Tuesday, September 25, 2012

Saying Goodbye

This week has been a hard one as most of you know.  My dear friend Wren lost her battle to cancer this past Saturday.  For those that don't know the story, she was here in California for 3 years and 2 of those she was my MOPS leader.  She held my hand and prayed with me throughout Tom's battle with cancer. 

They were planning on their family being complete at 2 little boys, but despite all precautions she became pregnant again.  They took this as God's blessing and knew he would provide.  Quite suddenly Brian was moved by the Spirit to return to Texas for a new pastoral job.

Within a month of that move and at 25 weeks pregnant they discovered Wren had stage III Colon cancer.  They weren't totally sure at that point if it was only stage III because they couldn't do a CT scan, but from what they could tell on the MRI it was stage III.  They had to do a milder form of chemo that was relatively safe for their baby.

Grace Horn was born in August of 2011 with much rejoicing.  Though she spent some time in the NICU she was a fighter and quickly was able to go home.  They discovered that the cancer had spread though and Wren's fight got harder.  I won't go into all the twists and turns.  What I will share with you is that throughout Wren's battle with cancer her faith was steadfast.  She took time to look at other people's needs and to pray for them.  When it became clear that treatment was not helping she went on Hospice and on September 22, 2012 Wren went home to heaven.

It never ceases to amaze me that someone I knew for such a short time has had such a profound impact upon my life.  I keep shedding tears as my heart breaks for her children and those of us left behind.  The world lost a huge light on Saturday and I am sorry for those who never got to know her.  As someone said, she never knew a stranger.  She had this infectious smile that couldn't help cheer you from even the worst of moods.  I may never know the purpose in Wren's journey ending this way, but I do know she led people through her battle to Christ.

This morning in my sorrow a poem came to me...I literally sat down and typed it out.  I couldn't even see the screen for all the tears pouring down my cheeks.  But it has seemed to bring comfort to many.

So I will share it on here and I hope you will join me in saying goodbye to Wren and in praying for her husband and kids who now must face this life without her.

Wren’s Wings

Big blue eyes shining Bright
Met their Savior the other night
Babes at rest did not know
Their sweet mom an angel would go

Sweet Sweet Husband held her hand
Through every test though not their plan
God hold his hand now
As he goes on, but doesn’t know how

Friends all prayed from far and near
In hopes their pleas God would hear
The answers you see are not always yes
Sometimes the answer feels like a test

She knew her path was clear
We all still hoped it would veer
Her faith stood strong it never failed
And now heaven to her is unveiled

Sweet Sweet Wren traded her wings
From those of a bird to those that could sing
May her babies always know her love
For it will shine from above

We will miss you dear beautiful friend
Your spirit could fill a canyon with no end
Fly fly wonderful mother and wife
We will see you in the next life.

Wednesday, September 19, 2012

Confessions of Wonder Woman

Okay I know what you're all thinking, "just what kind of ego trip are we taking now?"  Well I am actually here to derail this myth.  You see of late I have been hearing a lot of comments directed my way along the lines of, "You are incredible in all that you do." or "I don't know how you do all that you do and so well." or even "no one else could do what you do."  Yesterday I had a play date for Alina and when they arrived I had to apologize for the state of my home as I am in the midst of reorganizing, and we all know that means more chaos before the calm.  She actually told me it was refreshing to realize I am human too as she has had this perfect picture of me and seeing a perfectly kept house would have been just too much for her.

What I want to know is how I got this reputation?  I am far from wonder woman and those who know me well know all my foibles and love me anyways...but they certainly don't think I'm Super Hero status, right?  I guess I'm doing a good job of putting my best foot forward for the world.

Here is my problem though, I really wish I were Wonder woman.  First of all, I'd look smokin' in a bikini, but more important I'd have the answers.  Right now I wish I had x-ray vision to see into my kid's minds to see what was really going on in there.  Maybe then I'd have a little patience.

Yesterday, I shared a post that talked about trying for a minute to know what it's like to look good on the outside but be falling apart on the inside, like those with autism, cancer, ADHD etc...  I shared it and realized this described my kids.  You see they are judged daily on the same bar everyone else is, but both my son and my daughter have to struggle to reach that bar.

As my daughter flipped out over a pretend game, once again, this morning and I felt myself losing my cool, yet again, I realized two things...1) this was becoming an all too familiar pattern and 2) I was not practicing what I posted yesterday on Face Book.

You see, I too judge my kids by what my minds eye sees as "normal" and want to scream "Why can't you be more like_____________"  But I realized, in a moment that literally took my breath away; it's not their fault, they have inner chaos that ___________ doesn't have.  Alina has demons she battles everyday and even still sees the world in such a positive light.  The same world that rolls their eyes and walks away when she throws a fit, or snickers when she counts items repeatedly, or guffaws when she tries to read out loud and freezes for no apparent reason mid stride.  This same world is the one which she sees for only it's beauty and prays for all those who have it harder than her daily.

I think God shattered Wonder Woman's steel heart this morning as I realize I have NO IDEA what is going through Alina's mind or how her body is feeling at any given time.  What I do know is that right now we are struggling to find balance for her.  She grew over the summer and thus a need arose for an increase in medication as she was having a few seizures.  But the increase in medication has made it nearly impossible for her to concentrate as she is so tired.  She took a nap nearly every day this weekend and she slept an hour longer in the morning, both accommodations are not possible in her normal school day. 

How about my son, who I've been exacerbated by lately as he will suddenly say really mean words or physically try to hurt someone?  Maybe he is having leg pains and at that moment doesn't want anyone near him, or maybe his tummy hurts.  Or maybe he's feeling tired but is three and doesn't want to admit he has to slow down.  I know some of these issues are common among three year olds and their parents, what I struggle with is knowing if my son actually has something more going on than the usual.

My son possibly has a disease that we will never for sure have a diagnosis for.  What we do know is we have two neurologists saying that he has many things that indicate he does have mitochondrial disease.  He has basically tested clean on blood work, but that actually doesn't rule anything out as there is no definitive test for the disease and you can test clean and still have the disease.  It is also possible that Alina is more evidence for the disease.  It is possible she either also has it (some children don't have symptoms until 10, then there is the adult onset version) or she has "soft signs" indicating it is in the family.

The scary thing is I want to live in this bubble that we have seen the worst we will. That is a possibility, but it is also possible that this disease will progress and my son and/or my daughter will "degenerate" before my eyes.  That is a thought I have pushed very far to the back of my mind.

If I truly were Wonder Woman, would I be able to tell when my kids are acting out due to physical or psychological pain versus just misbehaving to get what they want?  I would hope so.  But this is a striking reminder that I am no Wonder Woman, because for my kids I just don't ever really know the answer to that. 

Sunday, September 9, 2012

My Mom...My Hero

So, although it's not mother's day, I've been reflecting a lot on my mom lately and our relationship.  You see if you didn't know, I am the youngest of 8, and as you might imagine when you get that many personalities in a room it gets interesting to say the least.

My mom and I have had an interesting reltationship and most of my siblings (if not all) would classify it as a me being spoiled type of relationship.  I used to feel the need to apologize for my birth order and some vague appearance of getting more than someone else.  As I've gotten older, I have realized that appearances are just that, and you can "other side of the fence" yourself right out of perfectly wonderful relationships.

I love all of my siblings in different ways and they each provide a unique perspective on our childhood.  The one thing I can say is that being the one born so far from the rest, (the next sibling up is 7 years older) I always felt a slight distance to my siblings.  They have all these memories together and I am but an after thought.  I don't share in the collective memories.  As children on basically a working farm, we each had to pitch in, and as the youngest the load got a little heavier each time someone moved out.

These used to be things I was jealous of to be frank.  My siblings however, saw a different picture.  They saw their youngest sister get all the love and attention to myself, that themselves craved.  It's not that my parents didn't give them that, it's just there are only so many hours in the day and when you are dividing by seven, it's a smaller piece of the pie, than when you are dividing by1one.

I think in highschool I resented that single minded focus my parents could devote to me.  You see I got away with nothing (not that I tried to do much really).  So, for a time my mom and I fought a lot.  At this moment I really could tell you over what we fought, but it seemed important at the time.    Being a mom I now admire the things I used to be disgruntled over.  You see my mom had the audacity to make me wash my own clothes, cook my own breakfast and make my own lunches.  I also was in charge of some family dinners.  Not to mention all the animal related tasks that came with living on 90 acres with lots of horses, dogs, cats and even some chickens.

When I went t o college, I was shocked at how few held these skills.  They could all cook a bowl of cereal, but beyond that was asking a lot. And laundry?  Well that's what visits home were for.   My parents launched me into the world ready to be functional in it, but still provided a net in case.  I am now taking a page from my parents play book and trying to teach my kids what it takes to be in the world.  You see we do them no favors when we do EVERYTHING for them. We launch people into the world that then EXPECT the world to give them a hand, instead of people who look for ways to offer a hand.

A week ago I began the training task by having Bella make our family a dinner.  I set rules.  There had to be a fruit, a veggie, a protien and she could pick a side if she wanted.   We pulled out the cook books and she figured out a menu and made her shoppping list.  I then took her to the store and showed her how to shop within a budget.  Then the night of, I helped her in the kitchen, but she was the chef.  She got help with things like the big boiling pot of water, and cooking tips, but the accomplishment was all hers.

The pure satisfaction she took at knowing she could do it was eye opeing for us both.  She knows there's a lot to learn, but she wants to learn it.  She then took left overs to school, and proudly let her friends sample it and the boost this has given her is more than I ever hoped for.

The new rule in our house...do not ever say "I'm bored" we will find something for you to do and it may just well be pulling weeds or scooping poop.

My mom is still teaching me and this also makes her my hero.  You see she is on her last year as City Council Member in Page, AZ.  I had no idea until I spent time with them this summer all that my mom has accomplished in her tenure.  From dedicating city trails (thus ensuring their future), to cleaning up the trash (literally),  to abating substance abuse problems, not by punishment but by education and offering alternative activities, to actually balancing a budget on the heels of major cuts in revenue.  She has taught me that when you see something that needs fixing, you don't wait for someone else to step in, you take the initiative and you do it.

Thanks mom for all the lessons you've taught and for being my hero.