Friday, May 24, 2013

This n' That

This is a post that is all over the place.  It's been too long since I last posted. So be warned....:)
I've been meaning to blog but haven't found the words to express what is happening in our lives in a gracious manner.  We have been incredibly discouraged.  It seems that at every turn we are faced with more obstacles...and less, and less support.  That's not to say we do not have any support.  We do.  However, the support comes from a handful of people...and even then the support is often offered at an arms length.  It has been our experience that non Christians are much more supportive than "the church".
We were recently approved for a grant of $2,000 through ABBA Canada. We are incredibly thrilled to receive this!  However, we have yet to find a Registered Charity that will accept these funds on our behalf.  If we can not find a Registered Charity we will not be able to get this grant.  Normally it is a church that accepts the grant.  My heart is incredibly burdened.  I understand and respect that churches can jeopardize their status as a Registered Charity.  However, it is a direct reflection of the need for churches to have an Orphan Ministry.  I know there is a reason for all of this.  That good will come from it.  I know it without a doubt because that is what God keeps whispering to my heart.
 Assuming we get the grant, we still need about $18,000.  Overwhelming.  This time more so than ever before.  At this time we only have access to this one organization that offers grants.  We have raised over $1,000 through Once Was Lost as well.  That amount blows me away!  (Thanks a bunch Chantal!!  Your hard work and determination is one of the things that keeps us going.) 
Last week was filled with many appointments.  One was another all day appointment at the cleft lip/palate clinic.  I had hoped we would walk away with a definite plan.  That was not the case.  However, we did learn a few new things and a tentative plan is being worked on.  Malia's hearing in her left ear has improved to the point of being almost normal.  Praise God!!
We also discovered that Malia has one 6 year molar that still needs to push through before more work can be done on her palate.  The plan is to extract the stubborn baby tooth in the next week or so.  Once the 6 year molar comes through (hopefully within 6 months) we can proceed with the next step.   This step is the one that scares me.  I try not think about it too much, to put on my brave face, but after the past few weeks it is almost too much to think about.  Thinking about it has me in tears.
Please remember that the following is my understanding of what will happen and is written as I understand it...
Basically what will happen, in about 6-8 months, is that Malia will have surgery to correct her teeth, which are attached to knobby piece of moveable cartlidge/skin (my terms...not the doctors).  A bone graft will be taken from her hip and used to create a gum line to which the teeth can be attached.  Moving the teeth forward and rotating them into the correct position will create a hole in the back of Malia's mouth.  As I've said before, Malia's cleft is a severe case.  Her palate is hard and has a lot of scaring leaving no extra tissue to work with.  This means that a sliver of tongue will be taken and sewn to the roof of her mouth to cover the hole created by moving the teeth forward.  The sliver of tongue will still be attached for about 2 weeks at which time it will be released.  That will mean a liquid diet for Malia...not mention a lot of pain.
At this point we talk openly about Malia's surgery, but do NOT discuss the details.  So for those of you reading this...please do not talk about this to your kids who may then talk to Malia.  We prefer to focus on the positives...talking about how her cleft issues will slowly be corrected and less noticeable.
Recently Malia has been writing notes.  This is one she wrote to Martin.

Martin responded with a note that said  "I love everything about you!"
Being the typical female, Malia responded by writing "What do you like about me?"
We chuckled about this one, but it also saddened us to once again see how incredibly self conscious she is about her lip and nose. 
 Hang in there baby girl!  We'll do all we can to ensure you feel confident about your looks!
Speaking of looks...Malia had her dance recital this past week end and nailed it!  In every aspect!   She had to wait until almost the end to perform her solo piece.  At dress rehearsal she was hardly able to complete her dance, kept her head down and barely smiled.  I began telling her how she would be a star the next day, how much fun she would have, that this was her opportunity to perform like she always dreams about.   On entering the stage the audience responded with "Awww!"  And look at her!  Isn't she a beauty?!!!  Anyhow, she aced her performance and came off the stage beaming! :)

These past few weeks have been a time where I have had to work very hard to look at the good in life and to be grateful for all the little blessings and details in my life.  One day this week God blessed me with an "in your face" moment that I simply could not help but notice and be thankful for.
Raina has been admiring all the dandelions as we drive from place to place and until last week we hardly had a flower on our yard...I wonder why? ;)  Shhh!  Can't let the kids know what we do to their lovely weeds flowers.  :)
A few days ago as I was planting my garden, I noticed Raina walking barefoot into the tree line filled with pokey needles to pick some flowers for me.  She was one determined little girl and picked a handful.  She came to me with eyes glowing and said "Dandelions make me happy!"  I couldn't help but smile!  A short while later, after we had found the perfect "vase" (any guesses on what the "vase" is? LOL!) for the flowers she earnestly looked at me and asked "Mama, can you pray for my flowers?"  Which, translated means, "Can you thank God for my flowers?" 
And I did!  I thanked God for little yellow flowers that make little girls'
 eyes glow and warm Mama's hearts all over the country!


Chantel Klassen said...

It sounds like life has been busy Marie!! I am frustrated along with you that you can't find a registered charity that can help you receive that grant, I'll be praying something comes up!!

Malia looks so beautiful in that photo!!

Praying for you guys!

Paige said...

I am praying too that you can find a registered charity to accept these funds on your behalf!

I love the dandelions! I pray that as you prepare to go get Jackson that everything will come together.

Patrick and Christina said...

Praying that you can find a charity to accept on your sounds too crazy that a church can't do this for you.

Mahlia is beautiful in her costume! She looks like a natural performer...Absolutely a beautiful little girl. I only pray that she comes to terms with everything.

Praying for your family as you prepare for Jackson!

Kathy said...

You let Malia know that both Uncle Mark and I think she is absolutely gorgeous!
can't wait for the day when our little girl picks flowers...right now she eats everything ;)

Carla said...

First of all that note made me cry...your daughter is stunning, so beautiful! So elegant in her dance dress. Second of all....uggg. I'm so sorry you guys have had to walk this journey without others to help shoulder the burden and walk along side you. I will be praying that that all changes very soon. I want people for you who will not only offer support at arms length but who will wrap their arms around you. Keep following that whisper...let Him lead you to people who will be community/family/ God's provision and Jesus people to you. He did that for us a couple years ago when we were so discouraged, disillusioned by "the church" as we had been experiencing, and hearing that strong whisper.

oh and that surgery sounds horrid. poor girlie.