Sunday, April 13, 2014

Fighting For Joy

The past three weeks have been difficult both physically for me and emotionally.  I feel like we have been dealt so much that I have reached my limits and am having a hard time maintaining joy through this process.  It's a struggle.  I don't want to feel this way.  I have so much to be thankful for not to mention that I deserve nothing yet God continues to bless.  It is a struggle physically to walk and do the things that once came so easy for me  and that has taken a toll on me.  Every fall is a reminder of my loss of independence and my dependence on braces,  wheel chairs, and others.  I want Jesus to be enough for me and so I struggle to fight for Joy.  We had a scare with Hannah this week that just sent me over the edge.  She is fine and we are so grateful but I cried out to the Lord enough is enough.  I'm weak and can't bare any more pain.  I long for heaven more than I ever have.  I just long for the day he will wipe my tears away and there will be no more pain. These are big things, and sometimes have been really hard to bare. There have been days where I have cried out to God to give me strength to face another day.  God has been faithful in his word to show me how intentional he is in our suffering.  It’s all so that the works of God can be displayed.  What helps me get through these tough moments is  knowing that Not only is God  in control of our trials but he purposes them for our good.  

  • John 9 where Jesus heals the blind man.  Is a perfect example of this

"As he went along, he saw a man blind from birth. His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?" "Neither this man nor his parents sinned," said Jesus, "but this happened so that the work of God might be displayed in his life."" - John 9:1-3 (NIV)

We might think that it was rather hard on this man to suffer blindness, just so Jesus could come along and heal him. But Jesus tells us that this made all those years of suffering worthwhile. As difficult as it is for us to understand and accept, serving as the object of Jesus’ healing power was of greater worth than a lifetime of perfect vision. Similarly, God may have a purpose for our illness that we do not yet understand. 

Heres a passage that has been an encouragement to me

2 Corinthians 4:16-18 

 So we do not lose heart. fThough our outer self4 is wasting away, gour inner self his being renewed day by day. 17 For ithis light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, 18 jas we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.

It'S NOT SAYING IN THIS PASSAGE that it takes the difficulty away and that all these things aren’t horrible and painful right now and that we should go through life saying everything is fantastic AND It doesn’t mean that because God uses these difficulties that we are to love them.  Its just saying that it is nothing compared to what is waiting for us.  Something far better than we can even imagine. An Eternity with our Heavenly father.

I will continue to fight for joy knowing these truths and knowing that these light momentary afflictions are preparing for us something better than we could ever imagine.  Thank you for allowing us to be real and vulnerable through this journey and thank you for lifting us up in prayer.  We are thankful for you all.

Tuesday, March 25, 2014

Thank You

Sweet Friends and family we are once again overwhelmed by the Love and support you all showed last evening.  Chik-Fil-A was hopping from 5-8.  It was so much fun talking with you all and meeting many for the first time.  We are honored that you would journey with us and love on us in this way.  We have really seen the Lord provide in such beautiful ways.  We broke last years record breaking night by $600.00 and we raised a total of $3,600.  It was so much more for us than the financial gain though.  You all took the time to come out and tell us how you are praying for our family and that means more than anything.  Our sweet boy had a smile on his face the whole night and this will carry him for years to come.  You all are helping us teach him what is says in God's word. Romans 12:15 Rejoice with those who rejoice, weep with those who weep.  Thanks for living this out beautifully.  Thank you to the Purtell Family for allowing us to have a spirit night at your establishment but even more personally working the event and for your generous contribution.  Thank you to Lu Lister for all your work in coordinating such a beautiful time.  Our cups are full and it gives us the encouragement to keep pressing on in faith.  We are trusting that Noah will receive his heart in God's perfect timing and are grateful for the ways he is working in his life.  Thanks again for such an amazing night.

Here is a video from Noah

Tuesday, March 18, 2014

A new set of feet

This week and last has been filled with lots of doctor appointments.  While I'm thankful to have lots of great doctors and there expertise I long for the days this is not part of our normal routine.  Today's appointment was for me.  It has taken me a year and a half to get to the point of accepting that my feet and legs need help walking.  I finally broke down and got AFO braces. Unfortunately I have been in major pain while wearing them. After two different orthotics places said there was nothing more they could do, that it was most likely my feet, and that I needed to see a foot doctor I made an appointment with one recommended by a friend.  Dr. Melissa was super sweet and full of compassion.   I think she almost cried when she saw the braces I was wearing and knew exactly what they were doing to my feet.  She explained that they were hitting a nerve along the side of my foot.  She asked if I was experiencing burning and numbness. YES!! I said.  This woman gets it.  She was flabbergasted that they never casted me and told me a custom fitted padded AFO would bring me comfort and relief and provide a more stable walk.  She brought in a picture and although it was bigger and bulkier I was relieved to hear that it could be solved by a better AFO.  I was thinking that surgery and shots were in my future.  This news was much better.  You bet I will be styling these bad boys and making them look just as cool as my pink wheels.  Unfortunately since they are casted and custom made they wont be ready for about three weeks.  I will have to rely on my dear friends to push me around in my sweet pink ride.  Any takers?

This weekend I got to go to our Church Woman's retreat.  It was such a rich time of fellowship and studying in Philippians.  I felt as though each speaker was talking directly to me and giving me reminders that I needed to hear.  I have really allowed my circumstances to still my joy.  I'm so focused on them instead of the gospel.  I sometimes forget things like Philippians 4:19 where Paul reminds us that God will supply our every need according to his riches in glory or Philippians 4:13 that says I can do all things through Christ who strengthens me . I was thankful to be reminded that our attitudes can be redeemed.  We were encouraged to pray for wisdom as we allow the Holy spirit to redeem our perspectives.  My biggest take away and reminder was that The GOSPEL is the Anchor that gives JOY and fulfillment in the midst of ANY circumstance even Muscle disease and transplants.  The GOSPEL is meant to penetrate EVERY circumstance in our life.  God  continues to work in our hearts even when we lose our focus and I'm so thankful for that.

Thankful even more for all of you who continue to walk this long road with us.  Tomorrow will mark 18 months of Noah being listed.  He continues to do well and we are so thankful for the ways God has protected our sweet boy and for the work the Lord is doing through our circumstances.  Noah has an appointment tomorrow with his Cardio team.  Please continue to keep us all in your prayers.

Thursday, March 6, 2014

Somebody Turned 11

WOWZERS!!!  I have an 11 year old!! That is just crazy.  That means in two years he will be thirteen and then three years after that 16.   Oh man.  I’m very emotional today.  I’m just so blessed that God has allowed me to be this boys mom.  He truly is a gift.  Our prayer is that we get many more years but more importantly that God will use him to impact his kingdom.  It has been a hard couple of years for NOAH but if you asked him if it’s been hard he would most likely say “not really”.  He just has an amazing outlook on life and his circumstances.  He encourages my soul and helps me relinquish my fears because of how brave he is.  He understands that his days are numbered on this earth and deeply cares for others.  Because of his situation he could choose to be sad and depressed but instead he chooses Joy. Noah we love you so much and are so excited to see what God has in store for you this year.  We pray for god’s hand of protection over you.  We pray that you would continue to use your circumstances for HIS glory.  Thank you so much for all the sweet birthday messages for Noah.  He enjoyed each one of them.  Thank you for continuing to pray and support him.  He feels very blessed by you all.

Thursday, February 6, 2014

Short Update

Today Noah had his appointment at the UCLA transplant clinic.  It was the usual visit of labs, echo, and meeting with each member of the team. The visit went great and everything looked the same. We asked our usual question of have you seen Noah's name come through for a heart. They see his name come up often but not as number one.  This just means he is close, usually within the top three for a heart his size but really no one knows when it will be his turn.  I get impatient because I want Noah to feel better, I want to not live my life in limbo,  and because I fear for his life.   However today another thought came to my mind.  I thought about Noah's future donor.   I told Jason that I don't want to be impatient.  I want to be grateful that we have this time and that Noah is doing well.  I realized somewhere out there a family gets to have more time with the child they will  one day lose,  a parent who will make the decision to give our son the gift of living more years gets to hug her baby another day.  The longer we wait the longer they have to hold and love that sweet child.  So I will be patient, I will trust, and I will be thankful.

For I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord. Romans 8:38-39

Wednesday, January 29, 2014

Recap of doctors appointments.

I wanted to update you all on the recent doctors visits for both Jason and Noah.  Jason was suppose to have a biopsy done last week but unfortunately they messed up his appointment and it is now rescheduled for February 13.  The biopsy is for a small lump that was found on his chest.  The doctors do not seem overly concerned at this point.  Given all his strange symptoms over the last few months they still would like it checked out.  Jason's appointment with the Rheumatologist went as good as it could have yesterday.  Jason had a positive ANA test and has a few markers for Lupus.  He does not have enough markers to officially diagnose him though and the ANA retest could come out negative.  They are going to retest and check his kidneys out.  If he has any other symptoms he is to go back to the doctor.  We are thankful that so far it doesn't seem to be anything serious.

Noah saw Dr. Chang and Dr. Alejos today.  There were no big changes from the last two months.  He is going to put him on a baby aspirin a day.  The doctors discussed the possibility of him having a stroke as time goes on and the need to prepare.  It's hard to believe that two years ago this week is when we started this journey for Noah.  I never would have imagined we would still be waiting but here we are.  Jason and I were talking about how nervous we were a year ago.  Jason wanted so badly to have his heart cath done before we got the call for a heart.  He just needed extra assurance and knowledge that his heart really was failing.  I think God knew we needed that extra time to wrap our minds around everything and to get to a place where we were more accepting that this was gonna be our new reality.  God has done so much work in our hearts to help us prepare.  We feel more ready now.  Ready as one can be anyway.  I don't think a parent can ever fully be ready for something like this but we are in a better place and trusting the Lord even more for his works to be displayed through this.

Thanks once again for following us along this journey.  Thanks for your constant prayers.  We are so grateful.

Wednesday, January 15, 2014

God's Love

I have been struck lately by the way God works in his people.  In the midst of such pain and heart ache God is working in the hearts of so many.  I have seen such love being poured out all around and am thankful to be part of a body of believers who are so others focused.

9 months ago one of my dearest friends was diagnosed with Leukemia.  He fought a long hard battle.  He was joyful always, he prayed continually, and he gave thanks in all circumstances.  He never looked at his disease as a life sentence but more as a calling from the Lord.  He made it his mission to love others well, to proclaim Jesus, and to see the Lord at work through his weakness.  His beautiful wife and my best friend lived the same way.  She shared countless times on her blog that the Lord is good no matter what.  That his love for us never changes.  They both urged people to taste and see that the Lord is good all while enduring pain and sorrow.  This has encouraged my soul and inspired me to keep pressing forward.  My dear sweet friend went to be with the Lord over a week ago.  He touched many lives and his memorial was filled with people.  The thing everyone will remember the most about this dear man is his love for the Lord and his love for people.

I feel that in order to be others focused.  We must first be filled with love from the Lord. 1 John 4:19 We love because he first loved us.  God demonstrated his love to us through the greatest means possible to us through the greatest means possible as an example of how to love, he didn't just say that he loves us but he actually proved it to us through his actions.  Over the last week I have seen this lived out in so many of you.  I have been the recipient of such love as well as watched my sweet friend be the recipient as well.  This is the beauty that comes from ashes.

This year has not started off very well for us and we have many things on our shoulders.  We are confident though that God is at work and just as he always does will work all things together for good. Would you please continue to lift our family up in prayer.

Jason- Jason is still being seen for the symptoms he has been having over the last six months.  He found a lump on his chest near his collar bone that will be biopsied and the doctor called last night with some lab results showing positive for auto immune stuff.  He will see the Rheumatologist soon.

Mel- We will finally be having the gene sequence panel done on the 29 of this month.  We are hopeful that this will tell us some good information for a hopeful diagnosis for me.

Noah- We continue to wait for the call and continue to see increased symptoms.  Noah had a scary chest pain that led him to fall down in the couch clenching his chest.  it is sometimes scary and we are eager for him to get his heart.

Jonah- That the lord would keep him healthy.  The sequence panel will hopefully share the genetic match up between Noah and Melody and then we can test Jonah.

Hannah-  For the timing of her next heart surgery. That God would keep sustaining this little girl.  That as her body grows it would not put strain on her heart.  

The Lord has been good to us and has been faithful to show us the ways he is at work through our situation. I want to live a life like Geoff and remember to be joyful always, pray continually, and to give thanks in all circumstances for this is God's will for us in Christ Jesus.