The Son is always there

As I write this a family is grieving over the lost of their "heart" daughter. She went to be with the Lord while her mother cradled her in her arms. As I prayed for them, with them, sent words of encouragement, it brought back so many memories of the first time we almost lost Nicholas. We almost lost Nicholas twice in one year. Twice. There is no way to describe that fear and pain of losing your baby.

It was May 4th 2007. Nicholas had his heart surgery the week before and everything went well. We were thrilled. The surgery was done. His heart was in great shape. Now it was time for him to heal so we could go home and begin our life. A few months before his surgery, Nicholas came down with RSV. It wasn't bad. He was never hospitalized. It was more like a bad cold but it did damage to his lungs and caused even more congestion than his norm. Nicholas' left lung was highly congested and kept collasping after surgery. This could have been due to the RSV. Our daughter had RSV at 2 weeks of age and now has asthma due to the damage caused by the virus.

That day Stephen and I headed to Brenner for our first trip of the day. We always went from 9-2 and then came back around 4 or 5. We had a good visit with Nicholas. He was getting fussy. I remember telling them that he wanted a bottle. I cherish that comment now. His bottle-he never got another one. When it was time to go, Nicholas kept staring at me following me with his eyes. I couldn't leave while he was watching me. It broke my heart. I asked the nurse to get his attention so he wouldn't see me leave. I will never forget my precious son's eyes watching me for the last time.

We went home and spent time with the other children. This time we brought back my mom, my father-in-law and our two sons to visit Nicholas. The boys had not seen Nicholas yet and since he was doing so well we thought it was time for a visit. Megan was with a friend. We went straight to the intercom to get buzzed in. "Nicholas' parents-we're here for a visit." Our response was "just a minute." Okay, maybe he is getting new linens or something. We wait. Again, the same response. Well, nothing can be wrong, right? He was fine when we left. I start getting nervous even though my mind says nothing is wrong. My gut says something is terribly wrong. Then a parent in the waiting room says " A baby is coding. We have to wait out here until things calm down." No, it can't be. Not my baby. Stephen starts banging on the door. "Let us in. Let us see our son." No one could tell us what was wrong because everyone was with him trying to save his life. Nicholas' room was right in front of the door. When the door opens you can see his room-walls made of glass. Finally someone opens the PICU doors. " I am so sorry but I cannot tell you anything." Stephen holds the door open so I look inside. "No!" It is my son! His room is crowded with doctors and nurses. What happened to my baby? He was fine when we left. Dear, God, please don't take my son-please!

We finally get put into a private room and "our" nurses/friends come to talk to us. We are not sure what happened. Around 4:45 he started declining. We immediately started CPR and the surgeon is still working on him. This can't be-not Nicholas. I saw the looks on our dear friends faces, our nurses, his doctors. I knew it was bad, really bad. We are losing our baby. "Dear God, how can I live without my baby?" Please, don't take him from me. Please, don't take him from us. We call our friends-we need you, he needs prayer. They all immediately come. We are surrounded by support. Nicholas is surrounded with prayer. Finally, the surgeon comes in. We have him stable. He is on ECMO, life support. His lungs had collapsed, stopped working. His heart took on too much pressure trying to take on his lungs so his heart stopped as well. Right now, he is stable. He was without oxygen for a time so he could have some damage. His body was hit really hard. There could be permanent damage to his brain, kidneys, lungs, everything may not work again. We have to wait but....right now he is stable.

We went in to see him. He was cold. They kept his body temperature cold to help prevent any further brain injury. His eyes were wide open-unseeing. It should have been scary but it was a beautiful sight! My son was alive and that was all that mattered. The next week would be a roller coaster of emotions. They thought he started having seizures, a bad sign. His organs were not working when they thought they should. "Stephen and Lisa, you need to prepare yourself that Nicholas may never come home. He may not be able to come off of life support."

I remember washing his clothes knowing this could be the last time. Looking at his bed, next to ours, knowing he may never sleep in it again. I remembered his smell. His cheek against mine. His head asleep on my shoulders. The way we used to play peek a boo in the mirror. The way he started saying "mama" right before he went into the hospital. The way he would stare at me when he had his bottle. His little finger holding mine. His voice cooing at other babies. His laugh when daddy played with him. The way he adored his big brother finding peace in his arms. His little bottom when I changed his diaper. I remembered his eyes watching me, listening when I would sing "you are my sunshine" to him. When I told him everyday "Nicholas, I love you so much. I am so proud to be your mommy. I am so proud you are my son. I will love you forever and ever."

One day, as Stephen and I drove to Brenner, I looked up to see the sun's rays shining all the way to the earth from behind a cloud. Wow, isn't that beautiful? How come I never noticed the sun's rays like that? And, I knew then. Nicholas would be okay. Maybe not like before but he would live. I felt the Lord's peace. His arms are those rays of light. Reaching down to surround us with his love and strength. His arms are always holding us even in those storms. He never leaves-he is always there. We may not be able to see him because of those storm clouds but the Son is always there. Stephen and I began to cherish those rays of lights. They always seemed to shine down on Brenner-on Nicholas' room.

Nicholas turned around that day. His organs began to work. His heart beat above the ECMO machine and he came off after a week. He did suffer a brain injury but that is okay. He has gone above and beyond what they ever said he could do.

Cherish every moment with your children. Tell them everyday day how much you love them. Read them that book for the hundredth time if that is what they ask. Go play ball instead of being "too busy" Laugh with them, enjoy life with them. Cherish them. Most of all, teach them the love of Jesus Christ. And always remember, behind those storm clouds, the Son is always there reaching out his arms like the rays of the sun, to hold us and protect us. He will never leave us.

Brandon-our little hero

Brandon-our sweet, little four year old. The third child who gives us our gray hair. The little adventurer that will take on any dare from his brother and sister. The little boy who always put everyone else before him. The brother who always thinks of his big brother and sister-always wants to buy them candy, shares everything with them, always wants a hug and kiss, and never goes one day without telling us "I love you" and "you are the bestest mommy and daddy in the whole world

The Lord blessed us with four amazing children. He knew that our three children, Stephen, Megan and Brandon would have to be strong children-loving and patient children to withstand everything they have been through. I stand amazed at my children. Their love and patience for Nicholas is astounding.

And then there is our "B"-our sweet Brandon, our little hero. Brandon was there both times Nicholas went into cardiac and respiratory arrest. The first time he was with us at the hospital. He never saw Nicholas that day but saw mommy and daddy terribly upset. The second time, a month ago, he was there with Nicholas. He saw his brother lifeless. He saw daddy run him inside to do CPR. He saw everyone crying because of the little baby-his brother-laying there lifeless. He saw the firetrucks and ambulance take his brother away to the hospital not knowing if he would see him again. How can a four year old know so much? We never realized the effect this had on Brandon until he came to me and said "Mommy, is Nicholas going to die?" "I don't want him to die, Mommy" Many nights I wake up to find him sleeping next to Nicholas. He stays by Nicholas, kissing him, patting him, singing to him, not wanting to leave his side. Our sweet Brandon-our little hero! He has been through more things than most adults have been through. Please remember Brandon in your prayers, our brave Brandon. BRANDON-YOU ARE THE BESTEST BRANDON IN THE WHOLE WORLD! Mommy and Daddy love you bunches.

Thank you to Stephen, Megan and Brandon for loving your brother Nicholas. Thank you for showing people the love of Jesus Christ through your love for Nicholas. You are all Mommy and Daddy's heroes. We are so proud to be your parents. Thank you Lord for all four of our precious miracles-we are blessed!!

Storms of Life

It is fair to say the Lisa and I have endured our share of lifes storms over the past few years. Nearly 4 years ago we lost our business, which caused financial problems of astronomical proportions that we continue to deal with. A little over 2 years ago, we learned that we were unexpectedly, expecting a 4th child. Two months later we would learn our baby boy would be diagnosed with down syndrome and 2 heart defects associated with downs. At the end of that year, I lost my mother to cancer. Last April, Nicholas had his surgery, and a week later our lives changed forever when he went into cardiac arrest. He now has a litany of physical and neurological problems because of that event.

STORMS! We all bear witness to their impact in our lives. For the believer in Christ, they shape us, mold us, prepare us for the next storm. They increase our faith and cause us to reflect on our total dependency on Christ.

No doubt as you entered this website, a song from Casting Crowns began playing, entitled "Praise you in this storm". This song came out last spring while we endured our storm and Nicholas battled for his own life. Read the following partial lyrics to this song:

I was sure by now God, You would have reached down And wiped our tears away, Stepped in and saved the day, But once again, I say "Amen", and it's still raining. And I'll praise You in this storm, And I will lift my hands, For You are who You are, No matter where I am, And every tear I've cried, You hold in Your hand, You never left my side, And though my heart is torn, I will praise You in this storm.

What an awesome picture of God's tenderness and mercy, that although He allows us to go through our storms of life, He cares so much that He holds every tear in His hand. I'm not sure there is scripture to support that picture, but I believe it to be the case.

I am reminded of Matthew 8, where Jesus and the disciples encountered a storm:

23Then he got into the boat and his disciples followed him. 24Without warning, a furious storm came up on the lake, so that the waves swept over the boat. But Jesus was sleeping. 25The disciples went and woke him, saying, "Lord, save us! We're going to drown!"
26He replied, "You of little faith, why are you so afraid?" Then he got up and rebuked the winds and the waves, and it was completely calm.
27The men were amazed and asked, "What kind of man is this? Even the winds and the waves obey him!"

Did you notice what Jesus was doing? Sleeping! How could Jesus sleep during such a furious storm? A storm so bad that waves swept into the boat and the disciples feared they would drown. I realize the typical theological summation of this event is How Jesus performed a miracle and calmed the storm. But as I read it, I suggest there is something more. Jesus slept.

How? Perhaps it was because He so abided in His Father's love and care that He was able to truly rest during the storm. I think there is a lesson there for all of us.

If you are experiencing one of those storms of life right now, my prayer is that you will be so rooted in Christ's abiding love and mercy that you will find rest.

I know that the next storm to hit the Richardson family is on the horizon. The clouds are gathering. I don't know when it will get here, or how bad it will be, but it will get here. And when it does, I pray that Lisa and I may find rest. Deep, abiding rest in our Heavenly Father's loving arms.

GJ Tubes and the power of persuasion

Less than 48 hours after our last ordeal, I would find myself again driving Nicholas to Baptist Hospital. This time, it was because his GJ tube came out. We just went through this last week. This time however, we were much calmer and knew exactly what to do. You see, a GJ tube can only be replaced by Interventional Radiology. The tube is about 8 inches long and must be thread into the jejunum(the middle part of the intestine). Nicholas is fed directly into his intestine, as opposed to his stomach due to severe reflux.

At 5:00 am the tube came out. Lisa immediately grabbed a spare g-tube and put in his belly. We decided not to rush off to the emergency room because we have learned that all they will do is make us wait until we can be seen by Interventional Radiology(IR). And, if I'm honest, it costs more. So, we continued to feed him at a slower rate directly into his belly and at 7:30, I headed for the hospital. I called (IR) on my way and this is sort of how the conversation went:

Me: I'm bringing my son in to have his GJ replaced.

Secretary: But he's not on our board today.

Me: I know that, it just came out and I'm on my way.

Secretary: But you just can't bring him in, a Doctor must let us know about it first.

Me: I don't need a Doctor to tell you my son's GJ tube came out. Trust me, it's out.

Secretary: Well...

Me: Let me speak with Ms. Bird, the unit manager. We had this problem last week and she is familar with my son.

Secretary: Ok, well, why don't you just come on in and we'll get you in as soon as possible.

Ahh, the power of knowledge. If I have learned anything in the past year, it's that red tape often hinders medical care. I have learned to be forceful when I know that the means will justify the ends.

I sat in IR no longer than 20 minutes when they came for Nicholas. 10 minutes later they were bringing him back to me. During this time, Ms. Bird the unit manager found me. She said I got the message that you were here. Glad things went more smoothly this time. I thanked her and out the door I went.

12 days, 4 hospital trips. I know it seems like a lot. But after what happened two days ago, I would take 12 hospital trips in 4 days.

And so, I continue to remember my anchor verse, 2 Cor. 1:10-11, "...On Him we have set our hope that He will continue to deliver us, as you help us by your prayers. Then many will give thanks on our behalf for the gracious favor granted us in answer to the prayers of many."

Thank you for your continued prayers.

Grace under Calamity

GRACE: the influence or spirit of God operating in humans to regenerate or strengthen them.
CALAMITY: 1. a great misfortune or disaster, as a flood or serious injury. 2. grievous affliction; adversity; misery.
PROVIDENCE: 1. the foreseeing care and guidance of God over the creatures of the earth.

Three words. Two emotions. I experienced them all yesterday. Independent and simultaneously.

It was to be a quick trip to the convenience store for gas. I loaded up Brandon and Nicholas and headed that way. Half way there I realized I had forgotten my phone. Should I go back and get it? No, it's just a quick trip, I won't need it.

After pumping, I went inside to pay for my purchase. I returned to the car, started it and looked back at Nicholas. His face was swollen, blood bubbling from his mouth, he did not appear to be breathing. I ran around and pulled him out of the car. Running inside the store I yelled to call 911, that my son was not breathing. I laid him on top of some Sprite cases. Blue and lifeless with his eyes rolled back, my son appeared dead. CALAMITY. I am certified to do CPR. I have practiced it countless times on dummies. I KNOW what to do. But in this moment, this surreal place in time, I froze. My training and experience failed me. This was not a dummy, this was my special son and he was lifeless. "Rescue breaths" someone shouted at me. "Compressions" another one yelled. And so I began CPR. No pulse, not breathing. God, please don't let Nicholas die. And I continued, surrounded by a team. No, not a team of medical experts, but a team of angels. People that God had providencially placed at that gas station, at that exact time, to assist and encourage me. GRACE. He's breathing! Praise God. Fire and EMS arrived. I demanded he be taken to Brenners. EMS said no, they couldn't wait that long. He would be going to Cone. Lisa? Where's Lisa? I called her and told her that I was at the Hess. She should have been here by now. She heard house, not Hess. I waited and waited. No Lisa. Finally I went to Westover to tell the secretary that if Lisa called or came by, to go to Cone Hospital. Chris Lewis...I saw his truck. I need Chris. I ran into Chris's office and yelled at him to come with me. Without hesitation, he came. Besides Christ and my wife, Chris has been my rock over the past year. He drove me to the hospital and I shared through tears the events of what had transpired. I would later learn that Chris had been invited to be in the same meeting that Lisa was in when I called her. For some reason, Chris declined, choosing not to go to that meeting. He was in his office at the exact time I needed him. PROVIDENCE.

We arrived at the hospital to find that Nicholas was not only alive, but doing very well. He stayed a few hours so they could monitor him. Apparently Nicholas's airway got compromised in the car seat which is not suited for him. He probably passed out first due to lack of oxygen and then everything else just shut down. But God is good. And God saw fit to allow Nicholas to continue to be a blessing to people on this earth. We are thankful, and praise Him for His goodness.

"Grace under Calamity." Maybe a better way to say it might be "God is in control". Thank you Jesus for your GRACE and PROVIDENCE in times of CALAMITY.

My Story

Hi! My name is Nicholas James. I was born on September 15th 2006 weighing in at a big 4.7 pds. I was quite a surprise for my mommy and daddy but a great one! I was born with Down syndrome and a heart defect. Mommy and daddy don't care about the Down syndrome. They say it is just a word and they love me for how God made me-perfect in His image.
On April 26th I went in to Brenner Children's hospital to have my heart repaired. I have CAVC or Complete Atrioventricular Canal Defect and Tetrology of Fallot. The surgery went really well but a week later things started changing. My lungs were filling up with fluid and started collapsing. On May 4th, I went into cardiac arrest. I had a hard time making it but thanks to the Lord and my wonderful friends at Brenner I did make it. I was without oxygen for a while so I suffered some brain injury. I stayed on life support for one week and then was able to come off. Neurology said due to my brain injury that I would never breathe, eat, laugh, cry, walk or any of those things. It wasn't humanly possible but we know that ALL things are possible through Jesus Christ!! Today I am 20 months old weighing in at 20 pounds. I am breathing on my own, trying real hard to hold my head up, I cry when I hurt and when I want to be held (and when I take a bath-I don't like those). My wonderful therapists say I am close to having a swallow test done so I can hopefuly eat soon. I have a long road ahead of me but I rely on Jesus for my strength-He will guide me through all of my journeys. My mommy, daddy, and two brothers and sister love me a whole lot and will never give up Hope for me. Mom says I am alive therefore there is always hope-Hope through Jesus Christ who loves me and gives me strength. Please continue to pray for me as I continue to progress. Thank you for all of your love and support.