This week has been hard but at the same time full of joy.  Sometimes I kind of laugh at myself because of my conflicting emotions.  One minutes I’m going through the motions not really thinking about how this or that circumstance or my actions and words affect those around me, how they affect my spirit and my mood.  But then I have moments of complete reflection, looking back at all I’ve overcome in my 39 years, all my family has been through, how the choices I’ve made have influenced the circumstances of my life today.  And as we all have those decisions and moments we wish we could change or wouldn’t ever want to experience again, there are so many that are worth remembering, worth sharing, worth keeping close to my heart.  I was asked this week to speak at our church’s women’s Christmas event at the end of the month so for the past two days I’ve been thinking a lot about what to share, what God wants me to share.  I love to speak about Ryan and all that has happened in the past nine years because it’s such a strong reminder and testimony of God’s goodness in the midst of heart ache and struggle. I’ve experienced how He continues to provide for our every need, how He holds us in the dark moments, how He continually reassures us He’s got the future figured out.  It’s a blessing and a privilege to share the good news of God, the hope he gives, the promise of eternity after we accomplish the work He has for us here on earth, the gift of joy in the midst of difficulties, the reminder that in spite of circumstances and heart wrenching times He is still on the throne. 

Sidney made the volleyball club she was hoping to play for this winter which is exciting.  She throws her heart and soul into volleyball and relishes the opportunity to play and do it well.  Right now the club is in the process of separating the girls into teams so she had two 2 hour practices this week and next week has two more.  Would you pray for her?  She is struggling with the fear of being put on a team where she won’t be challenged.  She has been on teams for several years where she has been the best, or one of the best, players and hasn’t felt challenged.  She has been frustrated by the lack of competition and effort some of the players have given.   And now as she starts with a new club, she is hoping she will be on a team where she is the one challenged and has the opportunity to give it her all and sharpen her skill.  So tonight as we came home from practice, she was in tears because she felt like she was playing with girls who “wouldn’t dive for the ball or move their feet, they just stood there”.  She’s worried she’s going to be put on a team that isn’t very good.  Sidney simply needs a good thing right now.  She needs a blessing. She needs an answered prayer.  She told me tonight through tears, “God just doesn’t seem to be listening because he isn’t answering any of my prayers”.  Can I just say how heart breaking that is as a mom to hear from your child?  How do I adequately explain that God doesn’t always give us the desires of our heart?  I can say she realizes her volleyball skills come from God; she thanks him often for the gift of athleticism.  But like I said, she needs a good thing right now.  She’s struggling with fear because of Ryan’s condition.  These kids aren’t stupid; they know exactly what is going on with their brother.  They feel the same pain, the same worry, the same heartbreak Travis and I go through as we watch Ryan very slowly decline.  And it’s so hard to see my kids endure such pain.  I can’t even put into words how difficult it is.  As much as I know beyond a shadow of a doubt that God is good all the time, Sidney doesn’t have the eighteen years of marriage behind her that I have with the difficulties I’ve experienced to be able to see that life is hard but God will always provide. She couldn’t possibly have an adult perspective at thirteen years old.  She needs an answered prayer.  So please pray with me and ask God to bless her with a volleyball team that challenges her.  God knows her heart and I have no doubt he will provide what is best.  But he also tells us in Matthew 7:7 –

Ask, and it will be given to you; seek, and you will find; knock, and it will be opened to you.

The other boys are doing well.  Such sweet kids who are incapable of doing the dishes without being asked, who can’t seem to find the laundry basket every morning, who leave clothes on the bathroom floor and dishes in the basement.  There are those conflicting emotions again.  Love them to pieces in spite of their inability to pick up after themselves without being nagged reminded. Is it a boy thing?  It is at our house.

Sweet Ryan is having a rough week.  The poor little guy has a cold and as usual for him, that means an ear infection to go with it.  It’s a package deal for Ryan.  Last year at this time he got a cold and ended up in Children’s Hospital for a few days with his first ileus.  His stomach and intestines like to slow down or completely shut down when he gets a cold.  He’s been crying in pain for the past few days.  It’s simply heart breaking because he has a very specific cry for pain and we’ve heard it too much.  So after a visit to the doctor today he is now on antibiotics and even has impetigo because the cold and ear infection must not have been enough.  And as I said last week, Ryan has officially started that “last ditch drug” Sabril.  I have to say it was really hard to get the scissors and cut that first little packet open.  As I sprinkled the medication into some water then stirred it up to put in Ryan’s feeding tube, I remember thinking, “this is it”.  Modern medicine is always coming up with something new, but I have honestly lost hope in the medical opportunities we have for Ryan.  Oh sure we can put him in experimental trials but I’m not about to do that to him. We can revisit old medications that have failed, but really, what’s the point?  Another disappointment and slap across the face reminding me that his seizures are malignant.  Then comes the worry as I sit and fret over what is next.  How long will it be before the seizures come back in full force when this drug fails just like all the ones before it failed?  How long do we have before he stops walking, stops smiling and making eye contact, stops interacting with us.  Boy can my mind get the best of me.  But the truth, that conflicting emotion, is a promise from my heavenly Father that Ryan is exactly where he should be…resting in the arms of our loving, capable Father.  I see him there when I close my eyes at night.  I sense His presence when I sit next to my boy on the couch.  I remember all the verses in the Bible about God’s goodness, His sovereign will, His mercies that are new every single morning, His love that knows no limits.  And then comes the peace.  It’s then I remember my job is not to figure tomorrow out; my job is to trust.  To remember God knew from the beginning of time this would be hard.  He also knew we’d need a lot of reminders of His goodness, of His grace.  We’ve seen it, felt it, experienced it in so many ways from hearing the tender voice of God and receiving His goodness through the blessings from others.  The Afters sing a song with some amazing lyrics that absolutely cuts to the deepest parts of my being.  It’s truly my prayer of thanksgiving and hope.

Waiting for the sunrise
Waiting for the day
Waiting for a sign
That I’m where you want me to be

You know my heart is heavy
And the hurt is deep
But when I feel like giving up
You’re reminding me
That we all fall down sometimes
But when I hit the ground

You lift me up when I am weak
Your arms wrap around me
Your love catches me so I’m letting go
You lift me up when I can’t see
Your heart is all that I need
Your love carries me so I’m letting go

You lift me up with your love
You lift me up with your love
You lift me up with your love
You lift me up

I know I’m not perfect
I know I make mistakes
I know that I have let you down
But you love me the same

And when I’m surrounded
When I lose my way
When I’m crying out and falling down
You are here to

Lift me up when I am weak
Your arms wrap around me
Your love catches me so I’m letting go
You lift me up when I can’t see
Your heart is all that I need
Your love carries me so I’m letting go

I can see the dawn is breaking
I am feeling overtaken with your love
With your love
I don’t know what I can offer
In this moment I surrender to your love
To your love

You lift me up when I am weak
Your arms wrap around me
Your love catches me so I’m letting go

You lift me up when I am weak
Your arms wrap around me
Your love catches me so I’m letting go
You lift me up when I can’t see
Your heart is all that I need
Your love carries me so I’m letting go

I can see the dawn is breaking
I am feeling overtaken with your love

So as Ryan continues to seize, as we see new seizures this week, as he appears weaker than usual, as he sits slumping to the right and drooling down his chest, as he struggles more to get in the car and in his bed, He’s lifting me up.  He’s carrying me with his love, He’s wrapping his arms around me.  What could be better than to trust the One who has everything covered, who never worries but longs for us to trust Him with every tomorrow.  He’s a good God and I believe that even in the midst of trying times, in the midst of tears and sorrow, in the midst of an unknown future, my Savior can be trusted.  That’s all he requires of me.  Authentic faith.