The Next Chapter....

It has been a little over 3 months since Matt’s life changing, altering open heart surgery. A surgery to replace a valve in his heart that he was born with that was defective. Now, with that defect his heart had not only enlarged, but it began to fail. They told him at the age of 38 that his heart was the age of an 80 year old.

So, as you all know, on January 13th he underwent open heart surgery. They split open his chest all the way down to his sternum. They pulled out his heart, put him on bypass and replaced his valve. 10 days later he came home. 6 weeks later he was back to work and just 1 week ago he began his cardio rehab. Many “look” at him and think, “Ah, he is all better, fixed, back to normal.” Sometimes I think he even has that mind set. That it is expected that he will return to the “energizer bunny” that he was. That non-stop, always moving, thinking, planning….Yet, what the eyes fail to see on the outside is not even close to what is happening and needs to happen on the inside. Remember when I said he had the heart of an 80 year old? Remember when I said that his heart had enlarged? It will take him a year or so to recover physically. His heart is still enlarged. The goal with this new valve is that his heart will strengthen and go back to it’s normal size. It will take time as he learns a new way of life….as we ALL learn and walk beside him in this new way of life and thinking.

The chapter of HEART SURGERY has closed. The journey continues as we enter the chapter of recovery and what that looks like. I can say it is a journey, and one that I am thankful to be walking beside him as his RIB.

Matt’s life verse: “I can do all things through Christ who gives me strength.” Philippians 4:13
Our family verse: “Isaiah 43:2 states, "When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze."

A PANDAS GLIMPSE

In 2004 our son was dx with Autism. In January of 2010 he was dx with PANDAS D/O after he contracted Scarlet Fever earlier in 2009. You can find out more by clicking the pages regarding PANDAS on this blog or go to http://www.oasisautism.org/

This short clip is from Joshua. It is a 2 minute glimpse into his life with PANDAS. You are only seeing 2 minutes of what he lives daily. The body tics you see are only an outward part of what has attacked his brain. When he comes in contact with anyone with strep it increases swelling in his brain that increases his symptoms....tics are only one symptom. Last Summer God opened a door and I was able to share with Joshua what PANDAS has been doing and why things were changing in his body. He get's it now....there are days of tears for him, yet he continues to press on. Our way of getting through it is saying "PANDAS ALERT!"

The son you hear in this clip is one that he chose to share with you as it is one of his favorites. The movements you see Joshua doing are not to the music as it was placed in later...these are the body tics he lives with. What you are seeing is mild today. He is on another round of antibiotics aside from the preventative he takes weekly.

He is amazing....he finds joy each day....and we love walking with him in the midst...there is always hope.

AUTISM YESTERDAY, TODAY, TOMORROW...

Saturday evening Joshua opens Daddy’s Bible on the hotel bed and finds the book of Joshua. He asks me to help him find 1:9. I sat down beside him and flipped through the delicate pages until the Bible rests open to Joshua 1. Joshua scanned the page as I led his eyes to verse 9. He began to read, “….Be strong and courageous. Do not be terrified; do not be discouraged, for the LORD your God will be with you wherever you go."

He then took a breath, and with a “chomp” of his teeth, he closed the Bible and hopped off the bed.

It's Sunday morning and we are getting ready for church. With a hop, a chomp, and a knock of the knees we are now headed to the van to begin our adventure to see and worship with old friends.

Joshua and Faith make their way to Xtreme Kidz where they are greeted with hugs. He makes his way to the climbing wall with a hop, a chomp, a chin knock to the shoulder and a snort.

Church is now over and we are having lunch with our friends. He and Toby have a great time sharing pizza and talking. Joshua looks down the long table and grabs my attention. He asks through chomps and head nods if he can share his cheese pizza with Toby. As he hears yes I see him hop in his seat and give Toby some of his pizza.

We are on the long drive home. He leans forward and says to Faith, “Hey Faith…I love you.” She responds back, “I love you too.”

He spends the next hour and a half singing, snorting, nodding, chomping and “hopping” in his seat belt.

We are finally home. What an incredible weekend we had with friends!

Joshua’s chomping increases as his chin hits one shoulder then the next. He walks down the hall stopping to knock his elbows on the wall and knock his knees together.

He is now having trouble going to bed as fear creeps into his thoughts. He begins to talk about school and feeling as if he cannot achieve anything and feeling as if he knows nothing. I begin to share with him all he knows and marvel with him of his incredible ability to know so much about things. I can see in his eyes he feels overwhelmed and he begins to cry over the anxiety. I reach over and cradle his head as he cries. I then walk him up his ladder to his loft and sit with him. His chomping and nodding are so constant he can barely get a sentence out in tact. He then looks at me, and through the anxiety of tics he says, “Mommy, do autism boys ever marry girls and do autism girls marry boys?” I answer yes. He then says, “Do autism boys marry autism girls.” I begin to tear and answer his question again with a yes. He then looks at me through chomping and states, “That is good, because we don’t laugh at each other.”

I looked deep in his brown eyes and asked him if he feels different than other people. He did not look through me as sometimes he can. His eyes engaged and he said, “Yes.”
I wish I could say that this entry has some deep meaning. Yet, today it’s just a mommy who longs to comfort her son who is struggling with his Autism. A mommy who sees her son in such anxiety that if I could…I would take it on just to give him a moment of peace.

I looked in his eyes when he said “Yes”…that he felt different and I told him that I was so thankful that God made me his mommy and that I love everything about him, especially his autism. I then reminded him of his verse in Joshua 1:9
“….Be strong and courageous. Do not be terrified; do not be discouraged, for the LORD your God will be with you wherever you go."

Life is so uncertain…yet there is one thing that is constant during the moments when fear creeps around us daily, and that is our LORD is with us wherever we go….we do not have to be terrified.

Goo Goo....Go into all the world....

Go into all the world….
I love that verse and today, as parents, we were able to not only talk about what Christ was telling us to do….we got our “sandals dirty” and let our kids be part of the action. Nothing says outreach like GOO GOO bars!

It took us 3 hours to walk to different businesses, banks, stores and gas stations here in Geneva to pass out Goo Goo bars and hand them a special invite card.

As parents, it was exciting and humbling to watch our kids begin the outreach journey of “Go into all the world…” Joshua is quite a little evangelist, which is no secret. He has been that way since giving his life to Jesus. And Faith did not want to miss any of the action. Our little “shy girl” was not afraid to walk in and give a gift and invite people to come to GCC for Easter.

“Lord, as silly as this sounds, I know to your ears it is not. Please go with each goo goo bar and the invite cards that touched the hands they were placed in. May your Spirit draw them to where they can find YOUR WATER OF LIFE! Thank You for asking us to join You today in reaching Geneva for You. May today stay in the hearts of our kids and may they continue to have a burden to reach out and share Jesus in our community and beyond. In Jesus Name…Amen.”

The passion to follow Jesus

There truly are no words that I could use to describe the intense emotion on feels when witnessing someone being baptized.

There are no words to use when it is our son except...GOD, YOU AMAZE ME, BLOW ME AWAY EVERYDAY. You captured him in your arms, placed eternity in his heart before he was even thought of and he followed that to You. I will never forget the day he first prayed to you for snow. I will never forget the day he prayed that you would provide money so we could go to McDonald's. I will never forget the day he asked you into his heart. I will never forget the days he worked hard to put his face in the water. I will never forget the first time he shared Christ with a lady at WalMart....and I will never forget this day when he shared with everyone that he was following You! Thank you for the work You have done in his life, and the work You will continue to do! I am amazed! I am humbled!

Be sure to watch the clips at the end.

Letter to Santa

This evening I walked out into the living room to see a note and cookies. Joshua was planning early. I smiled as I looked at this and at the same time I was reminded of my son’s Autism and where it has him.

I’m not talking about his mind and that he will “always be as a child.” (He has displayed incredible maturity in his thoughts. I do believe his faith in Christ will always be like a child...I don't mean immature...but rather always knowing, believing and trusting that Jesus is who He says He is. That He is his Savior and that He is the one he goes to with all his needs and praise...leaving them there and knowing that God heard him. Something many lose as they grow older.) Believe it or not, our son knows that Santa is not real. He will tell you that Santa is just a character, and that Mrs. Claus and the elves are also fake. He knows that I will be the one to eat the cookies and drink the milk. So, why put out the letter and cookies? Because that is what people do. He has watched and heard people talking about putting out cookies. There are commercials on TV about it, TV shows that do it and families tell their little ones that they need to remember to put out cookies and milk for Santa.

Our son is a mimicker. He looks to everyone for social cues. That means, he looks to you and me to see what we are doing. This is his way of coping and “fitting” into our world. Whether we do something that is appropriate or not appropriate…he will mirror back what he sees. So…the cookies and letter are a reminder to me of my son who lives with Autism, and how he longs to be part of our world and wanting to know how to live in our society and to not only relate, but have relationship.

I learn so much from Joshua that continues to draw me deeper in my relationship with Christ. Yesterday was one of them as he told everyone at church, “We all need to follow Jesus because he died on the cross for our sins and now He is alive.”

My prayer this Christmas…is that my life…my social cues will be those that draw Him deeper in his relationship with Christ.

How are you living your life? Who is watching you? People don’t have to have Autism to take on our “social cues”….how we face life, circumstances…moments that challenge our daily life. The stop light, the slow driver, snow, frustration, anger, fear, anxiety, joy, praise, humbleness…

Thank you, Lord for Joshua’s letter. Thank you for the reminder and thank you for the talk he and I had about the letter…and the talk we had about YOU. May my walk each day be one that reflects You. May it draw both my children towards You and may they fall deeply in love with YOU!

Packing and the trace of life

I am sitting here with my cut off turtle neck….okay, arms cut, not the bottom. I am so not one of those who look in the mirror and say, “Yeah, lookin’ good” until I see myself in the light. I did find it humorous the other day. I had on a sleeveless shirt, and had yet to put on my second shirt. I was standing infront of the mirror fixing my hair when Joshua walked by and said, “Oh no, your arms are naked, I cannot see that.” He is so used to me wearing two shirts and sometimes an added sweater...not exposing my arms. Sorry, I digress.

So I am sitting here taking a break from packing up the kids rooms and then off to the other areas of house, getting ready to move, realizing it was only 7 months ago that we bought this house. Making it our own, painting the rooms colors that reflected our personalities….a place to finally call “ours”. Our plan (did you catch that?) Our plan was to stay in the house for 5 years and then give it to the church, yet obviously God’s plan…is always much bigger. The church will still get the house, but we are moving on and away from where we are. The New Chapter with boxes and newspaper.

Packing is not something I enjoy. Change is not something I look for and honestly, I try to avoid…yet I continue to find myself smack in the middle of it all.

Packing…

Yet, I sit here reflecting I realize that “packing” does not totally mean you are “gone”. There is always some form of remnant, a trace left to say that you were there….or that is how it should be. I love that when Christ “packed” and went home to prepare a home for us that He left something….He left His Spirit. To comfort, to guide, to be…..

When we leave any place that we have had significant relationships in, there is something that remains whether good or bad and it touches the very lives we have spilled over onto and into. Whether it was a touch of concern, console, encouragement, sympathy, empathy, compassion, humor…it somehow remains. The truth can be said with a negative touch of bitterness, envy, hatred, gossip, pain, words of malice, being ignored….it also somehow remains.
There is a place in this world that I do not like to visit because of remnants that remain that spilled over my childhood and young adult life. On the flip side there is also another place that I love and long to one day return to, and embrace my friends….just as Paul longed to see Timothy.
My deepest prayer is that as we enter this New Chapter that our remnants that remain are ones that brought a touch of love, concern, console, encouragement, sympathy, empathy, compassion and a lot of humor. That those remnants draw you to the feet of Christ and that they truly reflect HIM. And, when we come to visit may it be as Paul to Timothy.

Please know that we love you all! Now and always.

my bro

We were separated when I was 12. My brothers and I had been together through some rough stuff in our childhood and we would always face them together, until I was 12 and my older brother and I were separated from our 2 younger brothers.

Years later when my youngest brother was 16 and was struggling with thoughts of ending his life, I came home from college to spend time with him. During that visit he shared what was told to them when we "mysteriously" were gone when they arrived home that evening. He looked at me and asked, "Why did you leave us? Why did you stop loving us?" They were told that we did not like them anymore, did not love them and we went away. We both sat there crying so many years later as we shared our stories of what really happened that day.

My brother who is a year younger than I is someone that I totally respect. If you ever have the chance to hear his story...

He amazes me.

He is the lead vocal and guitarist of the punk/grunge band, Phestur. You read correctly. His lyrics are very...colorful and I have asked him often what he was going through at the time he wrote some of them. I love his comments back, "Well sis, some is from our past, some is just going against the flow of society or what I was feeling at that time."

There is one song from his album: Downtown and Underground that I believe really hits where his heart is, what he struggles with and where many of us walk daily or feel we are. Click on Phestur - Apathy to hear the song. If that does not work click on PHESTUR and it will take you to the list of songs and albums. Scroll down until you find APATHY.

The lyrics go like this:

i stand here solemnly, transparent patiently

my heart is on my sleeve, still beating while it bleeds

there's more that you don't see, just what this does to me

blind eyes they can't escape, morals retaliate

forget what i have done, forgive me everyone.

no more can i sleep, what's sewn i have to reap
regain my self esteem, rotting inside of me

stand up and reprise, dig out from all the lies

sunbeams i feel again, on my face

forget what i have done, forgive me everyone.

Here lies the difference that we have in Christ: He will dig us out of the pit we have jumped in, been pushed in or slipped in. Psalm 40:2 He will fill us with His purpose. Jeremiah 29:11 , and He will forgive us. Psalm 103:12; 1 John 1:9

I am reminded of the words from Beth Moore's book, Get Out of That Pit when she says that people will let us down. They cannot keep us out of the pit, they cannot give us a sense of foundation or purpose...and they will fail us even in the area of forgive and forget....

As I listen to my brothers song...I know that many of you feel the same. You cannot do this alone. Know there is a Comforter, Savior, Defender, Forgiver, Sustainer, Re-newer...waiting for you to come to His feet...whether you are a follower of Christ or someone who is seeking to find that hope...He is waiting there with open arms to embrace you.