Tuesday, November 20, 2012

Gratitude Update

"Give thanks to the Lord, for He is good.  His love endures forever."
-Psalm 107:1

Happy week of Thanksgiving!!  I hope you plan to celebrate with family or friends and eat A LOT (recipe at the end).  That’s our plan!

I love Thanksgiving, because it reminds us to do what we should do every day: to reflect on our blessings and have a thankful heart.  After all, the Bible tells us in 1 Thessalonians 5:18 to give thanks in all circumstances, for this is God’s will for us!  It’s humorous how much time we spend wondering what God’s will is for our lives when it is as simple as that, along with being joyful always and praying continually.  Pretty much covers all the bases….  Certainly not easy to do, but beautifully simple.

Today, I want you to know how grateful I am for you.  Your partnership in our journey over the past 3 years and 10 months (yes, John will turn 4 in exactly two months!) means more than we can ever express.  And it is clear we still need you!!  After our last post, we truly felt your prayers uplifting us.  And guess what?  We have a neurology appointment today at 1:00 with the doctor we were hoping to see!  Thank you for praying this appointment goes well.  Also, our Medicaid application is complete, along with all the other forms, reports, and medical records I was gathering/filling out.  And the boys are finally over their colds!  Your prayers move mountains!

We are grateful and humbled by how God is truly meeting our needs in Atlanta with the many resources and opportunities available here for John and for our family.  I was able to participate in two wonderful events in the past week and a half.  The first one was an event called Hope Flies, sponsored by the Foundation for Mitochondrial Medicine that raises money and awareness for mitochondrial disease and potential treatments.  A panel of medical experts shared along with celebrity/autism spokesperson and mother, Holly Robinson Peete (you may remember her from either 21 Jump Street or Hangin’ with Mr. Cooper).  I was able to meet her right after the event, and she was truly lovely inside and out, as my grandmother would say!  Not only did I learn so much from the medical experts (and the links between mitochondrial dysfunction and autism, Parkinson's, ALS, epilepsy, etc), but I also felt validated as a mother and in what we are doing for John.  It is so easy to question everything you do or don’t do for your children, especially for your child with special needs.  You should check out Holly’s video about her family.  My favorite line is when her son states, “I may have autism, but autism doesn’t have me.”  So powerful.

Then on Saturday I was able to attend a wonderful women’s retreat called “Brookside” by Rising Above Ministries.  This retreat was just for moms of children with special needs, and what a breath of fresh air it was!!  I felt so blessed to worship and learn among these other women who speak my language and to hear their stories.  With each passing year, I realize that everyone has a story... everyone has pain; everyone has triumph.  Mostly, I came away from the event feeling incredibly grateful for my family, and so honored the Lord chose me for my children.       
I can sit in my cube chair better than ever before!  For a minute or so at a time!

Happy Thanksgiving! 

Recipe for my family’s Cranberry Apple Crunch:

4-5 Rome Beauty apples (peeled and sliced)
1 lb. bag of cranberries (Rinsed and rained)

Combine with 1.5 cup of sugar…
Stir together in a large mixing bowl, then pour into a large baking dish or bowl.

2 sticks (1 cup) cold butter
2/3 cup flour
½ cup brown sugar
2 cups chopped pecans
2 cups oatmeal

With two knives, cut together the butter, flour, and brown sugar.
Stir in the nuts and oatmeal.
Pour on top of the apple/cranberry mixture.
Cover loosely with tin foil and bake at 350 degrees for 1 hour and 20 minutes.

Wednesday, November 7, 2012

Their Return

And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast.
-1 Peter 5:10

I have felt broken recently, which has additionally led to feeling defeated in prayer.  When it comes to John, sometimes I simply do not know how to pray, what to request, or how to incline my ear.  I can feel torn based on past promises I believe I have received from the Lord and also due to the deep, aching desires of my heart.  Do I desperately pray for John’s healing, which I still long for with everything that I am?  Or do I muster up the courage to thank the Lord that John’s healing is already accomplished and to simply wait for its earthly manifestation?  I get confused.

I also feel guilty.  Am I too focused on John’s healing?  Are my prayers somehow selfish?  Am I responsible for the apparent lack of answers in light of my limited prayer life, small faith, or lack of “background” relationship with God I feel is required to deserve John’s growth and development?  As I type this, it is obvious how skewed this perspective is, but I imagine I’m not alone in battling these warring emotions.  We are simultaneously driven by fear and also by pride, thinking it is all up to us.

The fear can easily squelch faith as I find myself hesitant to get my hopes up in yet another prayer session for John.  I realize a disconnect exists between my mind and heart; I’ve been operating in protection mode for a while now.  I have considered my life, in general, to contain so much brokenness that I have inadvertently been shoring up my heart in an attempt to prevent the specific, more intimate brokenness. 

What hit me at church, when given an opportunity to pray for John yet feeling paralyzed in this effort, was that brokenness does not necessarily translate as pain but almost always translates as an openness to receive.  When something breaks, it literally becomes open.  What was once closed is now a path, perhaps carrying a gift.  A softening.  A specific word from the Lord. 

Yes, I uttered to the Lord, I want to receive.  I long to grasp that you really do love me.  That I neither have to take control of the generalized brokenness I often feel marks my life nor do I have to protect my heart from the specific, more personal moments of brokenness.  Fear does not have to seize the victory.

Sometimes brokenness is less about experiencing pain and more about a sacred in-breaking… letting God in to love and care for us.      Healing tears flow that have been absent for a while… tears I considered violently dumped out and depleted three plus years ago, tears that carried grief and unrealized dreams, tears that also carried away a tenderness with the Lord.  But the tears are back, and I feel their Holy Spirit softening.  I give into their cleansing.  And I am grateful for their return.
(Prayer requests at the end.)

From now on I will tell you of new things, 
of hidden things unknown to you.
-Isaiah 48:6

Our friends recently had a bounce house in their yard... needless to say, it was loads of fun!

A shot from our impromptu Christmas photo session last week.  

*We would also your specific prayers this week:

1) John’s general health.  He has had a cold for a couple of weeks now.  Even small sicknesses deplete his energy and make him more susceptible to other illnesses/complications.  We hope we can get back to therapy soon!  And pray against fear; it’s always scary for us when he suffers even from a cold because we are tempted to think back to all the poor prognoses John was given as a baby.  But the Lord is healing us and has brought us a long way!  Praise Him!
2) Upcoming appointments for John with various specialists… that the Lord will lead us to the right doctors in the right practices.  There is one doctor in particular we are hoping to get in to see.
3) For patience and endurance with the mounds of paperwork I feel I am always filling out: for the doctors' appointments, for Medicaid, for the school system/updating John’s IEP (Individualized Education Plan)...even though John won't be attending school this year since we have his home program, we need that updated paperwork to apply for Medicaid. 
4) A new drug being tested now that may help children and adults suffering from mitochondrial disease (and pray for John to get to be part of one of the earlier trials if that is God’s best for him).  For those who want to do further reading, google EPI 743.
5) John’s development and healing.  That we will trust God’s plan and timing in John’s life.

Thursday, November 1, 2012

Oxygen Mask

I imagine most of you are familiar with the following statement from the in-flight safety briefing on an airplane:

“In the event of a sudden loss of cabin pressure, oxygen masks will automatically descend from the ceiling. Grab the mask, and pull it over your face. If you are traveling with small children, secure your mask before assisting with theirs.”

I used to think, “Well, duh!”  I mean, it’s human nature to put your own mask on first, right?  I just never understood this announcement…  that is, until I had children.  I now realize that this announcement is targeting one audience only: moms.  We crazy women who will jump in front of buses if necessary.  The ones who can transform into Mama Bear faster than Clark Kent turns into Superman if someone crosses our child.  Putting on your own oxygen mask first simply goes against every mommy instinct. (Stick with me here, even if you aren’t a mother or even female yourself.) 

After our tragedy struck in early 2009, friends, family, and strangers alike would tell me I needed to take time for myself, to engage in “self-care.”  I’d be lying if I said I didn’t take their encouragement as insults at first.  As slaps in the face.  As one more reminder that I was alone and no one else “got it.”  How could I take time for myself (or even begin to want to) when John’s needs were so great and being alone with my grief was unbearable?  How could I put my oxygen mask on first when all the time in each day wasn’t enough to help John and get the job done?

As the months have turned into years, I now admit and actually encourage others as well that taking some time to yourself is very healthy and much-needed.  Meade likes to occasionally joke that we need to put on our oxygen masks first when it comes things like eating dinner, even if the little ones are equally ravenous.  All kidding aside, there is much truth to this advisory, especially when it comes to our spiritual health. 

So often we neglect our relationship with the Lord, even if it seems like we are neglecting it for “good” reasons such as serving others or helping a child with his oxygen mask first.  But as a friend of ours recently stated, we can’t save our children.  Only God can.  Additionally, we can’t save our jobs, the political situation, our bank accounts, our friends, or the sorrows we face.  But we can take time to commune with the One who can.  The one who is indeed mighty to save. 

Next time you hear that safety announcement on the airplane (or as it is relayed on a television show), remember that the Lord wants to spend time with you.  It may feel like you are pulled in a million different directions or that the world is crumbling around us, and, in fact, it may be.  But let’s remember to put on our oxygen masks first.

“The Lord your God is with you, he is mighty to save
He will take great delight in you, he will quiet you with his love, 
he will rejoice over you with singing.”
-Zephaniah 3:17

We had grand plans last night to attend the church festival around the corner from our house.  However, the boys have bad colds... but they dressed up anyway!  I love our little monkey and lion!