Shawn Update

The surgery went very well. Shawn did not need the 2nd repair that the doctors presented to us yesterday. They had to stress his heart out a little to determine this, but ultimately, only the hole needed to be closed... that is good.

Shawn has wires in him right now that are coming out of his chest tube, and attached to a pacemaker that is laying beside him on the bed. He needs this temporary pacemaker because his heart is not beating in the right rhythm. The doctors are encouaring us that they are not particularly worried about this. His heart has been through a lot today (MINE TOO) and because of this, it may just take a few days for it to get into the right rhythm. I'll keep updated here on the blog.

Shawn is extremely uncomfortable and this is getting very hard for me. I have had to physically comfort him and hold his arms and legs down, for several hours now. He keeps kicking and the arms are flying....and well.....it's even puzzling all the medical professionals. They are uping his meds tonight and giving him something to sedate him more. I hope this helps.

Shawn has an oxygen mask on also, actually a CPAP, so it kinda looks like a cloth helmut with tubes up his nose. His ph levels are low....so they are just doing several things to get him regulated. They DID take out his breathing tube....so that is a good thing.

I don't know what else to tell you all..... just that Joe and Asher are at home tonight. I'm here with Shawn. Joe is off all week so he'll be taking Ash to school each morning, spending the day at the hospital with me and Shawn, and then back home with Asher. Spencer was with us part of today also.

I have more personal things to say but don't have the energy. And Shawn is fussing with the nurse so I am being called back to the bedside.

OH, one last thing..... I am truly praising God for the successful surgery today, ad many other things I will post about later. I'm not too tired to recognize that He has really covered us in His grace today and we are SO thankful.

Till tomorrow....

Captured

Yesterday, around these parts....was quite stormy. I have lived in Nashville my entire life. When a tornado is coming, you can smell it. Even the air changes color. Even without turning on the local weather, you can just know that you know that you know that you know..... what you know.

I have said dozens of times over the years..."it feels like a tornado".

Yesterday, not so much. The only thing really capturing my mind these past few days is Shawn, and his heart surgery next week. I have been, aloof.

So, yesterday, while the winds were brewing and the air was changing color, I was oblivious. Joe came home from work and took over with the kids while I headed out to the grocery store. I drove beneath horrific clouds (that I didn't notice). I got to the parking lot of the grocery store and wondered why people were being so weird, standing around, looking every direction. I could even see that folks had their cell phones and cameras and were taking photos. All I could really notice was a "cool" cloud....but still didn't realize what was going on. Aloof, I tell ya.

I parked and went in, did my shopping. I finished and walked out, only to notice that people were just standing around, again. They said that it had been hailing....but evidently the hail had just ceased. I didn't mind about getting wet, so I took my cart toward the car. 10 feet into my path, I began to get pummelled by hail. I bet it was a hysterical sight. I made it to the car, got the trunk open and literally tossed everything in. My goal was to get my car to some shelter....which I did, under a bank awning, one lot over. I noticed there were 2 other cars camping out there also. I got out to retrieve my beverage from the trunk, and when I opened the trunk, I saw several frozen balls of hail in the trunk and in the grocery bags. Why on earth didn't I save one to take a photo? They were so perfectly round it was if they were manufactured. Frozen balls of ice, in 60 degree weather. The hail that I touched was the size of a large grape (you know...those grapes on steroids). I showed one to the gentleman camper in the minivan near me.....we both got big eyes. He said what I always say, "it feels like a tornado".

Moments later I pulled out from under the covering of protection I had found for myself and my car. I found my way out of the parking area for this little district and got ready to make a right turn onto the highway to head home. The angle of this little road causes you to have to look very sharply over your left shoulder to be sure nothing is traveling in your path. I jerked my head to the left to see that the road was clear, and all I could see was a magnificent rainbow. The space between the clouds that the sun had found to peer through, was blinding. There were still dark clouds. It was still eery. I now realized that I was sitting all alone, in the middle of a storm. At the moment that I was about to panic, I was calmed. The moment that I almost allowed fear to take over, God's love intervened. The rainbow was so beautiful and so bright and so near....I didn't want to stop looking at it. I just sat and observed it for a while, because noone was behind me. I even let the green light pass.

Eventually at home, I saw on the news, photos of the cloud formations above the spot I was in. I couldn't believe I had been so oblivious.

Whether literally or figuratively, we are all caught in the midst of a dangerous storm from time to time. I suppose, most of the time, we are aware of the storm and we recognize that we need to seek shelter. And sometimes, the storm takes us down before we realize it was brewing right around us. I hope and pray, that for the rest of my life, I never forget to look over my shoulder, and that I will always captured by the rainbow.

Under a Tree

I took this photo from my perfect shade spot on my last day in the Dominican Republic....where we were given a few hours to see something beautiful instead of the poverty.

The sun doth not love me! To avoid the burn from the damaging rays, I found my spot under the tree. I stared at this view for about 2 hours. The waves were wild. The water was cold. The mountains in the distance seemed to tell a lie about this place. The clouds hovered above, as I imagine they always do.

We cannot always sit under the tree. We have to move about, move through, move around. The tree is not our shelter or our shield. If all we ever do is fix our eyes on the beautiful things, we will grow numb and insensitive to all that is decaying and falling away.

I don't want to hide under the tree and be safe from the elements. I want to walk into the winds and the storms and fiercly serve to spread the word of the one true Protector, Teacher, Healer, Counselor, Prince of Peace, Forgiver, Creator, The Almighty.

Emotional Gas

Yep, the title is exactly what I meant...... do you ever feel like you've got so much bottled up inside, that you're just dying to release? Go ahead, laugh. It's funny! (That's me and God cracking me up again!)

What is in me?

*Great Pampered Chef party last night. Fun. Funny. Comforting to see so many friends in one place. Yummy. A nice reprieve.
*Great bible study this morning with my dear, faithful friends....and yet most of us are going through something nearly unbearable at the moment. How would we make it through, without our Father, and without each other? Not sure that we would.
*Another blogger is battling a SEVERE heart condtion with her son currently.....and I keep following her, and praying for her son....and feeling hopeless. You can meet them at www.mycharmingkids.net They need prayer and comfort.
*I keep looking at Shawn and just trying to take him in more and more. I keep smelling him and feeling his little body cuddled against me. I keep adoring his head as it rests on my shoulder. Oh Lord please let his surgery go smoothly next Tuesday. I'm begging he be well. I'm begging.
*I am amazed at the outpouring of love coming from multiple directions.
*I am thankful for the strength and the sensitivity of my Joe.
*I miss Spencer....he is such a 19 year old.
*If I concentrate really hard, and close my eyes.....I can smell Zimbabwe, and I miss it.
*Where do all the bills come from? YUK!

I've just decided a better name for this post would have been "The Heart Fart".....but, well....... that's just not nice.

In Love Again

I crack myself up. And the Lord cracks me up too, sometimes. I have committed to myself to write more, blog more, worship more, praise more, read more scripture, love more, live more, and be more alive. No....none of that is funny.....but the funny part to me is with the blogging. I sit down in front of the computer and log on without a single idea of what I am going to write. I don't ponder it. I don't dream up of ideas to write about and I do not research hot topics like some bloggers do. I just look at the blank screen....and I'm not kidding....God gives me a title. I know....it sounds crazy. But it happens 95% of the time. The other 5% is when I just have the intention of posting some photos....and then from there I just write whatever.

Today, I looked at my blank screen (2 minutes ago) and he led me to type into the TITLE section, "In Love Again". I chuckled outloud and wondered, "what is this about?" And He is sending me 2 messages.

Message 1: (can't wait to see what He types here...)..... I am in Love with Jesus again because He has been so patient with me for the 10 years that I have dedicated my life to knowing Him....and we have finally arrived, somewhere. He is still with me. I remember the day I became a Christian and I remember how that felt in my heart. I literally felt washed, cleansed and new. It was a new me, and I was so happy to finally meet her. Last night....at church, my pastor talked about how this transformation isn't overnight....we must be intentional about growing in our relationship with God, and that we must hand over the driver's seat to Jesus.....if we are to truly surrender all will to Him, take up our cross, and follow Him, everyday. It is like losing weight, I suppose. The pounds are not going to shed in one day. It requires obedience, persistence, patience, commitment and dedication....but with these things, the transformation will occur. I can remember 10 years ago, walking downtown daily from the parking lot to the office building. I would pray every day on that walk and everyday I was praying for maturity in my faith, wisdom....I was praying for the full package. I wanted to grow and change. I wanted to have a mentor, be a mentor. I wanted to learn and to teach. I wanted to have a meaningful word to share. I remember thinking.....how long will it take me? The answer is....it is a constant goal...that will never be fully reached.....but 10 years later, I feel so much of what I wanted to feel. It is truly amazing. I read scripture now and I get excited about what I'm reading. I feel like He is talking to me. Sometimes I even hear Him. His Word is life and truth and when I read it, it rests in me, and it renews and refines me. It is the greatest part of my life. His word IS life.

Message 2 of "In Love Again" is really about my husband. Joe is just a remarkable human being and I wonder how he puts up with me. He has been helping to take care of his Dad for the past 3 weeks after he had 2 heart attacks and was diagnosed with lung cancer. Joe has helped do some of the "dirty work" and I just look at him and think.....wow God, you have really placed me in good hands with this man. Not to mention all of the other wonderful things about him..... he is just a sweet sweet man. He is really in it for better or worse, richer or poorer, in sickness and in health. I'm glad he's mine.

Haunting Numbers

9 more days.

I'm not a gloom and doom sort of person. Perhaps I used to be before I landed in the the lap of Jesus. He doesn't teach negativity or fear or failure. He doesn't teach anxiety or stress. He teaches that even in trials and trouble, there is joy.

Until the day after Shawn was born, we had no idea that he had Down syndrome. This was God being extra thoughtful. He knows how I have a tendency to worry, toss scenerios around in my head, play the "what if" game, and he knows how I lose sleep. For the first 14 hours that I held my son, he was a perfect specimen with all the hope in the world for a bright future. He would compete and play with his brother, Asher. They would be similar but different. They would grow strong and smart. They would follow their dreams and passions. They would be educated, have careers, marry sweet girls, and give me lots of grandbabies.

Day 2, age 14 hours, we learned Shawn's future would be different. He would need therapies by a host of professionals. He might have severe heart problems. He might have eating and digestive problems. He may or may not walk. He may or may not talk. He may or may not ever be able to go to the bathroom independently. He would most likely never go to school beyond 12th grade, and the liklihood of him getting married is slim. He will never be a father. He may have a job, but not a career, and he will never support himself. Shawn is still a perfect specimen, a prize, a joy, a thrill, a gift, and a blessing......just all wrapped up in an enexpected package.

Of all of the things in the list from Day 2, the only one that crushed me was, "he might have severe heart problems". To me, a heart defect could mean death. I told the doctors several times.....I'm not sure they believed me.... "all i care about is his heart....we have to make sure his heart is okay and if it is not we have to fix it!" I couldn't stand the looming possibility that we could lose this child. I still can't. Everything else.....I can handle.

The first review of his heart revealed nothing for us to be concerned about. There was but a tiny hole that should close on its own, and is very common. Year 1....I didn't worry. The beginning of year 2 revealed the hole is still there, and relatively significant in size. Year 2 would involve multipe EKG's and Echo's only to reveal time after time, the hole is not closing on its own. Surgery is necessary.

Of the heart conditions that are consistently present in children with Ds, this one is the least severe. It's just a little hole right....? The surgeons do this all the time. They can open him up and close the hole with their eyes closed, practically. It is one of the finest children's hospitals anywhere...they specialize in operating on babies his size......sure.....so the anestesia will go well. It will be unremarkable....pracitally a non-event. Mommy, Daddy, some other family and GOD GIVEN friends will be sitting a few feet away in a waiting area, just praying that nothing freakish happens. Shawn won't have an allergy to the medications....nothing foreign will fall into his chest cavity, the surgeon will not have had a fight with her spouse that morning, the surgical assistants will have had plenty of coffee, and in a perfect ideal situation, they all will have prayed for God to show up in their handiwork on this day.

I have known whis was coming for a year. I have been strong and had great faith and have not shed a tear. Since Friday, I've shed an ocean of tears, and not predicting the waves will receed. I need to get past this, through this, over this, and beyond it. It is very difficult. Because I know that God is not obligated to put a shield of protection around my son and our family. I have been devastated many times and grown from the pain. This is just one of those times that I'd rather pass on the devastation, Lord, and can we let this one go just exactly as I pray for it to?

9 days, then 8, 7, 6, 5, 4, 3, 2, 1......it is mental torture.

If you think about us, please pray for the unremarkable, non-event, piece of cake surgery, and a speedy recovery. And if you could pray for my mind to be flooded with peace in these days leading up to the surgery....I'd be so grateful. Prayer works.

Simplicity ~ Dats Where Its'At

I'm finding such joy in the simple things of life. Here, Asher is displaying his artwork. This happens to be a birthday card for our next door neighbor, Grayson. I helped Asher draw a cake, but he did all of the finishing touches. His sweet face in this photo just kills me. It isn't a typical expression of his. It sort of represents his half-proud, half-humble nod to himself. I see how much it means to him to be told "great job!", "you're so talented", "you're artwork makes mommy so happy". He's a good boy.

Shawn is enjoying sitting in a big chair, outside on our back patio. At this moment, he was going through his entire repretoire (sp?) of animal sounds. He can make sounds for monkey, duck, alligator, gorilla, lion, tiger, pig, cow....and in this photo, he is prepping his mouth for the "wubba wubba", which is basically, a puppy dog bark. It might not seem like much for a 27 month old to be able to bark... but his milestones are treasures to us.

Fresh flowers are just one way that God reminds me of His majesty. He is the most talented artist of all.

Ds in the DR

This is Maria. She lives in the Dominican Republic, and has Down syndrome, (Ds). She is 16. As soon as I spotted her out of the 50-60 kids that came to play with us the first Saturday we were there, I couldn't take my eyes off of her. Every person with Down syndrome is a learning and heartwarming experience for me. Maria was no different. We couldn't speak the same language, but we played peek-a-boo and hide & seek. She was very flirty with me. Maybe I gave her far more attention than she is used to.

This is the community she lives in, referred to as "The Hole". Poverty, drugs, HIV/Aids, and sex are the norm in her neighborhood. Saying goodbye to her was hard on my heart. In the Dominican Republic, there is no Federal Early Intervention, speech therapy, occupational therapy, physical therapy, and Susan Gray school. There are no food stamps, WIC, or unemployment compensation. It is a different world, to say the least.

Notice the garbage in her community and the hand constructed dwellings.

This is home.

Dear Mr. President

Dear President Obama,

I couldn't stay awake last night to watch your TV appearance on Leno, even though I wanted to. I am exhausted to the point of illness for the following reasons:

~ I have spent 38 hours this week showing houses in an economy where I am fully aware that my efforts may never turn into a paycheck.
~ I spent 8 days before that learning to appreciate my country more while I was serving in a 3rd world country to help build a concrete block church so that Haitian refugees can worship God, and playing with kids who do not have toys.
~ I am 11 days from taking my own 2-year-old son with Down syndrome to a hospital to have open-heart surgery to repair a defect that is common among children born with Ds. This surgical repair will make it possible for Shawn not only to live, but to be competitive and active without overworking his heart and becoming easily fatigued.

Mr. President, it is sad that you likened your bowling game to something beneath yourself, such as a "less-than-perfect" individual with physical and/or mental needs trying to be competitive in a sport. The saddest part is that you and others who make such minimalizing comments against some of our world's most incredible and precious people, influences others to think they can do the same, and that it is without pain to the people who are affected. The person with physical and/or mental challenges competing in the S.O. has such drive, determination, hope, joy, spirit, respect, courage, and love. The man with Down syndrome who bowls 3 perfect games in a row, has overcome far more to perfect that ability than any pro competitor earning a gross salary. The Special Olympics track competitor who comes in last has more respect and grace toward his/her winning competitor than anyone competing in the super-human games. The young people training and competing in the Special Olympics are not secretly enhancing their performance by using steriods to cross the finish line, or celebrating with marajuana after signing millions of dollars of endorcement deals. And finally....they don't care. They just want to belong. They want to have fun. They want to be loved, praised, accepted, celebrated, honored, and respected. You know what Barack, their goals are no different than yours, but their hearts are in the right place....even if a surgical repair is required to keep it beating.

Mr. President, my son did not hear what you said. He is 2 years old and he was asleep. But I heard what you said. I watched it back today online. I know you didn't mean to stick your foot in your mouth and you didn't mean to criticize an entire sect of our population. I know that you didn't mean to knock your popularity ratings down a notch and that you didn't desire to offend a single person. I know that you didn't use the word "retarded" and I know that all you really meant to do was to be humble about the fact that your bowling game has room for improvement. Your intention was to show humility and maybe even bring a light-heartedness to your message where the challenges you face as President, and the challenges we are facing today as over-spent, over-extended Americans, could use a little light-heartedness. But you should have known better than to ever make light of a person with special needs. You offended every mother, father, brother, sister, special education teacher, cousin, neighbor, friend, church member, and every other advocate for people with special needs.

I am a mother of 3 incredible boys. But my youngest son with Down syndrome, Shawn...HE will need me FOREVER and I cannot guarantee that I will be here as long as he is here. He may never have the opportunity to earn a living with a respectable salary. He will never be Michael Phelps or Carl Lewis or President of the United States. He may never be televised and celebrated. But his leaking heart is FULL of love and acceptance. His eyes see no discrepancies in a single other human being on this planet. His lips will speak simple and tender truth, because he may never have the capacity to manipulate or lie. His little legs will run the race that is set out for him, even though you might always be able to run faster. And as his mommy, I will run beside him, or behind him, or I will even carry him across the finish line because his joy and the joy of my other children, is my number one priority for their lives, along with teaching them to absolutely love the God that created them, in His perfect image.

You have already apologized. But you did more than offend. You have shown me that you may not be as sensitive as I thought you were. You may be not as intelligent as I thought you were. And you may not be as trustworthy as I thought you were. You didn't just make a regretable remark, you revealed something about your true character. Good luck with that in 2012.

Sincerely,

Melissa Irwin
Mother of Future Special Olympic Competitor
Nashville, TN

The Word

I am home from an 8 day trip to The Dominican Republic. I don't really have a lot of words right now. Processing takes some time. I came home with many new precious relationships with people I served alongside. I witnessed yet another part of the world that is so drastically different from The United States. Adding this experience on top of my experience in Zimbabwe, revealed to me in more clarity that it is TRUE that 93% of the world does NOT live like us. We don't just take basic provisions for granted, like water, roads, order, education, food stamps, American Red Cross, church and Emergency ambulance service.....but we down right abuse them. We don't just fail to recognize that these things are precious, but we EXPECT them to be available and to work properly. Red lights save lives. Yellow lines in the paved and smooth roads establish fair boundaries. Water fountains in public malls and other buildings are a free gift. Soap is a commodity. Strong water pressure is a blessing. Air conditioning is a luxury. These are things that I am learning to be more and more grateful for. We, as Americans, are very fortunate.

Yes, there were children in heartbreaking situations in the DR. I saw them, smelled them, held them, and will have some permanent memories of a few. Their poverty is painful to witness, as much as is the knowledge that many of them will not go to school, ever. They will be sexually active the moment the hormones kick in and their exposure to drugs will be the norm. It is sad to say the least. But what affected me most, I think....were the missionaries. The Americans who have put their entire American existence behind them to take up permanent residence to positively affect a foreign, impoverished community who has little to nothing. It is remarkable...and I haven't the words to remark. I will. God used this trip for me to show me how it is possible to walk away from the American Dream and live in Heaven's dream instead. I'm not saying we're packing our bags. But I'm not saying that we're not. I'm saying my heart is open to going where He will send us. Maybe He'll only send us to Pegram. Maybe Kentucky. Maybe Africa. Maybe Arkansas. Maybe nowhere new. But He is most certainly sending me to new depths in His love for this earth. He loves the Dominican Republic and Haiti and Zimbabwe and Darfur and Uganda and China and India and France. He just wants us all to love Him back.

So Blessed

I cannot believe that I am boarding a plane in 9 hours to fly to The Dominican Republic with a few other people from my church. I was so worked up and anxious before going to Zimbabwe...probably because (A) I had never left the country (B) I traveled alone into an unknown situation, and (C) It takes 2 whole days to get there. I have no anxiety over this trip to the DR... because (A) not only have I left the country before....I've been to frickin Africa, (b) I'm traveling into a known situation with people I am familiar with, and (c) It only takes 4 1/2 hours to fly there. Big difference.... but quite the same scenerio. I'm going to a country that has unbelievable levels of poverty. I won't state here everything that I expect....because I'd rather just tell you what I experienced, when I get back. I feel like tonight is just a regular night, but it is not. It is, once again, the night before God will do a work in my heart and in my life that He expects me to grow from. The night before He allows something to manifest in me for His greater good and His big picture purpose. What? Not sure. But it will hit me the same way Africa hit me......right in my heart. And I beg that He will never let me let go of whatever it is. I beg that He will never again allow me to be spoiled in my American ways. I beg that He will allow my heart to suffer forever from what it will feel in these far off places. I just do.

So, adios sweet people who visit here often. Say prayers please..... just for my heart to be wide open and for the Spirit to move through me...and that I not get in His way. I love my savior, our savior. I love Him. I'm so blessed and so thankful that He is allowing me to do anything at all in the poverty stricken worlds that wait for Him.

I'm so thankful for every dime that was raised by every soul that had a heart for helping to send me to The Dominican Republic. And for the record....if you helped me but have not received a thank you card from me....please let me know...because that would mean that I was not aware of your contribution. Please please please let me know if you were a part of this...(if I haven't already acknowledged you and shared my gratitude).

I'll be home soon. I'll take photos and I will write here when I get home.

Faded Lines

Ever since I've been home from Zimbabwe, I have had visible traces of the evidence for myself, that I was there. I have wanted to talk about them before, but it never came to me in simple words.

The first sign was on my feet. I wore sandals every day I was there...and I had tan lines. Funky lines, because they were funky shoes. I have appreciated the remnants of the lines since I have been home. They were a reminder to me that I went to a far off land and I did whatever I could do for the kingdom of God, in those days. I could not help but to wonder if Jesus had tan lines on His feet...I'm certain that He did....as I am certain that they never ever faded away, because He never stopped serving. He never stopped walking and spreading His good news. He never focused on anything outside of the coming Kingdom. He never did anything outside of the will of His Father. He never stopped bringing hope to the orphaned, the widowed, the broken, the lost, the hungry, the guilty, the sinful, and the sick.

The lines on my feet have faded away, completely. They are gone. I had a good cry this morning when I realized this.

The other sign of visibility that is gone, are my final bug bites. The last have healed. The itch is only slightly there....and I know that even that will be gone in a few days. There is nothing left except my memories, my photos, and the heaviness that is in my heart for the work that I am doing on The Wellspring Fund. If you haven't read about it, please do.

There is this incredibe song by Brooke Fraser....she sings about Rwanda...but the words resonate so deeply within me. I hear this song and I cry, or at the very least, my heart pounds like bricks in my chest. The entire song is amazing....but my favorite part is the chorus. "Now that I have seen, I am responsible...faith without deeds is dead; now that I have held you in my own arms, I cannot let go till you are...."

For the skeptics that do not understand The Wellspring Fund:
NOW THAT I HAVE SEEN, I AM RESPONSIBLE...FAITH WITHOUT DEEDS IS DEAD
I CANNOT LET GO


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