of anxiety that would surely follow. I'm not usually like this, but the stakes are different now. I've done a preliminary consult with dr.Google. My suspicions were confirmed. The syndome in question is progressive, a one-way ticket with only a modicum of hope that its onslought may be slowed. I feel weak, nauseauted, impotent. How does one even begin to fight a battle that cannot be won?

Letters from the heart

Dear Lab Tech,

Although I feel that you really should be commended on your mad vampire skillz, you did after all manage to do my daughter's blood draw with out even making her flinch, something really has to be said for your level of tact. You have chosen a career where people will be bringing their babies to you and some of them will have some pretty scary things on their lab reqs. Your job is to take the paper, put on your poker face should you chose to read what's written and do your thing. While I could have forgiven you for the raising of your eyebrows and the suprised expression, leaving me sitting in the chair with my 4 year old on my lap while you whisper in the next room about the tests that are being performed is not appropriate. If you've got to discuss it, wait until after we leave. At this point you can feel free to chat it up with your co-workers all you like as it will not make any difference to my reality. Oh, and you might want to work on your whispering as I could hear what you were saying and yes, they really are testing her for that and if I wasn't already aware of the potential severity of the situation your actions would have certainly given me the heads up.

Sincerly,
Janelle


Dear Dr. S

I realize that it irritated you to no end that we were unable to meet with you to discuss the "differentials" but as a medical professional surely you should understand that when I say my daughter goes in for dental surgery at 11 ish, 1030 simply won't work. I'm not sure how you thought the logistics of said meeting would play out really. I also am completely aware that you are extremely concerned about my daughter's health. Be assured, my husband and I share your concern and feel confident that we are well apprised about the potential gravity of the situation. To be honest, your evasive demeanor and refusal to name the condition you are concerned about was nothing more than irritating, particularly since you handed me the lab req with the condition spelled out in black ink. Do you not realize that people read these things and then run home and consult with Dr. Google. I must admit, I hadn't thought of that condition. I thought of plently of other serious syndromes but hadn't done much reading on that particular one.

I agree that sitting down to discuss the "differentials" (this is now the word of the day, go forth and use it freely) is a very good idea but to be honest I'm not sure what the point in a meeting 3 weeks from now would be, considering the test results won't be in for at least a month. I suppose it might be fun to discuss the "what ifs" but it seems kind of sadistic to me. Wouldn't be better to wait the extra week, determine if she does in fact have this syndrome and go from there? Why stress about the maybe's when hard facts are a few short days away? Just a thought.

Sincerely,
-Janelle

Dear Dr. E

I've got to admit it, you let me down on this one. I appreciate your care of Tatyanna thus far but to be honest, I think you've been in over your head for a long time. Your nonchalence over our daughter's worsening condition over the past few months left us grossly underprepared to hear words such as "progressive". I'm also feeling a little deceived. We were told that her MRI results were normal only to find out this weekend that they weren't. I like a suprise as much as the next person, I'm truly not always the bitter, jaded person that I'm sure I can come off as, but this was not exactly one of those fun surprises. I prefer presents. It also left me a little concerned about the credentials of the person interpreting the results. Perhaps he was a University of Phoneix grad too? I do find it intersting that when I asked you if the clonazepam was simply a band-aid to give her a rest for a little while, you responded with "No, it can work really well in the long term as well." Although I was skeptical since that didn't really jive with anything that I've read I let it go. The neurologist informed us that clonazepam rarely works on its own for much more than 6-8 weeks. Kind of a quick fix if you will.....band-aid like even. Also interesting that by week 6 the seizures came back and by week 8 they were worse than ever.

I know that you are the only pediatrician in town and as such it's ok to refer kids on when their issues get a little complex. Nobody will think the less of you. I promise.

Sincerely,
Janelle


Dear Hotel,

I know that we requested a wake up call, but the 6:00 firealam and associated evacuation was maybe a tad extreme?

Sincerely,
Janelle