This past Sunday our pastor spoke about suffering.  It really hit home for us. We are hurting. We don't want to see our son suffer. He spoke about how God uses it as a tool to teach and change us. Suffering either leads to despair or hope. Its so much easier to feel down and sorry for ourselves when we see Luke unable to do something. We so want to be those inspirational parents that seem to make everything possible for their disabled child and always have a positive outlook. But lately its such a struggle to do that. We cried lots of tears this week. Lots of frustration. It can be so tiring trying to find things to do with Luke that make him happy. Part of it is because he hasn't been feeling good. But it will probably always be a challenge and we can either let that bring us down or persevere through it. Some days we will be down. Its hard. But I really want to have more hope filled days. Romans 5:3 says we glory in tribulations, knowing that they produce perseverance, character and then hope. And hope does not disappoint because the love of God has been poured out in our hearts by the Holy Spirit who was given to us. I can always have hope and peace that God is with us through this. I know that Luke will be healed one day. I know that God will be glorified through us because we love Him.  And I know he loves us, like we love our children except his love is perfect. He loves Luke even more than I do.

So we are being remade. We are being healed through the hurt. And the suffering is changing us. It feels scary to really know that I don't have control. At the same time it frees me trust God with everything.

He loves watching and laughing at her.

Love the song we sang at church.

Blessed be your name
On the road marked with suffering
Though there's pain in the offering
Blessed be your name

Every blessing you pour out
I'll turn back to praise
When the darkness closes in, Lord
Still I will say
Blessed be the name of the Lord!

So Luke won his first court hearing yesterday. Insurance had denied coverage of his percussion vest, which is used to prevent and help him recover from respiratory illnesses that could lead to pneumonia. We had to go to OKC before a judge and testify our case of why Luke really needs it. We brought Luke of course because we knew his cuteness would help us win. Jeremy did an awesome job explaining why the vest is necessary for Luke and how it can prevent hospitalizations.  Luke sat in between us and kept smiling at the attorney of the insurance company. Once the tape was turned off that was recording the hearing the attorney said to the judge, give them the vest! So we thank God for giving us favor and for Luke's precious smile and spirit.

Here's Luke doing his strong arms pose. Thats his g-tube on his tummy.

Luke hanging out with Whiskers.

 We have a very sweet cat.

 

Luke's recovery has gone great! Thanks for your prayers! He had his follow up appointment with the surgeon and can now get back in the bath tub and his tube is working great. 

Some really wonderful people surprised us with a new camera so I've got lots of pictures to post. We are so grateful!!  Pardon the duplicates...

My monkey.

Boo Ha Ha Parade

Cutest cat ever.

Luke got a new brace this week for trunk support to help with sitting and keeping his spine straight.

Livi and Whiskers

Trick or treating!

We had a fun Halloween but I've also been really worn out lately. Luke's an early riser and the days get a little long when they start at 5 am. Its also been discouraging that recently several SMA kids have passed away and so many are in hospitals for respiratory problems. We are thankful Luke has stayed so healthy.

Its been a year now since Luke was diagnosed and its definitely become easier to talk about everything. But some days its just hits me all over again and I really have to fight to keep trusting that God is in control. At the same time God has provided for us and touched our lives deeply because of Luke. Life can be really short for some and we don't take it for granted. I need Jesus more than ever before and that has made me cling to his Word and trust it.

 Its crazy how much life has changed in just a year and all the people we have met because of Luke. So many families are going through the same challenges as us. Some are grieving the loss of their child, others like us are fighting to keep their child healthy and strong.

My devotional the other day said: He delights in nothing more than our choice to believe Him over what we see and feel. That's what I have to do alot of the time. Believe Him when I feel like this isn't fair and believe Him when I see my child getting weaker even though he should be getting stronger.

We know that all things work together for good to those who love God, to those who are called according to His purpose. Romans 8:28